Jim’s Medical Update
From Melanie
Since my last update, Jim was treated for pneumonia. He is very susceptible now due to his compromised swallowing. He aspirates more and this causes infections in his lungs.
Jim’s right leg is failing so he is being fitted for a brace on Thursday, September 18th. It takes a tremendous amount of energy for him to walk because he has to drag his almost useless left leg and now that the right leg is failing, he is falling more and that is not a good thing. The brace will keep him walking.
Even better is Jim’s custom built, Notre Dame blue, elevating, circle turning, stop on a dime, go 6mph wheelchair is being delivered Friday, September 26th. We are very excited because this will give Jim so much freedom plus conserve what little energy he has. He will be able to go outside, get the mail, visit with neighbors, and maybe even prune his beautiful roses again!
Jim uses a BiPap-AVAPS machine to help him breathe especially when he is lying down. Because the pressure settings are so high, which makes the pressure very strong; Jim has developed a pressure wound on the bridge of his nose. This is very dangerous as any infection would compromise his health so we are going to the hospital once a week for treatment.
I have been searching for months for a new “mask”; one that could withstand the air pressure but not have to be worn so tightly that a sore developed. We tried a new full-face mask last night, it’s not perfect but there are no pressure points and it can handle the air pressure. This seems like a lot of work but the only alternative is for Jim to have a tracheotomy and be placed on a ventilator. This procedure is inevitable but we want to put that off as long as possible and as long as it doesn’t compromise Jim’s health.
I know the above sounds like a lot and, in some respects, it is but Jim is doing well and so am I. My goal is to keep him comfortable and active and so far, he is. Sometimes too active!! but always upbeat and positive.
Love to all………..until my next update,
Melanie
Wednesday, October 29, 2008
Friday, September 19, 2008
August 18, 2008
We are instituting something new with this website update, called “Jim’s Spotlight”. Every time we update on the home page on the left hand side we are going to feature someone who has influenced me in some way that should receive a little extra recognition. If they have a website, we will direct you to their website, if they don’t we’ll direct you to a page of how they influenced me.
Now, a little about me. As my disease progresses, which it is, I’m losing more and more stamina and it’s getting harder to breathe, I’d like to tell you about the most remarkable woman I’ve ever met. Why today – it’s her birthday. When I asked what she wanted she said, “For more people to consider a $1 (the least) or more to your ALS Fundraising, as they have no idea what this horrible, under funded and little known incurable disease does to the diagnosed, their families and their friends.”
As special days occur, I can tell you when you are in the downward slide of your life, special occasions become much more meaningful, it’s like crossing another barrier that you made and you made that one, now what’s the next one?
I call this lady Mother Theresa. I could fill pages of why but I’ll just outline a few things:
She helped raise her sisters at a very young age
She has always been around to help someone in need
She was there for all 4 births of one of her sister’s children’s births
She went back and forth to San Antonio for 4 years when another sister, Tina, had cancer and unfortunately passed away. One year she made 17 round trips to help take care of the children in San Antonio
She was there for my sister’s, Shawn, first birth, Prescott , and flew home after the birth. Unfortunately my sister developed some complications over night and Melanie got on a plane the next day and went back for another week.
She took care of Prescott during my sister’s second birth, Aubree, my godchild, so Alex, my brother in law and Shawn could spend more time together and didn’t have to worry about the day to day care of a 3 year old.
She and I have now taken the nieces into our home permanently to give them a better chance with their education and to open more of their possibilities than they could in Guadalajara .
During all these years she kept working
She went through 25+ years of my shenanigans
And now she’s faced with the hardest, most time consuming horrible experience of all, to take care of her dying husband, which if you haven’t read one of the past updates go back and see what a normal day is for the two of us together. And it’s only going to get worse. Does she show any of her frustrations? Nope. Her only problem is her problem she has had forever, she can’t say NO. Weddings, bridal parties, baby showers, you name it she’s always ready to help and everyone wants her because she’s so talented.
Well I found a little poem to honor her on her day:
My Loving Wife
You've been there
to laugh with me
to cry with me,
to be proud of me,
and to be happy for all
the good things in my life...
You've shared my disappointments
and listened and helped me
through difficult times.
You're
the most important part of my life...
and you always will be.
I Love you.
I give thanks to God always
for you...
I Corinthians 1:4
There’s an old expression, I’d rather be lucky than good, and I hit a grand slam on having Melanie as my wife, she truly is one in a million.
Now, a little about me. As my disease progresses, which it is, I’m losing more and more stamina and it’s getting harder to breathe, I’d like to tell you about the most remarkable woman I’ve ever met. Why today – it’s her birthday. When I asked what she wanted she said, “For more people to consider a $1 (the least) or more to your ALS Fundraising, as they have no idea what this horrible, under funded and little known incurable disease does to the diagnosed, their families and their friends.”
As special days occur, I can tell you when you are in the downward slide of your life, special occasions become much more meaningful, it’s like crossing another barrier that you made and you made that one, now what’s the next one?
I call this lady Mother Theresa. I could fill pages of why but I’ll just outline a few things:
She helped raise her sisters at a very young age
She has always been around to help someone in need
She was there for all 4 births of one of her sister’s children’s births
She went back and forth to San Antonio for 4 years when another sister, Tina, had cancer and unfortunately passed away. One year she made 17 round trips to help take care of the children in San Antonio
She was there for my sister’s, Shawn, first birth, Prescott , and flew home after the birth. Unfortunately my sister developed some complications over night and Melanie got on a plane the next day and went back for another week.
She took care of Prescott during my sister’s second birth, Aubree, my godchild, so Alex, my brother in law and Shawn could spend more time together and didn’t have to worry about the day to day care of a 3 year old.
She and I have now taken the nieces into our home permanently to give them a better chance with their education and to open more of their possibilities than they could in Guadalajara .
During all these years she kept working
She went through 25+ years of my shenanigans
And now she’s faced with the hardest, most time consuming horrible experience of all, to take care of her dying husband, which if you haven’t read one of the past updates go back and see what a normal day is for the two of us together. And it’s only going to get worse. Does she show any of her frustrations? Nope. Her only problem is her problem she has had forever, she can’t say NO. Weddings, bridal parties, baby showers, you name it she’s always ready to help and everyone wants her because she’s so talented.
Well I found a little poem to honor her on her day:
My Loving Wife
You've been there
to laugh with me
to cry with me,
to be proud of me,
and to be happy for all
the good things in my life...
You've shared my disappointments
and listened and helped me
through difficult times.
You're
the most important part of my life...
and you always will be.
I Love you.
I give thanks to God always
for you...
I Corinthians 1:4
There’s an old expression, I’d rather be lucky than good, and I hit a grand slam on having Melanie as my wife, she truly is one in a million.
Friday, August 15, 2008
August 1, 2008 Update
Medical wise I’m being fitted for a motorized wheelchair this week and a machine that can talk for me. The second is very important right now as anybody that has heard me on the phone knows it is getting quite difficult to understand me. With the machine, I listen to the caller and type in my answer and the answer comes out through the machine clearly. That helps on 2 counts: one you can understand me and two it won’t take so much air out of me. A 10 minute phone call and I’m totally winded. I will keep you updated on these.
I had a great dream last night, everybody that hasn’t donated anything yet, donated something, (the minimum is one dollar on the website). You know everybody can afford something without it changing their lives dramatically. Look at these statistics on the costs of ALS research:
1 minute of ALS Research costs = $100
10 minutes = $1000
30 minutes = $3000
60 minutes = $6000
Half day = $24,000
Full day = $48,000
Full month = $1,000,000
So you can see where every dollar counts to work on a cure for this horrible, expensive, under funded little known, incurable disease. Consider it.
Lastly I have a very good friend who sent me the following because he said this is the way you’ve lived your life ever since I’ve know you. I was touched and also thought more people should reflect on it.
There was a young woman who had been diagnosed with a terminal illness and had been given three months to live. So as she was getting her things "in order", she contacted her Pastor and had him come to her house to discuss certain aspects of her final wishes.
She told him which songs she wanted sung at the service, what scriptures she would like read, and what outfit she wanted to be buried in.
Everything was in order and the Pastor was preparing to leave when the young woman suddenly remembered something very important to her. "There's one more thing," she said excitedly.
"What's that?" came the Pastor's reply.
"This is very important," the young woman continued. "I want to be buried with a fork in my right hand."
The Pastor stood looking at the young woman, not knowing quite what to say.
"That surprises you, doesn't it?" the young woman asked.
"Well, to be honest, I'm puzzled by the request," said the
Pastor.
The young woman explained. "My grandmother once told me this story, and from that time on I have always tried to pass along its message to those I love and those who are in need of encouragement. In all my years of attending socials and dinners, I always remember that when the dishes of the main course were being cleared, someone would inevitably lean over and say, 'Keep your fork.' It was my favorite part because I knew that something better was coming...like velvety chocolate cake or deep-dish apple pie. Some thing wonderful, and with substance!'
So, I just want people to see me there in that casket with a fork in my hand and I want them to wonder "What's with the fork?" Then I want you to tell them: "Keep your fork, the best is yet to come"
The Pastor's eyes welled up with tears of joy as he hugged the young woman good-bye. He knew this would be one of the last times he would see her before her death. But he also knew that the young woman had a better grasp of heaven than he did. She had a better grasp of what heaven would be like than many people twice her age, with twice as much experience and knowledge. She KNEW that something better was coming.
At the funeral, people were walking by the young woman's casket and they saw the cloak she was wearing and the fork placed in her right hand. Over and over, the Pastor heard the question, "What's with the fork?"
And over and over he smiled.
During his message, the Pastor told the people of the conversation he had with the young woman shortly before she died. He also told them about the fork and about what it symbolized to her. He told the people how he could not stop thinking about the fork and told them that they probably would not be able to stop thinking about it either.
He was right. So the next time you reach down for your fork, let it remind you, ever so gently, that the best is yet to come. Friends are a very rare jewel indeed. They make you smile and encourage you to succeed. They lend an ear, they share a word of praise, and they always want to open their hearts to us.
Show your friends how much you care. Remember to always be there for them, even when you need them more. For you never know when it may be their time to "Keep your fork." Cherish the time you have, and the memories you share. Being friends with someone is not an opportunity but a sweet responsibility.
And keep your fork.
I had a great dream last night, everybody that hasn’t donated anything yet, donated something, (the minimum is one dollar on the website). You know everybody can afford something without it changing their lives dramatically. Look at these statistics on the costs of ALS research:
1 minute of ALS Research costs = $100
10 minutes = $1000
30 minutes = $3000
60 minutes = $6000
Half day = $24,000
Full day = $48,000
Full month = $1,000,000
So you can see where every dollar counts to work on a cure for this horrible, expensive, under funded little known, incurable disease. Consider it.
Lastly I have a very good friend who sent me the following because he said this is the way you’ve lived your life ever since I’ve know you. I was touched and also thought more people should reflect on it.
Woman and a Fork
There was a young woman who had been diagnosed with a terminal illness and had been given three months to live. So as she was getting her things "in order", she contacted her Pastor and had him come to her house to discuss certain aspects of her final wishes.
She told him which songs she wanted sung at the service, what scriptures she would like read, and what outfit she wanted to be buried in.
Everything was in order and the Pastor was preparing to leave when the young woman suddenly remembered something very important to her. "There's one more thing," she said excitedly.
"What's that?" came the Pastor's reply.
"This is very important," the young woman continued. "I want to be buried with a fork in my right hand."
The Pastor stood looking at the young woman, not knowing quite what to say.
"That surprises you, doesn't it?" the young woman asked.
"Well, to be honest, I'm puzzled by the request," said the
Pastor.
The young woman explained. "My grandmother once told me this story, and from that time on I have always tried to pass along its message to those I love and those who are in need of encouragement. In all my years of attending socials and dinners, I always remember that when the dishes of the main course were being cleared, someone would inevitably lean over and say, 'Keep your fork.' It was my favorite part because I knew that something better was coming...like velvety chocolate cake or deep-dish apple pie. Some thing wonderful, and with substance!'
So, I just want people to see me there in that casket with a fork in my hand and I want them to wonder "What's with the fork?" Then I want you to tell them: "Keep your fork, the best is yet to come"
The Pastor's eyes welled up with tears of joy as he hugged the young woman good-bye. He knew this would be one of the last times he would see her before her death. But he also knew that the young woman had a better grasp of heaven than he did. She had a better grasp of what heaven would be like than many people twice her age, with twice as much experience and knowledge. She KNEW that something better was coming.
At the funeral, people were walking by the young woman's casket and they saw the cloak she was wearing and the fork placed in her right hand. Over and over, the Pastor heard the question, "What's with the fork?"
And over and over he smiled.
During his message, the Pastor told the people of the conversation he had with the young woman shortly before she died. He also told them about the fork and about what it symbolized to her. He told the people how he could not stop thinking about the fork and told them that they probably would not be able to stop thinking about it either.
He was right. So the next time you reach down for your fork, let it remind you, ever so gently, that the best is yet to come. Friends are a very rare jewel indeed. They make you smile and encourage you to succeed. They lend an ear, they share a word of praise, and they always want to open their hearts to us.
Show your friends how much you care. Remember to always be there for them, even when you need them more. For you never know when it may be their time to "Keep your fork." Cherish the time you have, and the memories you share. Being friends with someone is not an opportunity but a sweet responsibility.
And keep your fork.
Tuesday, July 29, 2008
July 4th 2008
BODY, HEART AND SOUL
HAPPY FOURTH OF JULY
Body, heart and soul – three little words that one of the words, or two, or all three mean something to most people. All three mean a lot to me as I go through this horrible disease called ALS. My body is changing rapidly. I’m tired all the time. I am much weaker. I can’t put my socks or shoes on by myself. I have to always be careful of not tripping because my left leg is so weak. I haven’t eaten any solid food for 15 months. I have to take naps and use a machine to give me oxygen so I can talk throughout the day, as whenever I talk for awhile I have no breath left. I can’t walk upstairs unless I really push it and grab on to something. My talking is so slurry I’m embarrassed but we are getting a machine that will help with phone calls in the next couple of weeks that I’ll be able type my answers on a computer and with the speakerphone on the sound you hear will be clear and exactly what I typed, which will be great because that will extend my stamina too as talking takes so much out of me. Honestly I’m tired of the regime you saw I go through everyday in Melanie’s last update in Jim’s updates. I’ve been through a lot, 3 knee operations, and in the last 4 years: prostate cancer, hepatitis C and the year long program to get rid of it. So I know my body pretty well and it’s hard to admit that this little known, badly under funded and incurable disease is taking over my body. You all know I’ve been a fighter my whole life but this time I’m up against unbeatable odds. I’m not complaining but it ain’t fun let me tell you. That’s the body part.
Most of you know I’ve been an avid golfer since I started caddying when I was nine years old. It’s always been a huge part of my life. I even told Melanie before we were married that she would have to learn how to at least be able to get it around or you won’t be seeing me too much. I had a very good high school career, enough to be offered to a college golf powerhouse, the Florida Gators. But I declined because I desperately wanted to go to Notre Dame. Problem was no assistance of any kind, so you can read on the web site my Notre Dame story and how I got around that hurdle. I had a pretty fair college career, (I still hold the ND course record of 64 and the Notre Dame Open Tournament record of 274 (18 under par for four rounds) and a pretty good amateur career up until last year when I started tailing off a bit. I was a scratch golfer up until 4 years ago. Now this disease has taken something more away from me, it’s taken a piece of my heart. I can’t finish 18, or nine, I can just hit a few shots here and there along the way. My friends have been great and I still enjoy the friendship, the bantering and the jokes, etc. but as far as a player I’m basically done. For you that know me and how much golf has been a part of my life, this is a pretty big chunk. That’s the heart part.
The good news is that no matter what this disease does to me it will NEVER be able to take any part of my soul. I’ve lived a life basically helping people and that won’t change. I have about 50 rose bushes and of course I and my wife like them but it gives me the opportunity to be able to brighten up some people’s day that needs it. I live in a retirement area and the widows enjoy their “deliveries” so much it brings tears to your eyes. I’ve always tried to be polite to people as much as I can. I’ve always believed the more you give to other people, the more you will get in return. We live too much in I want it now, me – me – me society. It shouldn’t be that way. We’re supposed to help our fellow man.
This brings me to my last point. I’ve sent these updates out for a year now. I don’t know if people read them, have gone through the whole site or understand what I’m trying to do for as long as I possible can. I’m trying to educate people about ALS and raise money for the scientists, researchers and doctors who are desperately seeking funds to work on a cure for the disease. The problem is they can’t get pharmaceutical money because it only affects about 30,000 people in the entire US and only about 5,000 people are diagnosed per year. What’s worse is the time span from diagnosis to death is 1 to 5 years. I’ve already surpassed my “death date” from my original diagnosis Doctor. So there is no payoff for the big companies to invest millions and millions of dollars when there is no payback for them. Tough to look at it that way but as a businessman but I completely understand it. That’s why I am trying to raise as much money as I can to help the experts out, knowing that not one dime will help me.
In quite a few of my updates I’ve tried to make people aware that every dollar counts no matter what they can give. I’ve put it in as many different ways as I can think of. (Check past updates) This brings up the “one dollar means a lot to some people.”
After all these updates for almost a year I hope people are forwarding the website to their friends and contacts and are learning more about the disease.
I know its tough times for a lot of people as the economy is not the best, for many people associated with this disease the accumulation of the donated dollars is the only way this horrible, terribly under funded, little known, incurable disease will ever be able to have a chance at a cure, It will keep affecting people for no reason at all, be a tremendous strain on the diagnosed spouse, family and friends as well as being extremely expensive. Maybe it follows in the “it can’t happen to me or my family or my friends” category that many people think. Then it happens and they are in the same boat with no paddles to help. I hope that you think about that paddle and consider a donation, whatever it may be for ALS research, it’s not the amount, it’s the thought that counts.
I hope everyone had a Happy 4th of July. Enjoy the time with your family and friends and God bless you all.
HAPPY FOURTH OF JULY
Body, heart and soul – three little words that one of the words, or two, or all three mean something to most people. All three mean a lot to me as I go through this horrible disease called ALS. My body is changing rapidly. I’m tired all the time. I am much weaker. I can’t put my socks or shoes on by myself. I have to always be careful of not tripping because my left leg is so weak. I haven’t eaten any solid food for 15 months. I have to take naps and use a machine to give me oxygen so I can talk throughout the day, as whenever I talk for awhile I have no breath left. I can’t walk upstairs unless I really push it and grab on to something. My talking is so slurry I’m embarrassed but we are getting a machine that will help with phone calls in the next couple of weeks that I’ll be able type my answers on a computer and with the speakerphone on the sound you hear will be clear and exactly what I typed, which will be great because that will extend my stamina too as talking takes so much out of me. Honestly I’m tired of the regime you saw I go through everyday in Melanie’s last update in Jim’s updates. I’ve been through a lot, 3 knee operations, and in the last 4 years: prostate cancer, hepatitis C and the year long program to get rid of it. So I know my body pretty well and it’s hard to admit that this little known, badly under funded and incurable disease is taking over my body. You all know I’ve been a fighter my whole life but this time I’m up against unbeatable odds. I’m not complaining but it ain’t fun let me tell you. That’s the body part.
Most of you know I’ve been an avid golfer since I started caddying when I was nine years old. It’s always been a huge part of my life. I even told Melanie before we were married that she would have to learn how to at least be able to get it around or you won’t be seeing me too much. I had a very good high school career, enough to be offered to a college golf powerhouse, the Florida Gators. But I declined because I desperately wanted to go to Notre Dame. Problem was no assistance of any kind, so you can read on the web site my Notre Dame story and how I got around that hurdle. I had a pretty fair college career, (I still hold the ND course record of 64 and the Notre Dame Open Tournament record of 274 (18 under par for four rounds) and a pretty good amateur career up until last year when I started tailing off a bit. I was a scratch golfer up until 4 years ago. Now this disease has taken something more away from me, it’s taken a piece of my heart. I can’t finish 18, or nine, I can just hit a few shots here and there along the way. My friends have been great and I still enjoy the friendship, the bantering and the jokes, etc. but as far as a player I’m basically done. For you that know me and how much golf has been a part of my life, this is a pretty big chunk. That’s the heart part.
The good news is that no matter what this disease does to me it will NEVER be able to take any part of my soul. I’ve lived a life basically helping people and that won’t change. I have about 50 rose bushes and of course I and my wife like them but it gives me the opportunity to be able to brighten up some people’s day that needs it. I live in a retirement area and the widows enjoy their “deliveries” so much it brings tears to your eyes. I’ve always tried to be polite to people as much as I can. I’ve always believed the more you give to other people, the more you will get in return. We live too much in I want it now, me – me – me society. It shouldn’t be that way. We’re supposed to help our fellow man.
This brings me to my last point. I’ve sent these updates out for a year now. I don’t know if people read them, have gone through the whole site or understand what I’m trying to do for as long as I possible can. I’m trying to educate people about ALS and raise money for the scientists, researchers and doctors who are desperately seeking funds to work on a cure for the disease. The problem is they can’t get pharmaceutical money because it only affects about 30,000 people in the entire US and only about 5,000 people are diagnosed per year. What’s worse is the time span from diagnosis to death is 1 to 5 years. I’ve already surpassed my “death date” from my original diagnosis Doctor. So there is no payoff for the big companies to invest millions and millions of dollars when there is no payback for them. Tough to look at it that way but as a businessman but I completely understand it. That’s why I am trying to raise as much money as I can to help the experts out, knowing that not one dime will help me.
In quite a few of my updates I’ve tried to make people aware that every dollar counts no matter what they can give. I’ve put it in as many different ways as I can think of. (Check past updates) This brings up the “one dollar means a lot to some people.”
After all these updates for almost a year I hope people are forwarding the website to their friends and contacts and are learning more about the disease.
I know its tough times for a lot of people as the economy is not the best, for many people associated with this disease the accumulation of the donated dollars is the only way this horrible, terribly under funded, little known, incurable disease will ever be able to have a chance at a cure, It will keep affecting people for no reason at all, be a tremendous strain on the diagnosed spouse, family and friends as well as being extremely expensive. Maybe it follows in the “it can’t happen to me or my family or my friends” category that many people think. Then it happens and they are in the same boat with no paddles to help. I hope that you think about that paddle and consider a donation, whatever it may be for ALS research, it’s not the amount, it’s the thought that counts.
I hope everyone had a Happy 4th of July. Enjoy the time with your family and friends and God bless you all.
Saturday, July 5, 2008
May 27, 2008
Medical Update on Jim
By Melanie
We thought it was time for another medical update on Jim. It’s been 16 months since Jim’s diagnosis, one doctor thought he would be gone by now (he didn’t know Jim!!). The ALS has taken its course the way it wanted. It has progressed as they thought it would but on it’s course, or maybe I should say, Jim’s course.
Our quarterly appointment with OHSU went as expected; everyone noticing that Jim’s speech had declined substantially. So visiting with Melanie Fried-Oken, the speech pathologist was our priority. It is time for an augmentative communication device so we will visit her again in mid-June to be “fitted” for the proper computer. It will save Jim energy and his voice for when he needs it.
The ALS is causing the nerves in Jim’s diaphragm to die, thus rendering his muscles useless. Without diaphragm muscles outside equipment is necessary to breathe. At night, Jim is using a V-Pap machine which breathes for him. He now has to use it during the day sometimes when he gets tired. All of his doctors think by using both the V-Pap, and the speech device it give Jim more energy to use for the things he loves to do.
Dr. John Silver, Jim’s pulmonologist, will be his primary doctor from now on. Keeping Jim breathing and his lungs healthy are our main goals. What’s really great is Dr. Silver will also take care of Jim’s feeding tube!! Who Knew! In case it becomes infected or needs to be changed. He ordered another new machine for Jim it is called a “Cough Assist”. Because Jim is unable to cough he can not get the extra fluid and mucus out of his lungs, this machine will do that for him. (Lincare, a home medical equipment provider, is great. They have taken very good care of Jim).
There is an entire regiment of things we do each day to keep Jim healthy and happy. So, FYI, I have attached a daily schedule to give you an idea of what we do.
Time
Jim’s Daily Medical Needs:
7:00a Administer morning drugs through tube
7:30 Change feeding bag to 500ml water, set rate at 500ml/hour
8:00
9:00 Use Nebulizer
10:00 V-Pap if necessary, Cough Assist machine
11:00
12:00p Administer noon drugs through tube
1:00 V-Pap if necessary
2:00 Use Nebulizer
3:00 250ml food and water through tube
4:00
5:00 Use Nebulizer
6:00
7:00 V-Pap if necessary; Cough Assist
8:00
9:00 Administer evening drugs through tube
10:00
11:00 Hook up 1500 ml enteral bag for night time feeding, and V-Pap
12:00 Good Night
Well, that is about all I have to report. Jim and I are well and trying to be as happy as we can. You have definitely helped us to achieve that one.
Blessings to all,
Melanie
Now it’s my turn…
Wow, what a month, make sure you visit my website www.jimculveyhouse.com as my dear brother in law Alex made a lot of neat changes. There’s a short video of my life, pictures from the golf tournament and my honor by the National MDA-ALS National Division as one of the 31 people (one per day) they picked from across the country of about 35,000 people, that are fighting with their disease by doing something to help the cure for the cause during ALS Awareness Month. As you’ll see on the site May 13, 2008 will always be known as Jim Culveyhouse day.
Even though I am quite appreciative of the honor, if you know me well enough you know that has no bearing on why I’m doing what I’m doing and working so hard at it. I just pray for the day when people like me that get inflicted with the disease have some hope for a recovery instead of the incurable way it is now. People have no idea how it not only affects the inflicted one, but their spouses, their families and their friends also. And it’s going to get worse, MUCH worse.
The $23,000 the golf tournament was great and each of the pros stated they would bring a friend next year which will double the event. Our head pro, Dana Londin announced that the tournament will be perpetual taking place every year around the same time as a legacy. That makes you feel good.
We had by far our best month ever and just passed $285,000 in total donations and I can see it spreading across the country to people I don’t even know which is great. I can’t thank the people enough who have made donations no matter what the amount, every bit counts.
The minimum is a $1.00 and I know it works because I’ve received $1.00 from four different children that I’ve designated “Super Patrons” on the web site.
This is where you would put in your designated amount: https://secure.mdausa.org/jimculveyhouse/ and there it is under “other” you can give a minimum of one dollar.
Well summer is almost here and we have more events planned so keep looking at the site. If you want to be taken off my contact list just let me know at jculveyhouse.com. God bless everyone and enjoy your families and friends and remember what Memorial Day is all about..
By Melanie
We thought it was time for another medical update on Jim. It’s been 16 months since Jim’s diagnosis, one doctor thought he would be gone by now (he didn’t know Jim!!). The ALS has taken its course the way it wanted. It has progressed as they thought it would but on it’s course, or maybe I should say, Jim’s course.
Our quarterly appointment with OHSU went as expected; everyone noticing that Jim’s speech had declined substantially. So visiting with Melanie Fried-Oken, the speech pathologist was our priority. It is time for an augmentative communication device so we will visit her again in mid-June to be “fitted” for the proper computer. It will save Jim energy and his voice for when he needs it.
The ALS is causing the nerves in Jim’s diaphragm to die, thus rendering his muscles useless. Without diaphragm muscles outside equipment is necessary to breathe. At night, Jim is using a V-Pap machine which breathes for him. He now has to use it during the day sometimes when he gets tired. All of his doctors think by using both the V-Pap, and the speech device it give Jim more energy to use for the things he loves to do.
Dr. John Silver, Jim’s pulmonologist, will be his primary doctor from now on. Keeping Jim breathing and his lungs healthy are our main goals. What’s really great is Dr. Silver will also take care of Jim’s feeding tube!! Who Knew! In case it becomes infected or needs to be changed. He ordered another new machine for Jim it is called a “Cough Assist”. Because Jim is unable to cough he can not get the extra fluid and mucus out of his lungs, this machine will do that for him. (Lincare, a home medical equipment provider, is great. They have taken very good care of Jim).
There is an entire regiment of things we do each day to keep Jim healthy and happy. So, FYI, I have attached a daily schedule to give you an idea of what we do.
Time
Jim’s Daily Medical Needs:
7:00a Administer morning drugs through tube
7:30 Change feeding bag to 500ml water, set rate at 500ml/hour
8:00
9:00 Use Nebulizer
10:00 V-Pap if necessary, Cough Assist machine
11:00
12:00p Administer noon drugs through tube
1:00 V-Pap if necessary
2:00 Use Nebulizer
3:00 250ml food and water through tube
4:00
5:00 Use Nebulizer
6:00
7:00 V-Pap if necessary; Cough Assist
8:00
9:00 Administer evening drugs through tube
10:00
11:00 Hook up 1500 ml enteral bag for night time feeding, and V-Pap
12:00 Good Night
Well, that is about all I have to report. Jim and I are well and trying to be as happy as we can. You have definitely helped us to achieve that one.
Blessings to all,
Melanie
Now it’s my turn…
Wow, what a month, make sure you visit my website www.jimculveyhouse.com as my dear brother in law Alex made a lot of neat changes. There’s a short video of my life, pictures from the golf tournament and my honor by the National MDA-ALS National Division as one of the 31 people (one per day) they picked from across the country of about 35,000 people, that are fighting with their disease by doing something to help the cure for the cause during ALS Awareness Month. As you’ll see on the site May 13, 2008 will always be known as Jim Culveyhouse day.
Even though I am quite appreciative of the honor, if you know me well enough you know that has no bearing on why I’m doing what I’m doing and working so hard at it. I just pray for the day when people like me that get inflicted with the disease have some hope for a recovery instead of the incurable way it is now. People have no idea how it not only affects the inflicted one, but their spouses, their families and their friends also. And it’s going to get worse, MUCH worse.
The $23,000 the golf tournament was great and each of the pros stated they would bring a friend next year which will double the event. Our head pro, Dana Londin announced that the tournament will be perpetual taking place every year around the same time as a legacy. That makes you feel good.
We had by far our best month ever and just passed $285,000 in total donations and I can see it spreading across the country to people I don’t even know which is great. I can’t thank the people enough who have made donations no matter what the amount, every bit counts.
The minimum is a $1.00 and I know it works because I’ve received $1.00 from four different children that I’ve designated “Super Patrons” on the web site.
This is where you would put in your designated amount: https://secure.mdausa.org/jimculveyhouse/ and there it is under “other” you can give a minimum of one dollar.
Well summer is almost here and we have more events planned so keep looking at the site. If you want to be taken off my contact list just let me know at jculveyhouse.com. God bless everyone and enjoy your families and friends and remember what Memorial Day is all about..
Friday, May 30, 2008
Kicking off the month of May!
Kicking off the month of May! May 1, 2008
Most of you know my favorite expression is when you give you will always get twice in return. My payback came yesterday fourfold or more as the golf tournament Coca-Cola presents the OPGA Shootout for ALS (Lou Gehrig’s disease) hosted by Creekside Golf Club, my club, and Jim Culveyhouse, Founding Member and Oregon State spokesperson for the MDA-ALS division took place. There were 10 statewide PGA pros who participated in a golf shootout who had secured per hole pledges from their members on how far they could last. It was a wonderful event, fun to watch, the pros were great and a lot of “ribbing” went on. The best part was over $23,000 was raised for my cause – ALS research. Click here for to see pictures from the April 30th Shootout.
Today is a new day. Much more important is that it Is a special day. Thousands of people that read these updates and if I asked you what day today is, I’d bet not even 1% of you would know. Today, May 1 is the start of ALS Awareness Month and our event yesterday was the kick off event. Why is that people don’t know of ALS Awareness Month? That’s a good question and one that has bothered me for some time. Breast Cancer, Prostrate Cancer (I know, I had it and beat it), MS, etc are all terrible things and people are aware of them. Few people are aware of ALS also know as Lou Gehrig’s disease. Named after the famous Yankee ballplayer who was diagnosed in 1939 and gave a moving speech at Yankee Stadium. He died less than 2 years later. But what other famous people have died of the disease? Well, if you’re a golfer you know of Bruce Edwards, Champion golfer Tom Watson’s caddy. But ALS has affected many more people than you might be aware of.
Let me list a few names you might have heard of:
Ezzard Charles, World Boxing Champion in 1950 who beat Jersey Joe Walcott
David Niven, the actor
Jacob Javits, New York State Senator for 24 years
Jon Stone, Creator of Sesame Street
Eddie Adams, Pulitzer Prize winning photographer
Dennis Day, singer and TV personality and former Mouseketeer
Jim “Catfish” Hunter, one of baseball’s great pitchers
Jason Becker, Rock guitarist with David Lee Roth
Jeff Julian, Professional Golf Association Golfer
General Maxwell Taylor, General Commander; US Army
Mao Tse Tung, Revolutionary leader of China
Henry Miller, Vice President in the Roosevelt Administration
Charlie Wedemeyer, NFL Football player
George Yardley, NBA Basketball Hall of Famer
Michael Zazlow, Emmy winning daytime actor
So why is this horrible, incurable, disease so little known and under funded? I have a close friend whose husband died of ALS. She’s a smart lady that I respect and she finally gave me an answer that made sense and made me understand. One, ALS is incurable, most other diseases are to the most extent curable or can be treated, and ALS can’t.
ALS has a very short life span after diagnosis, most others there’s at least a chance. If you were raising funds for yourself for a transplant or something similar, that’s tangible. ALS is not, there is no cure, and funds go to research which is intangible, big difference for people giving money. Research is faceless, it doesn’t pull at people’s hearts the way making a donation to a face does. Research to a lot of people is too far removed. This close friend of mine has hit the nail on the head with my frustrations of hard it is to secure donations. I understand it; I said she’s one smart lady.
That’s why I’m including “current” pictures of me on the sight. I’m no longer that strong, athletic, full of life, always “up” and ready to do anything, anytime. I am what I am, a guy who has lost over 30 pounds, has not eaten a solid piece of food in over a year, has a very difficult time walking, is extremely hard to understand because of my slurred speech, has very little stamina, my passionate golf game is almost gone, I need a breathing machine while I sleep, etc. and all in all I feel my body deteriorating almost everyday. That’s the facts. I’m still “up” when I’m around people because I refuse to let this beat me down.
In the jobs I’ve had and contacts with friends and people I have given a lot of advice to them on a variety of matters. Now I’m asking for something in return, which isn’t my style and you all know it if you know me at all. I appreciate all the people that have donated to my fundraising campaign to raise funds for research for this horrible, incurable, little known, under funded, disease that affects not only the inflicted one but their friends and families as well. This disease is a tough one, emotionally for all around and extremely expensive and we have made in roads but not what we should have since Lou Gehrig in 1941. That’s inexcusable for a great country like America.
I’m asking sometime this month to use a little of that tax refund you might have received, or that federal rebate that everyone is getting from the government, or go to one less movie, one less Starbucks, one less good cigar, one less candy bar, one less cocktail, one less lunch out, one less pizza, etc. There are so many “little things” that you can easily give up just once or twice or three times throughout the month and give a donation to ALS research for $5 or $10 or $20 or more. In my business career I dealt in people’s personal and business cash flows on their inflow and outgo of money on a monthly basis and I never in all those years didn’t find something that every person could cut back a little if they really wanted to. That’s what I’m asking you to do for me. Remember whatever you give you get “twice in return”. Make yourself feel better and go to http://www.jimculveyhouse.com/ and give something.
Everybody can do it, I’m hoping you do.
God bless.
(Anything donated is 100% tax deductible and 100% goes to ALS research as there are no administrative costs, just my time)
Most of you know my favorite expression is when you give you will always get twice in return. My payback came yesterday fourfold or more as the golf tournament Coca-Cola presents the OPGA Shootout for ALS (Lou Gehrig’s disease) hosted by Creekside Golf Club, my club, and Jim Culveyhouse, Founding Member and Oregon State spokesperson for the MDA-ALS division took place. There were 10 statewide PGA pros who participated in a golf shootout who had secured per hole pledges from their members on how far they could last. It was a wonderful event, fun to watch, the pros were great and a lot of “ribbing” went on. The best part was over $23,000 was raised for my cause – ALS research. Click here for to see pictures from the April 30th Shootout.
Today is a new day. Much more important is that it Is a special day. Thousands of people that read these updates and if I asked you what day today is, I’d bet not even 1% of you would know. Today, May 1 is the start of ALS Awareness Month and our event yesterday was the kick off event. Why is that people don’t know of ALS Awareness Month? That’s a good question and one that has bothered me for some time. Breast Cancer, Prostrate Cancer (I know, I had it and beat it), MS, etc are all terrible things and people are aware of them. Few people are aware of ALS also know as Lou Gehrig’s disease. Named after the famous Yankee ballplayer who was diagnosed in 1939 and gave a moving speech at Yankee Stadium. He died less than 2 years later. But what other famous people have died of the disease? Well, if you’re a golfer you know of Bruce Edwards, Champion golfer Tom Watson’s caddy. But ALS has affected many more people than you might be aware of.
Let me list a few names you might have heard of:
Ezzard Charles, World Boxing Champion in 1950 who beat Jersey Joe Walcott
David Niven, the actor
Jacob Javits, New York State Senator for 24 years
Jon Stone, Creator of Sesame Street
Eddie Adams, Pulitzer Prize winning photographer
Dennis Day, singer and TV personality and former Mouseketeer
Jim “Catfish” Hunter, one of baseball’s great pitchers
Jason Becker, Rock guitarist with David Lee Roth
Jeff Julian, Professional Golf Association Golfer
General Maxwell Taylor, General Commander; US Army
Mao Tse Tung, Revolutionary leader of China
Henry Miller, Vice President in the Roosevelt Administration
Charlie Wedemeyer, NFL Football player
George Yardley, NBA Basketball Hall of Famer
Michael Zazlow, Emmy winning daytime actor
So why is this horrible, incurable, disease so little known and under funded? I have a close friend whose husband died of ALS. She’s a smart lady that I respect and she finally gave me an answer that made sense and made me understand. One, ALS is incurable, most other diseases are to the most extent curable or can be treated, and ALS can’t.
ALS has a very short life span after diagnosis, most others there’s at least a chance. If you were raising funds for yourself for a transplant or something similar, that’s tangible. ALS is not, there is no cure, and funds go to research which is intangible, big difference for people giving money. Research is faceless, it doesn’t pull at people’s hearts the way making a donation to a face does. Research to a lot of people is too far removed. This close friend of mine has hit the nail on the head with my frustrations of hard it is to secure donations. I understand it; I said she’s one smart lady.
That’s why I’m including “current” pictures of me on the sight. I’m no longer that strong, athletic, full of life, always “up” and ready to do anything, anytime. I am what I am, a guy who has lost over 30 pounds, has not eaten a solid piece of food in over a year, has a very difficult time walking, is extremely hard to understand because of my slurred speech, has very little stamina, my passionate golf game is almost gone, I need a breathing machine while I sleep, etc. and all in all I feel my body deteriorating almost everyday. That’s the facts. I’m still “up” when I’m around people because I refuse to let this beat me down.
In the jobs I’ve had and contacts with friends and people I have given a lot of advice to them on a variety of matters. Now I’m asking for something in return, which isn’t my style and you all know it if you know me at all. I appreciate all the people that have donated to my fundraising campaign to raise funds for research for this horrible, incurable, little known, under funded, disease that affects not only the inflicted one but their friends and families as well. This disease is a tough one, emotionally for all around and extremely expensive and we have made in roads but not what we should have since Lou Gehrig in 1941. That’s inexcusable for a great country like America.
I’m asking sometime this month to use a little of that tax refund you might have received, or that federal rebate that everyone is getting from the government, or go to one less movie, one less Starbucks, one less good cigar, one less candy bar, one less cocktail, one less lunch out, one less pizza, etc. There are so many “little things” that you can easily give up just once or twice or three times throughout the month and give a donation to ALS research for $5 or $10 or $20 or more. In my business career I dealt in people’s personal and business cash flows on their inflow and outgo of money on a monthly basis and I never in all those years didn’t find something that every person could cut back a little if they really wanted to. That’s what I’m asking you to do for me. Remember whatever you give you get “twice in return”. Make yourself feel better and go to http://www.jimculveyhouse.com/ and give something.
Everybody can do it, I’m hoping you do.
God bless.
(Anything donated is 100% tax deductible and 100% goes to ALS research as there are no administrative costs, just my time)
Tuesday, May 6, 2008
Top 10 best golf experiences I’ve had!
Top 10 best golf experiences I’ve had!
April 14, 2008
Mid-April is a special time for most kids involved in sports especially in the colder areas of the country and definitely if you are interested in track, tennis, baseball or golf. I was the same as any other kid growing up in Indiana. My sports were baseball and golf. No matter if there was still snow on the ground you went out and threw the ball around or hit some chip shots in the snow making believe it was sand.
For an aspiring golfer it can all be attributed to one event and especially one stretch of nine holes. The Masters, always the second week of April, and the back nine on Sunday charges golfers up like no other “spring ritual”, that happens every year. Congratulations Trevor Immelman, this year’s winner! (For my Oregon friends don’t forget the Coca-Cola OLPGA kick-off golf tournament at Creekside on April 30th, see more details on my home page on the left hand side in yellow.)
A lot of people have told me how sorry they feel for me that coming into the retirement time of my life how bad they feel that with all my good planning I won’t be able to experience the golf things I and other golfers always aspire to do once they reach retirement. Don’t feel sorry for me, I’ve had a great life and have been lucky enough to do a lot of those “retirement things” already in my life. (If you still feel sorry, go to www.jimculveyhouse.com and make a donation to ALS even if its $1.00.) Now I can spend the rest of what life I had to try and help others that are faces with my predicament. I just thank God for the things that I have been able to do.
I have a friend, Chris “Hawk” Stevens who is writing a book on my life that we are trying to finish by fall. I thought a preview of my Top 20 golf experiences would be entertaining, show how not to feel sorry for me and enjoy the short versions of stories that will be told in total detail in the book, but will be fun to read for everybody, and especially golfers. So here goes:
1. I always try to do something very special for key dates in my wife, Melanie’s life. This particular event was her 50th birthday on August 18, 2004. Even though Melanie is not exactly an accomplished golfer she always told me she would like to play one course before she died. On her 50th, we did. Pebble Beach Golf Links on the Monterey Peninsula. We played and even though it was definitely thee most expensive round of golf, by far, that I ever paid to see my wife take her clubs off the cart on 18 and walk the 18th fairway and be greeted by the pro and presented a medallion bag tag for Melanie from Pebble Beach is something I’ll cherish forever. As they say – PRICELESS!
2. Any golfers life’s dream is to one day go to the Masters. They call it the “toughest ticket in all of sports”. One year my Uncle Leonard Hauprich, brother of my grandmother and best friend “Nana”, invited me to go and spend a week with him and his dear wife. We played golf at Orangeburg Country Club, ate, drank and talked non-stop. Then came Thursday, Uncle Len’s and I were to go to the Masters, just the two of us. We left early and were there when the gates opened. Uncle Len liked two spots: Amen Corner and around 15, 16, and 7. Uncle Len was a bit older than I so he liked to stay and sit in those two spots. I wanted to see the whole course and did but always stopped to see how Uncle Len was doing. We had a great lunch together; ham and cheese or pimento and cheese sandwiches were $2.00 as well as beers in Masters plastic cup souvenir glasses. It doesn’t get any better than that. We spent the afternoon together talking and watching, it was a beautiful day. It was a dream come true and I have Uncle Len to always thank for that day as spending it with him, just the two of us was as great a day as I’d ever had.
3. When I was transferred from Cincinnati to Portland with Coca-Cola, the parent company, I made an immediate friend with one of the bottler people Chris Burskey in Portland, OR. We both loved golf, shared the same morals and ethics and he seemed like the brother I have never had. I’m sure in the book there will be countless stories as he’s remained one of my best friends. For 5 years we planned a trip to Scotland to play the top British Open courses. I’ll make this short, (read the book) but the start of the dream was teeing off on the Old Course at 12 Noon on a beautiful sunny day. I very rarely get nervous on a golf course but I did that day. This was a dream, the home of golf, where it all started and to be there with a buddy, indescribable. So many things happened but again read the book. The ending couldn’t have been scripted better; I hit a big drive, but was a bit long and on the back of the green with the pin up front. It was a little after 4PM and it’s a tradition that the townspeople get off work, they get a pint and circle the 18th green and watch the golfers coming in. As if the golf gods were looking down on me I drained that long putt for a birdie and got a big roar from the townspeople to finish with a 76. Those moments can never be repeated.
4. One of my partners that I played many two man events and was quite successful is Tommy Manz. Unfortunately Tommy has developed a type of Parkinson’s that has slowed him down a bit but we experienced a round that that not many people have had the pleasure of. Tommy had a salesman in his company that his dad lived in Monterey on 17 mile drive. Tommy got to talking to the salesman and in a whirl we were invited to play one of the hardest courses to get on in the world, Cypress Point. They have very few members and one member has to accompany each guest. We played a beautiful day and my partner was Mr. Joe Lee, a retired banker from Mellon bank. (Again read the book). The course is everything they say it is, the prettiest and most majestic and surreal course I could ever imagine. I had a hot start, 3 under after 5, but the best was when Tommy and I from the Back tees on the world famous 16th both parred the hole. Again it couldn’t have been scripted better; well maybe my birdie for 75 to win the match with my partner Mr. Lee was close as you’ve never seen a wealthy man so happy winning a quarter!
5. The Tournament Players Championship has become what a lot of people call the 5th major. (Not me) People forget that after the pros played there the first year they swore they would never come back again, it was too tough. My buddy and I, Chris Burskey, planned a trip to play this course that was so tough. As usual we played from the tips (all the way back where the pros play.) Needless to say it is a much different course today then it was then, talk about tough, no wonder the pros complained as many couldn’t break 80. One of my favorite golf stories ever was when Chris (a 12-14 handicap) birdied the 16th hole, which back then NOBODY could hit in two, he parred the 17th, the island hole; hooked his drive into the water on 18 and made a great double bogey. Tally it up, 1 over for the last three holes on one of the toughest courses around. Now what did he shoot for the course? A SMOOTH 118!
6. Melanie and I had always wanted to take a vacation to Sydney, Australia. It takes a lot of planning as it’s so far away so you might as well go for a period of time. After we sold our stores and saved up for 5 years we rented an apartment in Sydney and spent a month there. That’s the way to do it, live with the locals; it was an experience of a lifetime. We played a lot of golf but the capper was playing New South Wales. They treated us like a king and queen. They gave me a locker and the first three were Greg Norman, Steve Elkington and Robert Allenby, then me. Pretty good company! The course is as scenic as of course as I’ve ever played and that includes Pebble Beach that I’ve played many times. It was our favorite trip and to play that course was an experience we’ll never forget.
7. When my Coca-Cola buddy, Chris Burskey and I were in Scotland, we got the bright idea that since we were there, we HAD to go see THEE Open. The problem was were staying at the Marine Highland Hotel next to Troon Golf Course and THEE Open was at Muirfield which is on the complete other side of the country. No problem. We left at 3AM and drove across country, (if you’ve ever been to Scotland you can imagine the drive we had, no highways all two maybe one and half lane roads.) Well we made it as the gates opened and watched for about 4 hours, and got back in the car to drive back across the country back to the Troon area. Why you ask? We had a 4:30 tee time at Prestwick, one of the oldest clubs in Scotland and used to be part of THEE Open rotation. We made the time, barely. After 14 holes it didn’t just start raining, it was like a hurricane. You know when to quit when your bag fills up with water! (No carts there, you tote your clubs) What’s worse is the clubhouse is for members only. Well these members saw us trudging in looking like soaked rats and invited us into the men’s bar. They have tankards on the wall with their names on them. They bought us as many beers as we could consume and said we were more like the Scottish then Americans. The ultimate compliment from a Scotsman!
8. On the same trip we played the hardest course I have ever to this day played and under tough very windy conditions; Carnoustie – commonly referred to as Car-Nastie. I’ve had some pretty low rounds in my career but this was by far the best considering the course, playing where the pros play and under very windy conditions. 75 might not sound great, but believe me its the best round I’ve ever played period!
9. The first Peter Jacobsen tournament for charities was held at Portland Golf Club, (A Ryder Cup was held there one year.) Coca-Cola was a major sponsor and this was the first tournament Peter had ever put on. He knew I had met Mr. Arnold Palmer before so he wanted me to caddie for him. He asked us if we would help him in the beverage areas and also help with any marketing ideas we might be able to come up with to raise more money. Peter is about the most likeable guy you’d ever want to meet. My boss who was president, while I was Director of Sales, kind of gave me leeway to help Peter in anyway I could. I’ll never forget the day Peter came into my office and said, “Jim, we have a problem.” The problem was he had sold all the caddie uniforms to different companies. No problem there, but the companies used them as sales contests, incentives, etc. and the problem was none of the caddies knew much about golf. I said, “You’re right Peter that IS a problem.” We’re talking Greg Norman, Freddie Couples, Fuzzy Zoeller, Gary Player, Curtis Strange, Tom Watson, Peter and Arnie, not exactly slouches! Luckily I had played quite a few rounds at Portland and played many more getting yardages and even took my wife out to help me get more yardages some early evenings. I knew the course. So I told Peter to put Mr. Palmer and I in the first group each of the two days. I left little notes around the course with yardages on them for the group behind us and could obviously tell the group I was in whatever they wanted to know. It turned out great, the tournament was a grand success for many years but I remember losing 30 pounds in 2 days and working my butt off, but it was worth it!
10. I’m running out of space so in no particular order, the following are tied for tenth and will all be explained in the book. The rounds I have played the most with, Rich Mesnick, my first boss out of college and one of my best friends after 32 years of hanging around together. The rounds in Palm Springs, Hillcrest, Rancho Park and so many others you’ll have to read the book. Royal County Down, Portmarnock and Ballybunion in Ireland, Troon and North Berwick in Scotland. Riviera in LA. My 64 course record at Notre Dame and on another occasion a 274 (-18) Notre Dame Open record which both won’t be broken because they tore up 9 holes for new dormitories. The many two man tournaments another buddy, Steve Viale and I have won over the years. Between him and Tommy Manz, I’ve been blessed to have the two best tournament partners you can imagine with compliment games. My 12:30 Friday afternoon group games that a game could be written on just these; Steve Viale, Peter Juhren, Dr.Monte Morgan and the one and only Steve “Reno” Rentfro. My 64 from the blue tees at Creekside, my home course. All the wonderful people I’ve met on the golf course where you really learn about a person. I know I’ve missed many others but again read the book, they will be in there.
I hope you’ve enjoyed reading these little stories. May is ALS month, some of you have received tax refunds, and all of you are receiving a government “stimulus” refund. Make yourself feel good, whatever you give you get twice in return. You can contribute as low as ONE Dollar to the ALS research campaign at www.jimculveyhouse.com. Please consider it. Here’s to spring!
April 14, 2008
Mid-April is a special time for most kids involved in sports especially in the colder areas of the country and definitely if you are interested in track, tennis, baseball or golf. I was the same as any other kid growing up in Indiana. My sports were baseball and golf. No matter if there was still snow on the ground you went out and threw the ball around or hit some chip shots in the snow making believe it was sand.
For an aspiring golfer it can all be attributed to one event and especially one stretch of nine holes. The Masters, always the second week of April, and the back nine on Sunday charges golfers up like no other “spring ritual”, that happens every year. Congratulations Trevor Immelman, this year’s winner! (For my Oregon friends don’t forget the Coca-Cola OLPGA kick-off golf tournament at Creekside on April 30th, see more details on my home page on the left hand side in yellow.)
A lot of people have told me how sorry they feel for me that coming into the retirement time of my life how bad they feel that with all my good planning I won’t be able to experience the golf things I and other golfers always aspire to do once they reach retirement. Don’t feel sorry for me, I’ve had a great life and have been lucky enough to do a lot of those “retirement things” already in my life. (If you still feel sorry, go to www.jimculveyhouse.com and make a donation to ALS even if its $1.00.) Now I can spend the rest of what life I had to try and help others that are faces with my predicament. I just thank God for the things that I have been able to do.
I have a friend, Chris “Hawk” Stevens who is writing a book on my life that we are trying to finish by fall. I thought a preview of my Top 20 golf experiences would be entertaining, show how not to feel sorry for me and enjoy the short versions of stories that will be told in total detail in the book, but will be fun to read for everybody, and especially golfers. So here goes:
1. I always try to do something very special for key dates in my wife, Melanie’s life. This particular event was her 50th birthday on August 18, 2004. Even though Melanie is not exactly an accomplished golfer she always told me she would like to play one course before she died. On her 50th, we did. Pebble Beach Golf Links on the Monterey Peninsula. We played and even though it was definitely thee most expensive round of golf, by far, that I ever paid to see my wife take her clubs off the cart on 18 and walk the 18th fairway and be greeted by the pro and presented a medallion bag tag for Melanie from Pebble Beach is something I’ll cherish forever. As they say – PRICELESS!
2. Any golfers life’s dream is to one day go to the Masters. They call it the “toughest ticket in all of sports”. One year my Uncle Leonard Hauprich, brother of my grandmother and best friend “Nana”, invited me to go and spend a week with him and his dear wife. We played golf at Orangeburg Country Club, ate, drank and talked non-stop. Then came Thursday, Uncle Len’s and I were to go to the Masters, just the two of us. We left early and were there when the gates opened. Uncle Len liked two spots: Amen Corner and around 15, 16, and 7. Uncle Len was a bit older than I so he liked to stay and sit in those two spots. I wanted to see the whole course and did but always stopped to see how Uncle Len was doing. We had a great lunch together; ham and cheese or pimento and cheese sandwiches were $2.00 as well as beers in Masters plastic cup souvenir glasses. It doesn’t get any better than that. We spent the afternoon together talking and watching, it was a beautiful day. It was a dream come true and I have Uncle Len to always thank for that day as spending it with him, just the two of us was as great a day as I’d ever had.
3. When I was transferred from Cincinnati to Portland with Coca-Cola, the parent company, I made an immediate friend with one of the bottler people Chris Burskey in Portland, OR. We both loved golf, shared the same morals and ethics and he seemed like the brother I have never had. I’m sure in the book there will be countless stories as he’s remained one of my best friends. For 5 years we planned a trip to Scotland to play the top British Open courses. I’ll make this short, (read the book) but the start of the dream was teeing off on the Old Course at 12 Noon on a beautiful sunny day. I very rarely get nervous on a golf course but I did that day. This was a dream, the home of golf, where it all started and to be there with a buddy, indescribable. So many things happened but again read the book. The ending couldn’t have been scripted better; I hit a big drive, but was a bit long and on the back of the green with the pin up front. It was a little after 4PM and it’s a tradition that the townspeople get off work, they get a pint and circle the 18th green and watch the golfers coming in. As if the golf gods were looking down on me I drained that long putt for a birdie and got a big roar from the townspeople to finish with a 76. Those moments can never be repeated.
4. One of my partners that I played many two man events and was quite successful is Tommy Manz. Unfortunately Tommy has developed a type of Parkinson’s that has slowed him down a bit but we experienced a round that that not many people have had the pleasure of. Tommy had a salesman in his company that his dad lived in Monterey on 17 mile drive. Tommy got to talking to the salesman and in a whirl we were invited to play one of the hardest courses to get on in the world, Cypress Point. They have very few members and one member has to accompany each guest. We played a beautiful day and my partner was Mr. Joe Lee, a retired banker from Mellon bank. (Again read the book). The course is everything they say it is, the prettiest and most majestic and surreal course I could ever imagine. I had a hot start, 3 under after 5, but the best was when Tommy and I from the Back tees on the world famous 16th both parred the hole. Again it couldn’t have been scripted better; well maybe my birdie for 75 to win the match with my partner Mr. Lee was close as you’ve never seen a wealthy man so happy winning a quarter!
5. The Tournament Players Championship has become what a lot of people call the 5th major. (Not me) People forget that after the pros played there the first year they swore they would never come back again, it was too tough. My buddy and I, Chris Burskey, planned a trip to play this course that was so tough. As usual we played from the tips (all the way back where the pros play.) Needless to say it is a much different course today then it was then, talk about tough, no wonder the pros complained as many couldn’t break 80. One of my favorite golf stories ever was when Chris (a 12-14 handicap) birdied the 16th hole, which back then NOBODY could hit in two, he parred the 17th, the island hole; hooked his drive into the water on 18 and made a great double bogey. Tally it up, 1 over for the last three holes on one of the toughest courses around. Now what did he shoot for the course? A SMOOTH 118!
6. Melanie and I had always wanted to take a vacation to Sydney, Australia. It takes a lot of planning as it’s so far away so you might as well go for a period of time. After we sold our stores and saved up for 5 years we rented an apartment in Sydney and spent a month there. That’s the way to do it, live with the locals; it was an experience of a lifetime. We played a lot of golf but the capper was playing New South Wales. They treated us like a king and queen. They gave me a locker and the first three were Greg Norman, Steve Elkington and Robert Allenby, then me. Pretty good company! The course is as scenic as of course as I’ve ever played and that includes Pebble Beach that I’ve played many times. It was our favorite trip and to play that course was an experience we’ll never forget.
7. When my Coca-Cola buddy, Chris Burskey and I were in Scotland, we got the bright idea that since we were there, we HAD to go see THEE Open. The problem was were staying at the Marine Highland Hotel next to Troon Golf Course and THEE Open was at Muirfield which is on the complete other side of the country. No problem. We left at 3AM and drove across country, (if you’ve ever been to Scotland you can imagine the drive we had, no highways all two maybe one and half lane roads.) Well we made it as the gates opened and watched for about 4 hours, and got back in the car to drive back across the country back to the Troon area. Why you ask? We had a 4:30 tee time at Prestwick, one of the oldest clubs in Scotland and used to be part of THEE Open rotation. We made the time, barely. After 14 holes it didn’t just start raining, it was like a hurricane. You know when to quit when your bag fills up with water! (No carts there, you tote your clubs) What’s worse is the clubhouse is for members only. Well these members saw us trudging in looking like soaked rats and invited us into the men’s bar. They have tankards on the wall with their names on them. They bought us as many beers as we could consume and said we were more like the Scottish then Americans. The ultimate compliment from a Scotsman!
8. On the same trip we played the hardest course I have ever to this day played and under tough very windy conditions; Carnoustie – commonly referred to as Car-Nastie. I’ve had some pretty low rounds in my career but this was by far the best considering the course, playing where the pros play and under very windy conditions. 75 might not sound great, but believe me its the best round I’ve ever played period!
9. The first Peter Jacobsen tournament for charities was held at Portland Golf Club, (A Ryder Cup was held there one year.) Coca-Cola was a major sponsor and this was the first tournament Peter had ever put on. He knew I had met Mr. Arnold Palmer before so he wanted me to caddie for him. He asked us if we would help him in the beverage areas and also help with any marketing ideas we might be able to come up with to raise more money. Peter is about the most likeable guy you’d ever want to meet. My boss who was president, while I was Director of Sales, kind of gave me leeway to help Peter in anyway I could. I’ll never forget the day Peter came into my office and said, “Jim, we have a problem.” The problem was he had sold all the caddie uniforms to different companies. No problem there, but the companies used them as sales contests, incentives, etc. and the problem was none of the caddies knew much about golf. I said, “You’re right Peter that IS a problem.” We’re talking Greg Norman, Freddie Couples, Fuzzy Zoeller, Gary Player, Curtis Strange, Tom Watson, Peter and Arnie, not exactly slouches! Luckily I had played quite a few rounds at Portland and played many more getting yardages and even took my wife out to help me get more yardages some early evenings. I knew the course. So I told Peter to put Mr. Palmer and I in the first group each of the two days. I left little notes around the course with yardages on them for the group behind us and could obviously tell the group I was in whatever they wanted to know. It turned out great, the tournament was a grand success for many years but I remember losing 30 pounds in 2 days and working my butt off, but it was worth it!
10. I’m running out of space so in no particular order, the following are tied for tenth and will all be explained in the book. The rounds I have played the most with, Rich Mesnick, my first boss out of college and one of my best friends after 32 years of hanging around together. The rounds in Palm Springs, Hillcrest, Rancho Park and so many others you’ll have to read the book. Royal County Down, Portmarnock and Ballybunion in Ireland, Troon and North Berwick in Scotland. Riviera in LA. My 64 course record at Notre Dame and on another occasion a 274 (-18) Notre Dame Open record which both won’t be broken because they tore up 9 holes for new dormitories. The many two man tournaments another buddy, Steve Viale and I have won over the years. Between him and Tommy Manz, I’ve been blessed to have the two best tournament partners you can imagine with compliment games. My 12:30 Friday afternoon group games that a game could be written on just these; Steve Viale, Peter Juhren, Dr.Monte Morgan and the one and only Steve “Reno” Rentfro. My 64 from the blue tees at Creekside, my home course. All the wonderful people I’ve met on the golf course where you really learn about a person. I know I’ve missed many others but again read the book, they will be in there.
I hope you’ve enjoyed reading these little stories. May is ALS month, some of you have received tax refunds, and all of you are receiving a government “stimulus” refund. Make yourself feel good, whatever you give you get twice in return. You can contribute as low as ONE Dollar to the ALS research campaign at www.jimculveyhouse.com. Please consider it. Here’s to spring!
The Second Best Day Ever!
The Second Best Day ever!
March 26, 2008
When I was diagnosed with ALS in February of 2007 it was the shock of Melanie and my lives. To hear I probably had it for about a year really hit home. With my type of ALS the average lifespan is only 2-5 years. Tom Watson’s (the Championship pro golfer) caddy, Bruce Edwards, didn’t even last two years and I have the exact same type. I told the doctors to do what they had to do so that I can make it to March 26, 2008. Why you may ask? So I could make 25 years with the love of my life.
At our wedding twenty five years ago you could have received long odds that this day would never have happened, but our love kept growing and we’ve become quite a team and I am the luckiest man alive (to borrow Lou Gherig’s phrase at Yankee Stadium) to ever meet and marry someone like Melanie.
Thank you God, you truly blessed me and I appreciate it.
Click here to read the ad I placed in the Statesman Journal to Melanie’s Surprise!
Click here to give to ALS research.
March 26, 2008
When I was diagnosed with ALS in February of 2007 it was the shock of Melanie and my lives. To hear I probably had it for about a year really hit home. With my type of ALS the average lifespan is only 2-5 years. Tom Watson’s (the Championship pro golfer) caddy, Bruce Edwards, didn’t even last two years and I have the exact same type. I told the doctors to do what they had to do so that I can make it to March 26, 2008. Why you may ask? So I could make 25 years with the love of my life.
At our wedding twenty five years ago you could have received long odds that this day would never have happened, but our love kept growing and we’ve become quite a team and I am the luckiest man alive (to borrow Lou Gherig’s phrase at Yankee Stadium) to ever meet and marry someone like Melanie.
Thank you God, you truly blessed me and I appreciate it.
Click here to read the ad I placed in the Statesman Journal to Melanie’s Surprise!
Click here to give to ALS research.
Happy St. Patrick's Day!
Happy St. Patrick's Day!
March 17, 2008 update
First of all, if you could all say a little prayer for my Mom in Phoenix. She has gone through two brain surgeries in the past two weeks, it would be much appreciated.
This week will be a busy one. My two darling nieces; Sara and Pari are coming Tuesday for 9 days from Guadalajara to visit. My sister Shawn, her husband Alex (my “Webmeister”, he’s German!), 5 year old nephew Prescott and my 10 month old goddaughter Aubree are coming Wednesday to spend Easter with us. A packed house but it will be great having family around. The only negative is Melanie broke her foot Thursday and is in a cast for 6 weeks. Boy, what a pair we are!
I’m doing OK, good days and bad days, but the fundraising really keeps me going. We have now surpassed $250,000 and with 4 events on the drawing board, 2 booked. We are excited about the future.
On April 30th, my good friend, (and best man in our wedding) Jim Terry from Coca-Cola is sponsoring a golf event at my club Creekside here in Salem. Dana Londin, our head PGA pro has spearheaded the event and it’s going to be a blast as well as a big fundraiser. Twenty of the top PGA pros in Oregon will be playing a 2 man alternate shot “shoot out”, securing pledges from members of their clubs. The event is open to the public with free admission and we have other things that will generate funds for ALS research that day. We’re all excited about it and can’t thank Dana enough for spending so much time on making it a success.
We have also secured a golf and auction event in Las Vegas on November 3, 2008 at TPC Summerlin, where they hold a PGA tournament. Keep checking for updates on the website for other events we are working on.
A few articles were written about my endeavor to raise money for ALS. They were well written. Please take a moment to read them.
The Chekmeketa Courier on March 14th 2008 Click here.
The Statesman Journal
Feb 28th Click here!
I want to wish everyone a safe and Happy Easter Weekend.
In the spirit of St. Patricks Day an old Irish Proverb for you:
“May you live as long as you want, and never want as long as you live!”
Click here to give to ALS research.
March 17, 2008 update
First of all, if you could all say a little prayer for my Mom in Phoenix. She has gone through two brain surgeries in the past two weeks, it would be much appreciated.
This week will be a busy one. My two darling nieces; Sara and Pari are coming Tuesday for 9 days from Guadalajara to visit. My sister Shawn, her husband Alex (my “Webmeister”, he’s German!), 5 year old nephew Prescott and my 10 month old goddaughter Aubree are coming Wednesday to spend Easter with us. A packed house but it will be great having family around. The only negative is Melanie broke her foot Thursday and is in a cast for 6 weeks. Boy, what a pair we are!
I’m doing OK, good days and bad days, but the fundraising really keeps me going. We have now surpassed $250,000 and with 4 events on the drawing board, 2 booked. We are excited about the future.
On April 30th, my good friend, (and best man in our wedding) Jim Terry from Coca-Cola is sponsoring a golf event at my club Creekside here in Salem. Dana Londin, our head PGA pro has spearheaded the event and it’s going to be a blast as well as a big fundraiser. Twenty of the top PGA pros in Oregon will be playing a 2 man alternate shot “shoot out”, securing pledges from members of their clubs. The event is open to the public with free admission and we have other things that will generate funds for ALS research that day. We’re all excited about it and can’t thank Dana enough for spending so much time on making it a success.
We have also secured a golf and auction event in Las Vegas on November 3, 2008 at TPC Summerlin, where they hold a PGA tournament. Keep checking for updates on the website for other events we are working on.
A few articles were written about my endeavor to raise money for ALS. They were well written. Please take a moment to read them.
The Chekmeketa Courier on March 14th 2008 Click here.
The Statesman Journal
Feb 28th Click here!
I want to wish everyone a safe and Happy Easter Weekend.
In the spirit of St. Patricks Day an old Irish Proverb for you:
“May you live as long as you want, and never want as long as you live!”
Click here to give to ALS research.
Update on Jim from Melanie 2-19-08
Update on Jim from Melanie 2-19-08
It has been a little over a month since Jim’s 54th birthday and his last update. He has been diligently working on fundraising for ALS. He is closing in on $250,000. Not a surprise to anyone who knows Jim in fact, one of his many nicknames is “Grinder.”
We traveled to Las Vegas from February 2nd to February 10th. We stayed with friends and family. Jim’s first boss, after graduating from college, was Rich Mesnick. Jim and Rich, “Mes,” have remained friends all through the years. When Rich retired from Gallo Wines, he moved to Las Vegas . Jim’s sister and family, Shawn and Alex Herzog , son Prescott and daughter Aubree (Jim’s goddaughter) also live in Las Vegas . We see Las Vegas very differently from most as we only see the Strip when we are arriving or leaving the airport!
This trip was extra special because another very close family friend, Chris Burskey, drove to Las Vegas from his home in Surprise, Arizona (yes, that is the name!) The weather was great, the sun was shining and we were surrounded by family and friends. It doesn’t get any better.
The “boys” played golf at Canyon Gate Country Club. Jim played all 18 holes (from the BLUE tees), played every shot and scored a 102. He was exhausted but he said he just couldn’t stop because he was having so much fun. For any of you who play golf, it is truly amazing that Jim is able to play. He wears a leg brace, has lost much of the strength in his neck (making it very difficult to hold his head up) and he has no back swing! But, that doesn’t stop him from playing a sport he loves.
While in Vegas, Jim and Mes met with the Muscular Dystrophy Association to talk about the fundraising golf tournament they are doing this year. It was a very successful meeting and we will have more information on this event at a later date.
Mentally, Jim is the strongest person I know. He continues to inspire and amaze me everyday. Physically, the ALS is marching on. His ability to speak gets hard each day. We are getting new software that will allow him to talk through his computer when he gets tired or understanding him gets too difficult. Go to www.talkforme.com and you can test the software yourself. We visited the Pulmonologist today and unfortunately Jim’s breathing test results were not good. His FVC (forced volume capacity) was down from 83% to 59%, this was a big drop. What it means is the ALS is affecting his diaphragm muscles and his ability to breath. Dr. Silver prescribed a new breathing machine for sleeping; he wants Jim to use a Nebulizer 3 times per day and hopefully we can stabilize him for awhile.
I have rambled on too much. We thank each and every one of you for your concern for Jim and me. Please continue to help Jim in his fight to find a cure of ALS.
God Bless,
Melanie Culveyhouse
See some pictures of our trip to Las Vegas. We are using www.snapfish.com. You don’t need an account to see the pictures, just click on yellow view now button near the top of the page after clicking here!
Click here to give to ALS research.
It has been a little over a month since Jim’s 54th birthday and his last update. He has been diligently working on fundraising for ALS. He is closing in on $250,000. Not a surprise to anyone who knows Jim in fact, one of his many nicknames is “Grinder.”
We traveled to Las Vegas from February 2nd to February 10th. We stayed with friends and family. Jim’s first boss, after graduating from college, was Rich Mesnick. Jim and Rich, “Mes,” have remained friends all through the years. When Rich retired from Gallo Wines, he moved to Las Vegas . Jim’s sister and family, Shawn and Alex Herzog , son Prescott and daughter Aubree (Jim’s goddaughter) also live in Las Vegas . We see Las Vegas very differently from most as we only see the Strip when we are arriving or leaving the airport!
This trip was extra special because another very close family friend, Chris Burskey, drove to Las Vegas from his home in Surprise, Arizona (yes, that is the name!) The weather was great, the sun was shining and we were surrounded by family and friends. It doesn’t get any better.
The “boys” played golf at Canyon Gate Country Club. Jim played all 18 holes (from the BLUE tees), played every shot and scored a 102. He was exhausted but he said he just couldn’t stop because he was having so much fun. For any of you who play golf, it is truly amazing that Jim is able to play. He wears a leg brace, has lost much of the strength in his neck (making it very difficult to hold his head up) and he has no back swing! But, that doesn’t stop him from playing a sport he loves.
While in Vegas, Jim and Mes met with the Muscular Dystrophy Association to talk about the fundraising golf tournament they are doing this year. It was a very successful meeting and we will have more information on this event at a later date.
Mentally, Jim is the strongest person I know. He continues to inspire and amaze me everyday. Physically, the ALS is marching on. His ability to speak gets hard each day. We are getting new software that will allow him to talk through his computer when he gets tired or understanding him gets too difficult. Go to www.talkforme.com and you can test the software yourself. We visited the Pulmonologist today and unfortunately Jim’s breathing test results were not good. His FVC (forced volume capacity) was down from 83% to 59%, this was a big drop. What it means is the ALS is affecting his diaphragm muscles and his ability to breath. Dr. Silver prescribed a new breathing machine for sleeping; he wants Jim to use a Nebulizer 3 times per day and hopefully we can stabilize him for awhile.
I have rambled on too much. We thank each and every one of you for your concern for Jim and me. Please continue to help Jim in his fight to find a cure of ALS.
God Bless,
Melanie Culveyhouse
See some pictures of our trip to Las Vegas. We are using www.snapfish.com. You don’t need an account to see the pictures, just click on yellow view now button near the top of the page after clicking here!
Click here to give to ALS research.
January 13, 2008
My 54th Birthday!
Well I made it to 54 today, hooray for me. Even though the last year has been tough there have been a lot of wonderful moments, a new goddaughter and niece - Aubree, laughs, and good times and that’s what’s important. You need to enjoy the moment; you never know when it will be taken away from you.
For 16 years at the community college I taught at, one of the subjects I taught was goal setting and more importantly writing them down. I learned this from a good friend, a brilliant marketer and author, Carolyn Gorsuch here in Salem, OR a long time ago. Every year you need to analyze these goals, both short time and long; and adjust them as life changes. Obviously mine have, so practicing what I preached, here goes:
Short Term
· Somehow I want to do more to get more people to donate, something, anything, to ALS research. If all the people that receive this and haven’t yet donated just $20 it would mean over $20,000 to help find a cure. The website: http://www.jimculveyhouse.com/ is set up where you can give as low as ONE dollar and I’ve had 4 of those from children and just like everybody else I sent a personal thank you note to them too. Must have good parents!
· I hope my 3 month check-up at OHSU goes well Tuesday in Portland, OR.
· February 14th is Valentines Day and its going to be special so I can tell my Mother Theresa of a wife, Melanie, that she has come through like a trouper and even though its going to get much worse I know she’ll be their for me and that is something very special.
March 26th is as special as a day as it comes. Melanie and I are celebrating our 25th wedding anniversary. Believe me there were many (OK most) people at our wedding that would have taken long odds this day would never come!
I’d say that about does it for the first quarter of 2008, I’ll be updating you hopefully every month. Oh yea I forgot:
Long Term
· I hope everyone spends a little more time with their significant others, their children, their families, and their friends. Be kinder to people. Listen more, there is a reason God gave us two ears and one mouth. I truly believe the more you give, the more you get in return. God bless you all!
Click here to give to ALS research.
My 54th Birthday!
Well I made it to 54 today, hooray for me. Even though the last year has been tough there have been a lot of wonderful moments, a new goddaughter and niece - Aubree, laughs, and good times and that’s what’s important. You need to enjoy the moment; you never know when it will be taken away from you.
For 16 years at the community college I taught at, one of the subjects I taught was goal setting and more importantly writing them down. I learned this from a good friend, a brilliant marketer and author, Carolyn Gorsuch here in Salem, OR a long time ago. Every year you need to analyze these goals, both short time and long; and adjust them as life changes. Obviously mine have, so practicing what I preached, here goes:
Short Term
· Somehow I want to do more to get more people to donate, something, anything, to ALS research. If all the people that receive this and haven’t yet donated just $20 it would mean over $20,000 to help find a cure. The website: http://www.jimculveyhouse.com/ is set up where you can give as low as ONE dollar and I’ve had 4 of those from children and just like everybody else I sent a personal thank you note to them too. Must have good parents!
· I hope my 3 month check-up at OHSU goes well Tuesday in Portland, OR.
· February 14th is Valentines Day and its going to be special so I can tell my Mother Theresa of a wife, Melanie, that she has come through like a trouper and even though its going to get much worse I know she’ll be their for me and that is something very special.
March 26th is as special as a day as it comes. Melanie and I are celebrating our 25th wedding anniversary. Believe me there were many (OK most) people at our wedding that would have taken long odds this day would never come!
I’d say that about does it for the first quarter of 2008, I’ll be updating you hopefully every month. Oh yea I forgot:
Long Term
· I hope everyone spends a little more time with their significant others, their children, their families, and their friends. Be kinder to people. Listen more, there is a reason God gave us two ears and one mouth. I truly believe the more you give, the more you get in return. God bless you all!
Click here to give to ALS research.
Jim and Melanie with their niece
and Jim’s godchild Aubree.
2-6-08
and Jim’s godchild Aubree.
2-6-08
New Year’s Day; January 1, 2008
New Year’s Day; January 1, 2008
The Good, the Bad and the Ugly!
As my precious 5 year old nephew, Prescott, would say, “Happy New Year Everybody!” Most of us get to the end of a year and think “I’m glad that year’s over!” Every day, every month and every year our lives are filled with good things, bad things and ugly things. How we deal with each one of these is the secret to a full and blessed life.
Yes, I have had a lot to deal with in my life (especially the last four years) but so does everyone. We all have our ups, our downs and our sideways but that is the beauty of life. Without sadness how could we appreciate happiness, without cruelty how could we not appreciate mercy, and without hate how could we not know love. Our obligation is to live and I mean truly live, each and every day. I know it sounds like a cliché, but do you really live each day or do you just get through each day waiting for “it” to get better?
Last year was quite a year to say the least. In fact the last four have been beyond imaginable. Prostate cancer, Hepatitis C, 11 months of Hepatitis C treatments and then the diagnosis of ALS in February of 2007 which the doctors think I’ve had for a least a year.
So many things have changed. I had to quit the job the job I loved, helping businesses and owners solve their problems. (Some still call and I still help) I haven’t been able to eat any solid food for 6 months, solely depending on the nutrients being fed to me through a tube in my stomach. I’m on a breathing machine all night to help my lung capacity as well as another machine I use periodically throughout the day to help. Our house has been remodeled to make it ADA accessible, especially the bathroom with a new shower. It takes much longer to shower now, but it’s one of the small joys of the day. I take a lot of prescriptions as I have constant tremors throughout my body that I can’t control. I’m constantly exhausted and have lost most of the use of my left leg. Luckily they were able to make a brace so I can get around. I have trouble swallowing and seem to either have too much saliva or “dry mouth”. But things could be worse; I have a wife that’s been an absolute angel and some true friends that have stepped in to help tremendously. While I am trying to stay positive and focused on making people aware of ALS, I know it’s only going to get worse, much worse, but I try to stay as positive as I can.
Start 2008 by living each day. Take the good, the bad and the ugly and learn the lessons from each.
After my diagnosis of ALS in February 2007 I started a grass roots effort to raise funds for this horrible, mostly unknown, under funded incurable disease. My brother in law, Alex, built this wonderful website so that our family and friends could learn more about this disease, more about me and how I am doing and to raise funds for a cure. My goal is to raise at least two+ million dollars. These dollars will not only help find a cure for ALS they will also help find cures for all neuromuscular diseases. (Muscular Dystrophy, multiple sclerosis, Parkinson Disease, etc.) I’m honored to be named the state chairperson for the state of Oregon MDA-ALS division.
I’m very grateful to the following groups of people that have contributed:
* The DK Golf Tournament players contributed $2805.00
* The Jr-Sr Golf Association of Oregon players contributed $1759.00
* Chemeketa Community College Faculty contributed $125.00
* Creekside Golf Club members contributed $2087.00
* Family, friends, and friends of friends have contributed $10,755.00
In just six short months we raised just under $17,000 for research for ALS. A great start but we still need to raise more funds. Please ask your friends and colleagues to help. It doesn’t take a lot from any one person; it just takes a little from a lot of people. No donation is too small in fact I’ve had four children donate $1.00 each!! I’ve written a personal thank you note to everyone that’s contributed, including the children. So I urge you to pass my website www.jimculveyhouse.com on to your friends, families and contact lists and let’s make 2008 a year where one of these diseases has a cure.
I wish you all have a very happy, healthy and successful new year. Only with your help can we beat this disease.
P.S. We do have plans for a golf tournament at my Golf Club in April that will be great. We are also having an auction in May (ALS month) at the Golf Club. If you want to know how to get involved with these events email me at www.jimculveyhouse.com.
Click here to give to ALS research.
The Good, the Bad and the Ugly!
As my precious 5 year old nephew, Prescott, would say, “Happy New Year Everybody!” Most of us get to the end of a year and think “I’m glad that year’s over!” Every day, every month and every year our lives are filled with good things, bad things and ugly things. How we deal with each one of these is the secret to a full and blessed life.
Yes, I have had a lot to deal with in my life (especially the last four years) but so does everyone. We all have our ups, our downs and our sideways but that is the beauty of life. Without sadness how could we appreciate happiness, without cruelty how could we not appreciate mercy, and without hate how could we not know love. Our obligation is to live and I mean truly live, each and every day. I know it sounds like a cliché, but do you really live each day or do you just get through each day waiting for “it” to get better?
Last year was quite a year to say the least. In fact the last four have been beyond imaginable. Prostate cancer, Hepatitis C, 11 months of Hepatitis C treatments and then the diagnosis of ALS in February of 2007 which the doctors think I’ve had for a least a year.
So many things have changed. I had to quit the job the job I loved, helping businesses and owners solve their problems. (Some still call and I still help) I haven’t been able to eat any solid food for 6 months, solely depending on the nutrients being fed to me through a tube in my stomach. I’m on a breathing machine all night to help my lung capacity as well as another machine I use periodically throughout the day to help. Our house has been remodeled to make it ADA accessible, especially the bathroom with a new shower. It takes much longer to shower now, but it’s one of the small joys of the day. I take a lot of prescriptions as I have constant tremors throughout my body that I can’t control. I’m constantly exhausted and have lost most of the use of my left leg. Luckily they were able to make a brace so I can get around. I have trouble swallowing and seem to either have too much saliva or “dry mouth”. But things could be worse; I have a wife that’s been an absolute angel and some true friends that have stepped in to help tremendously. While I am trying to stay positive and focused on making people aware of ALS, I know it’s only going to get worse, much worse, but I try to stay as positive as I can.
Start 2008 by living each day. Take the good, the bad and the ugly and learn the lessons from each.
After my diagnosis of ALS in February 2007 I started a grass roots effort to raise funds for this horrible, mostly unknown, under funded incurable disease. My brother in law, Alex, built this wonderful website so that our family and friends could learn more about this disease, more about me and how I am doing and to raise funds for a cure. My goal is to raise at least two+ million dollars. These dollars will not only help find a cure for ALS they will also help find cures for all neuromuscular diseases. (Muscular Dystrophy, multiple sclerosis, Parkinson Disease, etc.) I’m honored to be named the state chairperson for the state of Oregon MDA-ALS division.
I’m very grateful to the following groups of people that have contributed:
* The DK Golf Tournament players contributed $2805.00
* The Jr-Sr Golf Association of Oregon players contributed $1759.00
* Chemeketa Community College Faculty contributed $125.00
* Creekside Golf Club members contributed $2087.00
* Family, friends, and friends of friends have contributed $10,755.00
In just six short months we raised just under $17,000 for research for ALS. A great start but we still need to raise more funds. Please ask your friends and colleagues to help. It doesn’t take a lot from any one person; it just takes a little from a lot of people. No donation is too small in fact I’ve had four children donate $1.00 each!! I’ve written a personal thank you note to everyone that’s contributed, including the children. So I urge you to pass my website www.jimculveyhouse.com on to your friends, families and contact lists and let’s make 2008 a year where one of these diseases has a cure.
I wish you all have a very happy, healthy and successful new year. Only with your help can we beat this disease.
P.S. We do have plans for a golf tournament at my Golf Club in April that will be great. We are also having an auction in May (ALS month) at the Golf Club. If you want to know how to get involved with these events email me at www.jimculveyhouse.com.
Click here to give to ALS research.
Christmas Day December 25, 2007
Christmas Day December 25, 2007
“The Best Christmas Ever”
God let me wake up today on the day his son Jesus was born. I never used to think like this but as I breathe and see the world another day I think about how many people did not wake up today? When I opened my eyes there was my wife of almost 25 years. (Think of the divorce rate in the US ; when she took the oath for better or worse she meant it and sometimes I’ve been no picnic and tougher times are looming ahead.) I took a nice long hot shower, I take much longer than I used to but what a great feeling. (Lots of people sure can’t say the same) I got to talk with family and friends, little harder for them to understand me, but still great. I wished I could have talked to more of them, but I am blessed to have so many friends. I got to look ay website, www.jimculveyhouse.com, that my brother in law Alex, put together and see how many people are supporting my cause to help find a cure for this horrible, incurable, under funded disease. This made me smile and feel great. This past week my long time friend and lawyer, Ken Sherman, Jr. revised our trust which was one of the biggest loads off my mind since I was diagnosed with this horrible disease. Twenty Five percent (25%) of our net worth, off the top, will go to charities which makes me feel like most people should – appreciative of what they have and to be able to give back. Even though I haven’t been able to eat for four months, I got to smell the wonderful food that our close friends, Peter and Robin Juhren invited us over with my mother in law to partake in a traditional Christmas dinner with their family.
All in all it’s a great day, whenever you can laugh, cry and reminisce in the same day. I leave you with a poem that is apropos and sums up my feelings exactly:
I have a list of people I know, all logged in my computer,
And now on Christmas I have gone to take a look.
And that is when I realize that these names are a part,
Not of the computer they're stored in, but of my heart.
For each name stands for someone who has crossed my path sometime,
And in that meeting they've become the rhythm in each rhyme.
And while it sounds fantastic for me to make this claim,
I feel that I'm composed of each remembered name.
And while you may not be aware of any special link,
Just meeting you has changed my life, a lot more than you think!
For once I have met somebody, the years cannot erase,
the memory of a pleasant word (or E-mail) or of a friendly face.
So never think my E-mails are just a mere routine,
of names upon an address list, forgotten in between.
For when I do a Christmas Day E-mail that is addressed to you,
it’s because you're on the list of people I'm indebted to.
And whether I have known you for many years or few,
in some way you have been a part of shaping things I do.
And now that Christmas has come, I realize anew,
the best gift life can offer is meeting people like you.
I hope you enjoyed your day as much as I did. We have a lot to be thankful for. Enjoy your family and friends as you never know when a “curveball” will change your life dramatically. God bless you all and I wish you a safe and wonderful new year
Click here to give to ALS research.
“The Best Christmas Ever”
God let me wake up today on the day his son Jesus was born. I never used to think like this but as I breathe and see the world another day I think about how many people did not wake up today? When I opened my eyes there was my wife of almost 25 years. (Think of the divorce rate in the US ; when she took the oath for better or worse she meant it and sometimes I’ve been no picnic and tougher times are looming ahead.) I took a nice long hot shower, I take much longer than I used to but what a great feeling. (Lots of people sure can’t say the same) I got to talk with family and friends, little harder for them to understand me, but still great. I wished I could have talked to more of them, but I am blessed to have so many friends. I got to look ay website, www.jimculveyhouse.com, that my brother in law Alex, put together and see how many people are supporting my cause to help find a cure for this horrible, incurable, under funded disease. This made me smile and feel great. This past week my long time friend and lawyer, Ken Sherman, Jr. revised our trust which was one of the biggest loads off my mind since I was diagnosed with this horrible disease. Twenty Five percent (25%) of our net worth, off the top, will go to charities which makes me feel like most people should – appreciative of what they have and to be able to give back. Even though I haven’t been able to eat for four months, I got to smell the wonderful food that our close friends, Peter and Robin Juhren invited us over with my mother in law to partake in a traditional Christmas dinner with their family.
All in all it’s a great day, whenever you can laugh, cry and reminisce in the same day. I leave you with a poem that is apropos and sums up my feelings exactly:
I have a list of people I know, all logged in my computer,
And now on Christmas I have gone to take a look.
And that is when I realize that these names are a part,
Not of the computer they're stored in, but of my heart.
For each name stands for someone who has crossed my path sometime,
And in that meeting they've become the rhythm in each rhyme.
And while it sounds fantastic for me to make this claim,
I feel that I'm composed of each remembered name.
And while you may not be aware of any special link,
Just meeting you has changed my life, a lot more than you think!
For once I have met somebody, the years cannot erase,
the memory of a pleasant word (or E-mail) or of a friendly face.
So never think my E-mails are just a mere routine,
of names upon an address list, forgotten in between.
For when I do a Christmas Day E-mail that is addressed to you,
it’s because you're on the list of people I'm indebted to.
And whether I have known you for many years or few,
in some way you have been a part of shaping things I do.
And now that Christmas has come, I realize anew,
the best gift life can offer is meeting people like you.
I hope you enjoyed your day as much as I did. We have a lot to be thankful for. Enjoy your family and friends as you never know when a “curveball” will change your life dramatically. God bless you all and I wish you a safe and wonderful new year
Click here to give to ALS research.
Christmas 2007
Christmas 2007
Instead of Christmas cards I thought this was the best way to let you know how I am, what’s been happening, my health situation, and a message from me to enjoy the holidays with your family and friends as you never know when your life can dramatically change.
First of all I need to give special thanks to a few people. First of course is my wife, Melanie. I’m the luckiest man in the world to have her for the past 25+ years. I’ve always called her Mother Theresa and for those that really know her, know that this is a true statement. This “change in our lives” has been truly an unbelievable burden on her and she has come through like the most caring, understanding, and compassionate person I have ever met. We both know that things are only going to get worse yet she never complains and in fact thinks of ways that we can be “proactive” in things we need to prepare for.
Next I’d like to thank my wonderful sister and brother in-law; Shawn and Alex. My grass roots campaign for raising funds for ALS research could never have happened without Alex who spent an unbelievable amount of hours putting together my website to be able to get my message across and be able to give people information on this horrible, under funded, incurable disease and give people the easiest way possible to be able to contribute whatever they can to help the scientists, researchers and doctors the badly need grants to be able to work on finding a cure for this incurable disease.
I have some friends that without their support I could not keep my upbeat attitude and driven dedication to raise the badly needed research funds this disease needs. I truly treasure their friendship. They are: Robin and Peter Juhren, friends from Salem have gone absolutely overboard in their help in so many ways. My close friends Chris Burskey from Phoenix, Rich Mesnick from Las Vegas, Steve Viale (my golf tournament partner) and Robert Kraft , our remodeler, have been there everyday to talk to when I was feeling a little blue or just needed somebody to talk to. Their are so many other people, excuse me for not mentioning you all, but you’ve all been special, inspirational, uplifting and making this ordeal a lot easier to take.
As you know, or maybe you don’t – if not that’s why you need to look at my website which is updated regularly – www.jimculveyhouse.com. After diagnosis the average life span of a diagnosed person is 2 to 5 years. I was diagnosed in February of 2007 and the doctors think I had it for at least a year before that. But as those who know me, I’m a fighter, and I’m going to do everything possible to extend my life a lot further than that and to keep up my fundraising efforts so we can find a cure for this horrible, incurable, dehabiliting, under funded disease that not only affects the patient but also family and friends associated with the person diagnosed. I’ve always thought of myself as a giver, now I’m asking people to help me in my efforts to help get rid of this disease through contributions of whatever people can give. No amount is too small as every bit helps. We even have it set up so people can give $1! If you don’t have access to the website, call Gavin Johnson at the MDA-ALS division office at 971-244-1290 and he’ll be able to take your donation by phone or send you a contribution envelope.
Health wise, I’m about the same as Thanksgiving, a little weaker, I get tired more quickly and I have more trouble getting around as well having a problem doing the simple things in life as well. But that’s the way it is. All I ask this Christmas is that you look at the website regularly www.jimculveyhouse.com and pass it on to all your contact lists to spread the word.
Have the happiest of holidays, spend quality time with your family and friends and God bless you all!
Click here to give to ALS research.
Instead of Christmas cards I thought this was the best way to let you know how I am, what’s been happening, my health situation, and a message from me to enjoy the holidays with your family and friends as you never know when your life can dramatically change.
First of all I need to give special thanks to a few people. First of course is my wife, Melanie. I’m the luckiest man in the world to have her for the past 25+ years. I’ve always called her Mother Theresa and for those that really know her, know that this is a true statement. This “change in our lives” has been truly an unbelievable burden on her and she has come through like the most caring, understanding, and compassionate person I have ever met. We both know that things are only going to get worse yet she never complains and in fact thinks of ways that we can be “proactive” in things we need to prepare for.
Next I’d like to thank my wonderful sister and brother in-law; Shawn and Alex. My grass roots campaign for raising funds for ALS research could never have happened without Alex who spent an unbelievable amount of hours putting together my website to be able to get my message across and be able to give people information on this horrible, under funded, incurable disease and give people the easiest way possible to be able to contribute whatever they can to help the scientists, researchers and doctors the badly need grants to be able to work on finding a cure for this incurable disease.
I have some friends that without their support I could not keep my upbeat attitude and driven dedication to raise the badly needed research funds this disease needs. I truly treasure their friendship. They are: Robin and Peter Juhren, friends from Salem have gone absolutely overboard in their help in so many ways. My close friends Chris Burskey from Phoenix, Rich Mesnick from Las Vegas, Steve Viale (my golf tournament partner) and Robert Kraft , our remodeler, have been there everyday to talk to when I was feeling a little blue or just needed somebody to talk to. Their are so many other people, excuse me for not mentioning you all, but you’ve all been special, inspirational, uplifting and making this ordeal a lot easier to take.
As you know, or maybe you don’t – if not that’s why you need to look at my website which is updated regularly – www.jimculveyhouse.com. After diagnosis the average life span of a diagnosed person is 2 to 5 years. I was diagnosed in February of 2007 and the doctors think I had it for at least a year before that. But as those who know me, I’m a fighter, and I’m going to do everything possible to extend my life a lot further than that and to keep up my fundraising efforts so we can find a cure for this horrible, incurable, dehabiliting, under funded disease that not only affects the patient but also family and friends associated with the person diagnosed. I’ve always thought of myself as a giver, now I’m asking people to help me in my efforts to help get rid of this disease through contributions of whatever people can give. No amount is too small as every bit helps. We even have it set up so people can give $1! If you don’t have access to the website, call Gavin Johnson at the MDA-ALS division office at 971-244-1290 and he’ll be able to take your donation by phone or send you a contribution envelope.
Health wise, I’m about the same as Thanksgiving, a little weaker, I get tired more quickly and I have more trouble getting around as well having a problem doing the simple things in life as well. But that’s the way it is. All I ask this Christmas is that you look at the website regularly www.jimculveyhouse.com and pass it on to all your contact lists to spread the word.
Have the happiest of holidays, spend quality time with your family and friends and God bless you all!
Click here to give to ALS research.
Thanksgiving Weekend 2007
Thanksgiving Weekend 2007
I thought on this Thanksgiving weekend I would give you all an update and then let Melanie end it with the medical stuff. I can tell this disease is a tough one. You have bad days and good days and the good ones ain’t that great!
Usually I would start with the beginning of the day but I’m going to start with how I prepare to go to bed:
First, I breathe through a nebulizer (the pulmonologist recently put me on this because I have bronchitis) for 10 minutes to get medication deep into my lungs to open my bronchial passages. Melanie crushes and inserts into my feeding tube my night time medications. I get into bed and Melanie helps me hook up to two machines, a feeding pump and a B-Pap machine. The feeding pump feeds me 750ml of nutrition throughout the night, this has really helped my stamina. The B-Pap is a machine used by people with sleep apnea. It forces air through a mask and makes the person breathe. This is very helpful because at night I don’t breathe as well as during the day mainly because my diaphragm muscles are affected by the ALS. By forcing air into my lungs, it allows me to get a very restful night sleep.
In the morning Melanie crushes my morning medications and feeds them through my stomach tube. I then put on my neck brace and left leg brace, have another bag of 250 calories fed through my tube, do another 10 minutes with the nebulizer and am ready to go to work. Work now is to read and respond to emails, look over our stock portfolio and call one of my best friends; our broker and then work on my fundraising work.
Some days, I play golf, not well, I’ve lost a lot but it gets me out of the house and with the guys. Other days I have doctor appointments. Otherwise I continue on my fundraising efforts and do another 10 minutes with the nebulizer. After that I have another bag of 250 calories and then catch up on late emails and fundraising things and relax, catch up with Melanie on her day, do another 10 minutes with the nebulizer and go to bed starting the procedure all over again for the next day.
Believe it or not even with all this, I still have positive outlook. I truly believe that my fundraising efforts are mushrooming. Please consider a donation to this grossly under funded disease and send my website to your friends, www.jimculveyhouse.com. Maybe they know someone with ALS or would like information. The more people know about this disease the sooner we can find a cure.
Keep looking at the site as we have set up a PGA pro shootout at Creekside in Salem , OR in the spring, an auction for ALS also at Creekside in the spring and a pro am and auction at Canyon Gate Country Club in Las Vegas in the spring. Stay tuned!
Click here to give to ALS research.
I thought on this Thanksgiving weekend I would give you all an update and then let Melanie end it with the medical stuff. I can tell this disease is a tough one. You have bad days and good days and the good ones ain’t that great!
Usually I would start with the beginning of the day but I’m going to start with how I prepare to go to bed:
First, I breathe through a nebulizer (the pulmonologist recently put me on this because I have bronchitis) for 10 minutes to get medication deep into my lungs to open my bronchial passages. Melanie crushes and inserts into my feeding tube my night time medications. I get into bed and Melanie helps me hook up to two machines, a feeding pump and a B-Pap machine. The feeding pump feeds me 750ml of nutrition throughout the night, this has really helped my stamina. The B-Pap is a machine used by people with sleep apnea. It forces air through a mask and makes the person breathe. This is very helpful because at night I don’t breathe as well as during the day mainly because my diaphragm muscles are affected by the ALS. By forcing air into my lungs, it allows me to get a very restful night sleep.
In the morning Melanie crushes my morning medications and feeds them through my stomach tube. I then put on my neck brace and left leg brace, have another bag of 250 calories fed through my tube, do another 10 minutes with the nebulizer and am ready to go to work. Work now is to read and respond to emails, look over our stock portfolio and call one of my best friends; our broker and then work on my fundraising work.
Some days, I play golf, not well, I’ve lost a lot but it gets me out of the house and with the guys. Other days I have doctor appointments. Otherwise I continue on my fundraising efforts and do another 10 minutes with the nebulizer. After that I have another bag of 250 calories and then catch up on late emails and fundraising things and relax, catch up with Melanie on her day, do another 10 minutes with the nebulizer and go to bed starting the procedure all over again for the next day.
Believe it or not even with all this, I still have positive outlook. I truly believe that my fundraising efforts are mushrooming. Please consider a donation to this grossly under funded disease and send my website to your friends, www.jimculveyhouse.com. Maybe they know someone with ALS or would like information. The more people know about this disease the sooner we can find a cure.
Keep looking at the site as we have set up a PGA pro shootout at Creekside in Salem , OR in the spring, an auction for ALS also at Creekside in the spring and a pro am and auction at Canyon Gate Country Club in Las Vegas in the spring. Stay tuned!
Click here to give to ALS research.
October 20th, 2007
October 20, 2007
An Update on Jim from his wife Melanie!
Jim had his third visit (every 3 months he has a check-up) to OHSU/ALS Clinic on Tuesday, October 16, 2007.
Jim’s doctors monitor three things very closely:
Weight - Because Jim gets all his nourishment through a feeding tube inserted directly into his stomach, monitoring his intake of calories is crucial
Breathing capacity – His FVC or Forced Volume Capacity remains at a constant 83%. This means his diaphragm continues to work properly and Jim is able to breathe on his own.
Muscle strength – Loss of muscle strength or control is an indicator of how the disease is progressing. Jim wears a brace on his left leg to support his left ankle. He has lost some muscles strength in his neck so he is seeing a physical therapist and that is helping. He also has been fitted for a neck brace to add support when he is tired.
All in all his doctors were very pleased with Jim’s current physical condition. Our prayer now is that Jim could stay where he is physically for awhile. He is stable and able to remain independent and he likes that!! You know Jim!
He keeps his spirits up and still tries to play golf once or twice a week. He spends countless hours on his fundraising efforts as chairperson for the State of Oregon ALS division. His website, being developed by his brother in law of his sister, Shawn, Alex, is almost complete. It will make things so much easier as he spends many, many hours on the computer everyday, which is not good but again, you know Jim, when he has a vision he gives 100% effort to it. ALS is very lucky to have someone like him that is so committed and willing to do “whatever it takes” to raise funds for this dreadful, under funded, incurable disease, that Oregon has five times the national average of incidence, very strange!.
Everyone is amazed and astonished at how Jim has handled this situation but I, as his wife for almost 25 years, am not surprised at all, this is how Jim’s always handled adversity; he always looks on the bright side of things and thinks of a way to make things better for other people. That’s just Jim!
Click here to give to ALS research.
An Update on Jim from his wife Melanie!
Jim had his third visit (every 3 months he has a check-up) to OHSU/ALS Clinic on Tuesday, October 16, 2007.
Jim’s doctors monitor three things very closely:
Weight - Because Jim gets all his nourishment through a feeding tube inserted directly into his stomach, monitoring his intake of calories is crucial
Breathing capacity – His FVC or Forced Volume Capacity remains at a constant 83%. This means his diaphragm continues to work properly and Jim is able to breathe on his own.
Muscle strength – Loss of muscle strength or control is an indicator of how the disease is progressing. Jim wears a brace on his left leg to support his left ankle. He has lost some muscles strength in his neck so he is seeing a physical therapist and that is helping. He also has been fitted for a neck brace to add support when he is tired.
All in all his doctors were very pleased with Jim’s current physical condition. Our prayer now is that Jim could stay where he is physically for awhile. He is stable and able to remain independent and he likes that!! You know Jim!
He keeps his spirits up and still tries to play golf once or twice a week. He spends countless hours on his fundraising efforts as chairperson for the State of Oregon ALS division. His website, being developed by his brother in law of his sister, Shawn, Alex, is almost complete. It will make things so much easier as he spends many, many hours on the computer everyday, which is not good but again, you know Jim, when he has a vision he gives 100% effort to it. ALS is very lucky to have someone like him that is so committed and willing to do “whatever it takes” to raise funds for this dreadful, under funded, incurable disease, that Oregon has five times the national average of incidence, very strange!.
Everyone is amazed and astonished at how Jim has handled this situation but I, as his wife for almost 25 years, am not surprised at all, this is how Jim’s always handled adversity; he always looks on the bright side of things and thinks of a way to make things better for other people. That’s just Jim!
Click here to give to ALS research.
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