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.
Tuesday, July 29, 2008
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..
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