|A Conversation with Brian . . .|
A conversation with
Brian . . .
My name is Brian Hall.
And I’d like to welcome you to Brian’s Wish, speak to you a little about my disease and let you know how you can help . . .
In my mid 30’s I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease. ALS causes a progressive wasting of all voluntary muscles resulting in paralysis, and is terminal with a prognosis of two to five years.
There is, so far, unfortunately no known cause or cure for ALS. That is something I would like you to help me change.
At this point I have had ALS about four and a half years and cannot do anything for myself. I have a good mind trapped in a motionless body. I have seen how ALS disrupts patients and their families and have become determined to do something to help find a cure for this cruel and vicious disease.
ALS is a disease that affects everyone differently. The course of the disease is so different for everyone that it is surprising the name is the same for all. As the muscles grow weaker, each patient is affected differently. One person may be learning how he or she can live without the use of a hand while another might be having trouble chewing and swallowing food and liquids. Throughout the course of the disease the senses; sight, hearing, taste, smells, and touch, are not affected. The patient may not be able to move a limb but can still experience pain as before. The disease does not progress at the same rate for each patient, nor does it slow down. It continues to rob the body of functionality resulting in total paralysis and death.
Just as we know that each race driver needs support from his team, his sponsors and his fans, likewise, each ALS patient needs aid and assistance from others as each muscular function deteriorates.
The patient has to rely on his support group to help him live without those lost functions. The support group includes the patient caretakers and doctors and therapists. The caretakers usually are the patient’s family and friends and may include hired nurses and other professional help. Then, as time goes on the patient’s needs increase and the caretakers’ resources decrease. Most families are not trained caregivers and must struggle with their own needs as well as the patient’s needs.
In my case, my personal progression brought me to hospice care at St. Vincent’s here in Indianapolis.
I had really hoped to be able to stay at home, with my friends and family by my side, but that was not the path set for me. My care became too much for my family to continue by themselves. So when I arrived there, I must admit that hospice was the last place I wanted to be, at least until I met my caregivers, including Barb Lyons. Barb took the time to become not only my caregiver, but also my friend. We soon realized we shared a common interest in racing. It was that common interest, and all my caregiver's extra efforts to find ways to help make my life better, that led to what has become Brian’s Wish.
Like so many other experiences recently, St. Vincent’s Hospice has turned out to be another of those unexpected positives in my life.
While discussing a favorite topic, auto racing, with Barb Lyons, I learned of the generous people at Track Forum (www.trackforum.com). Track Forum is an online community that discusses several types of auto racing and most notably the Indy Racing League. A few days later she had arranged for drivers, owners, and crewmembers from the IRL to stop by and visit. I also started receiving the first of many items of memorabilia from race teams and race fans. Having been a race fan for over 30 years I do appreciate what the items mean to me and to those who sent them.
Soon, Barb asked me what the people at TrackForum could do for me.
As I know the racing community can be almost like family I realized there could be a good potential for getting something done. I explained to Barb that what I want is to create more awareness of ALS and raise funds to be used in developing a cure. Again Barb generously spent her time going online to explain this to the people on TrackForum. Soon TrackForum members had created a Brian’s Wish logo and the www.BriansWish.com web site which contains a brief story about my situation, information about ALS, areas for pictures, sponsors and others being added as needed.
This was the birth of Brian’s Wish!
The Brian’s Wish web site also has a mechanism in place to accept donations to help the Brian’s Wish cause. My “wish” on this is that the funds we raise through Brian’s Wish be used specifically to help promote awareness and to help fund research to find a cure. Money spent on research into a cure is very similar to a race team spending money to develop engines and chassis for a winning team to stay on the leading edge of technology. And the more we can raise awareness and inform the public about my disease the more funds we can raise to help fund the research that will eventually find that cure.
I appreciate the TrackForum family associating my name with their tremendous group. The development of the Brian’s Wish program has been both a challenge and a blessing as well. I would ask that you all please keep in mind that Brian's Wish is not about any particular ALS patient, but rather a composite of all ALS patients and those around them.
It is my sincere “wish”, that with the support of all of you, my new friends, Brian’s Wish will continue to develop and grow as well as it has begun, and will be successful in helping to find a cure for ALS.
Brian K. Hall
Hello Race Fans - Brian here . . . 4/18/02
Click here to go to this TrackForum thread
Hello Race Fans!
I have asked my trusty personal assistant ("AB") to transcribe a letter as I dictate my thoughts to her. Be patient though because her old brain is kinda slow. Good cheap help is so hard to come by these days!
There sure has been a lot of racing news recently and I try to keep up. I have a lap-top and a monitor here in my room now thanks to the local ALS Assoc. Dad comes in, sets it all up with the monitor on the bedside table right in front of me....then he has the lap-top hooked into the monitor and we both read Track Forum (we might be checking some other sites too but we won't tell the nurses about it!) Just kidding!
First of all, I am really sorry to hear Robbie Buhl had that little dizzy spell the other day but I certainly agree that playing it safe, taking no chances and keeping him safe is the most important thing. I want him strong so he can run well at Indy... I believe we have it on tape where Barb has already announced him as the winner of the 2002 Indy 500! I keep telling her there are 32 other drivers who envision a different scenario!
However, I am thrilled that Sarah will get a chance to show well now that she is finally in good equipment, backed-up by a top-notch team and has the power of that Infiniti. I'll be cheering for her and if she wins my pharmacist will just freak out... he's smitten! Hope he doesn't find out I put that on the internet or he's liable to "forget" to replenish my drugs!... Just kidding... you can get a warped sense of humor when you hang around the staff for very long! Anyway, I'd love to see Sarah do well at Nazareth, find the sponsor $$$ to run a second D&R car the rest of the season and then be the other full-time car in 2003.
I saw on TrackForum someone asked what they thought the ladies think of Eddie's beard. Eddie, if you lurk around here I am forewarning you that the next time you come to visit some of the nurses have conspired to divert a small amount of my pain medicine to you...then when you are nice and mellow, they've got one of those horrible hospice-issue razors, and they plan on giving you a shave! Us guys have got to stick together. There is entirely too much estrogen around here!
I had a very pleasant surprise visit today from B1. He was on his way to catch a flight to Nazareth and stopped-in just to chat a while. It was great seeing him. He told me how thrilled and honored all of Cahill Racing is that our TrackForum family is "adopting" them for the Indy 500. I told him we all be cheering for them and to tell Robby to drive the wheels off that thing....just an expression!
Myself and my entire family want to thank step33 for making this possible. I want you all to know that we have all, including myself, already paid for our sponsorship and would like to encourage you to do the same.
I look out my window and see the fluffy white clouds in the blue sky and I can almost hear the beautiful sound of those IRL cars roaring around the track. I can smell the rubber and methanol and taste those White Castles (nurses call them bowel preps), tenderloins and Long's donuts! Dog can identify with this!
I really do enjoy reading all of your posts. If any of you want to PM me that would be great...
I understand several of you have inquired as to what is going on with me. I am so grateful for your continued care, concern, support and encouragement. You will never know how much each one of you has meant to me. You guys hang in there with me, keep pushing me and we WILL watch that checkered flag drop on May 26th together.
Barb has asked me exactly what to say about my condition and I told her she could say anything she wants. I know privacy and respect will not be compromised. To tell you the truth, a few months ago I didn't want anything specific about me to become public knowledge but now I feel completely different. Now I feel like you are all my friends and are walking right along side me. This is a journey that no one can make for me but it helps a lot to know I have so many friends by my side.
I also want to thank you for all the support and encouragement you have extended to my family as well. This is so tough on them and there is nothing I can do about it so, in a way, you are doing it for me. Thanks!
Physically, I am getting weaker. Some of you who have been here know I wear this Bi-Papp machine over my nose to make it easier for me to get in enough air. I didn't used to need it at all but now it has progressed to the point where I can breathe on my own without the machine for only occasional 10min. periods of time. This latest warm weather took me by surprise. The heat and humidity make it even more difficult to breathe. Consequently, my room is freezing cold with a great big de-humidifier going all the time. This does help a little but the down-side to that is that I keep my door to the hallway closed all the time so feel kinda isolated. The nurses count on me to be their sentinel and hall-monitor. Believe me, I knew everything that was going on around here!
Along with that, my secretions (spit) have greatly increased so I have to be suctioned a lot more. There is a lot more fluid retention in all of my extremities which is a real pain in the ole kiester! Speaking of pain...it is fairly well-controlled. My pain-pump works well and I know that I can have the rate increased at anytime I want. It's totally up to me but for right now I'm doing OK. Speech is a bit more slurred but am still able to communicate and give the nurses a hard time... don't feel sorry for them or for me... they can hold their own just fine and sometimes the "stuff" gets so deep in here you need boots to make it to the door!
I am very excited about the race this weekend. With me laying flat in bed I have trouble seeing the TV very well because the screen is kinda low but one of the guys here, Steve, is getting me another TV and placing it on top a rolling cart (oops! sorry! didn't mean to use the "C" word)....so I will be able to watch all the action.
I was kinda making plans for a night-before-the-race party. Thought maybe we could dig a big pit right outside my patio doors then we could get us a great big ole pig and have us a pig roast! For music I'm planning on John Mellencamp and Elaine will, of course, sit by my side and revel in my company.... that scenario, together with my drugs, is a dream come true! And don't forget the keg (or two)...can't have a race party without the brewskies! You guys don't think St. Vincent would object to my little get-together for about 300 of my closest friends, do you?
You all take care of yourselves and we'll all be together in spirit as we root for our favorite teams this Sunday. The most important thing is that it is a competitive, fun and safe race for all involved.
IT'S ALMOST MAY!
Your Bro, Brian
Hello again from Brian . . . 3/9/02
Click here to go to this TrackForum thread
Hello again ...
I'm happy to be posting again and using my father to do it. I am feeling a bit stronger than the last update. If you plan on visiting I would suggest you call the nurses to verify that I am available for visitors.
You know I might be in the powder room...
How about that team Cheever... maybe I can be their coach and help them understand that there is no "I" in TEAM.
I really appreciated that Brian's Wish Decal crossing the finish line first... even in front of Sam. That may be a sign that we will be successful.
BTW I have an extra "Shigeaki" anybody missing one?
Peace to all.
Hello Friends, it's Brian . . . 3/7/02
Click here to go to this TrackForum thread
I have asked Barb to relay a message to you.
First, she told me about how much fun you all had at the Flag Room [watching the Miami race]. I was really upset I could not be there because I had my heart set on that autographed picture of Shiggy!
She also told me that you all cheered for me before the start of the race. Thanks. That was really nice of you to be thinking of me.
I very much enjoyed watching the race with my buddy, "Elvis", from Muncie.
I have a favor to ask of you. The past couple of days I've been a little under the weather... I know... it sucks! Too many White Castles I think.
Anyway, at least for the time being, it would probably be best for me not to have any visitors... just till I feel stronger. I do so appreciate your friendship and your support so I hope you understand. I've got to get rested-up because we've got another race comin' up in 2 weeks....right?
That's about it for now. Either Dad or Barb will keep you posted.
Thanks... you are all the best!
Hello Racer's from Brian Hall . . . 2/26/02
Click here to go to this TrackForum thread
I have so much to say but I won't put it all in one post. I hope to be able to post more in the future. Thanks to my niece for the use of her computer and my father for his typing.
I received a special package from Fueler today containing a plaque identifying me as member number one of the Track Forum. I am not sure I am deserving of so much. The people of Track Forum have provided me with so much and all I have given is a story of a race fan who could be any one of us.
Not to drop too many names, but Robbie McGehee dropped by Sunday and our conversation made me realize just how close the season is to starting and how long I have been in contact with the good people of the Track Forum. The last couple of months have provided me with many joys from visitors stopping by and packages received. The biggest of which has been the start up of Brian's Wish.
The support for Brian's Wish has been tremendous! I think that the project will be successful in helping to find a cure for ALS.
As I notice the snow outdoors I realize the transporters are enroute to sunny Florida and I am anticipating this Saturday's race more than any before. I look forward to seeing as many races as I can this season. I will also be lurking about the forum as much as possible. Thank you to all for your prayers and good wishes.
Lets all have a good season!
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