- CureHD Foundation -
Dedicated to funding a cure for Huntington's Disease.


Robert Bishop
Introduction
HD family tree
Why I do this
Family photos

What is HD?
Definition
The HD secret
How many have HD
The cruelest illness

The HD nightmare
My experience
Other experiences

HD research
Hope for a cure
North America

How can I help?
Make a donation
Contact the media
Ask legislators...

News & events
Articles & stories
I need your help

Contact info
CureHD Foundation
CureHD sponsors
HD web sites
Other info

Content 1999-2009
CureHD Foundation
All Rights Reserved.

www.curehd.org

As told by Mark D...
I was about twelve when my mother, who had been divorced for a number of years, found someone who she was proud enough to bring home to meet her three sons and two daughters. This was quite a move on mom's part, trusting that this new fellow wouldn't turn tail and run at the prospect of an instant family or a mischievous bunch of kids. We did our part to test his patience and intentions, and well... something happened we didn't count on. We kind of liked him. And more than that, we found him fun and interesting.

It wasn't long before this man and my mother married. After a short while we tried to figure out just who this man Gary was, about his past and who his friends and family were. Our new stepfather's past began to unfold as a strange one.

Gary and his brother Chuck were members of a larger family that had been torn apart and separated by the State. Gary said that his mother had gone crazy and tried to kill he and his brothers and sisters by backing over them with the car. Gary also said his earliest memories of his life were of his brother Chuck, only a couple of years older than Gary, who had kept him from starving to death by stealing food from the fridge and feeding it to him and by dipping rags in the toilet to give him the water that he so desperately needed to survive.

He went on to explain that the actions of his mother landed her in a mental hospital. Eventually, she was committed for insanity. Both Gary and Chuck were placed with a foster family but their other brother and sisters were broken up and sent to separate families.

Gary had a childhood that seemed normal enough... school, fishing, hunting, pulling pranks, etc. However, he would tell an occasional bizarre tail of battles he and his brother Chuck had with each other. Stories of fights that involved weapons or serious consequences had they been fully acted upon. At times, it seemed that they were prepared to kill each other. I found this to be strange since I couldn't picture myself harming my brothers and sisters. Still, I passed it off as being odd.

Gary was an amazing person. He could run like a deer and served in Vietnam with his brother Chuck (who was shot twice). Both were decorated for their courage. Gary was a Green Beret with the Special Forces Airborne Division and Chuck was a Ranger in Special Forces. After his release from the Army, Gary also served in the National Guard.

Gary was a pride-driven man with a very deep compassion for people, until he got angry. He worked as a painter and had a good job at the Tooele Army Depot.

It was nice to have an extra income in the family. Since I hadn't had a Dad around, I was used to not having things other kids my age were accustomed to having. I found it really cool to eat a steak at dinner or to have fast food occasionally instead of the usual goulash, fish sticks, corn chowder and other rice dishes that low-income single mother families live on. Not to mention having a car that was road worthy and going on vacations... WOW! Life had changed and things were good.

As time passed, however, Gary's temper and mood swings became more severe. He began to do goofy things and became violent. Eventually losing his job at the Army Depot (the termination paper said his behavior was inappropriate), Gary was forced to take work with smaller companies for much less pay. He then started physically abusing my mother. I was only about 15 at the time but I wasn’t going to put up with that... and so our battles with each other began.

At first I was a bit unprepared and out matched but still fought to protect my mom, brothers, and sisters. I learned quickly and forced myself to be strong, quick, tough, and mean. I worked out with an obsession, learned Tai Kwon Do, and by age 17 was a formidable opponent to this war hardened man who was so gracious but also so unstable.

Gary had more and more trouble holding down a job. Mentally he was acting more strange and had many confrontations with others. I served as a protector to my family and would fight Gary to sometimes a long and bloody conclusion. Even though I would be victorious, I was sickened that I had to hurt him so badly to make him stop.

When my little brother Jeremy was born, things became even stranger with Gary. Although he loved his son, his speech was more slurred, his mutterings more bizarre, his walk more unusual, and his behavior more paranoid and unstable. Only his pride for Jeremy and being in the National Guard remained.

However, Gary was court marshaled a couple of times for behavior problems and later he lost his National Guard position. It was at that point that Gary was served divorce papers. He refused to leave and was forced out. He would stay in nearby vacant houses and was arrested a few times for stealing food. I was sickened to watch him screw up his life so bad, it hurt me deeply.

Gary disappeared for a while and I later found that he had started going to the VA Veterans Center where he had made some friends and enjoyed the Army flavor. He was living in poverty and worked as a volunteer at the hospital in return for food. The trauma that my family had endured from Gary’s violence had prevented us from staying in touch with him for a few years and I was shocked at the degree of physical and mental changes that had occurred. The violence was all but gone in Gary. The warm, caring, decent man I had known long before was there once again.

The VA soon diagnosed Gary with having Huntington’s Disease. I would visit Gary and check in on him from time to time. Gary’s voice was failing and sometimes he would call on the phone and ask me for help with something. On one occasion, I couldn’t understand anything he was saying so I went over to the shack he called home and found that he couldn’t right his small needle bare Christmas Tree nor put on the lights. I couldn’t figure out how he had gotten the tree to his house (since he had long ago lost his driving privileges from too many car wrecks). When I looked outside, I saw a path of needles leading from the walk down the road. I was astonished that this man who could barely walk had been able to drag a tree to his house. I finished helping him with his tree and when it was finished, he clapped to show his appreciation. When I left I recall that I cried like a baby… and I still do.

Gary, even though shaky and unstable, was a perfect host. He would never let you get your own coffee and would always serve you. I admired his strength and courage more than any one on earth. His strength became more evident to me when I found out that his walking around collecting aluminum cans wasn’t just for something to occupy his time but was needed for income. Nor was shopping at the local thrift store. It seems that the State of Utah only awarded Gary a 20% disability and then took child support from that which left him a whopping $130 a month to live on. The State was also trying to sue him for back child support payments and also said that he had been over paid years earlier for unemployment income. Of course, this proved to be real convenient for the State since Gary couldn’t speak or defend himself. Gary was eventually put in a rest home. I hated that place and found it difficult to visit him there.

Gary’s son, my brother Jeremy, was in the Army and called me from Hawaii where he was stationed. He had been worrying that he might have the disease so he had had the blood test. I knew there was a chance that Jeremy could have inherited the HD gene, but all of the family had honored my mom’s request to allow him to grow up unconcerned. Jeremy was sobbing and said that the test was positive and that the disease had a memory so each generation could get it sooner. I had to be the tough brother one more time. I recall saying to him "Jeremy, we new that there was a chance this could happen but we wanted you to grow up without being concerned about it. Life is strange and sometimes unfair but we get the cards we are dealt. You may not live a long life but you can make sure that you pack so much living into your life that you'll have no regrets. Make sure you realize anger is a byproduct of the disease and try your best to not get angry. We all love you and you need to be tough for us and mom." After he hung up, I was sick inside again. It felt just like I remember feeling after the battles I had with Gary. I was tired of being tough.

Jeremy is now 23 and I love him dearly. He is a great person. I wish desperately for a cure and have spent hours on the internet seeing if there is a cure or at least something that will slow down the progression of the disease. What I found is that this disease isn’t killing enough people to spark the attention of the companies or people who could find a cure. You know the story... no big profits, no research. People don’t seem to realize that this disease wipes out entire families and deeply hurts those near to them. The affected lose their jobs, homes, self-confidence, families, mobility, speech, reasoning, then their lives. I can't bare the thought of seeing Jeremy suffer through this. I can't bear the thought of witnessing it all over again. I guess I'll just have to be tough again. Sometimes I think that maybe I'll get lucky and die before Jeremy but at age 39, that probably won't happen.

Lately, I have found myself contemplating something more reachable for Jeremy. I want to shamelessly find out where I can send a letter to celebrities I admire like Karl Malone, Oprah Winfrey, Jack Nickelson, Evander Holyfield, John Stockton, and John Elway. I'd like to ask them to do something for Jeremy that this big hearted low-income family can't do like take him fishing on the Kenai river, show him around Hollywood, take him to dinner, set him up with a place so he doesn’t work away the time he could be spending with us, help him get a car, be his friend... I know it sounds greedy but I told Jeremy to "live life to the fullest" and watching him work away his young short life just kills me. But reality sets in and I realize I don’t have the right to ask.

When Jeremy returned home from the Army we visited Gary, he could no longer recognize Jeremy and it broke Jeremy’s heart. Gary did however for a brief flash recognize me only when I called out his name. Just as quickly he would fade back to wherever his mind was, looking confused. I have been told that the last and final thing the affected lose just before death is long-term memory.

My thoughts and prayers are with those who suffer with HD. I hope desperately for a cure soon. I hope there are still people left in the medical research area that value human life enough to forgo big profits. I hope they get busy soon. I hope that no one else ever has to live off a 20% disability. I hope no one else ever has to decorate another person’s Christmas Tree. And finally, I hope no one else ever has to learn how to be too tough.