Washington State Chapter
- Chapter Information
- Center of Excellence
- NW HD Physicians
- Treatment Guidelines
- Support Groups
- Genetic Counseling
- Social Worker
- Chapter Events
- Clinical Trials
- Chapter Stories
- HD Links
- Learn More
- HDSA National Website
Gaining the Courage to Speak Out, Part 1
By Linda Ingle
My sister Debbie was only eight years old when she began showing symptoms of a neurological disorder. She began losing her balance and having difficulty walking. She was doing very poorly in school and had to be enrolled in special education classes. My mother would try to help Debbie with her homework and could not understand why she was unable to remember what she had just been taught.
No one knew what was wrong with Debbie. We took her to several doctors but none of them seemed to know what the problem was. My mother had divorced our biological father several years earlier because she thought he behaved strangely and was very difficult to live with. She had no idea that he was an ill man and had been suffering from a genetic disorder which all three of her children had a fifty percent risk of inheriting.
It was when Debbie was finally diagnosed at the University of Washington hospital that my mother learned about Huntington's Disease. Debbie had the juvenile form which is usually passed on by the affected father. Her prognosis was very grim. She was 11 years old now and having great difficulty dressing herself, eating, talking and walking.
I was not told at that time about my brother and myself also being at risk. It was something I gradually learned about on my own. When I tried to discuss it with my mother she simply would not talk to me. I had no one to talk to about my fears. My stepfather was a very cruel man and only increased the tension in the household. He would make fun of my sister, imitate her and even beat her occasionally.
Death at age 19
My mother decided to place Debbie in a home when she was 15 years old. It was a home for the mentally retarded. The year was 1968 and my mother felt she had no other option. Debbie was not even told why she was being left there as my mother just simply could not talk about it. The terror my sister must have felt at being left there is very painful to imagine.
Right around that same period of time I learned that my biological father had also died of Huntington's disease. He was living in Texas in a hospital there. He was 41 years old.
Fear of being at risk
I was 18 years old at the time of my sister's death. Her passing and my father's passing had a tremendous impact on me. My fear of being at risk for Huntington's disease was increasing. I still had absolutely no one to talk to about it. Very few people I went to school with or worked with even knew about my sister as I kept it a secret, not wanting people to know I could get sick too.
My younger brother David was 17 at the time of our sister's death. David seemed to be in his own world. He dropped out of school at the age of fourteen. He was always in some kind of trouble but was also a very sweet and kind person. We didn't have much guidance growing up so I just considered him my wild little brother. He did get his G.E.D. and joined the military at the age of 18. I thought he might just straighten himself out and do well but he was struggling and making very poor decisions.
David was suspended from the Coast Guard at the age of nineteen or twenty. From that time on he was a lost soul. He hitchhiked around the country and settled in Texas for awhile. He held a job there for a short time but was unable to keep it. He was homeless when he called my mother and asked if he could return home and live with her. By this time he was in pretty bad shape. His teeth had rotted and he was skinny as a rail. My mom took care of him as best she could while working full time.
By this time I was married and had two children of my own. I still kept HD a secret from almost all who know me. To this day most of my co-workers in Seattle and many of my friends have no clue of the devastation HD has caused to my family. I felt that I was flawed and tried desperately to keep others from knowing about my risk. My marriage ended for various reasons but mostly because I felt I really was not deserving of being in a good relationship.
When I was 32 years old I practically begged the doctors in Vancouver, Canada to let me take the Marker test. It was 1987 and the test was not yet available in Washington state or anywhere on the west coast that I knew of. I went to Vancouver for a few genetic counseling sessions and made arrangements for the test to be done. At that time you had to have blood samples from several relatives for DNA comparisons. I got a sample from my mother, brother, cousin and an uncle.
The long wait for test results
Believe it or not, I had all of these samples shipped in a package at my local post office to Vancouver. I had to explain to the postal worker that my package contained biological samples. I remember the postal worker shouting out in front of everyone that we had a package with biological samples and asking another worker how to handle it. I could have just died with all the customers staring at me. It was so upsetting to me as a very private person to have to explain why I was mailing blood samples.
Well the package did get delivered to the University of British Columbia hospital. Then I waited, and waited, and waited. It took about two months for me to receive the verdict. Those two months were the longest in my life.
In the meantime, my brother had really gotten out of control. My mom had him placed at the Soldier's Home in Tacoma, Washington for a few years. When he was no longer able to stay there she had him placed in a few different nursing homes. He tended to get very agitated and sometimes violent so it was hard to find a good place for him. I think he was just so frustrated with his situation. He felt helpless and angry.
Finally the day came when I was to hear the result of my test, which was to be given to me at the University of Washington hospital. My closest friends and my mother were with me.
As soon as I saw the genetic counselor's face I knew the news was not good. Still when I was told the bad news I was completely devastated. I was told I had an 84% increased risk for having the gene.
"It knocked the wind out of me"
I wanted to die right then and there. I really thought that since both my sister and my brother were so young when they were diagnosed that my chances were really good for not having the gene. That 84% increased risk just knocked the wind out of me. If it weren't for my children I would have seriously considered suicide.
My mother stayed with me for the next few nights. She was devastated also. She already had lost one daughter and was losing her son. Now she had me and her grandchildren to worry about. She didn't want to believe the result, nor did I. Maybe they mixed up the blood samples, maybe there was some sort of contamination during shipping, maybe they didn't know what they were doing. Or maybe I was lucky and in the 16% decreased risk category.
Those next few years were horrible ones for me. I had to keep working and try to act like everything was fine. Only my closest friends knew what I was going through. The worst of it all was knowing that my beautiful children were at risk also. It was so extremely painful to deal with. I tried to put on a good front but the fear was consuming me. I truly thought I did not have many years left.
As time went on I was surprised that I gradually started to feel like myself again now and then. Sometimes I even laughed and enjoyed myself. I could even read books for enjoyment again and actually concentrate. Then in 1993 the incredible news that the gene was discovered gave me hope for the first time. It helped so much to know that with the discovery of the gene, advances were sure to be made. I felt that treatment or even a cure could be possible in the future.
Sick more than half of his life
It set me back again when my brother David passed away in 1996 just a few days after his 40th birthday. My mother and I spent his last days at the hospital with him. I remember feeling so very angry. Like my sister, he was nothing but skin and bones and unable to communicate. How could this have happened to my very handsome, funny and sweet little brother? It was so extremely unfair. What would he have been like had he not been sick more than half of his life?
I think it was around this time when I started feeling more ticked off about HD than afraid of it. What good was it doing being completely silent about it and hiding it. It actually felt disrespectful to my father, sister and brother to be shameful and silent about it. Sometimes anger is a good thing. It can motivate you to take a stand and do whatever you can to alleviate the suffering of others.
The passing of my mother in November 2007 (due to a lung disease) was the ultimate motivator for me. I am the only remaining member of my nuclear family. It is for them that I must speak up and also for all of us who live in the shadow of Huntington's Disease every day.
It has been twenty one years since I had the Marker test. I am now 53 years old and still going strong. I went back to school at the age of 50 and got my Bachelor's Degree in Interdisciplinary Studies in the Social and Behavioral Sciences. My kids have grown up to be wonderful adults and are doing great. I have some of the most fantastic friends a person could ever want and renewed loving relationships with my relatives in Minneapolis.
Many people have asked me if I have been retested with the new DNA test or if I want to be. I had told myself that if I was ok at fifty years old then I would go ahead and take the new test. But fifty has come and gone and I still haven't done it.
At this time in my life I prefer to live with the uncertainty. I feel very hopeful and try to live my life to the fullest.
Worrying wastes time
To think I actually wasted so many years consumed with fear and worry is such a shame. If only I had known I was going to be perfectly healthy twenty one years after my test. So if there is a moral to this story it is this: Worrying is a waste of very precious time!! "Stop focusing on what you do not want to happen. Stay focused on what you want to happen".