What Huntington's Disease is Like for Me

By Lou Wilkinson

This was originally a letter to Canada Pension Disability Insurance and was posted to hunt-dis, the online support group for Huntington's Disease. It has been added to this website with permission from Lou. For more information on hunt-dis, see Mailing List for Huntington's Disease

I had severe emotional problems in my thirties, was on anti-depressants and often had rage attacks and displayed inappropriate behavior. I am still on anti-depressants and will be for the rest of my life. I could not sleep and was often awake 4-5 times per night, every night.

At least two years before I learned of Huntington's in my family, I was having severe difficulties in my teaching. I had several emotional outbursts and anger outbursts and more than once had to leave the room to gain control. I did not know why this was happening at the time.

I kept falling for no reason, injuring myself often, I would bump into desks and tables and hit my shoulder or elbow on door jams as I was going through them. My main concern was for my memory as I couldn't seem to keep organized, forgot meetings, lost things as soon as I put them down and was generally confused.

Although I am getting worse, since discovering that I have the disease, doctors have been able to prescribe drugs to help ease some of the symptoms.

While teaching a class, I would stumble over my words often and was beginning to think I had developed a stutter; however I also would stop talking in the middle of a sentence because the word was gone. I had a lot of difficulty recalling content and I consistently called students by the wrong names and couldn't remember times, dates or numbers.

I sought medical help and got psychological counseling. Because I was also having marital problems at the time, I assumed that stress was the cause. I was tested 2 years later and by then the symptoms had gotten worse.

I taught for two more years until I got to the point where I couldn't remember anything and the students were starting to take advantage of the situation. Co-workers had to call me just before a meeting. I was teaching multi-media (computers, Internet, photography, printmaking, design) all at once in the same room.

My ability to multi-task got so impaired that I had to depend on students to teach each other methods. This took a tremendous amount of energy and I could not keep it up. I was going into my dark room at noon for silence. The noise in the school caused me to have severe headaches most of the time.

Presently - I am doing better with exhaustion since I can lie down when I get tired. Stress makes my symptoms much worse. Crowded situations cause me to panic and get confused. I am able to shop in familiar stores but have trouble with my sense of direction. Making decisions is difficult because my mind won't stay on one task for long and any distraction causes me to forget what I was doing.

Although I typed this myself, it has taken me 3 hours to get to this point, even though I knew what I wanted to write. I have to keep stopping to wait for a word or thought to complete itself. My thinking process has slowed down so much I have lost my self-confidence and try not participate in conversations requiring me to interact with more than two to three people at a time.

My brain does not store information correctly and retrieving that information is very inconsistent. My reading comprehension skills have been greatly diminished - by the end of a page I cannot remember what I read. I find it increasingly difficult to follow directions, can no longer do many of the things I used to be able to do. My mind wanders or just goes vacant. I sit and stare for long periods of time and then my mind will work overtime, thinking about everything I am doing and being careful all of the time to say the right thing, not get hurt, not forget things. It is impossible for me to relax my muscles and I have neck problems because of this.

Huntington's Disease is causing my brain to degenerate. These difficulties occur randomly as the disease progresses. This unpredictability can be extremely frustrating for me and when I get frustrated I don't just let go of it, I panic. For example, I may make a request clearly at one moment but have tremendous difficulty saying it right only a few seconds later. Because of this I have found that I don't talk much anymore and try to avoid saying things spontaneously as they do not come out right or I overreact and say something inappropriate.

I have been treated for depression and suicidal thoughts.


Converted to HTML by Renette Davis with permission from the author, Lou Wilkinson, who had Huntington's Disease. Lou died February 8th, 2004. Send comments to Renette by clicking here.

Created: Oct. 22, 1999
Last updated: Dec. 4, 2010