What Huntington's Disease is Like for Me

By Phil Hardt

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

My problems started with me not being able to remember simple instructions from my boss. There were times when I felt off balance at work and would have to lean against something for a while. There were also times when I would look directly at a part number and it not register. I don't know if I was actually seeing it but it wasn't registering or what. When this happened I found it best just to stop what I was doing and do something else for a while. Once I returned to the original task the next day I would be able to find the "missing" part.

I became a great liar and I hated it. I would say stuff like I forgot about the meeting or about talking with another person, or it was next to do on my list when in reality I wouldn't have the foggiest idea what my boss was talking about. I resorted to carrying 3 x 5 index cards in my pocket with copious notes written on them to get by for a while but they were only good as long as I remembered them.

At this time I was setting up inventory control systems on our production floor. First I would organize data on my computer to determine how big the storage racks needed to be by each part number and then actually move all the inventory out of the main warehouse into my new "store."

At the same time I was moonlighting at the local community college and teaching spreadsheets, word processing, and Windows 95/NT. I had to quit teaching because I couldn't even answer questions on material I had just lectured on. I also had to resort to reading the material right out of the book. I didn't like doing this either.

My driving woes started when I forgot how to shift. (I know, when was the last time you even thought about what you do when you shift!) In addition I also found myself getting lost while driving and resorted to leaving early for work and staying late so I wouldn't get frustrated if it happened.

The worst thing to happen to me was I began running red lights. I would see it but not even remember to stop. I was very concerned about hurting someone else or incurring a huge lawsuit that my family couldn't afford.

We bought an automatic so I wouldn't have to manually shift but then the next thing I couldn't do was judge the distance to safely stop when the cars in front of me would put on their brakes. This meant lots of screeching stops or actually rear-ending the car in front.

Needless-to-say, I finally gave up the car keys. One of the blessing was that one of my fellow co-workers heard about my problems and asked me to car pool with him. I told him that I wouldn't be able to "share" the driving but wanted to pay him for the weeks that I should have been driving. He refused and became a very true friend who still corresponds with me.

I was petrified to tell my boss but one my co-workers did it for me because he said I was unsafe to be around moving equipment and machinery because of my jerks, memory and balance problems. I had heard that they would probably demote me and then when I finally couldn't work any more, I would get 60% of the lower salary for my long-term disability.

To my surprise, after my boss called me in he was totally sympathetic, arranged for me to do a desk job AND keep my present salary. He said he knew that I would be able to also keep my same medical/dental once I got in 10 years of service and that would only be 8 months away. He was another blessing. The new desk job reduced some of my stress and allowed me to make the time required.

My oldest two daughters both decided to get married within a month of each other (I think to make it easier on us). When my boss found out about this he called me in and handed me an envelope. I had no idea what was in it but broke down and cried when I opened it and found a check for almost $9,000 from some expensed chemicals that he had gotten permission to give the refund to us because he knew marriages were expensive.

When I got closer to 10 years I took a neuro-psych test and flunked it so my psychologist recommended it was time to quit. After quitting ALL of my physical problems quickly ended for about a year. I never knew how much stress I was actually coping with!

Since being home I've had to cope mostly with emotional problems such as severe depression, feelings of worthlessness, etc. I've noticed that it's almost like I don't have any emotions now. I know it sounds funny but everything that I loved and cherished before, I don't seem to have any feelings for now, or the feelings/emotions are greatly reduced. This scares me. I know some of the things I've done would never, never, never have happened before but now that they have, I don't feel any remorse or sadness for them.

I'm not sure who I am anymore, etc. It's almost like when I'm doing hurtful things I don't realize it (or maybe it's just not caring anymore) until a long time afterwards and then I don't feel sorry for what I've done and am virtually emotionless. Thank goodness I have a very loving and forgiving wife- my greatest blessing.

Remembering is becoming harder and I've also started having a hard time spelling, finding words to describe things, or even saying them without going: "M m m m m meredith" for Meredith, etc. I have also started pausing at weird spots when I speak.

Thanks for all the love and concern from everyone. If anyone would like to ask me more questions I would be happy to answer them: phardt1@home.com is where you can send to me directly.

Created and maintained by Renette Davis. Send comments for Renette to Renette by clicking here and comments for Phil to: phardt1@cox.net

Created: Oct. 23, 1999
Last updated: Nov. 14, 2013