Hi Everyone-

I hate to ask another "symptom" question...I can imagine how old those get! I haven't seen a specialist in HD (at a Center of Excellence, etc) yet...so I'm full of questions.

I have muscle weakness, where my muscles just give out. I can be sitting, standing, doesn't matter. For lack of a better explanation, my muscles turn to butter.

Right now my arms are really bothering me the most. Even typing this, and my forearm muscles just "give." It's not all of the time, but definitly most days, if I were honest. It's a very distinct and bothersome feeling- and I am wondering if this is a typical HD feeling?

Does anyone have any experience with this? My only experience was with my Mother, and she didnt' talk about any of this as she progressed.

Thanks for you info...it's driving me crazy!

Nerves are responsible for controlling the contraction of muscles, determining the number, sequence and force of muscular contraction. Most movements require a force far below what a muscle could in potential generate, and barring pathology nervous fatigue is seldom an issue.

Nursing Homes UK

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High School Diploma

It is normal. If you go to this link, you can download the newest edition of the Physicians Guide to HD. It's very helpful & should answer any questions/worries you may have.

[www.hdsa.org]

I have this problem with muscle weakness, too, Purplegal. It has progressed over the years from right hand, arm, leg, calf, foot, tongue movement to the right--a progressive weakness and the muscles will just suddenly "give out" when I am moving. Quite frequently. Continously really. The left side of me is affected now but is still stronger than the right side. Hard for me to stand and walk. Carry things. Type with right hand. Take a shower. Hold food utensils. Write. Chew on right side of mouth.

Margie

Thank you Margie for sharing your experience...it really helps normalize what I am beginning to go through! I too have issues with dropping and breaking things!

At first I thought I was fatigued somehow and my muscles were tired, but I experience it daily where they just give out. I can be sitting down, working on the computer, whatever...

I wish you well- thanks again for answering the questions that I have!

I've read peices of the Physicians Guide to HD, but I need to be careful as some of it is depressing to me, and doesn't help me "stay in the moment" and live day-by-day. That's why I appreciate talking to people that are living today with HD.

Sarah

I really glad that there are "symptom" questions. Its how I've learned. I appreciate everyone's input. I started to read that guide myself. I know it is hard, but there is some good information in there. Again, being away from a center, Its great.

Yeah I agree with you guys on reading the Physicians Guide to HD but look at it in a positive way. As mare said, there's a lot of great information in this guide.

I'm HD pos myself. I was part of the PREDICT-HD group the guide talks about under the cognitive chapter. The study group is a blind one so I can't see any of my results. I've always wondered what the Center of Excellence found and it was scary and depressing reading it.

I'm also part of the new PREDICT study, PREDICT-HD 2.0. I know I did worse this past year for the study. I don't know if it was because of the lack of sleep I had but either way, the smells were harder for me to distinguish, as well as the facial expressions, which would be something my tiredness would not have changed. Reading this guide has changed my plans around. Now that I know what the results are for the first PREDICT study and how I've been feeling, I'm sure it's all HD related. At first I was mad at myself for reading the guide but now I'm happy I did. The guide opened up my eyes even more.

I finally got myself a primary doctor and plan on getting an MRI. I'm going back to the technical college next semester but depending on the MRI results, I'm not sure if I want to pursue the same degree. Culinary Arts sounds dangerous for someone with HD who is accident prone. I don't think I should be a cook at a restaurant because of all the kitchen dangers. Pastry chef wouldn't be good either because, in the future, I won't have a steady hand. I'm thinking it'd be great if I could secure a kitchen job at a hospital (for the benefits) but I'm not sure how dangerous that would. I also imagine it'd be hard to get a job at a hospital. I want to look at the different degrees to see if I can find one that'd be more HD friendly, both with the environment I'd be in & the benefits the position offers. However, I'm also not sure if I'll go back to college. If my HD is further along then expected, going part-time to school for three plus years might not even be worth it.

Try to look at finding out more about yourself and the disease in a positive way. The more knowledge you have, no matter how depressing it may be, the stronger it'll make you. You will have the power to take control of your HD and better plan your future. Ultimately, you will make everyday life a little easier with knowing how to take that control.



Edited 2 time(s). Last edit at 05/12/2012 03:11PM by lzieb.

My oldest son (39) has the same thing, he says his knees just buckle out from under him. No warning. Gotta be a scary feeling!
So far, he hasn't injured himself as a result but I think it may be time to discuss him going out on disability as he works in a factory and falling in there could be a disaster. I also do think fatigue plays a factor, his is a very physically demanding job.

Take care,

Carla

Exhaustion, fatigue, muscle weakness have been a problem for a while. Numbness in my finger tips (don't know if it's related). The more fatigued, the more congnitive problems. I can suddenly feel as if every drop of life has been squeezed and I know it's bed time.

lzieb. The smell comment has me curious. I lost my sence of taste and smell about 1.5 years ago.

Mike

I have experienced simular muscle weakness. At my appt last year I asked why my head dropped alot and why my knees and other parts would suddenly relax. According to my HD clinic DR its the chorea going both ways. It can make your muscles suddenly jump but it can also make your muscles suddenly relax without warning. Both are involuntary and both are chorea. I was very suprised to learn that. I had incorrectly thought of it as muscle weakness as apposed to chorea.
I find hot water liquifies my muscles when showering and so does fatigue...



Edited 3 time(s). Last edit at 05/17/2012 11:56PM by Kelly B.