Hey all,

I posted this in a previous post, but feel it kinda got all jumbled in with my medicaid concerns. So, I'm going to ask it again. Has Physical/speech therapy been beneficial to your loved one? My dad is prob in mid-stage (not really sure), he still ambulated, but of course has balance issues and moderate chorea. He has been in NH for about 5 weeks and hasn't received therapy yet, but hopes to in the next month, however, NH tells me that since HD is progressive it will not improve his quality of life. For some reason, this just doesn't seem true to me, but have been through so much regarding his meds, medicaid, etc., I'm starting to feel a little defeated and starting to believe them. Just need some opinions. He has trouble swallowing too, and it just seems to me that speech therapy can help with swallowing issues, therefore improving quality, but maybe I'm wrong about that? Thank you.

ri, my wife is also mid-stage and is particpating in a study conducted by Dr. Cheryl Giddens with Oklahoma State University (OSU) to measure the improvement in breathing, swallowing, and voice that may come as the result of doing some specific exercises each day. My wife particpated in an earlier study conducted by Dr. Giddens using the same exercises and achieve measerable improvment in her voice modulation and swallowing. The earlier study required the participant to keep a log of the exercises to be turned in at the end of the study. For the current study a graduate assistant from OSU calls my wife mid day each week day and leads her through the exercises over the phone. The study will continue until the end of the school year and the participants tested to measure improvment. Here is the OSU website if you would like to learn more about Dr. Giddens' work [cdis.okstate.edu].

Yes HD is progressive, but do not feel defeated. There are may things that can be done to help along the way. I find that keeping my thinking in the present and doing what can be done today helps me to stay calm. It is when I start thinking about what may be facing me tomorrow that I become anxious and less useful. Thanks for posting.

My husband had wonderful results from physical therapy and he loved to go. He looked forward to it everyday and would even go on his own at different times. Unfortunately, Medicare stopped paying for therapy so the nursing home wouldn't let him continue. I noticed his balance has gotten much worse since it was discontinued. I think your wife would benefit from therapy. Don't let the nursing home tell you otherwise. It's worth a try!

RJ, I am early stage. Went through threrapy for vestibular reasons, found out I had neurological issues and now I'm here.

Therapy at the time didn't do much. It was noticed I was not as bad as when I went in but it was still bad.

My Neuro has emphasized the need to be active. From many post here and Marsha, those who do best are the ones who exercise to fitness.
Your Dad probably can't at this stage but I've found over the last two years if you don't use it you sort of lose it.

Hope this is helpful. Give him every opportunity. If you don't try, you won't know.

Mike

Sorry rj, just realized that I said your wife instead of your dad in my post!

Cosmo,

Your advice about living in the present, one day at atime, is a great idea! God Bless you.
paula

My sib has had speech therapy and its helped trememdously.

So far the balance exercises have not improved things that much, but Im not sure if we've found the right PT fit yet.. he does workout 3-4x per week for almost 2 hours. that's not new, that's since his late 20's. he is 36 now.

In the life of HD the outlook is not only about improvement... it is maintaining the range of motion... it is very important to participate in activities that will help phd's maintain use of function and falculties as long as possible... I'll be honest, most professionals were releuctant to work with my family members with HD.... either because they were afraid of what may happen if they pushed them too far or if they were able to complete excersices they considered no need to continue... what I found to help was specialist... neurologist, member of the team at Center of Excellence, or anyone willing to write a letter or documentation stating that an excersice routine/activity is necessary to maintain function.

Good Luck,

Stacy

Thank you all for your support and advise!

One more thought I would add: participating in therapy (physical and vocal) not only had a direct benefit, but it provided my mom a real psychological benefit, too. It made my parents feel like they had some control, that they didn't have to just give up and let the disease take everything, but that they could fight it. They could hang on to skills, or improve weaknesses. This really gives hope in an otherwise hopeless situation.