Hello and greetings again.

My husband has just been diagnosed, though is symptomatic and increasingly bothered by his chorea. At his most recent visit to the neuro, his chorea was not too bad, so he is not yet on medications for that. He does not want to be overly sedated, but in his words it feels "like he has no control over his body tonight".

I am an occupational therapist, but have only worked with HD once before in my career. These are some techniques I have used with other neurological patients with motor control and tone problems. Can anyone let me know if these have been tried or work with you.

Diaphragmatic chorea: He is being increasingly plagued with constant burping (rate every 2-3 seconds at times) which is worst in the evening. He is now telling me that this is causing him to reflux his supper. Tonight, I tried getting him to do some deep controlled breathing, figuring that voluntary contraction and relaxation of the diaphragm would overcome the chorea. It seemed to work during the technique, but did not have lingering effect. (also, he is not really the type to "buy in" to relaxive breathing) If anyone out there knows of another technique which has been helpful,please send along..

Chorea of the extremities: Neutral warmth has been shown to relax tone and motor control in neurologically impaired patients. Basically this is a fancy schmancy name for throw a big blanket around him. It is the same concept of why therapeutic pools are heated to 96 degrees. The muscles enter a natural relaxation state when warmed. It is getting cold here in Massachusetts, so I have him wrapped in a blanket and lend him my UGG slippers.

Contract/Relax: this is a technique for targeted muscle relaxation. I happened to notice that he naturally started rocking in the glider chair once comfortable. The action of pushing on his feet helped to relax his legs, so I had him try alternating contracting and relaxing his arms on the arm-rests.

We are still very new at this aspect of working together. Though we've been married for 7 years and together for 9, I have never been his therapist before, so I can't push as a therapist if he is not fully on board with the techniques.

Any suggestions of other things to try are greatly appreciated.

I can't say this for a fact but I have generally not found therapy to be overly successful. I have not even heard of it being overly successful. I just don't think things such as relaxed muscles seem to matter while the brain is sending the signals it is. Perhaps a relaxed mind works better... as most people will tell you chorea tends to worsen during stress and can almost disappear during sleep. If you have a willing participant there is no reason not to try. My wife never seemed overly upset about her chorea. Hers was controlled with risperdal but it was not prescribed for that purpose but for her behavior. TBZ will be available soon in the US for chorea. Both carry their baggage and I guess you or he will have to weigh the trade offs.

Thanks Eric:

They are considering risperdol in a very low dose, just as in your situation, more for behavior than chorea. His chorea does nearly disapear during sleep.

Yes, relaxation of the mind will only work if the mind is "open" to it.

Thanks for your feedback.
Patty

Well, risperdal in that case is a good choice. Teresa started on a low dose too. There was a two week to month adjustment period where she slept a little longer and it was given in the evening so it kept her bedtime fairly steady but there was a very good change in her behavior. Helping with chorea is sort of a side effect of the med so it may or may not help. Hope it does. As for relaxing the mind... always easier than done. Goes for caregivers too.

Hi Hoping4aCure,
I am a pHD, 39 y/o, have had symptoms since about 35, 43 CAG. Have had lots of trouble with dystonia--problems with diaphragm and burping as well as dystonia of shoulders, neck, tongue, eyes, back, legs, etc.

Lamictal has saved my life. I was in misery and could not really move or do much of anything--was having trouble talking and swallowing. When I took Lamictal--WOW--a day or so later I was "cured"--as cured as you can be of course with HD. I could move without thinking about moving. I could speak, I could sing, I could breathe properly, I could see (no more eye spasms). THis medicine does not work for everyone but it might be worth a try. I am so thankful I did.

Margie

Thanks Margie!

Is that a prescribed medication? It seems to be bothering him more in the evenings, to the point where he can't get settled at night. Anything to make him (and me) more comfortable would be a blessing!.

Thanks
Patty

My hubby was prescribed many different meds before we found Risperadol. First Haldol, which made him a zombie and had many unwanted side effects. Then Klonipin (sp) which made his balance issues an even worse nightmare, had to go off that one very quickly as it made his balance problems into a real hazard. For a long time the Dr. thought he had "tics" and gave him a blood pressure med which side effect was to reduce tics and it was Clonidine. Then finally he tried Risperadol and that was the one that worked and really helped him sleep well all night long and helped reduce the chorea. Previous to Risperadol he would thrash violently at night and now he doesn't even move an inch and sleeps like a baby (and me too!!!)

Here is a link to the article about the drug called Lamictal (Lamotrigine) [www.neurology.org]. They give this to people with epilepsy too.

Yes, it was prescribed to me by my doctor at my Center of Excellence.

We had been trying just antidepressants but it just was not helping with the spasms. This medication immediately helped me--a true Godsend. The doctor said eventually these meds stop working but then we can always pull out the "bigger guns."

They did a study to see if this drug could retard disease progression in Huntington disease (HD). There was no clear evidence that lamotrigine retarded the progression of early Huntington disease over a period of 30 months.

However, more patients on lamotrigine reported symptomatic improvement (53.6 versus 14.8%; p = 0.006), and a trend toward decreased chorea was evident in the treated group (p = 0.08).

It could be worth a try.

I had problems settling at night due to spasms and dystonia too. This just relaxed my body. I still have movements and some spasms but not like before and they do not bother me like before.

Margie



Edited 1 time(s). Last edit at 10/08/2008 05:05PM by maahearna.

Hey to all!

Well hubby started 0.5mg Risperidol last evening. I think his chorea is already looking better. The burps are much less frequent, which is a blessing to both of us.
I hope it will also help with his mood without being overly sedating..that is his biggest concern.
Patty

The sedating affect may not be as noticable after a couple of weeks as my hubby seemed to adjust after a while (he also is only on 1/2 mg 2 x day= total 1 mg day).
I would say the Risperdol made him as I would describe it
"more cooperative", which was a good thing.

Just remember, he may be sleepy for a while... even for a month. If nothing really terrible is happening, stick with it. He will probably adjust to it. It is supposed to make him feel differently and it takes a while to get used to feeling that way. It probably will help with his mood. At least he won't be as quick to anger. That doesn't mean he never will.

Thank you all for your suggestions.

I am hoping that he will stick it out through the adjustment period if that is the case. I'm sure it would be of no surprise that he is impatient with regard to changes in his routine and how he is feeling.

Eric, your comment in another post really hit home with me. (regrding that we as the family need to be the adult here and we need to be more flexible. ) I live that every day, but my kids are 5 and 6, it is harder to explain to a kindergartener to take the high road. I return to work next week, and Mark will be spending 4 hrs a day with my head strong 5 year old girl. I am praying that they both can find some peaceful neutral ground.

Patty