Hi Everyone, my dad was diagnosed with HD 5 years ago and has been rapidly declining lately. His chorea was very minimal in the beginning but intensified in the last year. His cognitive abilities have worsened almost overnight it seems. My mom keeps telling me about things going on with the disease that sound more like late-stage issues (swallowing difficulties, virtually no ability to follow conversation, etc) During the last two years, I have had a really hard time believing that he has declined this fast. HD is known for being extremely slow, and while some things like the chorea are clearly HD, I feel like he has been given so many medications for so many things that a new symptom pops up as a side effect of one medication and hes given another medication to control that "symptom." As his chorea has intensified, he was finally given xenazine and it has thankfully knocked it down by about 80%. This gave his cognition an even more severe hit to the point of being catatonic. He doesn't have much chorea, but he is in this almost zombie-like state where he has to be told to do literally every little thing and barely responds to anything that is said to him.

What finally has convinced me this is an over-medication issue is that we went to visit his brother( who has had HD for atleast two years longer than my dad) or the first time in 5 years. My family was worried that my dad would get upset if he saw his brother in a much more advanced state than he was, but the result was almost the opposite of what we had expected. We were assuming his condition would be worse than my dads, but it turned out that my uncle was still able to talk and follow conversations easily 5 times better than my dad.

I am fully convinced at this point that these medications are doing more harm than good. I had seasonal affective disorder for several years and was on antidepressants a couple times and had horrible results. Everyone else in my family who has been on them seems to be negatively affected by them, so I am thinking my dad is the same way. The problem is that since he has HD, I am worried about whether or not weaning him off of some of his meds or reducing some of his dosages will be risky even though its clearly causing problems. Has anyone else been through a situation like and how did it go?

My mother turned into a completely different person when she tried medicine for HD. She was also starving herself.
I talked to her nerologist and we got her off of everything. and she was able to live a good happy few more years while only taking
fish oil. she died in her sleep.
she was in a nusing home with many poeple with hd and they came in one way and ended up as zombies!
Laura

I have to agree. After one hospital bout my wife had meds that had to be taken in a pattern of every 2 hours! I stayed at home with her and over a month, I got her all the way off the meds. She was more alert and in better spirits for a while, and she was in my mind anyway, better off.

Gradually she did have some issues. After a while she did need more meds to keep her mood steady. It is very tricky trying to balance all of that out and it takes a great deal of time. Pulling someone off these strong psychotropic drugs isn't for the weak of heart.

I'd try to take her off what you and her doctor consider to be either risky or not as beneficial as hoped after review. The fewer the meds the better for everyone involved.

It is important to help the doctor by keeping a fairly accurate log (or chart) of when you give the meds and reactions you see. This is data that is invaluable for a doctor.

Today i took my husband out side for the first time in 22months ,this would not of been possible a year ago. They had him so over medicated he was sleeping 23 hours a day.His skin was yellow,couldn't eat,bed rails up,his chorea was out of control.When i questioned it they said i was in denial and the this was the HD's natural progression ? I said huntingtons progress that fast 3wks ago he was walking the dog ,walking a flight of stairs to use the bathroom,eating ,talking etc.They even increased it more in the end .Finally after taking him out of that place and off all the meds he has gone back to his old self walking,talking,eating like a horse gained about 25 pound or more in the last year.He is thriving .But man he exhausted me, talked my ear off in his jumbled way today outside. He was so happy you'd think he was at disneyland.3hours we were out there

We are going through something similar - my husband's dosage of anti-depressant was tripled by the HD doc and then remeron was added which would up putting him in the hospital in what was the worst episode of both our lives to date. then he was off that med and put on something else at too high a dosage. Now we are working with a doc weaning him off everything - he's doing much better. he is on fish oil and the other meds are almost all phased out. good luck.

What or why is fish oils for is it good for HD or just good ?

if you do your research on this site youll see that some people believe certain supplements are good for hd based on limited research. some also think exercise and eating right may help.
fish oil is the only one i am taking right now. i think it may help with my movements and also my moms.
Laura

Fish oil and other supplements may help build new brain cells to offset the ones that the HD gene is killing. Exercise also generates a thing called Brain Derived Neurotropic Factor, or BDNF. The HD brain is deficient in this protein and regular exercise may build enough to preserve or grow new brain cells and slow disease progression.

Will

It seems obvious that exercise would help my husband, especially considering he has a low pulse rate. His fatigue however seems overwhelming. So far I've just let him do what he feels like-usually sleeping 12-15hrs a day. None of his drs., including his cardiologist has recommended exercise. Am I missing something? Should I start to encourage him to exercise even though initially it might cause more fatigue? Has exercise helped anyone else who has overwhelming fatigue?

Thanks
Audrey

Audrey..
The tough thing about low pulse rate and exercise is that the heart may not be able to respond properly to the increased oxygen need during exercise. This would cause dizziness, and possibly passing out. Most cardiac patients are recommended to perform only light exercise, walking on level surfaces at a moderate rate, for example, and with frequent pulse checks to be sure he is responding appropriately. If you express an interest with his physician, they would give you the OK and a target heart rate in his special case.

Interestingly enough, my husband with HD wanted to start running again. He has a moderate amount of chorea and some balnce issues, so I was worried to have him try, but we did go out to the track. He looked a bit off kilter at first until he got up to a good speed, but once he hit his stride, you wouldn't be able to tell he has HD. It was pretty amazing. Endurance is still an issue, but he ran 10 mins the first time and 20 the 2nd. still pays for it the next day until he gets used to it.

Patty

Thanks Patty-your answer was exactly what I was looking for. We have an acre and when the weather permits he does walk the dogs around. It's been too hot lately to do too much plus I'm working. He'll get out more when things cool off but for right now I think we'll leave things as they are. Thanks again.

Audrey

And i think when it comes to the question of over-medicating, with hd each person is sooooo different. Some do better on less meds, and some do really well on a real cocktail of medications. I think with hd, each persons meds have to go through trial and error. And definitely, if someone with hd is still able to, healthy lifestyle and exercise help so much.