Hyperactivity in Huntington's disease
He has been spending some time in the morning at a Day Care Center. On his way home, my father has been caught up in a growing frenzy so that he would continually walk around the room, constantly getting up from the chair and sitting down (which, because of his precarious balance, is dangerous, often causing falls), and he would constantly ask to eat. Around 07:00 PM he usually seems to calm down a bit, he then dines and goes to bed.
For some time now, this hyperactivity has increased a lot and is manifesting itself at the Center. He is described by the operators as "more nervous" and has sometimes tried to move away; on these occasions it is not possible to stop him, he tampers those who try to hold him down, and he has hurt himself by punching the entrance gate, threatening the staff to open it so that he can get out.
We are deeply concerned.
My mother, who takes care of him all the time at home, is very tired and can no longer sleep.
What can we do?
Besides the neurologist of the local health unit, ASL, we have tried to turn to other medical professionals, resigned for the difficult path of the disease and the prescription of new drugs that seem not to act.
For us in Sardinia it is not easy to manage and find the right approach to a disease, like Chorea, which is, by itself, already a rare disease.
We perfectly understand your discomfort which is, unfortunately, shared by many families facing the same difficult problem. Considering that, as you can imagine, an adequate answer would require an evaluation on many fronts also through a thorough visit, we would like to tell you that there may be two components that influence this behavior of your father: one is certainly psychological, and has to be investigated as far as possible. Are we sure that he does not suffer emotional stress for some reason outside the home context? The second component is medical. We often observe that some drugs produce akathisia - the inability of people to stand still - as a side effect, which is completely different from the symptoms of "chorea". As you might understand, the combination of the two components can produce what you observe in your father. Through the Internet, we cannot go further, but we suggest, however uncomfortable this option might be, to come to Rome if you want a more complete opinion from us, this would allow us to evaluate every aspect.