My husband was doing really well pre lock down and now even though in NZ we are back to normal he has taken a big step backwards with symptoms. He had been getting stiffer so has tried to take the C/L kinson which made him very nauseous so he was unable to take enough to do anything. He has just changed to madopar instant release little blue capsules. He has been taking 4 per day 5 hours apart. While his mood seems to have improved a little he is now having much more difficult with movement. Especially getting into bed. He can’t get comfortable and is up and down. Last night he got up to go to the toilet and was disorientated and banged his head on a wardrobe in my sons bedroom.
He is becoming excessive anxious and agitated and worried about his condition which seems to be getting worse. On the up side he is starting to a bit more like empty the dishwasher, put washing away etc which he hasn’t done for a while.
He has been taking 1g thiamine for a while, 1.5 before that and has tried up to 3 g a year ago. He also tried stopping it for a week when he was very anxious a month ago but it didn’t help so went back to 1 g. Now I am uncertain whether I should try higher or is it too much. Or has he progressed and it’s not helping.
He took mannitol for much of this time. Ran out a month ago and had a few weeks off it it which also coincided with anxiety getting worse and has been back on it for just over a week. I’m not sure whether it was more the lockdown rather than any chemical cause causing the anxiety although the kinson C/L seemed to bring it on. I feel like dopamine added as medication seems to cause him more anxiety as well as motivation. It is almost like his brain interprets motivation as anxiety.
Not sure what to do.