First, I’m just sharing my thoughts and see that you have had lots of experience so I don’t mean to come across as lecturer. This is a topic close to my heart.
I’ve been working with clients with neuromuscular conditions including Parkinson’s and CMT for some years now. Theres a lot to go over here and a lot I could share with you. But the most important thing to remember is this “strike when the iron is hot.” With dopamine receptors and medications being affected by so many variables, there are going to be good days and bad days. This is true especially as conditions progress. Take advantage of the good days. Sometimes you’ll only be able to walk, somedays you’ll be able to truly play. So watch for what kind of day it is.
That is more important then any one exercise modality.
I’ve been with one client for 10 years, since the start of his diagnosis. We’re now at a very difficult stage, but he continues to be driven to me 2 x a week. Sometimes I have to hold him up as his body wants to just let go and lay down while we’re walking. BUT sometimes he wants to play with the TRX. So we do what we can when we can.
Creating neuromuscular connection and endurance is whats most important for training. When the chemical receptors aren’t firing properly the hope is that his neurological system (memory) is well trained enough to the point that the body will do what the mind can’t ask it to, ie. stand, sit, walk. Balance and coordination are very important as you already identified, but I would really focus on high repetition or timed goals. That makes the exercise more functional, as we need to be able to stand and balance for prolonged periods of time.
The bike is highly recommended for neurological issues and it has a high rate of safety and focuses on muscular endurance and repetition.
I have a lot of exercises that have been really effective that I can share if you’d like.
Lastly, I would personally recommend that the client be trained just like anyone else, just with modifications in mind. This is a long process and changes overtime. I’m speaking for myself not telling you what to do, but for me keeping my game face is important. I told all myself a long time ago that I wouldn’t talk to any of my clients with progressed neurological disorders like they were kids (i’ve seen it and i hate it). When they can’t move, I keep in mind that thats completely normal and I respond the same as when they want to see what they can do with the TRX. I am never their occupational therapist, I’m their friend that gives them the challenges they need on that day. Sometimes that just to a great walk outside.
I don’t allow anything to surprise me so that they don’t pull out of the moment and become self conscience. Thats something that can easily happen for a client when at one moment we’re talking and working and the next we’re both sitting on the floor in the middle of a crowded gym because thats where we ended up when the mind shut down.
Hope this helps you, it helped me to share my thoughts. Its tough somedays.