@garychicago
I was diagnosed with Primary Autonomic Nervous System Failure Jan 2025 - primary instead of pure due to the of REM sleep behavior disorder which indicate more central brain involvement instead of pure peripheral nervous system involvement. Clonazepam has greatly improved the REM sleep dream acting out. Midodrine 2.5 mg two to three times daily greatly helped with the orthostatic hypotension after exertion or in hot weather. Miralax nightly and Senna tea (OTC) helps with gut slowdown, bloating, etc. Omeprazole helps with GERD symptoms, but was recently changed to Voquezna for better control. I know in advance to limit PO intake if I'm not going to be near a bathroom - urinary urgency is a nuisance. I exercise regularly and follow up with a Movement Disorder Specialist every 6 months. Showing some signs of progression of symptoms with difficulty in writing, slight imbalance and slowness in walking - being very careful not to fall. These symptoms suggest progression to Parkinson's or Multiple System Atrophy. Getting emotional support and trying to live one day at a time.

Everything I have read stresses the importance of exercise in treating Parkinson's disease in particular. There are some studies that have reported improved nerve communication with exercise and not just maintenance of functional status. The literature states that up to 30% of PAF patients progress to Parkinson's or atypical Parkinson's so it seems there is no downside to exercise as long as you take your meds for hypotension (Midodrine) and stay hydrated to minimize the risk of falling. I've experienced those acute spells of lower extremity weakness too - usually in the morning after climbing the steps or exerting myself briefly. Bending forward for a couple of seconds and/or sitting down for a brief period prevents passing out for me. Both my cardiologist and neurologist recommended Midodrine for hypotensive episodes, but I know Atomoxetine is an option too,