My wife, Brenda (I am her spouse and carer) has stroke related Vascular Parkinson's. Some of her symptoms are similar to those who suffer from Classical Parkinson's, but medication does not help. (See article Summer edition of Parkinson Magazine.)
Mentally she is very bright when reading, doing cross stitch, puzzles, IQ tests etc. However, her mobility is poor and deteriorating. She has problems getting in and out of a chair. Her legs freeze when she tries to move and she is constantly counting to get them moving. Once moving she can walk short distances with her Rollator Walker, thought only on the level, and the slightest of slope causes her to panic and freeze. She cannot work out how to negotiate with her Walker. The slightest unevenness of surface, even small stones, which she sees as big ones causes, her problems. Instead of standing close to her walker and keeping going, she stops and tries to push the Rollator in front of her and move it about. She pushes it in front of her like a pram, which puts weight and balance in the wrong place. Balance is a problem and she is panicky. Anything strange, a cafe, disabled toilet etc., causes her problems. It is therefore difficult going out anywhere. I have to ask: Is there a disabled toilet? Can she get to it? Can she use it? She does not seem able to let her intelligence overcome these difficulties.
The most frustrating thing is that everything seems geared up to those with Classical Parkinson's, but there is little help with other forms of the disease. An excellent local Parkinson's exercise group helps to keep her supple, but cannot address the particular problems. We have encountered others who have expressed similar frustrations. The Neurologist is of little use. He only assess her, but has not treatment plan to offer. It is very frustrating.
Do others have similar experiences, and/or have found any help on offer?