Hi Everyone,
I'm a newbie, and I really need to chat with people who are suffering from Parkinsons so I can better understand what my husband Ray is going through. I can see the tremors; I can see the deterioration in reactions; I can see the slowing down of physical movement; I know of his fear of falling; I can hear his voice becoming indistinct; I am aware of his memory failing; I am afraid!
This person who I married for better or for worse, has suffered for years with an arthritic disease called ankylosing spondylitis (arthritis of the spine). Unfortunately for him it has progressed to it's "nth" degree. This means that all his bones from his pelvis to his cranium have become completely solidified, no movement at all. He is stuck in the shape of a candy cane, as the spine bends as the disease takes over. This has limited his movements so much that he uses 2 canes to shuffle around with, or a wheelchair when out and about. Now, he also has PD to contend with, and for some reason he appears to have become very content to allow this dastardly disease to take over his very limited mobility. I am at my wits end as to how to motivate him to please try to help himself, as this is the part of Parkinsons I do not understand. I am older than my husband, and although I've kept myself pretty healthy my joints are worn out. I already have had a knee and hip replacement, and am going to have the other knee done this year. However, it's my husband who I'm concerned about, so if there is anyone out there who can give me an idea of what it's like to live with this disease themselves, I'd be very appreciative of all responses.