Hi Everyone, I too care for my husband who was diagnosed 5yrs. ago. Unfortunately he already had a pre-existing condition, ankylosing spondylitis, which had run it's course years ago leaving him with very little mobility, and a host of related problems. Now, I'm finding it extremely difficult to determine where the AS ends and the PD begins. I'm afraid I do the very thing I was so adamant I wouldn't do, and that is nag him to help himself as much as he can. Not a lot, but I still feel guilty each time. I find it hard to reconcile the images of these 2 people. My husband now, and as he used to be. My heart melts when I look at him struggling to hold a pen, or a glass of water, but it swells when I see him hunched over the sink washing dishes. It's the only thing he can manage to do now as he can lean against the sink, and he loves feeling useful. Knowing that physically he will only deteriorate scares me, as I'm older than he is and riddled with arthritis. It is painful for me to haul him in and out of his chair and his bed, but we cope. Dressing has become a pantomime, so that start's our day off on a high, humorous note. I must say too that we have both kept our sense of humour over the years, although looking back on what I've written so far would indicate the opposite, LOL. His memory is really affected, but he's lucky as he gets to enjoy fun things over and over again. Another laugh inducing matter is of his voice becoming so soft, it's really difficult to hear him, exacerbated by the fact that I'm hard of hearing. Other people say it's better than going to the theatre, hearing us have a "conversation!"
I would like to ask a question. I know that difficulty in swallowing can be a symptom of PD, and Ray has been exhibiting that occasionally over the last 18mths. I will describe what happens, but I would really like to know if any of you have experienced the problem, and how you handle it. I make sure his food is cut up small, but without any apparent reason he occasionally has a bout. It is heralded by a hiccup which immediately puts us on alert. Sure enough, within a minute his mouth starts filling with saliva and continues to do so for at least one hour and sometimes much longer. He also coughs as though there is something stuck in his throat, and has to expel the saliva continuously. He says it feels as though there is something in his throat, but I don't think there actually is. Anyone out there know what I mean? Of course, when this happens, he cannot eat for quite some time, and we both also become very apprehensive about what and when to feed him next. Does this ring a bell, or is he on his own with this?
There is so much more to talk about, but I'd better leave some for next time. Good to know you are all out there..........it actually gives me some peace.