Thursday, August 20, 2009

A Day with Parkinson's Disease

Typical day in life of this 6 year PD patient

I slept during the night from 10 pm till 7:00 am waking up along the way at 1:30 and 4:00 am for trips to the bathroom. My cane is near the bed so that I can reach it in the semi-darkness.

At 4:00 am, however, the bedroom curtains turned into unknown creatures although they didn't prevent me from going right back to sleep. I've been visited like this before. These minor hallucinations which are actually illusions which my mind misinterperts from the room furnishings occur occasionally to plague me.

I stopped getting the bad, heavy duty hallucinations, the side effects of Mirapex and Selegiline when I discontinued taking them three years ago. Back then I saw and heard people, conversations, things that might have been but weren't. I thought they were gone for good but still every once in a while I have the illusions. Often I'll lie in bed for an hour thinking about our bills, medical insurance and work which needs to be done on the house and fall asleep.

7:30 am - I wake again and awkwardly dress myself, letting Marge sleep a bit longer. She is usually up and back at the computer after feeding the cats and dogs but not today. I make myself a giant cup of coffee - it's PD medicine too - and carefully climbed the stairs to the 2nd floor where we have our office. I still need to put up the hand rail for those first three steps. I have all of the parts but I am afraid that I may no longer have the ability. I should have done it years ago.

9:00 am - I am taking my meds and working on my plan to deal with my constipation. I will drink a lot of water and eat some fruit...and hopefully some chocolate - hidden by my wife so that I don't overdose. This problem goes with Parkinsons for most people, but since I went on the low-gluten diet about a month ago it's gotten worse. I made a promise to give the diet a fair chance - 90 days - so I have to stick with it for now. More fiber may be the best solution but chocolate does help.

10:00 am - Supplement time. Between the supplements and meds, I open 25 different bottles every day, most in the morning, a few more in the afternoon and some before going to bed. When I'm going out I take the afternoon pills with me. Our current health plan mails a renewal reminder well in advance so that I am no longer rushing around when I realize that I am near the bottom of the bottle.

10:30 am - I've read my email and now I'm going to take a shower using my latest PD addition: a shower/tub seat. I find it a bit difficult to negotiate my first leg past the seat but the other leg is no problem. It's going to take practice until I become comfortable. We'll probably add a grab bar to the side of the tub. I don't want to fall, the tub is cast iron, but then, that's the point: the plastic seat will protect me. I have only had one minor fall since my PD diagnosis and that was in my bedroom not the bath. I take my first shower siting in a shower seat and even though I know I need to, it makes me feel like an old, old man.

12:00 pm - 6 days a week I go to a therapy center where I workout on Nautilus machines for an hour and/or sometimes swim. It is here and at my monthly support group where I meet other people who are suffering from Parkinsons. Yesterday I shared my feelings with Danny, another PD patient whose PD is more advanced than mine. Danny gets around pretty well with a walker, he just needs some help getting started. We sat side by side riding recumbent bikes and talking about how much we missed our jobs and the friends we had worked with.

When we leave the therapy center we try to run an errand or two but often I wait in the car because I am not comfortable walking in crowds of people.

5:00 pm - I have a no or low-gluten dinner. I want to keep active so I try to be working on at least one blog article at all times as well as keeping up with the vacuuming, checking on the painters, cleaning my bathroom, and whatever I can do around the house.

Unfortunately when I am feeling depressed it's hard to do more than sit right here reading the news online or on TV. I try to watch Jeopardy ever night, I know it is good for my brain. And then I spend the rest of the evening alternating between entertainment and reading about more PD developments.

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