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.

Still Not Sleeping Well

Two weeks ago I posted that I was having trouble falling asleep at night. While I haven't been completely successful overcoming this problem, I've made some progress. Eventually I do go to sleep but I agonize about it for a long time each night.

I seldom nap and I'm not gong to bed until I'm really tired. I'm trying to go to bed at the same time every night while my wife comes to bed a few hours later. That's a problem as I wake up then and that's the point where I have the most trouble getting back to sleep. This is the point where I get panicky that I'll never get to sleep again and I start feeling very anxious.

Psychological issues are part of this too. My PD hadn't progressed much in the five years I've had it but lately there has been a progression - harder to get dressed by myself, gait worse, left arm weaker...I'm starting to look a year or two ahead instead of staying in the present. I think that's where the panic that I feel in the middle of the night originates.

I've started exercising more Aqua therapy, Nautilus machines, dumb bells, Total Gym at least one of them every afternoon. I don't smoke and I only drink decaffeinated coffee.

I don't want to take sleeping pills because of my Parkinson's disease but I'm taking an aspirin and two CoQ10s just before I go to bed and when my wife gets into bed with me because it helps me fall asleep again.

I was reminded that I used to fall asleep almost instantly. I don't have somnipathy, a sleep disorder. The period of time between my lying down and sleeping is at the far end of the 1-20 minute normal range.

And yes, I still do get up at night to urinate, so that doesn't help the sleep continuity.

I have trouble moving on the bed as do many Parkinson's patients. That worries me because it gives me a foreboding sense of what it would be like to be trapped in my body.

This is a tough thing to turn around but I'm trying to stay calm, breath steadily....and let my mind get carried off into sleep.