December 21, 2016

I Must Keep Moving to Remain in Stage 3 of My Parkinson's Disease

Last month, I wrote about the five stages of Parkinson's disease (PD) and placed myself in stage three. On my good days, I might even say stage two.

But lately, I've seen some warning signs that I could be close to entering stage four. For me, the passage from stage three to stage four means saying goodbye to independent living and hello to assisted living.

In the first three stages, people with Parkinson’s (PWPs) can handle key life tasks on their own, although help from others is increasingly welcome. In stage four, PWPs become increasingly reliant on others.

I don’t have the typical PD tremor; I’m dealing primarily with the increasing stiffness and muscle rigidity, conditions that affect most everyone with Parkinson's. Should my time come to enter stage five, I’ll likely have very little use of my arms and legs. 

Last summer, I reported on the shock our Parkinson's support group members experienced when we saw a former member who had hit bottom. He sat in a wheelchair, unable to use his legs or arms. His wife/caregiver had hoped that visiting his old support group would stimulate his cognition. It didn't.

I plan to arrange my own “exit” before I reach that point.

Over the past ten years, my PD has progressed slowly. Most PWPs move gradually into stage three. But in the last two stages, decline usually accelerates dramatically. Movement becomes more and more difficult. This inactivity, in turn, creates increased rigidity and stiffness.

My ​Recent Warning Signs
I get up once or twice during the night to pee and take my PD medication (carbidopa-levodopa, the gold-standard PD med). Currently, I take one or two pills -- the extended-release variety of the med -- every three hours, up to seven times a day. My neurologists tell me I’ve reached the maximum dosage for this med.

I don't set an alarm to get me up in the middle of the night to take my pills. I just wake up about three or four hours after taking my bedtime pills. 

Over the years, I've come to enjoy being up at this time of night. I often stay up – sometimes for an hour – just stretching and meditating. It’s my "Joy of Quiet" time.

In the past few months, I’ve noticed some changes. I’ve experienced spells of depression and anxiety. I’ve considered just getting right back into bed after visiting the bathroom and taking my pills, forgoing the stretching and meditating that enhance my physical and mental well-being. By calling up the image of the wheelchair-bound former support group member, I've resisted the temptation to climb right back into bed after my bathroom break.

But last Saturday night, I succumbed to temptation. I had gone to bed later than usual, woke up for my toilet and pill break at 5am, reached for the pills on my nightstand, used the bedside urinal bag, and then just rolled over and went back to sleep.

When I awoke the next morning at 11 o'clock (exceptionally late for me), I could barely move. I almost summoned one of my housemates for assistance but didn’t, thinking such a call for help sounded like PD-stage-four behavior.

It took about five minutes to sit on the edge of the bed with my feet on the floor. Very slowly, I made my way to the bathroom, hanging on to the bed and the bathroom door.

Then I spent about 30 minutes holding onto the bathroom sink for stability as I slowly began stretching and limbering up.

That was Saturday night. In my next post, I'll describe Sunday night's adventure.

But don't worry. I won’t turn my blog into a daily health journal!

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