I am a newcomer to PD and what I am going through is a cakewalk compared to the PWP who have had it for some time. What follows is an account written this past Remembrance Day by a contributor to Parkinsonforum.org. Her online name is X. and this is what she goes through in the first couple of hours after waking up.
November 11 2011
04 15 - wake up with backache because I have been unable to turn in my sleep. I also have numb heels from the pressure of the bed clothes and staying in one position.
04 25 - Reach to left to turn on light and knock pills on floor.
Fumble around bed to find my home-made rope-ladder to pull myself up into sitting position, but my arms aren't strong enough the first time, so I collapse back into bed.
04 30 - Second try, I try using my back muscles, but the pain is even worse than in my arms, so I give it 10 minutes.
04 40 - Try again to pull myself up and with the help of my bed handle I get into upright position, reach the door handle and the grab the handrail to get to the loo. Make it just in time.
.
04 45 - Have trouble sorting myself out and head off back to bedroom, but get stopped by dystonia in right foot - toes curl downwards, so i can't walk but get on my knees to crawl back to bed, but getting off floor is a struggle. Find pills, but can't reach taps for water til dystonia stops.
Cannot lie down because of PD-induced acid reflux problem. Sit on bed and wait until dystonia goes.
05 00 - Get water, take pills. Wait.
05 50 - Pills start to work.
This is how I start my day.
This is the ugly side of PD that I share only with you, my fellow sufferers, because you understand.
Maybe the world needs to see just how horrific this disease is.
By staying silent, we do ourselves no favours.
I don't relish the day I find myself in X's position. It must be very difficult and yet, she maintains a healthy lifestyle and a positive outlook 10 years after diagnosis. Her story helps me stay strong.
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