Several times each day, I take my Parkinson’s medication. Each one of these tiny capsules gives me a limited amount of time in which my Parkinson’s symptoms are lessened.
A friend asked me how I was recently. I replied with my usual completely honest “up and down”. She asked if I had good weeks and bad weeks. In all honesty, it’s not even just good and bad days. It varies from hour to hour. It’s what’s known as “on” and “off” times in the Parkinson’s world. That is the periods when your medications are working to full effect, you’re “on” and when they’ve worn off – in between doses – you’re “off”. I usually describe it as up and down.
One of my symptoms is rigidity in my right hand and arm which makes my movements slow and difficult. During my “on” times, I can carry out lots of everyday tasks with relative ease and sometimes quite quickly and efficiently including: writing lists, folding clothes, washing up, chopping vegetables, tidying up, cutting up my dinner, sewing a button – the list goes on but you get the general idea.
So it’s great when my meds are at their peak, because I can do all my tasks with relative ease. Except I can’t, because I always have more tasks to do than I can fit into the limited amount of time I have before my medication wears off. It usually feels like no sooner have I started being able to move more quickly and easily, than I can feel myself slowing down again.
I take one of my tiny ‘time capsules’ every 3 hours and on a particularly good day I’ll get at most 2 hours of “on” time. It’s usually more like 1 to 1.5 hours. Different factors can affect the absorption of and effectiveness of my medication. For example, eating protein when I take my medication slows down the absorption.
These constant changes in my symptoms have such a big effect on my everyday life. In a previous blog, I used a helter-skelter analogy to try and explain the daily ups and downs of my medication cycle.
More recently, I wrote this poem…
Tick tock tick tock time
Tick. Tock. Tick. Tock. Tick. Tock.
Time. Goes. Slowly. As I wait. For my meds… to kick in.
Slow. My movements are slow.
I can’t. Move. Any faster.
Then all of a sudden, a change and it’s tick tock tick tock tick tock.
I feel alert, I can move with ease.
But time is still ticking tick tock tick tock.
Before long, my movements begin to slow.
Tick. Tock. Tick. Tock.
I glance at my watch. How long til I can take my next dose?
Time. Goes. Slowly. Tick. Tock. Tick. Tock.
At last, I slowly open my pot of pills. And take another one.
Tick. Tock. Tick. Tock.
Time. Goes. Slowly. As I wait. For my meds… to kick in.
And so the cycle continues.
Every three hours I take another pill.
And that is how my day goes by.
Tick. Tock. Tick. Tock.
Then tick tock tick tock tick tock
Day after day. Tick. Tock. Tick. Tock.
More information about Parkinson’s medication is available on the Parkinson’s UK website. Parkinson’s UK is a national charity supporting people with Parkinson’s and working to find better treatments and a cure for Parkinson’s. To find out how you can get involved in their work visit the Parkinson’s UK website at: https://www.parkinsons.org.uk
Living with Parkinson's 