Parkinson's Disease: Kevin's Story
Kevin, a 52-year-old Parkinson’s Disease sufferer from the UK, describes how he coped with the shock of his diagnosis, details the various treatments he has tried and tells how he manages to keep a positive outlook on life.
“Limping, I’m not limping.
I returned to the stall and told Anita, my wife what Geoff had said. After a few minutes and a few customers it was forgotten.
Three months later I was sitting with my GP and he recommended a specialist. I walked out into the dull skies of early March and drove home confused.
Months passed by and summer was especially enjoyable, flitting around the countryside selling our books. By September the days were giving way by degrees to night. The postman arrived with a letter and Anita and I looked at each other. It was time.
It was, if I remember correctly, not until we had reached the outskirts of Salisbury, that I had made up my mind to start again. Anita steered the car into a garage and ran in the shop to buy some tobacco. I really needed a fag. The weather was foul, everything on Mother Nature’s menu was thrown at us (apart from the sun of course) and in a warped kind of way it was very fitting. What if had been a cloudless sky with the winter sun shining? What if it had been a day “too good to waste”? But I was glad that the earth wept with us. I watched Anita sprint back to the car, God I love her, she is such a support---so aware of my sadness----our sadness----my two daughters’ sadness and beyond. So many people’s sadness. How do I tell this to parents, friends? I know I will be embarrassed, emotional and confused as the knock on the door is replaced by Anita’s strangled “Hi” and again I bolster myself, sat perched on the edge of the sofa, knowing I am about to be overwhelmed with love from yet another friend.
That morning had started better than anyone could have ever expected. Why, we joked, discuss my results when they all came out positive - blood tests, MRI, reflex tests, everything. We sat smugly over our coffees.
How different the room seemed when we arrived back home and ran indoors - not from the dreadful weather, but from the rest of the world. The house seemed darker and more solemn. All the goodwill had seeped out under the back door while we had been away. The bowl of affirmation cards, including the two left lying on the table (that bore such positive legends) were dumped unceremoniously into the peddle bin. How buoyant we had been leaving that morning for a trip to see the specialist (a lovely man) in Southampton General. How sad it was to see so many people – young people waiting to be told the “result”.
“He thinks you have got Parkinson’s.” Anita’s voice came from a distant planet.
“Oh” I replied, struggling with my shoe laces, my head under the desk.
We walked out of the waiting room with the same faces and the same copies of the Country Life looking at us. Did they know? The next words I heard were Anita’s as she pointed at the pretty stream running through the hospital gardens. I said “yes” but I didn’t hear myself say it. I noticed how the grey skies and the hospital walls blended as one.
Three or four years have passed us by (I really can’t remember the exact date of diagnosis) and life has certainly been, to say the least, full of new experiences. In the beginning I was somewhat blasé about my condition, thinking I could continue life as ‘normal’. In fact, the cold reality was that rising from my bed at six in the morning (sometimes earlier) or spending ten days at a music festival (with little sleep) selling our second hand goods were over. Now we decide on the day whether or not I can stand for hours on a cold pavement with the elements to contend with, or live out of the van surrounded by young ravers who go to bed at seven in the morning just as us old hippies are thinking about rising, man.
Ropinorole is now the drug of my choice, along with Amantadine which seems to give me a lift and my specialist has just started me on 62.5 of Sinemet. I get little or no side effects and have dabbled with “alternative” medication to supplement my P D drugs. I am currently imbibing garlic capsules (daily), Devil’s Claw (for headaches), Ginko biloba and Lepicol - Psyllium husks +Lacto acidophillus+ Bifidum Bacteria (for constipation). The latter has proved to be VERY beneficial. Whether or not they make any difference I can’t be sure, but it’s worth trying, I believe.
My diet consists of cereal breakfasts, masses of fruit and veg (organic) and fish three or four times a week (easy way to essential fatty acids). I avoid processed food as much as possible and dairy products, milk in particular as it is known to be hard to digest. Soya milk is the perfect alternative. My wife is a very accomplished cook and she surprises me with mango and soya milk smoothies (orgasmic!).
I am due a course of acupuncture (on the National Health Service) and I have tried other therapies such as cranial osteopathy (heaven), traditional osteopathy (enjoyable), reiki (bliss), colonic irrigation (trying is believing), the Alexander Technique (should be compulsory for Parkinson’s Disease), a herbalist (expensive but enlightening) and massage from my wife Anita who is fortunately for me a fully qualified masseuse (unprintable!). They may not cure - but man, they make you feel good, just like James Brown sings!
Bitter? No I am not – I can honestly say no I am not. Disappointed - yes. I have experienced real grieving - grieving for who I used to be, burying the old me, like losing your best friend and finding that what is left of you is up to your ankles in soil.
Now, three years later I have rediscovered my character and my lust for life albeit different than I had planned. PD is a head trip after all, first and foremost. See the glass half full, tell yourself the sun will shine any minute or run naked in the rain and above all when the time comes and you need a little lovin’, the NHS is kind to PD sufferers and prescribes another little pill.
"Rise to the occasion and go for it!“
If you’d like to discuss any of these issues with Kevin, you can contact her via:firstname.lastname@example.org