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Living my Life with Parkinson’s Disease
Arthur
Anyone suffering from Parkinson’s Disease usually has a disability of varying degrees in different parts of the body. Myself, I have no difficulty in walking in anyway. Some people have a problem in doorways or stairs; others can only walk by shuffling along. There are people who have a rigid facial expression called “the mask”. I would think that this last mentioned complaint would not be very nice. Parkinson’s patients tend not to blink their eyes very much, just another small effect of the disease. My writing skills are one such area that has suffered badly. PD sufferers get what is known as Micrographia. You can start off being able to print or write clearly, then the letters or figures get smaller and smaller so in the end one cannot read the scribble. Hand writing experts tell us that they can read our cheque book stubs (as an example) from way back and tell us we have PD in any particular year.
My problem stems from having a stiff left arm and trembling left hand. I am right handed. I have some trouble with buttons on my clothes, also getting my shirt tucked back in my trousers after using the toilet. Put down also, loss of voice strength/talking quietly, and dribbling which is somewhat embarrassing when in company. At times I can’t stand large crowds, I easily get agitated and can’t wait to get away to somewhere quiet. Driving the car requires more attention now than previous times before PD. There are a lot more cars on the road now than in my younger days so I guess is par for the course.
About six or seven years ago while we were doing our walking exercise, my wife used to say to me that I always seem to be holding my left arm stiffly and it never swings in the normal way as my body gait does. Following a doctor’s visit, who proclaimed that I had a Rotator-cuff problem on my left shoulder, I was advised to have physio treatment exercise to overcome the injury. After many visits to have physio, there was no benefit visible, if any thing, it became worse, so I gave it away.
In April 2003 we were heading to Canberra for the birth of our Granddaughter, this was a planned trip in our diesel motorhome. Whilst travelling through NSW we had mechanical trouble, an injector fuel line had split and was spraying a fine stream of high pressure diesel fuel around the engine bay.
I put my left hand down around the engine to see if I could get an idea just where the break in the line was. When we finally made it to a repairer at the workshop, I went to put my hand down around the engine to show the mechanic the position of the leak. He immediately said ‘don’t do that, you could kill yourself’. That fine spray of diesel is under so much pressure it could go right into the pores of your skin.
Not thinking any more about the fuel event, until later. A red patch about the size of a 20 cent piece appeared on my back, left side. Within a week of so I had a bright read rash all over my back and chest. Maybe while gardening at my daughter’s home in ACT I could have been bitten by a spider. I rang the poison hot line but got no real help.
The rash spread further down around my groin area. At one hospital I took my shirt off to show the outpatients Dr and the Dr ran away, he must have thought I had meningococcal, or worse. The rash got progressively worse; it was impossible to sleep, I scratched all day and night, took freezing cold showers and lost a lot of weight. All in all the rash lasted for 12 months. At the hospital they took biopsy’s, x-rays and blood samples. I had acupuncture, nothing worked and the whole time no one believed the story about the diesel getting into my skin, or could come up with any alternate answers. Whether this was the onset of the Parkinson’s Disease I will never know.
Then about June 2004, my wife and I were on another trip up to North Qld in our motorhome. This particular day my wife Linda said to my, ‘why are you drumming the steering wheel with you index finger of you left hand’. To be truthful I had not really noticed that I was shaking.
Not long after this first episode, my mouth went funny, like as though my tongue was stuck to the roof of my mouth, and I was lisping while trying to talk through my front teeth. I honestly felt that maybe I’d had a small stroke.
On returning home I made an appointment to see my GP who suggested I see a neurologist. I made contact with Dr Dan McLaughlin on Wickham Terrace, Brisbane. At my first visit it took him about 15 mins. to announce to Linda and myself that yes I was now a Parkinson’s Disease sufferer.
It was quite a shock to us both especially to learn that it is incurable and I’d be on medication for the rest of my days. Worse was to come when we learnt that one usually gets more disabled as time passes. Even though the disease won’t necessarily kill you, but you will die with it. Here am I, having worked for 45 years – never hardly been sick a day in my entire life, I’ve just retired and am looking forward to a great time and now this, why me!
Afterwards you look back and the thought struck me, that there are many people much worse off than me, so quit complaining. Start living.
The first medication I was on was Madopar 100/25 with a low dose of Cabaser – I handled this OK! Next came Stalevo, full on from day one at the early stage it nearly sent me off the rails. I had no control of my actions, I really had the horrors. The neurologist finally took me off Stalevo and I went beck onto a slightly stronger Madopar ¾ of a tablet of 200/50, plus a tablet of a newer drug called Sifrol 250 and I’ve never felt better. I take Madopar 5 times a day and Sifrol 3 times a day plus Vitamin C most days. I listen to my relaxation music tapes through my earphones of my Walkman CD player and visit my Bowen Therapist - Sue at Bowette on a regular basis courtesy of MBF.
General physio is too rough for PD sufferers, acupuncture and chiro is of no use, I’ve found no good effects at all. The gentle art of Bowen Therapy combined with Emmett Technique works wonders and the effects are long lasting, that’s what I like about it.
Some beneficial points to stay on top of PD for me.
- Stay positive
- Eat well and watch your diet
- Keep active
- Moderate exercise/walking
- Drink plenty of water
- Rest if need be
- Try not to get upset about things
- Try not to get excited too much
- Try to take you medication on time
- Listen to relaxation tapes e.g. through Walkman CD player
- Have a session of Bowen Therapy combined with Emmett Technique every 3 weeks
- Take Vitamin C tablets on a regular basis. I do hope that some of my story may help others newly diagnosed with PD.
Arthur from Narangba
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