Parkinson's Disease and me

My blog about my experience with Parkinson's Disease

Getting creative

imageI’ve just noticed I am doing more and more of the activities I used to do before Parkinson’s Disease crept up on me. I think this is down to my Sifrol medicine. It’s effects are creeping up on me too.  I don’t notice the tremor or the strange, tense feeling in my hand so much even if it isn’t entirely gone.  That said, my hand shook like fury yesterday at the mobile phone shop where a snotty young assistant treated us like imbeciles!  Generally the tremor seems to have improved.  Maybe I am just getting used to it but I think it’s more than that.  I am told I have stopped holding my left arm in an unnatural position.  The neurologist has increased my dosage in very small steps 0.26 mg at a time and now I am on 0.78 mg.  I did have some side effects.  At first I kept falling asleep but this stopped.  I also had a bit of nausea and a little light headedness.  I read the leaflet listing the many possibilities of side effects and the sort of person I am, I immediately started anticipating them!  This has happened each time the dose has been increased and has lasted a few days. I think the medicine must take several weeks to really start to work on me.

The good news is I am gardening again and have been preserving our harvest for the winter.   Our store cupboard is full of jars of fruit and bottles of apple juice.   I am cooking again and enjoying my love for trying new recipes.  My doctor suggested knitting and sewing were good exercise for my hands so I’ve been making a lap rug.  I’ve also woven a door mat from old rags.  I feel as thorough I am re-cycling myself a little!

I read that dopamine agonists some times bring out your creative side and I hope that might happen to me.   I’m going to have a go at drawing and maybe painting if I can fit it into all the activities I’ve been doing lately.   I’m lucky that my tremor is in my left hand and I am right handed.  I don’t notice the tremor when I am using both hands at the same time but it’s so annoying when I am using just one hand.  For example when I was painting a garden chair in the summer I had to stop as my other hand was twitching so much I couldn’t stand it.  Let’s see what happens.

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Why me?

I do try to be positive about my Parkinson’s Disease but I do waste a lot of time wondering how I got it and searching the Internet looking for causes.  I read that it is not really known why someone gets it but theories abound.  There seem to be lots of possibilities for me.  Maybe I have a family tendency as I have an aunt in her eighties who developed the disease a couple of years ago.  I read about links to crop spraying and am reminded that I live in the countryside where some of our local farmers use weed killers with abandon.  I like to spin and weave wool and over the years I’ve handled unwashed fleeces sprayed with who knows what.  I hear that people who smoke and drink coffee do not get the disease. I do neither. I read that stress could be a big factor and I’ve certainly experienced periods of great stress at times in my life and I used to have a stressful job.  A long time ago I was attacked whilst I was working away from home and some years later following that I was diagnosed with Post Traumatic Stress Disorder.  For the first time in my life I began to suffer from fear and anxiety.  I had counselling and seemed to have conquered it.  Then the anxiety resurfaced at the same time as my fingers started to twitch and now it’s a symptom of Parkinson’s.  I wonder if the trauma of the attack is the cause?  Who knows?
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Impulse buying

I am taking Sifrol which is a dopamine agonist. The neurologist and doctor monitor my progress. Last week the neurologist asked us if we had noticed any personality changes in me recently. He went on to explain that some people experience a side effect and start things like compulsive buying or gambling and if this happens we must contact him immediately. We looked at each other, smiled and said nothing. The truth was we have just bought a new car. It is very flashy with lots of electronic wizardry and is not at all the sort of car we would normally have bought. Maybe we were both experiencing this side effect as we made our impulse buy. We had already thought that our decision to purchase was very much a reaction to the trauma of my recent diagnosis of Parkinson’s Disease. We bought it to cheer ourselves up. We had suddenly been forced to realise we are getting old. We thought there’s no point keeping the money in the bank. We can’t take it with us. Why not enjoy it? Why not spend the kids inheritance? I can understand this impulse buying!

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Something positive

The one good thing Parkinson’s has given me is weight loss.  In the months before my diagnosis I became very depressed.  I’ve since discovered this is a classic symptom.  I’m the sort of person who eats when they are happy but not when they are sad.  Consequently I have lost about 7 kilos. My weight seems to have reached a plateau now and is right for my height.  I don’t know if this will last now my appetite has returned but I’m hoping my new found enthusiasm for exercise will help maintain it.

This seems to have made me look better.  At least my partner and neighbours thinks it does.  If I’m honest I suppose it could be because I looked so wretched before.  Most importantly I really like being thinner myself.  I even bought myself a bikini this summer.  Maybe it’s better not to think about that too much for a 64 year old!

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Telling people

Some people do, some don’t but I’ve told everyone about my Parkinson’s diagnosis.  For me it has really helped.
I phoned my sister and my son to tell them.  Both immediately suspected something was very wrong as soon as I mentioned going to the doctor.  I could hear the dread in their voices as they waited to hear what the problem was and I could hear the relief when I said I have Parkinson’s disease.  Both said they feared it was something worse.
Neighbours and other friends have been really supportive and surprisingly some have also now told me about serious health problems they themselves have which they have never mentioned before.  I think it helped some of them to talk about their own problems.
They have told me lots of positive stories about people they know who have had Parkinson’s for 20. 30, 40 years …. People who are still working ….
People are relieved that a Parkinson’s diagnosis isn’t a death sentence.  Right now I need people to be positive too as I know that for me  it is a life sentence.
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Second visit to neurologist

Yesterday I went back to the neurologist to see how I am doing on the medication.  It is now two months since my Parkinson’s diagnosis and I remembered just how bad I had felt that last time when I was so overwhelmingly anxious and depressed. Now I am so much happier and more positive. The medicine made the anxiety disappear within days.   I feel like I have been given back my life …. OK I am a bit slower and I get tired a bit more quickly but then my similarly aged friends all complain of these things too. We talked and he did some tests on my left hand.  My fingers shook more than they have been doing with the stress of his attention but I could see that I could do them better than before.  He said he thinks he can get me to work better still by increasing the medication by another 0.26mg. This will still be a very small dose of the medication and he wants to keep it as low as possible. He will see me again in two months. To review the situation. He seems so intent on helping me live life to the full and he did not rush through the appointment.  He said I must do everything I have always done and now I just have the all-important medicine and exercise to help me.  He again emphasised that exercise was crucial and also recommended tai chi.  He said ‘You are just like everyone else but it might take you a little bit more effort to do things.  You might be a little slower and you may be a bit tired from all your efforts but carry on as normal …. You can have a good life!’

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Exercise – the best medicine

The neurologist said exercise was so very important so if I’m going to have a good life then exercise it will be for me from now on!

The first thing I did was to get out my mountain bike which I had not ridden for several years.  Now every dry morning I go out for a ride, often with a neighbour.  I’ve already become quite good at it despite our hilly terrain and it makes me feel so much better.  An additional bonus is that I have met new friends in a neighbouring village.  Previously speeding by in the car we would not have met.

Then there’s the table tennis for rainy days.  We have always played table tennis.  I am competitive and hate to lose and my partner is so much better than me.  Previously this has made me a very bad-tempered player prone to foul language and aiming balls at my opponent’s head but nowadays I seem to have changed for the better (maybe the medicine has a calming effect?).  I have now actually won two games – who would have thought it?

I also go to what they call ‘gym’ in the village hall.  I was worried in case I couldn’t keep up but the other participants are mainly grannies like myself.  It is surprisingly vigorous  and at the end the good effects are spoiled for most people who munch on lemon squash and chocolate biscuits!

This week I have enrolled for aqua gym and I really enjoyed it.  The water gives it a whole new dimension.

Other than that I continue to do a lot of walking and gardening and at this particulate time combing the woods for mushrooms.

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My very first reactions

That night we were both left absolutely reeling from the diagnosis.  Apart from the usual common ailments I had never been ill before.  I had not visited the doctor for years.  I thought I was fit.  I did not smoke, drank very little, ate healthily and walked a lot.  Why me?

My own first feeling was one of failure.  I did not see myself as someone with a chronic illness.  It was not in my ‘plan’.  I did not want to inflict myself and my new problems on my family … on my son…. On my sister.  I did not want to affect their lives by making them worry about me.  I did not want my life to change.

I sobbed and sobbed “I don’t want it!”

In the coming days I spent far too long surfing the Internet for Parkinson’s information and seemed to find a wealth of negative stuff which made me feel even worse. Then I came to the conclusion that being positive and optimistic makes me feel much better. So from now on I am going to be positive in this blog!

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The diagnosis

By the time I got to see the doctor I was feeling dreadful.  The worst thing was the anxiety.   We nevertheless travelled hopefully thinking he would say my finger twitching was due to a trapped nerve from too much ipad usage or even that in my anxious state I had imagined the symptoms. The doctor had a student with him and within a few minutes it was obvious they both thought the likely cause was Parkinson’s.  We were both absolutely shell-shocked.

The French health care here is fast and wonderful.  The doctor immediately organised a full set of blood tests for the next morning and he tried to arrange a brain scan for that night but it was peak holiday time and we had to wait a couple of days.  A nurse arrived at our house just after 7 to take the blood samples and the results arrived in the post the next day.  We were given the results of the scan plus a CD of it immediately after the scan.  We had to return to the doctor then to discuss the results.  The doctor went through all the results with us and they were all excellent and did not show up any problems.  In fact the harassed, over-worked, young doctor seemed covetous of my cholesterol  readings and earlier blood pressure check!  The results still did not rule out Parkinson’s so he then telephoned a neurologist and arranged an appointment the next day.

The good test results kept our hopes alive and we went to see the neurologist.  He spoke to me at length and did a few tests and then asked me what I thought the diagnosis was.  My left hand was shaking furiously with the stress of the situation.  I said I thought it was Parkinson’s and he agreed with me. He did not give me any false hope.  He said there is no cure – they can only treat the symptoms but he did say he could do a lot to help me.  He prescribed Sifrol, starting with a very low dose and something to take with it for the first month to settle the stomach.  He really emphasised the need to exercise which he said was so important and then he said go home and carry on with your life as usual.  He then wrote to my doctor who would monitor my progress.  Another appointment was made with then neurologist for 6 weeks later.

I felt a strange sense of relief at knowing what the problem was and I stepped with a bit more optimism into my new future.

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