Parkinson's Disease and me

My blog about my experience with Parkinson's Disease


There has been a lot in the news about anxiety lately. Anxiety is one of my main Parkinson’s symptoms. I think this article sums it up really well, particularly the bit about how to spot it. I believe my Parkinson’s began several years before the tremor that led to the diagnosis. Anxiety was the first symptom. I couldn’t understand the way I was feeling. It was only after some internet research I realised that there was a word that summed it all up “anxiety”. Before that I’d never given the condition a second thought. I knew what the word meant but, I didn’t realise it was a medical condition.

At that time I was diagnosed with Post Traumatic Stress Disorder because it seemed I had unresolved issues following a rather nasty assault when I was working away from home. Before that I had been pretty fearless and felt invincible. I opted not to take medicine and went for counselling which worked fairly well. Eventually I was able to take a voluntary redundancy and lead a much less stressful life. The anxiety symptoms abated but I always feared they could return some time and they did, just before the tremor in my left hand started.  

Now that I have Parkinson’s Disease confirmed I am always slightly anxious and on the lookout for new symptoms. It’s a loop. The best way seems to be to treat it with humour and laugh at myself but it’s not always easy. I worry about the most stupid things and even though I know they are silly it doesn’t stop me worrying. For example a few months ago my neurologist increased my medication slightly and at the next visit he said I seemed a “little better”. He said there would be no change and he would see me again in 3 months time. He asked me if I had any more symptoms like freezing and I replied that I had not. Really it was all very positive but my anxious mind twisted it so that I worried because I was only a little better and I interpreted the rest to imply that he expected me to start freezing in the next three months. All ridiculous but none the less real. As I said to LSO – I get on my own nerves! He replied that I must get the trait from my mother and reminded me that many years ago I went for a chest X-ray for a school medical and when the results came back marked “satisfactory” my mother was most upset that they weren’t marked “excellent” or even “very good”!


The thunderbolt

I have  just read an article about electrical stimulation techniques in treating Parkinson’s Disease. It stated “Thankfully, as modern medicine has progressed, so too has our mastery of therapeutic lightning in a bottle“. I like that last phrase. It made me think about a recent incident here.

On Sunday night we were both working happily on our computers in different parts of the house when suddenly there was the longest, loudest peal of thunder that I’ve ever heard and LFS’s all singing two month old computer was wiped out. He spent much of the next day reeling from the shock and anger of it. I was reminded that I often say that receiving my Parkinson’s diagnosis was like being hit by a thunderbolt and this has made me think a bit more about this analogy.

We thought the thunder came with no warning thus no time to unplug the computers but thinking about it the afternoon sky had looked dark and menacing in places and the day had been unnaturally warm. We had ignored the signs. The computer had been working just fine but there were one or two things about its performance that seemed not quite right. That could also describe me for quite a few years before my diagnosis. For example, I had very occasionally noticed I was walking very slowly up the garden, becoming a little hunched, experiencing bouts of anxiety … all very slight and infrequent and long before the twitching fingers that finally took me to the doctor.

On Monday LFS was concerned because he couldn’t access files he really needed. He spent a sleepless night. He wasn’t sure whether our insurance policy would cover the damage. Most things close down here on Mondays so he couldn’t speak to anyone about it. He scanned the Internet. Some of what he read made him think it was probably not too serious but other things suggested it was bad. Fortunately by the end of the day he tracked down an engineer some distance away who agreed to take a look and off we went. The engineer did various tests and concluded it was indeed very serious and needed to be returned to the manufacturer. However he could see no evidence of storm damage and was not convinced this was the problem. This was still not good but once LFS knew what the problem was he felt much better about it and could set about dealing with it.

Before going to the doctor I too spent ages scanning the Internet making myself worry even more. Then in the space of a couple of days from my first visit to the doctor I was examined, sent for a scan and saw a neurologist who confirmed I have Parkinson’s disease. We have health insurance but the nature of Parkinson’s means that all costs of treatment and medication are paid by the state rather than through the insurance. Unfortunately unlike the computer I cannot be fitted with a replacement motherboard or a new power supply unit even though I feel my central wiring system is need of overhaul. I felt as though I had been hit by a thunderbolt when the neurologist confirmed my suspicions. He put me on medicine which made me feel so much better and, just like the computer which is now being patched up, once we knew what we were dealing with we could move forward.

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More mellow than bellow

imageIn the year since my diagnosis of Parkinson’s disease one of the changes we have noticed in me is that I am more laid back and not so fiery tempered. I don’t know if this is due to the Sifrol that I take or that it is a mellowing process of ageing. I haven’t found anything on the Internet about this ‘symptom’. Take the other day for example. We are renovating our bathroom at the moment as the floor was about to disintegrate. We have had numerous problems with the suppliers who have ordered the wrong parts and it is a two hour round trip for us to change them. The workmen once again couldn’t continue due to missing components so we re-ordered and phoned to check they had arrived before we set off. Of course when we got there they had keyed in the wrong code so the parts for something else had arrived and the assistant said we would have to come back again. At one time, The Long Suffering One would have hidden whilst I exploded but I simply smiled sweetly and suggested they delivered it to us very quickly to which surprisingly the assistant agreed. (The “customer is king” concept has little credence in these parts!) I was reminded of when we bought our present bathroom suite. We were still working and living in England and having fun collecting furniture from auctions etc to take to our house in France. We came here at every opportunity. At one stage we had so much stuff that we considered hiring a van. However the cost was so high we bought ourselves a very elderly, disreputable looking 3.5 ton van for a fraction of the rental price. Then we saw a ludicrously cheap display model bathroom suite in a sale in a DIY store, bought it and agreed a time to collect it. We were so busy in those days we crammed an activity into each last second and the idea was to make it the last thing to load into the van and before the drive to the ferry. Unfortunately the shop didn’t honour their side of the bargain. We arrived just before closing time to find it still on display and our only alternative was to dismantle it ourselves. Armed with a screwdriver we just managed to get it all off display and outside on the pavement in the pouring rain of the cold December evening as the shop shutters rolled down. We did make it to the ferry too! We grew to love our old van and ended up keeping her for two years and not the couple of weeks that we intended when we bought her. She never let us er down and kept going as long as we fed her copious quantities of cheap engine oil. We sold her eventually for just a little less than we paid for her. Thinking about the van I am reminded of an example of my previous tempestuous self. Being very old and worn she wasn’t an easy vehicle to drive. I was doing my turn at the wheel returning to England after one trip when I stalled the engine whilst I was driving uphill on huge bridge in three lanes of traffic. I panicked and couldn’t restart her as all the horns started to sound. LSO said something to me to which I took great exception so I folded my arms and refused to drive any further. It ended up with him clambering over me to get into the driver’s seat as the tail-back grew. There was a knock the window and a little old lady from the car behind said “Can I help?” An embarrassed LSO declined her offer, thanked her and we drove off as fast as possible in a cloud of black smoke. Nowadays I’m more like that little old lady. At least he seems to prefer the change in temperament!

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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!


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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First symptoms

Six or so months ago whilst cooking I noticed a tremor in my left hand. I immediately worried as I was aware of Parkinson’s symptoms because my very good friend who died last year (of something else) had it as did my 80 year old aunt. Nothing else happened for weeks, perhaps a month. Then one day my middle left hand finger twitched violently for a few seconds. It was so violent it fascinated me. Another day two fingers on my left hand locked together. The twitching occasionally repeated itself over the coming weeks. Other things happened to my left hand. I couldn’t bear my rings on and had to remove them. I couldn’t tolerate gloves even in the cold winter months. At night I didn’t know where to lie my left arm when I went to bed as it felt so uncomfortable. I felt like all the tension in my body was concentrated in my left hand. I became more and more anxious and depressed. I kept scanning the Internet about Parkinson’s symptoms and fearing the worst but I did think I might also be suffering from severe anxiety and imagining the symptoms. I have a history of anxiety which started after I was assaulted many years ago by someone who subsequently went to prison. I grew more and more anxious and depressed. I was no longer enjoying my life. The twitching increased in my left hand. I noticed it was weaker than before. I found it difficult to do up the zip on my new jacket. In the hot summer weather I thought I seemed to be walking slower. I told my partner of my worries and we made an appointment to see the doctor.

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