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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Small comforts

The beginning of August marks the second anniversary of my Parkinson’s Disease diagnosis. I don’t remember the exact date as it was so awful I must have erased it from my memory. I do remember the neurologist waxing lyrical about the benefits of exercise and telling me that I should carry on my life as before, just that things might take me a bit longer and I might get a bit more tired. How right he was!   That gave me a little comfort. A fortnight ago I had my six month checkup with him and he said there was no need to increase the medication but that I may benefit from 20 sessions of physio for my posture which has changed. At the end of the visit he always dictates a letter to my doctor in front of us and in it he said the condition was ‘stabilised’. This time that word gave me the comfort I sought.
Everything health-related happens very quickly here. The half hour physio sessions started the very next afternoon in the local health centre where all the health professionals – doctors, dentists, psychologists, podiatrists, physiotherapists etc have rooms. I now have sessions twice a week. We were amazed at the speed and efficiency of And  it all. My physio entertains me by talking about his love of Arsenal football team whilst working on my arms and legs, particularly my dodgy left arm. He tests my balance in various ways like holding my hands as I stand on one leg with the other raised and by pushing me backwards and forwards and sideways as I stand with my eyes closed. He keeps telling me that my balance is very good which cheers me. I do lots of stretches. I have homework that includes boxing type movements. I step on wall bars, I do squats, I do arm exercises on pulleys and I ride on an exercise bike. He noticed that I was walking with one shoulder raised a bit higher than the other and I have been trying to correct this. I was totally unaware of this. Last night he commented that it was improving after he watched me walking and I felt strangely elated!
I am also comforted by the number of new developments I have read lately in Parkinson’s Disease research into treatments and a cure. This article sums them up:

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Numbers are such funny things. After all my tests the doctor gave me the results. You have 10% hearing loss in the right ear and 15% in the left. My face must have dropped. He was amused. Don’t worry he said, that’s a very good result. It seems you need a hearing device when you have a 30% loss. When I thought about it some more I could see if he saimageid I had scored 90% and 85% in my test I would have reacted quite differently. I may even have been pleased considering I had to do the test in French. Maybe not, with my Parkinson’s anxiety I am very much a glass half empty girl!

I was referred to the consultant by my doctor earlier this month as I had a couple of very short bouts of my head spinning like a washing machine when I lay down in bed and turned my head to the left. I was really scared that it was to do with worsening Parkinson’s Disease even though the doctor thought not. In the 3 weeks waiting for the appointment the spinning stopped. The consultant looked into my ears with various bits of equipment and then said he was going to put a big black rubber mask on me and use a vibrator behind my ears. I could see a funny side to this afterwards! It was horrible but at least it didn’t last long. He made me lie down then sit up on each side then he rocked my head backwards and forwards for what seemed a long time. No doubt he was trying to recreate the spinning but nothing happened and he said my balance was very good. After that he sent me for the hearing test and gave me the results. He said I have had a bout of Benign paroxysmal positional vertigo (BPPV) on my left side which has cleared on its own. It is caused by calcium crystals moving in the inner ear. I may or may not get it again but if I do there is a physical manoeuvre which can more than likely put it right.

So the BPPV is not serious and has nothing to do with Parkinson’s. It is yet another of these age related things. I had never heard of it but since discussing it with my equally aged neighbours they seem to have had it too or to know someone who has.

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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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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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