Parkinson's Disease and me

My blog about my experience with Parkinson's Disease

Searching for sunshine

After the neurologist gave me the Parkinsons Disease diagnosis he said I could and should just carry on with my life as normal but things might take me a bit longer and I would be a bit more tired. How right he was! It’s nearly three years on from that day now and I am still pretty much doing the same things plus some new ones too. It’s true my back aches (thoracic pain according to the neurologist) and I cannot do gardening for hours as I used to do. However I can still do some gardening and when I look around at my neighbours who are similar ages to me I note that they have aches and pains and can’t keep going as they used to either so I’m not sure how much of the slowdown is due to increasing age.

One of the benefits from getting tired and having to stop is that I now sit in the garden and enjoy it without a frantic urge to dig or weed or whatever. I try to keep positive despite PD and I thought to write about some small compensations when I saw that  Twitchywoman had already and more eloquently beaten me to it in a recent blog.


I find exercise makes me feel so much better and strangely less tired. If I am suffering from any of the irritating PD symptoms which seem to come and go I find going out and doing something makes me feel better. I love to walk or ride my bike (OK it’s electric!) on our quiet country roads in the sunshine. I love to swim and now we have our own pool I swim several times a day. I know we would have not have invested in the pool had I not had PD and now it is a great joy and a magnet to the grandchildren. Apart from this I spend hours sewing, painting or ‘playing’ on the internet. I pretty much do what I want and what’s more I do it guilt-free.

Don’t get me wrong. I can and do frequently feel sorry for myself for having Parkinsons along with the best of them but right now I am feeling how lucky I am. I am sitting in the sunshine in beautiful countryside in the south of France. We have just spent several hours lingering over lunch with very good friends and listening to an excellent musical trio. Last night we went to a wonderful open air concert and picnicked under the stars. It was only the heavily armed police amongst the crowds and the alarm in nearby faces when the fireworks began that indicated we are not too far from Nice and this weeks shocking massacre when 84 people of all ages and ethnicities were randomly murdered. Happy, well and healthy one minute … then the next …


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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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Me and my ipad

I had to smile when I read Twitchywoman’s tongue in cheek 10 things to be thankful about re Parkinson’s in her recent blog. Top of her list was “Getting by on little sleep gives us much more time to spend playing  games on our iPads in the middle of the night, while we are deluding ourselves into thinking that these games may actually help our brain cells regenerate.” This is me too! In our household my iPad is known as “my little friend “. We are quite inseparable. I have palpitations just thinking about what I will do when it wears out – that is until I get another one. It is my beloved companion as I wake up really early since getting the disease and I too while away a few guilt free hours happily browsing, researching or planning my next projects, watching the TV programmes I would never confess to wanting to see or whatever instead lying sleeplessly worrying about what the future may hold. Initially I even tried the brain games!

I’ve had my iPad for several years now and soon became addicted to it. Funnily enough when my Parkinson’s symptoms first started to trouble me I thought the iPad was to blame and that I had a repetitive strain injury. My left hand just didn’t feel good for several months. I couldn’t bear having gloves on even in the bitterly cold weather nor could I tolerate my rings. Then I started to get the odd finger twitch. I knew someone with Parkinson’s and I remembered her talking about its pill rolling action. For a while I consoled myself because this did not seem to describe my tremor until one day I was brave enough to look it up on YouTube and saw a video that could have been me. That’s really what pushed me to visit the doctor and my subsequent diagnosis.

Now I just try to stay as positive and active as I can, both physically and mentally and that includes trying to find humour in the situation. My iPad frequently diverts my mind from my troubles. Our neighbours thought it hilarious when we used our two socket generator during a recent power cut plugging the freezer into one and yes, the iPad into the other!


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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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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