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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Nice one

imageLife was stressful before Christmas. We had made the mistake of asking professionals – builders, electricians and plumbers to re-do our bathroom rather than doing it ourselves. We thought it would make life a little easier for ourselves. Big mistake! We thought it would take two weeks but for reasons too tedious to list it has taken ten and we are still unable to sleep back in our own bedroom in our own comfortable bed. It was really miserable. The weather was cold and wet and all our doors and windows seem to have been open for months. On top of all that I have had problems with my teeth.

It’s a well known fact that these stressful sort of situations are not conducive to the well being of Parkinson’s sufferers like myself and I was feeling a little wretched. The Long Suffering One was bemoaning these circumstances to our wonderful friends who are in Australia and they said that the apartment they have in Nice was unexpectedly free this Christmas and New Year and why didn’t we go there? It was an easy decision as we would have been on our own in any case this Christmas so we just packed up the car and drove off leaving the mess behind us.

So here I am in Nice. The sea and sky are deep blue, the sun is shining and it is so warm. I’ve been walking lots but apart from that I’ve had a very lazy time. I have walked around the Cap d’Antibes. The coastal path is quite narrow, has many steps and is decidedly steep, uneven and quite challenging. The circular walk is finished on roads lined with the gated entrances to exclusive millionaires’ villas scattered among the pine and olive trees. The walk is 4 or 5 kilometres and I managed it just fine and feel good and thankful for all the things I can do. I have read several other Parkinson’s blogs written by people just like me and they have all given positive, optimistic and encouraging messages. May be this will be the year for a great breakthrough in treatment or a cure. I find reading such messages helps me so I would like to share my positive feelings this New Year’s Day – my second with Parkinson’s Disease. To anyone reading – a very happy New Year!

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Apologies

imageOur nearby town has an annual night farmers’ market. The local farmers set up their wares in the square and the idea is you choose some meat from one (which the farmer barbecues), some wine from another or what ever you want, then you buy some bread or chips to go with it and sit at long trestle tables to eat it. The long suffering one bought some beef sausages and gave me a €5 note for the bread as I’m a bit like the Queen nowadays in that I do not carry money. We were right in front of the bread stand and when I gave him the change he noticed that instead of two €2 coins I had been given one and a 50c so he very politely pointed this out. The bread lady was decidedly frosty … no she was really rude and said it was impossible. Being very British we just let it go. We finished our meal with our neighbours and wandered off to watch the band who made up on volume and enthusiasm what they lacked in musical talent. However the bread incident unsettled us and we went home earlier than usual.

We didn’t really give it any more thought until a few days later two cars drew up outside our house – very rare events. The first was our log man for our winter wood order and the second a grim faced stranger accompanied by a lady from my gym club. He asked if he could come inside to speak to us in private. It turned out that he was the President of the town’s Comité des Fêtes. Very gravely in a lengthy speech he explained that the gym lady had witnessed and reported our treatment by Madame Misère and he had come to proffer the apologies of the town, the committee et al and to reimburse our €1.5. We were amazed but very touched.

On the Parkinson’s front I too was very sorry when I learned the circumstances of Robin Williams’ tragic death. This was even more so because shortly before the announcement I had been bemoaning the fact that it seemed to need a celebrity to ‘come out’ with Parkinson’s Disease to give it a higher profile in the quest raising funds for better treatments and a cure. I felt sad that this latest role has gone to Robin who seems to have given away all his sunshine to others. I felt like apologising to him. At least for the present press coverage about the disease has increased. However, the press seem to dwell on doom and gloom and a lot is hard to read for those suffering from it and their families and friends. It helps me to read something more positive so in amongst the misery I am glad to hear and share about two 80+ year olds who have had the disease 20 or so years – the first somewhere in the U.K. still maintains his immaculate allotment and the second, in Canada, is on a sponsored cycle ride. This article from Forbes news helped me a lot too: http://www.forbes.com/sites/dandiamond/2014/08/15/why-parkinsons-disease-is-so-scary-no-cause-no-cure-but-its-not-a-killer/

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Yoda granny

YodaBefore Parkinson’s I had always been fit and healthy.  When I was young I played a lot of sports and I competed in athletics.  I have always been very competitive.  I was a young mother and I wanted to be a young and trendy granny playing football and chasing my grandchildren around.  My son delayed having children until his thirties but I could still do all the things that I had hoped for with my grandsons.  Then this summer Parkinson’s arrived and I am slower and stiffer, more tired and feeling very saddened by no longer fitting my self image.  Then something happens to make me smile and think ……
A couple of months ago my five year old Star Wars obsessed grandson asked me to knit him a stuffed toy.  I didn’t really think much about it except to think that he really wouldn’t want such an ‘uncool’ item.  Then a fortnight ago we visited again and the first thing he asked for was his soft toy.  I felt mortified!  I managed to put things right and he climbed in to my knee as we surfed on the ipad for a knitting pattern.  He decided on Yoda from Star Wars.  Here is the result which I am just about to send to him.  It’s not the best example so I hope he likes it!  It took me hours to make. My doctor suggested that I knit to help with the fine motor skills and I actually enjoy doing it although I don’t normally mention it to people as it doesn’t fit in too much with my silly self image.  The important thing is the five year old likes having a traditional, knitting granny upon whose knee he can climb even if it is to surf the Internet and he likes the idea of having a granny who can knit him soft toys to cuddle  ….. and me?  I like this image too!
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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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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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