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 …

 

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.

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!

The Good Life

  This year we had a bumper crop of apples and we made about 30 bottles of apple juice. A neighbour gave us an ancient grape press which we call “the scratter”. It does a good job of mashing the apples. It is quite huge and heavy to turn the wheel – the Long Suffering One’s job – so the apples need to be cut up a bit first – my job. It’s fine to leave the core and pips but I discard the brown and wormy bits, although around here they leave the whole lot in! The squashed apples are caught in a bucket beneath the scratter and are then put through a fruit press which extracts the juice. This was a gift from another neighbour who couldn’t be bothered with the amount of effort involved. Finally we strain the juice through muslin, siphon it into bottles and pasteurise it by heating the bottles to 77 degrees for 30 minutes. It takes us all afternoon to make 5 bottles but it tastes wonderful and although hard work, it’s strangely satisfying to do.

We have just spent a week visiting our family in England. It has been a daily whirl of travelling, playing with grandchildren, watching my grandson play football, long walks, huge family meals, pub meals and late nights and non-stop catching up. I have scarcely noticed my Parkinsons. It has made me realise even more the importance of keeping active. Usually I do a lot of physical exercise like bike riding, swimming and gym but otherwise I lead a very tranquil life – apart from apple juice making, that is! It’s good to do a different type of activity for a change. Now I am home again I have started to think about my next trips … maybe somewhere hot for Christmas … maybe even further afield. I have been inspired by the blog http://meandparkinsons.com which is always so positive and talks about all the things you actually can do with this wretched disease like dancing with the national ballet, singing in a choir and travelling to Australia.

For adults only

  My sister knows someone who has Parkinson’s and who spends hours on adult colouring books. His wife says this is wonderful therapy for him. He gets really absorbed and forgets his woes.  It is good for his dexterity and co-ordination. My sister asked me if I would like her to get me one. The idea does not particularly appeal to me but I was surprised that such things even existed so I googled “adult colouring books” and was amazed to discover what a craze it is.

• Two colouring books by Scottish illustrator, Johanna Basford (Enchanted Forest and SecretGarden) were at one point ranked first and second in Amazon’s best sellers list. They have been translated into 24 languages.
• Her coloring books are especially popular in Paris, where they recently outsold France’s best-selling cookery books, something that was pretty much unheard of until now.
• Publishers say the vast majority of adult colourers are female.  French women seem particularly fond of flocking to book shops in search of challenging and highly intricate albums de coloriages.
• The idea that colouring things in has been psychologically deemed overwhelmingly beneficial to adults, and their use as a relaxation technique dates back as far as Carl G Jüng in the early 20th century.
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Whilst the idea of colouring in someone else’s lines does not really interest me I have been whiling away a few hours trying to teach myself to draw and paint and I can vouch for all the therapy claims. So here in the anonymity of this blog are a couple of my first efforts. There some lilies from my garden and no – not the long suffering one but a chimp copied from a photo! If you want to see some better ones from PD artists visit The PD Foundation’s site: http://www.pdf.org/en/creativity_artists

Positivities

Parkinson’s Disease is horrid so for once I’m pleased to share two things which have improved for me since diagnosis. The first is my table tennis prowess which is already documented in this blog. Now, at last, I can add another positive outcome in that my ability to paint has improved. This is in the emulsion and gloss decorating sense rather than in the Van Gogh artistic sense although I should perhaps try that too to see if there’s an improvement. We’ve tried to analyse the reasons why I get a better finish, with no drips, no mess on the floor or on me and brushes with clean handles. The reason is, we think, because like everything else I paint more slowly, carefully and determinedly rather than in my slapdash, pre-Parkinson’s frantic rush to finish.

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I recently came upon this inspiring account of Astronaut Rich Clifford’s journey with Parkinson’s disease. See http://patients.aan.com/resources/neurologynow/index.cfm?event=home.showArticle&id=ovid.com%3A%2Fbib%2Fovftdb%2F01222928-201208020-00016

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I think my sense of smell must still be OK. My Dutch neighbour and I were invited to one of those demo/selling parties for cleaning materials at a neighbour’s house. At one stage we were invited to smell and discuss the bouquets of several different lavatory cleaning products. The thought of us all sitting sniffing toilet cleaners struck both of us funny at the same time and we had one of those horrendous moments when our shoulders shook and tears ran down our faces. The more we tried to stop the worse our convulsions became and, of course, nobody else could see the joke. Needless to say, we haven’t been invited to another party.

Nice one

Life 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!

Apologies

Our 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/

Yoda granny

Before 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!

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!

Related articles

• Michael J Fox: ‘Nobody pities me and that’s great. I couldn’t stand it’ (theguardian.com)

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.

Related articles

• Parkinson’s UK asks those affected by the disease to identify the top 10 unanswered research questions (simondenegri.com)

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!