Parkinson's Disease and me

My blog about my experience with Parkinson's Disease

Bottles of sunshine

imageJust the chestnuts and ceps to do and I will have bottled up summer 2014. I don’t know why but I get a tremendous feeling of well being when I look at my preserves store.

Actually everyone around here bottles their summer fruit and vegetable glut to consume throughout the year. I inherited my preserving jars when my 92 year old neighbour died about 5 years ago. She was the lady from whom we bought our house. Like generations of her family she had been born in the house although by the time we bought it from her she had long moved out into a smaller house in the same village. Our preserves are stored in the souillard – a sort of back kitchen which had no ceiling when we moved in because they used to hang the pig from a hook on the roof beam at one time. Now I feel as though my glass jars and bottles have come home.

Her niece offered us the preserving jars and we collected them in several trips with a wheel barrow. We were amazed to discover that many were full and some had labels dating back to 1972. The long-suffering one was quickly tasked with sitting outside to open the bottles and empty the contents into a bucket so that I could put the jars into the dishwasher. As he sat in the sunshine completing my bidding another neighbour, another old lady, enquired what he was going to do with the contents. He told her he had the compost heap in mind and she was horrified. He explained the contents of some were 40 years old and dangerous to eat but she picked up the bucket and said that was a waste and she would give it to the chickens. So that day the chickens dined on a mélange of figs in brandy, beans, carrots and mushrooms and who knows what else with seemingly no ill effect either to them or those who consumed their eggs.

Preparing the fruit and vegetables is actually very hard work particularly tasks like skinning tomatoes and stoning fruit like plums, and backs and thumbs ache in complaint, but all this is forgotten in the winter when we open a jar and remember the summer days. I can recommend it as a good dopamine substitute.

With apologies to for any previous slight on domestic goddesses.

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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:


What language barrier?

20140801-164819-60499936.jpgThe pool was finished in time and is wonderful. The children and grandchildren have been to stay and have well and truly christened it. Finally we get a chance to use it ourselves.

Despite all the toys, books and games we keep here their favourite games are World Cup football using two upturned buckets as posts and fly swatting. This latter occupation is to the consternation of their mother who is unhappy with the killing aspect and unsuccessfully suggested they use the swatter to just frighten the flies away.

It is strangely quiet now the family have left. Whilst they were here our friends and neighbours invited us all up for a BBQ with their children and grand children plus their son-in-law’s parents. A separate table was beautifully set out for the children – our two boys aged 10 and 6 and their two girls aged 8 and 5 and we 8 adults sat to sip our aperitifs, watch and admire them. There followed a great deal of uncomfortable silence. The problem was that they don’t really remember each other and don’t have the language skills to talk to each other. I glanced at our eldest who looked as if he was hoping a big hole would open up into which he could conveniently jump whilst his little brother amazingly was quite put off his sausages!

Finally a French grandfather broke the ice by bringing out a pile of pea shooters and the children teamed up to attack us. This was followed by a game of hide and seek and a dip in the pool and the communication barrier was well and truly broken.

As we discussed the language barrier I was reminded of an amusing little story from more than thirty years ago. We had some friends who were desperate for children and eventually adopted two children from Sri Lanka. Our friend told his mother and father who lived a long distance away that they had adopted a baby girl just a few weeks old and invited them to come to stay to meet their new granddaughter. Knowing how prejudiced they were he omitted to say where the baby came from. He thought his beautiful new daughter would melt even the hardest heart and he was absolutely right. Cradling the infant lovingly his misty eyed mother said “She’s so perfect and lovely but whatever will you do when she starts to talk? You won’t understand a word she says!”

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Auntie’s advice

imageWe’ve been deliberating for a little while but now we’ve done it! We’ve invaded the ‘kids’ inheritance’ and commissioned a swimming pool in the garden. It’s fairly small (6×4 metres) as we wanted to site it away from our neighbours view. So it’s going into our former potager to the side of our house which is a real sun trap as the installers have found to their chagrin as they have started working on it. Now the cement is drying out for three weeks before the final stages of work begins. We’ve gone the whole hog and it will also be heated to extend the time we can use it. I would like to say we have been rushing around buying aqua gym type equipment ready for starting a serious exercise regime as soon as it’s ready but so far we have only been tempted by a floating blow up armchair complete with glass holder which we quickly acquired!

There’s also a little cheering news. I had a surprise phone call from my one remaining aunt who I haven’t seen for more than 20 years. She is the only person I have discovered in my family who also has Parkinson’s. She told me she has had it for 8 years. It seemed to start after she had been ill with a virus. Her worst problem is her sight but apart from a shaky right hand the Parkinson’s does not bother her too much. It is only this year that she has started to take any medication. Her advice? Exercise…exercise…exercise! She is 82 and she was widowed last year. My uncle was a former paratrooper and was a physical training instructor. He worked out an exercise routine for her which she still follows today. She is so proud that can still touch her toes. He was a very strong character and I really thought she would go to pieces without him. However she is so courageous. She has joined a senior citizens club and regularly goes on all sorts of exciting visits and she has just returned home from two weeks at the seaside.


Dippy me

20140601-062153-22913399.jpgI love to ride my bike and it go out on it most mornings. I even have an app on the mobile phone which times and analyses my efforts. I try to improve my times for each of my circular routes.

Lately it has rained so much I haven’t been able to ride. The first time I went out I found it a real effort and the subsequent couple of days were even worse. My legs ached and I found the hills a real struggle. I was worn out by the time I finished rather than energised. My times got drastically slower. At first I blamed it on the lack of practice and the strong headwind but I soon began to worry that the Parkinson’s was getting worse. I struggled even to go down hill. Eventually I confided my fears to the Long Suffering One. Shortly after I saw he had my bike upended and a bucket of water. He had discovered a big thorn in the tyre which was completely and utterly flat! He couldn’t believe I hadn’t noticed the noise and I remembered I had but I was too busy worrying to think too much about it!

Now, puncture repaired, my times are better than before. The extra effort from cycling with a flat tyre has probably helped my performance.

We shared this little episode with the neurologist at my six month check up and he was highly amused. He did all his usual tests and watched me closely with his penetrating eyes… I feel he is looking into my very soul! We waited with baited breath as he dictated a letter to my doctor in front of us. The verdict: no change so no change in medicine and next appointment in six months. Hallelujah!

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Whirling and twirling

imageMy blog started off about my journey with Parkinsons but I’m finding just concentrating on the Parkinsons aspects of my life is rather boring now I’m getting more used to having it. I no longer read everything I can find on the subject in fact I rather try to avoid it and life progresses as usual.

A recent highlight here was the Comités des fêtes meal – the committee organises all the local events. It was a very jolly occasion with a beautifully cooked, many-coursed meal and was held in the village hall. These events, indeed all the events here always follow exactly the same format and they have not changed at least in the 17 years since we bought our house here. They are always very happy events attended by all ages.

The publicity says the meal starts at 8 pm but what this really means is the aperitif starts at 8 pm and lasts for a minimum of two hours. I find I get absolutely starving and then get past it by the time the soup arrives at 10.30. In between each course there was dancing with live musical accompaniment from a guitarist and a keyboarder player. People of all ages whirled around in the aisle between the rows of trestle tables. We would love to be able to do those dances but we’ve never mastered them.

With all the wine and a heavy main course of duck confit our heads were nodding after midnight when they set up a screen to show a DVD of the highlights of the previous year. A confetti of PowerPoint effects followed with many distant and out of focus stills spinning around to very loud music … A lovely idea for 10 minutes perhaps, but after the first half hour and before the dessert! We managed to avoid buying a copy but most were snaffled up by the other diners.

I don’t know what time we left but I know we were almost the first to go and the coffee had still not arrived.

and back to Parkinson’s …. there’s really no getting away from it …. I’ve just started donating to Parkinsons via Give as You Live as suggested by Jelly Woman who writes my favourite Jelly Chronicles ( It’s so easy to do.

If you haven’t already signed up for Give as You Live, then please, please do. Every time you buy something online from a whole range of places – including Amazon – a donation will go towards Parkinson’s research at no cost from you. The link is

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imageAt last my Carte Vitale has arrived in the post. This is a little plastic card with a chip containing all my social security details. Mine includes details of my ‘Affection de Longue Durée – (ALD)’. My Parkinson’s Disease is classed as a long lasting illness and all the treatment costs are met by the state and do not affect my insurance premiums. No longer will the doctor or pharmacist groan when I visit because they have to complete lengthy forms to enable me to be reimbursed for my medicine and treatment from my insurance. These cards are notorious for taking a long time to arrive. Mine has taken nearly a year. My partner is still waiting for his.

The lady in the local office has done her best to help us with the delay. She thought some of the problems were caused by the accompanying paperwork we had to submit. Top of the list is my vintage 1949 English birth certificate which is the wrong size for an ordinary A4 photocopy or scan necessitating two pages which is unacceptable. The copy must be the actual size on one sheet of paper. We tried submitting a colour photograph of it on A4 paper which was also unacceptable. Further confusion came because my mother (the informant) and I (the baby) both had the same names so we were required to submit a translation of the certificate. More problems came because I am divorced but I have kept my married name so I was asked to submit my divorce papers. These are in my married name but do not mention my maiden name so no proof of identity! These were just some of the reasons our friendly lady thought caused the delay. Eventually they got a bigger photocopier in the local office which seemed to solve the problem.

I received notification that I was about to receive the card and a request for a new passport-sized photo to be sent quickly. We went into a supermarket with a passport photo booth. There are strict guidelines on the photo in the booth for example the ears and eyebrows must be visible, no earrings, hair must be pushed back from face, eyes must be level with the guides. The seat was wonky and difficult to manoeuvre to get my eyes in the slot guides. Then the machine snaffled my 5€ note but nothing happened. A shop assistant knew there was a problem with the machine and leant under the curtain with another note. I was quite fraught by the time the picture was taken. Unsurprisingly I now have a photo on my card in which I look completely crazed with wild manic eyes!

Anyway now I have the card so no more standing around for twenty minutes whilst the poor pharmacist enters my details in his computer as a queue of people waiting for prescriptions builds.

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Bats and balls

imageIt’s very strange – despite the Parkinson’s my table tennis skills have greatly improved. It’s true I have been playing more lately but I wonder if it’s something in the medicine (Sifrol). I used to be such a bad tempered player banging the balls wildly in temper but now I’m calm and relaxed and much more deadly.

The reason I’ve been playing more table tennis is that the weather has been wet and awful for weeks so I haven’t been able to cycle or go for long walks but I could stand at the table and play a few static games. The table is in a barn which is also home to various bats and birds. Despite our efforts to cover it with old sheets they still manage to leave their calling cards and if the ball hits one of them there are some interesting deflections.

Even if the weather had been good I was grounded by my knee doctor who was giving me a 3 week course of hyaluronic acid injections for my dodgy knee. Thankfully that’s now finished and it seems so much better I feel ready to start my exercise regime again. All this sounds much grander than it really is. Cycling is my favourite activity. I like to find circular routes and time myself using the Sports Tracker app but my favourite route is a one way downhill one along an old train track through woods. My partner meets me at the other end and puts my bike in the back of our old van so I don’t have to ride back.

On Monday I will be back at the aqua gym where the class is made up of rickety old grannies like myself and one lone man who hides away at the back. The group reminds me of a troupe of elderly flamenco dancers I saw in Spain years ago. They walked with difficulty, some even had sticks but as soon as the music started they danced blithely and gracefully. Our group is a but like that but at the pool it is the warm water that transforms us.

Next I will be back at the gym. Strictly speaking it’s not really a gym but that’s what they call it here. It’s a keep fit class in the village hall. It is none the less strenuous not aided by the fact that it’s always baking hot there because the oldies play cards there before us and like to have the heat turned right up. It’s good fun with much laughing to accompany the groans and creaking joints. It lasts an hour and you can always catch someone taking a sneaky peak at their watch hoping it’s nearly finished. It’s a good job I’m not trying to lose weight as it usually ends with cake and cider or chocolates!

I’m really looking forward to getting back to all the exercising again as it makes me feel so much better.

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Happy knees

There was an article in our local paper recently about happiness. It seems the French fared badly last year in a happiness league of all countries – this despite the wine and the welfare state. It also went on to say that it’s only relatively recently that people have expected happiness out of life. Only 50 or so years ago people were more into concepts like duty. It made me think about happiness in relation to my Parkinson’s. I am happy with my life now despite it whereas occasionally in the past I have been unhappy due to circumstances even though I was fit and healthy and still producing a good supply of dopamine.
Lately my knee has been playing me up more than the Parkinson’s. The diagnosis is ‘a bit of arthritis’. My partner’s sister has the same in England but what a difference in the treatment. Her doctor said ‘It’s a bit of Parkinson’s. Bye bye.’ Mine sent me for a set of X-rays a few days later to confirm his thoughts and gave me a prescription for a carrier bag full of pain killers and aerosol rubs. The doctor at the X-ray clinic gave his instant report and I took his letter and the X-rays back to my doctor. It confirmed his diagnosis but he thought I should seek out the best course of treatment so he sent me to see a knee consultant the next day and now I await 3 Hyaluronate injections starting next week. Phew … And all for ‘a bit of Parkinson’s’.

Since having Parkinson’s I have become a bit of an exercise addict and I am delighted that all three doctors say cycling and gym are really good for both Parkinson’s and arthritis.


Nora Batty


Before Christmas I was getting really worried about the pain in my neck and head but it seems to have gone now. I guess some Parkinson’s symptoms come and go? It has been better since I had a week in the warmth of Nice. Before that I discovered I could get rid of it by stretching and this worked better than paracetamol. I browsed the Internet and read about a woman who recommended stretching on doorways every time you enter a room for this problem. Soon I was doing the same thing. Fortunately we live in an old house with low doorways. It does, of course, look odd so I had to explain to people why I was hanging off the doorway like a bat.

Actually we do have bats here in one of our barns. This prompted me to look up some bat facts and I discovered some comparisons.  Here is a short selection:image

Bats are not blind but they ‘see’ in the dark by listening to very high-pitched echoes of their calls bouncing off objects around them. Completely different here. I can’t see a thing in the dark. Come to think about it I see less and less well in the daylight.

Bats produce the largest babies in the animal kingdom. An 8 gram mother Pipistrelle bat may produce a 2 gram baby which is 25% of its body weight. They can only produce one baby a year.  Imagine that!  I weigh 57 kilos so that would be like giving birth to a baby weighing 14 kilos …. Ouch!

Bat colonies save billions of dollars a year in agricultural pest control. There’s no need to use harmful pesticides when you have a robust colony of bats nearby. A single bat can eat more than 600 bugs an hour — making bats a perfect choice for organic pest control. I wish some of my farmer neighbours were more into this. They spray the crops with all sorts of chemicals and it seems to me there is a high incidence of Parkinson’s disease in our small community.

Many people in the Pacific island of Guam have developed Parkinson’s Disease, due to feasting on flying foxes, a species of bat that can be as big as six feet across. This is because the bats eat cycad seeds which contain a potent neurotoxin ….. Not to worry – I’m not about to start eating them!

Then there are many bat related figures of speech such as “The cat took off like a bat out of hell.” . This isn’t quite how I would describe my speed nowadays.

Or to show no signs of distress even when something bad happens or something shocking is said e.g. Sam didn’t bat an eyelid when the mechanic told him how much the car repairs would cost. This sounds a bit like the Parkinson’s mask.

I don’t think I am very bat like …. more that I am going batty!

I found this exercise leaflet on the Parkinson’s Society Canada website. It shows the stretching on a doorway exercise and many others
To go to pdf click on ‘resource’

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3rd visit to neurologist


Yesterday I went back to see the neurologist.  In the two months since my last visit I had felt that the medicine was working well but just over a week ago I started to have a new sharp pain in the back of my head which feels linked to turning my head to the side.  It comes and goes.  Sometimes I can get rid of it by stretching exercise or moving around but I have also resorted to paracetamol.  It was particularly bad one day when it was bitterly cold.  It does not feel like a head ache but more muscular.  I started the usual awful Internet trawling searching for similar symptoms fearing my Parkinson’s is getting worse.  The neurologist watched me in his usual intense way and went through the usual tests.  I told him about my aches and pains.  I also have a pain in my right knee.  Admittedly that has been a recurring problem for years.  Then he surprised me by saying he was really pleased with how I’m doing and that he does not want to increase my low dose of Sifrol and that I need not see him for 6 months.  The best news I’ve had since my diagnosis.  He is not concerned about the head pain which is the result of neck stiffness and he suggests I look at my posture when riding my bike and keep taking the paracetamol if it helps.  Now I have something different to research on the Internet.  It is strange how much better I feel after his positive reaction. The pain has lessened and lost importance. He is always so very encouraging.  He says to phone or email if we are worried about anything before the next appointment.  As he says, medicine and exercise are equally vital in living with Parkinsons but I think he is becoming my third ingredient.  Now we are going to Nice for a little winter sunshine before Christmas.
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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!

Getting creative

imageI’ve just noticed I am doing more and more of the activities I used to do before Parkinson’s Disease crept up on me. I think this is down to my Sifrol medicine. It’s effects are creeping up on me too.  I don’t notice the tremor or the strange, tense feeling in my hand so much even if it isn’t entirely gone.  That said, my hand shook like fury yesterday at the mobile phone shop where a snotty young assistant treated us like imbeciles!  Generally the tremor seems to have improved.  Maybe I am just getting used to it but I think it’s more than that.  I am told I have stopped holding my left arm in an unnatural position.  The neurologist has increased my dosage in very small steps 0.26 mg at a time and now I am on 0.78 mg.  I did have some side effects.  At first I kept falling asleep but this stopped.  I also had a bit of nausea and a little light headedness.  I read the leaflet listing the many possibilities of side effects and the sort of person I am, I immediately started anticipating them!  This has happened each time the dose has been increased and has lasted a few days. I think the medicine must take several weeks to really start to work on me.

The good news is I am gardening again and have been preserving our harvest for the winter.   Our store cupboard is full of jars of fruit and bottles of apple juice.   I am cooking again and enjoying my love for trying new recipes.  My doctor suggested knitting and sewing were good exercise for my hands so I’ve been making a lap rug.  I’ve also woven a door mat from old rags.  I feel as thorough I am re-cycling myself a little!

I read that dopamine agonists some times bring out your creative side and I hope that might happen to me.   I’m going to have a go at drawing and maybe painting if I can fit it into all the activities I’ve been doing lately.   I’m lucky that my tremor is in my left hand and I am right handed.  I don’t notice the tremor when I am using both hands at the same time but it’s so annoying when I am using just one hand.  For example when I was painting a garden chair in the summer I had to stop as my other hand was twitching so much I couldn’t stand it.  Let’s see what happens.

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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!