Parkinson's Disease and me

My blog about my experience with Parkinson's Disease

Fishy tales


I seem to have what LSO calls “the hunting gene” and I am looking forward to going fishing again but it is unusually cold here for the season and my Parkinson’s prefers it warmer. Apart from that the Modopar® seems to be working tolerably well.

A stream runs by at the bottom of our garden and we had a very boggy swampy area covered in nettles and brambles which we couldn’t use. Many years ago we had it dug out and turned in to a small lake or perhaps a big pond is a more accurate description. There is a natural spring there and it soon filled up and was occupied by many interesting creatures including frogs which sing a wonderful chorus at this time of year.

Our neighbour has a big lake very near our house and he said I could fish there whenever I liked. I used to sit in the sunshine quite at one with the world and contentedly fish. LSO does not share my hunting gene and he stayed at home working on the computer. I caught several large carp and had a bucket ready so that I could carry them back and deposit them in our lake but I just couldn’t bear to touch them to get them off the hooks. We worked out a solution. As soon as I caught a fish I would call him on the mobile phone and he would cycle down to the lake on his mountain bike, unhook the poor fish and deposit it in the bucket of water then carry it back to our lake getting soaked through as it thrashed around in the bucket. We must have made quite a spectacle.

Writing about this I am reminded of another “fishy” story. Even longer ago I worked with school leavers going on to government training schemes. I had a colleague, Mrs Raised-Eyebrows, who was typical of the staff recruited in that era in that she detested young people in general and was usually quite nasty to them. However there was one girl to whom she really took a shine. Poor Sadie had a plethora of problems and learning difficulties. She had nothing going for her but she really was desperate to work and kept trying trying to get a placement no matter how many times she was rejected. My colleague arranged it with a friendly employer so that Sadie simply had to turn up for her interview at a fish processing factory and no matter how badly she performed she would be taken on for a trial. She spent a lot of time preparing her for the interview, gave her the bus fare and sent her off. She came back looking most displeased – not the expected result. “I don’t want to work there” she said. “I don’t want to touch fish”. “But Sadie,” said Mrs Eyebrows “we talked about the job and that you would be packing fish in tins before you went to the interview”. “I know but you didn’t say they was dead ones!” retorted Sadie with disgust. I knew what she meant!

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Escape to the sunshine

imageExercise and sunshine compliment my medicine for Parkinson’s Disease and I was missing both. At home the Aquagym classes are closed for the school holidays and then the pool is closed for a further couple of weeks for maintenance. I couldn’t even rely on my gym group – a weekly keep fit group for old biddies like myself. We usually spend an hour exercising in the local Salle des fêtes but of recent weeks much of this time has been spent in discussion rather than prancing. We have been planning a great feast to use up surplus group funds and debating on whether to opt for a cous cous or paëlla from the local butcher and what starters and desserts we group members will contribute. The old folk’s card group meet before our gym club and because of the inclement weather they have had the heating in the hall turning up to high so it’s also been quite unpleasant for us athletes to attempt our workouts.

Our weather had been awful and everyone was fed up with the dark, wet days. At home we were flooded twice. No lasting damage was done mainly due to the entire floor being tiled. It was too wet to go out walking for days on end and cycling was completely out of the question. A few days ago we decided that enough was enough and on the spur of the moment we booked an apartment on the Costa Brava for a week and headed south, braving torrential rain and high winds to get here. Apart from the day we arrived it has been warm and sunny here and we have been able to walk all day long and leave our coats behind. We have had long lazy lunches on the beach washed down with a cool glass of wine. I hope we will head back into better weather but looking at the forecast I doubt it.

 

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The best present

 Yesterday was my birthday and next Sunday we will keep up the tradition in our remote hamlet which is to invite all the neighbours in mid afternoon for cake and bubbly. It was five years ago, the last time we had a lot of snow, that we did the same thing. The fire was roaring, the table laden with cakes and the Long Suffering One had the really cool idea of sinking the bubbly in the deep snow of our backyard to chill. As the neighbours arrived he went outside sensibly clad in his slippers to bring in a couple of bottles. There are two steps down into our dining area from outside and he promptly slipped down them and cracked the base of his spine on the bottom step. He was in agony and the neighbours scarcely consoled him with their admiration for the fact that he managed to hold each bottle securely without dropping either.

I wasn’t sure what to do but my neighbours, all farmers, took over. He was wrapped up and helped out into a vehicle equipped for the snowy conditions and driven a few kilometres to another local farmer with the healing ‘gift’ for drawing out pain. I was amazed he went as he is such a sceptic but I guess it was a mixture of pain, embarrassment and not wanting to appear rude or ungrateful. Just as the neighbours predicted he returned still sore but better enough to enjoy the rest of the celebration and then a surprisingly good nights sleep. Fortunately when he went for an X-ray the next day, as advised by the healer, he had not done anything serious. He had quite an adventure and insight into rural practices here.

I hope my celebration next Sunday will be less eventful. My best present as ever would be news of a better treatment or better still a cure for Parkinson’s Disease. I subscribe to Google Alerts which sends a daily update and I am aware of many global developments. In the meantime I continue to take up Jellywoman’s suggestion to raise money by on line purchases through Give as You Live. It works in much the same way as a comparison site, with the retailer paying a commission for sending people to their sites – only in this case the commission is passed on to a charity of the consumer’s choice. I used the iPad app to buy my Christmas presents from eBay and Amazon and nominated Parkinson’s UK to receive the commission. It all helps!

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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.

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For adults only

  IMG_1699My 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.
  • IMG_1706

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_artistsIMG_1704

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In praise of electric bikes

My neurologist encourages minimum medicine plus maximum exercise for my Parkinson’s Disease.  I’ve always been a bit sporty and have been mainly happy to concur, especially as I know it really does make me feel better.  The trouble is if I am feeling decidedly iffy it’s quite hard to motivate myself to do it.  My main strategies for overcoming this are my activity tracker wristband on which I set and monitor my target daily steps and my long suffering partner who boots me out the door!

Being an Aquarian I love gadgets.  This, together with my advancing years and the hilly area in which I live has resulted in me buying an electric bike about six months ago and I love it.  I have the cheapest, lightest, most basic one we could find.  Most days find me purring around the countryside exploring new routes – I even have our old Tom Tom strapped to the handlebars.  Here in France it is illegal to use the throttle – not that I want to as I like pedalling.  The battery gives a bit of a boost and I can pedal up the steepest hills.  Admittedly it doesn’t go very fast but I don’t care!  It causes quite a bit of interest as I sail up hills as it looks just like an ordinary bike.  My keen cyclist son says its like being overtaken by a sewing machine!  Cows and horses in fields sometimes scatter in alarm as I whoosh by but those on my usual routes just ignore me and munch on contentedly.
I think they are really catching on here.  We bought mine in England because it was so much cheaper but I notice many more are now in the shops.  In Nice we found a small street where all the shops were electric bike shops.  Here a scheme has just started to encourage people to use them by giving a free fortnights trial with an electric bike so I’m hoping my friend and neighbour may give it a go and come and join me!
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Clickety click!

imageA highlight of the social calendar in these parts is the local school lotto. The school, itself, is tiny with about twenty pupils from maternelle to 11 years but the salle des fêtes is always so packed that there are problems getting everybody in. Like all events here, nothing gets going before about 9.30 or finishes before midnight as the generations of the same families who attend like to catch up on gossip with all their cousins.

I think the prizes are all donated. They are certainly many and splendid, largely meat based but ranging from white goods and holidays to tins of vegetables. When we first moved here we were a bit afraid to buy a raffle ticket just in case we won when we discovered the prize was a beef cow! Nowadays it’s more likely to be three live chicken – much more manageable!

My French isn’t too bad but I’ve always been numerically challenged, even in English, so I need all my wits and the helpful eyes of my neighbours to cope with running the six or even eight cards at the same time. Concentration is needed for the complex requirement for a prize such as ‘middle line’ or one on the end of each line’. Fortunately the caller has a very loud microphone which is just as well as the excited children run around and around the room the entire evening and take particular delight in playing hide and seek under the tables. The lotto cards are cardboard and very old. I wouldn’t be surprised if they dated from the 1950s as they seem just like those I remember from the Christmas presents of my childhood.

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I’m now old enough to qualify for my first flu jab. Despite encouragement from LSO who has already had his, I did approach it with some trepidation after hearing grisly stories from the neighbours about the side effects others have experienced. I wondered if it might react with my Parkinson’s medication but I’m pleased to report there was no reaction. I didn’t even notice the prick!

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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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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 http://thejellychronicles.net for any previous slight on domestic goddesses.

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