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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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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Positivities

imageParkinson’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.

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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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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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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 (http://thejellychronicles.net). 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 http://www.giveasyoulive.com

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