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 …

 

Anxiety

There has been a lot in the news about anxiety lately. Anxiety is one of my main Parkinson’s symptoms. I think this article sums it up really well, particularly the bit about how to spot it. I believe my Parkinson’s began several years before the tremor that led to the diagnosis. Anxiety was the first symptom. I couldn’t understand the way I was feeling. It was only after some internet research I realised that there was a word that summed it all up “anxiety”. Before that I’d never given the condition a second thought. I knew what the word meant but, I didn’t realise it was a medical condition.

At that time I was diagnosed with Post Traumatic Stress Disorder because it seemed I had unresolved issues following a rather nasty assault when I was working away from home. Before that I had been pretty fearless and felt invincible. I opted not to take medicine and went for counselling which worked fairly well. Eventually I was able to take a voluntary redundancy and lead a much less stressful life. The anxiety symptoms abated but I always feared they could return some time and they did, just before the tremor in my left hand started.  

Now that I have Parkinson’s Disease confirmed I am always slightly anxious and on the lookout for new symptoms. It’s a loop. The best way seems to be to treat it with humour and laugh at myself but it’s not always easy. I worry about the most stupid things and even though I know they are silly it doesn’t stop me worrying. For example a few months ago my neurologist increased my medication slightly and at the next visit he said I seemed a “little better”. He said there would be no change and he would see me again in 3 months time. He asked me if I had any more symptoms like freezing and I replied that I had not. Really it was all very positive but my anxious mind twisted it so that I worried because I was only a little better and I interpreted the rest to imply that he expected me to start freezing in the next three months. All ridiculous but none the less real. As I said to LSO – I get on my own nerves! He replied that I must get the trait from my mother and reminded me that many years ago I went for a chest X-ray for a school medical and when the results came back marked “satisfactory” my mother was most upset that they weren’t marked “excellent” or even “very good”!

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!

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.

Escape to the sunshine

Exercise 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.

 

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!

Carson’s palsy

Along with millions of other people worldwide this Christmas I watched the final episode of Downton Abbey on TV. I was intrigued to see that the butler, Mr. Carson, had to end his career through what looked very much like the onset of Parkinson’s Disease. His hand shook so much he could no longer pour the wine without spilling it. When questioned about the problem he said he knew that it was “the palsy” and that his father and grandfather had both had it too.

I thought there would be lots of mention of this in the Parkinson’s news as Downton has been such a worldwide hit but I found very little mention. It always seems to raise the profile of the disease when it affects someone well known. So I did a little research on the internet which revealed that Carson probably had an Essential Tremor rather than Parkinson’s. It seems the Downton creator, Julian Fellowes is also suffering from the condition Essential Tremor and initially he feared it was the start of Parkinson’s Disease. Medical experts say the condition, often abbreviated to ET, affects around four out of 100 adults aged over 40. There is no cure for the tremors, which may become so severe that the whole body shakes. I learned that the tremor is an action tremor whereas Parkinson’s is a resting tremor. Lord Julian Fellowes has since committed to helping other sufferers by becoming president of the National Tremor Foundation.

Perhaps Mr Carson’s problem will in some way help raise the profile and funding of neurological disorders in general in the coming year.

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.

DIY Gym

 

I have just finished the 20 physiotherapy sessions for Parkinson’s posture issues prescribed by my neurologist. I’ve never had physio before and didn’t know what to expect but I really feel a lot of benefit and so I intend to keep it up and have made these notes as a reminder of the half hour sessions. I can still hear my cheery physio’s voice encouraging me to look up and keep my shoulders back. He kept telling me how good my balance is and how the exercises are far too easy for me – no doubt his usual patter but it has made me a lot more confident. The long suffering one now replaces the physiotherapist and has made me a few simple pieces of equipment in one of our barns which has become my gym. I find five minutes on the pulleys works particularly well any time my back starts to ache.

1. Sit propped up on couch physio gently rotates each foot, bends knee, moves leg sideways 2/3 mins

2. Weights on ankles: Sit propped up on couch with bolster under knees. Place weight on each ankle. Slowly raise one leg 10 times then change leg. I made cotton bags filled with rice for the weights as they sit easily and comfortably on my ankles. Kick physio’s hand held above at various heights with alternate feet. 10 mins

3. Stretches: Still sitting stretch one arm then other high above head 15 times. Join hands behind head, move elbows together in front then back as far as possible 15 times. 15 boxing movements. Touch nose with alternate index fingers repeatedly. Sit upright tapping hands on opposite knees . Make fists, rotate wrists, pinch fingers and thumb on each hand, touch nose with alternate index fingers, sit and pat alternative knees. 2/3 mins

4. Balance standing on one leg with other knee raised, then other. Eyes shut, physio gently pushes shoulders in different directions to test balance. 1 min

5. Pulleys sitting in chair to stretch alternate arms. The LSO has made me a pulley system out of old washing line with tube handles and attached to a beam. 5 mins

6. Wall bars and step. 15 steps alternate legs, step sideways then squats. LSO has substituted an old towel rail anchored to the wall at a convenient height. 5 mins

7. Exercise bike 6 mins

I guess I am lucky in that I have always enjoyed sport and exercise generally. I cycle most days, walk, swim every day in summer, go to Aquagym and keep fit classes and now I have this routine with bite size chunks. I was interested to find this article on Physical Therapy – Exercise and Parkinsons Disease at http://cirrie.buffalo.edu/encyclopedia/en/article/336/#s11

In stitches

I don’t know if it’s the Parkinson’s medicine or not but of late I do have strong urges to make things. Most lately I’ve started making my own clothes. Over the years I have always made things like curtains and cushion covers but this is a new departure. I own two sewing machines – beautiful 1910 hand-cranked Frister & Rossmann which I used in preference to what I always thought of as my “new” Jones electric machine because the latter has no speed control on the foot pedal and is far too fast for me. I add the inverted commas because I realise that the Jones too is actually pretty old and bought in the 1960s. Where has the time gone?!

I am also a sucker for gadgets so, with my new found hobby in mind, I sent off to China for a ten euro eBay bargain – 32 sewing machine snap on feet. They duly arrived but I didn’t know what any of them were as it was all written in Chinese! I spent hours identifying them from the Internet and putting them back into the box they arrived in and then of course duly dropped the box and mixed them all up again! Additionally I discovered they would not fit the Jones without an adapter so as Lidl’s conveniently had a special offer on sewing machines I have become the proud owner of a new Pfaff. It’s like a revelation. I didn’t realise how much sewing machines have advanced over the years.

A friend and I have discovered a local fabric mill which sells by weight every type of fabric you can imagine and is so cheap too. It was fabric heaven and she shook as much as me with excitement! I have also inherited two plastic bins of fabric which belonged to the mother of another neighbour. It comprises mainly skirt and dress lengths. They are all new but exceedingly smelly with age. I have downloaded free patterns from the Internet. They arrive as many pages which I spend ages assembling like a giant jigsaw puzzle and the glue together. I have managed to get glue on the new kitchen floor tiles but I haven’t yet admitted to that one!

I sit in my little work room which is a converted chicken house sewing happily and completely forget the Parkinson’s. Strangely my left hand tremor seems to go away. The Pfaff even has an automatic needle threader …. Bliss! I used to spend ages trying to thread the needles because of ageing eyesight more than any other reason. I’ve been pleased and even complemented on my finished projects.

I looked up Parkinson’s and creativity and found this article which I thought was interesting: http://nautil.us/issue/20/creativity/the-most-dangerous-muse

Small comforts

The beginning of August marks the second anniversary of my Parkinson’s Disease diagnosis. I don’t remember the exact date as it was so awful I must have erased it from my memory. I do remember the neurologist waxing lyrical about the benefits of exercise and telling me that I should carry on my life as before, just that things might take me a bit longer and I might get a bit more tired. How right he was!   That gave me a little comfort. A fortnight ago I had my six month checkup with him and he said there was no need to increase the medication but that I may benefit from 20 sessions of physio for my posture which has changed. At the end of the visit he always dictates a letter to my doctor in front of us and in it he said the condition was ‘stabilised’. This time that word gave me the comfort I sought.
Everything health-related happens very quickly here. The half hour physio sessions started the very next afternoon in the local health centre where all the health professionals – doctors, dentists, psychologists, podiatrists, physiotherapists etc have rooms. I now have sessions twice a week. We were amazed at the speed and efficiency of And  it all. My physio entertains me by talking about his love of Arsenal football team whilst working on my arms and legs, particularly my dodgy left arm. He tests my balance in various ways like holding my hands as I stand on one leg with the other raised and by pushing me backwards and forwards and sideways as I stand with my eyes closed. He keeps telling me that my balance is very good which cheers me. I do lots of stretches. I have homework that includes boxing type movements. I step on wall bars, I do squats, I do arm exercises on pulleys and I ride on an exercise bike. He noticed that I was walking with one shoulder raised a bit higher than the other and I have been trying to correct this. I was totally unaware of this. Last night he commented that it was improving after he watched me walking and I felt strangely elated!
I am also comforted by the number of new developments I have read lately in Parkinson’s Disease research into treatments and a cure. This article sums them up: http://brainblogger.com/2015/07/29/novel-breakthroughs-in-parkinsons-disease-treatment/

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.
• 

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

Is there an artist in there?

I’ve been watching the Big Painting Challenge on BBC and I feel inspired to have a go myself and see if, like some other sufferers, my Parkinson’s medicine has helped reveal my untapped artistic abilities. I have read that this phenomenon seems to be related to dopamine-enhancing medication.

I’ve always liked arts and crafts. I’ve even won a prize in a Brook Bond tea competition many years ago. It was a book by Adrian Hill who was then doing a painting programme on TV called ‘Sketch Club’ – that shows how long ago it was! Interestingly I have just read that it was Hill who apparently coined the term “art therapy” in 1942. He found that art seemed to help to take a patient’s mind off their illness or injuries and to release their mental distress. He worked to promote art therapy, eventually becoming president of the British Association of Art Therapists, founded in 1964.

I studied art at A level at school but it was not a subject they encouraged. A handful of us started but it was only me who finished the course which really was boring and disappointing. My memories are now very distant but the only paint medium I remember using was water colour. I remember doing endless messy charcoal drawings and lots of calligraphy. It was in the days when teachers were allowed to smoke in schools and the art teacher, a grumpy old woman, would sit in a yellow, smoky haze as she read the paper in front of a two bar electric fire. Both of us would have one eye on the clock!

I thought I’d have a go at acrylic painting now because the TV programme kept saying that it was a much more “forgiving medium” and I certainly need that. I’ve never fancied acrylics before mainly because it makes me think of nylon and polyester clothes. But now I’m the proud owner of a beautiful boxed set of paint, pencils, brushes another artistic delights’ bought on a recent UK trip together with two ‘Teach Yourself’ books from a charity shop. Nowadays there is so much useful advice, tutorials and ideas freely available on the Internet that I feel raring to go!

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!

More mellow than bellow

In 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!

Bottles of sunshine

Just 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.

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/

Auntie’s advice

We’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

I 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!