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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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

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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/

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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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Nice one

imageLife 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!

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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.

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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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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.
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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.

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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
http://www.parkinson.ca/site/c.kgLNIWODKpF/b.8015959/k.DFE1/Exercise.htm
To go to pdf click on ‘resource’

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Exercise – the best medicine

The neurologist said exercise was so very important so if I’m going to have a good life then exercise it will be for me from now on!

The first thing I did was to get out my mountain bike which I had not ridden for several years.  Now every dry morning I go out for a ride, often with a neighbour.  I’ve already become quite good at it despite our hilly terrain and it makes me feel so much better.  An additional bonus is that I have met new friends in a neighbouring village.  Previously speeding by in the car we would not have met.

Then there’s the table tennis for rainy days.  We have always played table tennis.  I am competitive and hate to lose and my partner is so much better than me.  Previously this has made me a very bad-tempered player prone to foul language and aiming balls at my opponent’s head but nowadays I seem to have changed for the better (maybe the medicine has a calming effect?).  I have now actually won two games – who would have thought it?

I also go to what they call ‘gym’ in the village hall.  I was worried in case I couldn’t keep up but the other participants are mainly grannies like myself.  It is surprisingly vigorous  and at the end the good effects are spoiled for most people who munch on lemon squash and chocolate biscuits!

This week I have enrolled for aqua gym and I really enjoyed it.  The water gives it a whole new dimension.

Other than that I continue to do a lot of walking and gardening and at this particulate time combing the woods for mushrooms.

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