Parkinson's Disease and me

My blog about my experience with Parkinson's Disease

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 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.




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


What language barrier?

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

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

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

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

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

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Auntie’s advice

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

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


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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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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