Parkinson's Disease and me

My blog about my experience with Parkinson's Disease

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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3rd visit to neurologist

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Yesterday I went back to see the neurologist.  In the two months since my last visit I had felt that the medicine was working well but just over a week ago I started to have a new sharp pain in the back of my head which feels linked to turning my head to the side.  It comes and goes.  Sometimes I can get rid of it by stretching exercise or moving around but I have also resorted to paracetamol.  It was particularly bad one day when it was bitterly cold.  It does not feel like a head ache but more muscular.  I started the usual awful Internet trawling searching for similar symptoms fearing my Parkinson’s is getting worse.  The neurologist watched me in his usual intense way and went through the usual tests.  I told him about my aches and pains.  I also have a pain in my right knee.  Admittedly that has been a recurring problem for years.  Then he surprised me by saying he was really pleased with how I’m doing and that he does not want to increase my low dose of Sifrol and that I need not see him for 6 months.  The best news I’ve had since my diagnosis.  He is not concerned about the head pain which is the result of neck stiffness and he suggests I look at my posture when riding my bike and keep taking the paracetamol if it helps.  Now I have something different to research on the Internet.  It is strange how much better I feel after his positive reaction. The pain has lessened and lost importance. He is always so very encouraging.  He says to phone or email if we are worried about anything before the next appointment.  As he says, medicine and exercise are equally vital in living with Parkinsons but I think he is becoming my third ingredient.  Now we are going to Nice for a little winter sunshine before Christmas.
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Second visit to neurologist

Yesterday I went back to the neurologist to see how I am doing on the medication.  It is now two months since my Parkinson’s diagnosis and I remembered just how bad I had felt that last time when I was so overwhelmingly anxious and depressed. Now I am so much happier and more positive. The medicine made the anxiety disappear within days.   I feel like I have been given back my life …. OK I am a bit slower and I get tired a bit more quickly but then my similarly aged friends all complain of these things too. We talked and he did some tests on my left hand.  My fingers shook more than they have been doing with the stress of his attention but I could see that I could do them better than before.  He said he thinks he can get me to work better still by increasing the medication by another 0.26mg. This will still be a very small dose of the medication and he wants to keep it as low as possible. He will see me again in two months. To review the situation. He seems so intent on helping me live life to the full and he did not rush through the appointment.  He said I must do everything I have always done and now I just have the all-important medicine and exercise to help me.  He again emphasised that exercise was crucial and also recommended tai chi.  He said ‘You are just like everyone else but it might take you a little bit more effort to do things.  You might be a little slower and you may be a bit tired from all your efforts but carry on as normal …. You can have a good life!’

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