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It was a shock being diagnosed with Parkinson’s disease (PD) at the young age of 47. In those early days, I was anxious to know what to expect and I spent hours scouring the Internet for symptoms and treatments. It was full of bewildering terms I did not understand like dyskinesia and others I dreaded like dribbling. Nowhere did the websites tell me that it was going to be easy. There were many uncertainties: how would PD progress?; what it was like living with PD?; and how long would I be able to work?
Until last week we had enjoyed one of the mildest winters on record where we live in the eastern part of the UK. However, around 10 days ago that all changed with the arrival of snow and below freezing air temperatures. We only had about 4 inches of snow but with the temperature rarely getting above freezing and at times as low as -8°C, the ice and snow have not yet gone away.
As regular followers of my blog will know, I take part in a pub quiz most Tuesday evenings with my wife and some friends. The maximum number of people per team is six and we usually have between four and six of us. Obviously the odds on winning are significantly reduced if there are six of us compared to say just four, although we did win narrowly with just four of us at the beginning of January. I am pleased to report that we won again last week.
My college break following the completion of the first semester of the first year of my degree course in English and History is drawing to a close and I return for lessons next week. My assignments and essays are all up-to-date and the preparatory reading for the fiction module, new for this semester, has also all been completed. We are due to have six lessons per week; there will be two lessons on political history, one lesson on introduction to history, two English lessons on fiction and one lesson on poetry. The lessons are one and half hours each so that is 9 hours of lessons per week in total. Whilst that may not sound like very much it will definitely be an extra challenge for me this semester.
Our local TV station announced that January 16th was Blue Monday, the gloomiest day of the year during the bleak post-Christmas slump. Luckily it was a good day for us. We had three appointments offering help and advice for Ivan with his Parkinson’s disease (PD) symptoms and me as his carer.
I have been a regular bus user since giving up driving four years ago when I fell asleep at the wheel of my car and ended up in a hedge. Daytime somnolence and night-time insomnia are symptoms of Parkinson’s Disease (PD) and incompatible with safe driving. Having surrendered my licence, I received the compensation of a free bus pass. Living near the centre of a large town, I can take full advantage its efficient bus network. A bus pass is one of the few perks of having PD.
I was recently asked by a new member of the Parkinson’s disease internet patients’ forum that I administer what tips I could give with respect to trying to manage the symptoms of PD. I pointed out that everyone with PD is different and there are obviously also issues concerning the stage that a patient’s illness is at. However, the member persisted so I attempted to relate what I do on a daily basis to make life easier for myself, bearing in mind that I was diagnosed nearly 8 years ago aged 51.
The 15th of December was my last day at college until 23rd January, so the first semester is now finished. I have had my first two essays returned, with feedback and grades, and to my amazement the grades on both were very good, and in fact way ahead of my expectations. The feedback was also good and I cannot emphasise enough what a huge relief this is to me.
We liked “Mr Shaky”, an elderly man who shuffled into to our classroom every Friday afternoon to collect money and stick stamps in our National Savings books. He had a crooked posture, his voice was croaky and we couldn’t take our eyes off his unsteady hands. Sticking the pretty green stamps of Princess Anne on the right page and in the right spot was hit-and-miss for him. At the age of 5, this was probably my first encounter with Parkinson’s disease (PD). Little did I know that it would become my unwelcome companion in future years.
Carers need breaks. According to the charity ‘Parkinson’s UK’, caring for someone with Parkinson’s disease (PD) can be particularly stressful. They mentioned this during Carers Week last June and based it on their survey of about 2,000 PD carers – so maybe people like us need breaks more than most carers!
In my case, the number of people urging me to take a break kept growing, but Ivan and I still resisted. It is hard when the person you are caring for is your dearest companion. We didn’t want to be apart and felt we would worry about each other if we were separated.
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Watch Jill explain her wearing off symptoms and benefits from medication change http://t.co/GMmLY3Pq
@wearingoff |
7 hours ago
Real PD people, real PD stories, all on 
