It is over two years since I last reported on my condition, which was diagnosed in 2012. The disease, predictably, has remorselessly tightened its grip. I will try to demonstrate that by dealing with various features of the disease.
The good news is that I have finally met the relevant professionals from the Neurology department at the John Radcliffe hospital in Oxford. The neurologist is Dr. Klein and the Parkinson’s nurse is best known as Mabel. I am now due to have a meeting with them at six monthly intervals. So, the nurse will see me six months after the neurologist and the Neurologist six months later.
Dr Klein was helpful. He thought I had had the disease for a few years before I was diagnosed. He based this on the history I gave him.
There were earlier signs, such as shuffling and falling out of bed pre-diagnosis, which in retrospect clearly marked the presence of Parkinson’s.
The good news is that Dr Klein therefore thought that my condition was declining at a modest rate.
Later, I saw Mabel, the Parkinson’s nurse. Full of energy and good nature, Mabel soon demonstrated her expertise. Her main decisions were to increase the co-beneldopa and to arrange for me to see a specialist about my arthritis in both hands. This is very painful and limiting. It is probably not linked to PD.
If my grip is the most painful aspect, then freezing is the most problematic. I find myself stuck at random when, for example I am in a crowded shop. My shopping trips are therefore reduced and this creates a diminution in my activities.
One area which has maintained the improvement from the last blog is sleeping. The problem with insomnia is that it can be self fulfilling. So, when we cannot get to sleep, we try harder, without success. When I wake in the night, to answer the threat from my bladder, I put on BBC News. I half listen to it but usually I fall asleep within ten minutes.
I have sold my car. I was doing so little mileage that I was constantly having to call the garage to come and put new life into the battery. The bus service in Oxford is superb and free for geriatrics like me.
I still have a driving licence but I do not enjoy driving on the open road.
I still use my personal trainer once or twice a week. I think that over the last six months my performance levels have dropped but I persevere. Some days, my energy levels are low and this reflects in my performance. The energy levels may well be linked to the taking of my tablets, particularly co-beneldopa. I now take this four times a day with a further, slow release version to cover me during the night.
Historically, I have been poor at taking the co-beneldolpa, forgetting the midday tablet. It appears that this may account for my low energy levels. At the urging of the Parkinson’s nurse I am trying to stick to a strict timetable for tablet taking and to measure the results.
One problem I have always had is that sometimes I simply can’t remember whether I took a tablet, say, ten minutes earlier! To combat this, I am trying a variety of pill dispensers which should help to erase this problem. I will report on their efficacy in due course.
One problem which has come with PD is clothing. I have mentioned before the problem with buttons. Shoelaces are just as difficult, and so is buttoning up trousers. Consequently, my keen desire to wear good quality, well-fitted clothes has gone. To say that I now dress very casually is a euphemism!
There is a market for quality clothes for the less able and I know that Spring Chicken is looking at this.
I commented some time ago when reporting on Parkinson’s Awareness Week that many PD sufferers were unhappy to go shopping because of the attitude of others. At the time I did not have those worries. Now, though, I find myself much more reluctant to go shopping because I find it difficult to have people invading my personal space. I become a little disorientated in busy places. I must reverse this trend.
On a brighter note, I took my 19 year old twin boys on a Caribbean cruise over Christmas and New Year and we had a good time.
The constant slight motion of the ship was a challenge, but we won!
The extent of the difficulty I have with my hands was highlighted on this trip. Our excellent waiter spotted my struggles with food and he made sure that he cut up my meal so that I could cope,
We are having a holiday together this summer on dry land. The boys are great company and very attentive to my needs
In the early days of this illness I studiously avoided learning about PD. I knew it was degenerative and I saw no value in peering into a gloomy future. As time has passed, I have found myself learning much more and testing other therapies to see what they offered. I am presently being guided through the Alexander Technique. It is early days yet but I will report back
Finally, I must mention mood. I remain genuinely upbeat and happy. Given my pre-PD nature, I find this a bit of a shock.