I have never written a blog, however I can give you a brief synopsis of my situation. Parkinson’s was not a total surprise to me but it was a shock. My mother was the oldest of seven children – her mother had it and my mother’s youngest brother (now in his 80s and still alive) also has it. The disease seems to have done a zigzag which is why I was shocked. I am the only one of my generation of the family to have it. I thought that my first symptom was in November 2014 when my right hand started to shake – all sorts of options were suggested by doctors etc (thyroid for example).
I actually knew what was happening because I had seen it with my grandmother. However, shortly before that, I was on the platform of a tube station when the ground seemed to go peculiar and I asked the woman next to me if it had moved – there were no trains around I would hasten to add. She looked at me as if I was completely bonkers! I now know it was an outward sign of my increasingly poor balance problems. Up to diagnosis, BUPA was happy to cover all investigations and, in March last year, I had a Datscan which, as you know is the nearest thing to an actual diagnosis a sufferer can have. This showed that I have probably had the disease for around 10 years – now that was an even bigger shock! At this stage, I reverted to the NHS and I have been extremely lucky – I am a patient at the Parkinson’s Unit at Edgware Hospital in north London (just six miles from my home) and this is currently, I believe, the only dedicated unit in the country. My initial medication was Rasagaline, shortly followed by Mirapexin.
However, in October, my symptoms took a significant downturn and I am now on Sinemet. As I have been walking well and am “only” 59, my specialist was loathe to do this, but there seemed little choice. I now find that I am worsening again – still walking but with difficulty. However, I do my very best to remain cheerful – I am not by nature a miserable person anyway, but we all know how the “blue periods” wash over us. Before I forget, I would point out that the worst symptom I have had since the hand tremor started is an internal tremor – this started in the left side of my head and is now virtually all down my left side and creeping across to the other side, slowly but surely. The medication does help this to some extent, but it has been such a hard thing to live with and, because it can’t be seen, people really can’t see a great deal wrong with me – other than a walking stick and now the slowing downi n my walking. I don’t know if anybody would be interested in any of this but am happy to “chat” with anybody and also to attend social PD gatherings as long as they are not a million miles away.
I would conclude by saying I have a good husband but he has to work of course and a fantastic sister who doesn’t live nearby but has been my rock!
Best wishes to you,