My first blog on life with Parkinson’s disease (PD) for wearingoff.com was published in June 2010, nearly four years ago and this will be my 100th blog published here. I read back through all these blogs this morning, before writing this latest offering, to see if I could establish any trends or significant changes in my PD world since I started. Probably the most obvious and inevitable transition of change has been the progress of my illness, although this has been masked to some extent by increases in my medication. There are, however, areas where medication helps me very little, or not at all, such as food digestion, fatigue and a range of autonomic symptoms that I will not bore you with. These are symptoms of PD that were barely acknowledged by the medical world when I was diagnosed 10 years ago, and are now generically referred to as non-motor symptoms. There is still very little research on these aspects of PD, and almost no specific medications, but progress has, and still is, being made. Until recently, my PD medication has controlled my motor symptoms reasonably well. It takes about 45 minutes for my first dose to work each morning, but that usually gives me about 2 hours of acceptable physical functioning until the effects wear off. I get about 6 hours a day when I am able to have any sort of normal life, although any walking is restricted to 15 minutes maximum. At all times, however, strenuous activity has to be avoided or extreme fatigue will descend with very little warning. But without my medication I would be immobile all day, every day.
I am now, however, close to the maximum dosage levels for my PD drugs, and I face some tough decisions over the next couple of years. Dyskinesia has already reared its ugly head, albeit in a mild and random way so far. The only option open to me is an operation called ‘Deep Brain Stimulation’ (DBS), and that is only if I am deemed suitable for this radical procedure. The operation takes around 8 hours and involves a hole being drilled into my skull and electrodes inserted into the area of my brain most affected by PD. These are then wired to a battery pack inserted under the skin in my chest. This is usually performed while the patient is conscious. Since I started writing these blogs three of my close PD friends have undergone this procedure, and two more are currently being assessed for suitability. It is not a cure but it buys some time. The effect of the stimulation of the brain via the electrodes is to allow the patient’s medication to be reduced, which tends to ease dyskinesia whilst retaining some level of physical functioning. It is impossible to be specific about the outcome: everyone responds differently; but with my three friends who have already undergone this procedure, and two others under serious consideration, I have a reasonable visibility of both the risks and possible rewards. It would be an easier decision if it was going to ease my non-motor symptoms too, but sadly it will not; these will just continue to get steadily worse.
With my medication struggling to contain my symptoms, I may delay the start of an MA in History planned for October. My BA ends the in first week of June, and my wife and I are planning a celebratory cruise to the Adriatic, via the Mediterranean, in the summer, where I can hopefully relax and reflect on what to do next. In June these Blogs end as well as my BA in English and History. By autumn I need a plan that will stimulate me mentally, engage me socially and keep me from sinking into the mires of PD research again!
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