Parkinson’s Disease can’t be ignored.
It is now over ten years since my diagnosis with Parkinson’s Disease (PD) and almost three years since I had life changing Deep Brain Stimulation (DBS) surgery. The six-hour procedure inserted two needle fine electrodes deep into that part of my brain that no longer produces the chemical dopamine so essential, as a neurotransmitter, to the proper functioning of our bodies. To complete the operation those electrodes were then connected to a rechargeable pacemaker battery near my collarbone. Since then the circuit has run a current continuously through my brain which has provided relief from many of the major symptoms especially the movement disorder that is at the heart of Parkinson’s Disease.
The improvement has been dramatic almost miraculous, and I regularly give pause, often when I am charging the battery every Sunday morning, to give thanks for the clever researchers, medical appliance manufacturers and the clinicians who developed the procedure. Their collective skills are remarkable. Their work has with some continued medication enabled me to largely ignore the fact that I have PD.
The tell-tale tremor only occasionally reminds me. I can walk normally, and the uncontrolled limb movement or dyskinesia is a thing of the past as is the mind-numbing fatigue. I can now largely avoid thinking about the disease, which is a rare gift, considering how much it dominated my life prior to the surgery. I often wake and go through my day free from the thought I have the debilitating condition that impacts on 80,000 Australians or 1 in every 100 over 60.
Over the past three years the DBS has especially relieved the gross motor challenges of life; walking, turning over in bed, getting out of the car, climbing stairs. When these which used to be so problematic can be done almost normally and without thinking, you tend to forget the all-encompassing nature of Parkinson’s.
DBS is not suitable for every person living with PD and some, understandably, refuse to risk the brain operation. And it is not a cure all. I have noticed a continued decline in capacity over the years since my surgery, often the small things, often the very personal As if having done its best to destroy the major elements it is now more insidious in its intent, turning its attention to the more personal such my communication skills.
So, my handwriting has become increasingly illegible as I lose fine motor control, either a spider crawling across the page or a confusing jumble of lines. For the same reason key board skills have deserted me. My voice requires daily exercises and without it wavers and fades and becomes either strained or unable to be understood.
The muscle deficiencies that result in this strained or strangely feeble voice also result in problems swallowing food and liquid. The paroxysm of coughing when liquid goes down the wrong way is often public and embarrassing. I presume it will be one of the sounds that accompanies my last moments on this journey with PD. It is, however, the three-monthly injections of Botox in my eyelids to counter the heaviness that keep my eyes closed without considerable effort, that seems a cruel and unusual punishment.
I have also started to fall at the most inopportune moments; stepping off the kerb in the early morning light or most recently standing on a stool to reach a high cupboard, something I would have done with ease in the past. I remember thinking as I fell, how stupid I would feel telling the doctor in the hospital where I wrongly thought it would end. Perhaps such catastrophic consequences still await. At the moment the clumsiness, dropping full glasses of red wine or bumping into things can, be excused as carelessness.
But all of this is bearable, annoying, perhaps unpleasant but generally not public and not really life limiting. I know it but few others notice. But the anxiety and depression that has developed over the past few months after a break of ten years is different. Apparently up to 40% of PD sufferers live with depression at some stage and it is an unsought jackpot I could do without. The numbing apathy, spiralling hopelessness, catastrophizing and the overwhelming and aching sadness is difficult to put into words. At least I know when it is upon me for it is often at these times that the tremor in my lower body breaks through the controls applied by the DBS.
So, what provides comfort?Work, physical exercise, restorative sleep, often in afternoon naps, the music of Vaughn Williams, the love of family and friends.I used to say my faith, but the old habits and truisms provide less comfort than they used to.I do not know what the future holds.But hope springs eternal.There eventually will be a cure and each passing dawn brings that blessed day closer.
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