Continuing the discussion from Some words for those recently diagnosed:
The rhythm of life
I consider my biggest fear as I age, is the fear of losing my impartiality. Of having a closed mind.
A fear of being Impervious to new ideas concepts and theories.
For me at least that would be an alarm, a signal or indication that I had finally reached old age.
A point in my life where I believe that I have seen and experienced everything in this world and sadly, where I cannot be convinced to consider the alternative.
A day when I don’t awaken with an almost childish inquisitiveness and an optimistic thirst for learning
Surely that would be the final stage in our intellectual journey.
The last stop at the station known as” Grim Reaper’s Junction.” That pitchfork in my path.
I am also blissfully aware that if you long for something for a period of time. If you wish almost plead to the heavens for a miracle or change in one’s circumstances If you are able to provide reinforcement of your positivity you can sometimes manifest that revolution deep within you.
This is surely a good thing?
I know only too well having had Parkinson’s for nearly 6 years, about that longing, living in hope for something, anything that will change or provide the alternative to modern science and help alleviate modify or cure my current condition.
My difficulty being how to stay impartial, objective and constructive in my reasoning using a brain that is considered to be faulty, providing stops and check to my thinking through the smog of mind-bending medications.
A mind so possibly starved of dopamine that psychosis might be within and lurking, scuppering my objective rational, my positivity despite the shaking and the falling and the pain and chronic insomnia, still maintaining my naive optimistic view that today might see my symptoms improve because of a rhythmic pulsating device secured to my feet, legs, arms and ankles or anywhere else I might wish to wear it in the comfort of my home
Sir Paul McCartney wrote the words” When I find myself in times of trouble Mother Mary comes to me” Recounting the loss of his mother at a young age and the healing power of a dream in which he was reunited with her and the resultant song “Let it be.”
No doubt making millions of pounds and his “Times of trouble” fewer and more comfortable.
Surely being close to one’s mother is the ultimate comfort.
From a personal perspective and in a bid to help my difficulty walking, freezing, stumbling shuffling etc, I have purchased a number of devices, aides and apps to help combat these embarrassing, socially stifling, potentially life-threatening symptoms which escape from the Pandora’s Box that is Parkinson’s.
Many of these rhythmic devices claim to be based on the sound a child might hear of its mother’s heartbeat whilst in the womb or the sound of a horse drawn carriage rhythmically moving along cobblestones.
In my own experience and through wearing several of these devices I have come to the opinion that many contain potentially harmful substances allegedly!
These being, Placebo, False hope, Fairy dust and Desperation.
Do not all those who have Parkinson long for their Robinson Crusoe moment? A ship off the island? A rescuer?
This might be an email that says you are now cured, there is no need to grapple with, to suffer, nor to endure those slings the arrows that Mr Parkinson has decided to aim at you in the small hours.
On the other hand, I have to concede that many of my brothers and sisters in the PD community have reported Improvements in their wellbeing and symptoms as an apparent result of wearing, using and believing in the power of such devices.
To those brothers and sisters, I salute you because you are the ones who are brave enough to venture beyond the science, to seek outside established science to go “Off piste” in a quest for a cure, a reduction in symptoms or a few drugs to help you sleep all night.
They defy the constraints of their illness and rather than wait for a rescue ship, they take a plunge and swim for freedom from Dr Parkinson’s vice like grip thinking very much out of the box
They abandon modern science with an open mind and open heart, they engage the power of pulse and vibration to quell this anathema
Michael J Fox once simplified our utopia, our ultimate goal and forbidden wish by stating that Parkinson’s was problematical, so there appears to be a problem, and everyone concerned is pro-actively looking for a solution, therefore if we all look hard enough surely a solution must be found,
Simplistic but somehow inspiring and whilst following this type of comforting, almost “Hot chocolate at bedtime, warm snuggle blanket” philosophy, we perhaps lose sight of the fact that many victims of this curse spend numerous sleepless nights playing poker with the devil, with raging insomnia that can last several nights and days.
We perhaps forget that according to science, the alpha synuclein in the very base of the brain has been malfunctioning for over 20 years before Parkinson’s decides to effectively come out of the closet, and that this part of the brain because of its complexity and positioning becomes difficult to fully understand.
Therefore, my final plea to the manufacturers of these rhythmic dancing, ticking buzzing squeaking, throbbing pulsating, black magic accessories is to show the PD community the science
To perhaps concede that the only way some of these devices might sound like my mother’s heartbeat would be if my mother was perhaps a duck and I would therefore be warmly encased within an egg.
In conclusion, I make no apologies for my brutal tone.
I can only give my opinion, totally free of commercial bias, marketing rhetoric, or a belief that some higher power is attempting to communicate with me through my wrist feet shoulders mimicking the long since departed heartbeats of my dear mother, who thankfully passed away aged 83 totally unaware that her first born child was a victim of the Shaking palsy, suspecting that I was functioning alcoholic instead
This, I decided would cause her to worry less and perhaps carried less stigma.
My sincere best wishes to you all
Chris Duffy