Having difficulty in typing, family and friends have been helping me out. So it may not be my fingers on the keys now days, but these are still my thoughts, my words and my personal experience that I’m sharing with you. If the reality of what I’m living with is too hard for you to digest, I don’t blame you for not reading on. Why am I writing in such a brutally honest manner? It certainly isn’t to upset or frighten any fellow sufferer. My hope is to reach the powers that be, those in R&D or running clinical trials, scientists, doctors and medical students. I want there to be a greater understanding of what it really means to suffer with Parkinson’s disease.
As if living with Gaucher and Parkinson’s disease isn’t enough excitement for this household, throw into the mix a slipped disk and you may have a recipe for disaster. A golden rule regarding a slipped disk, is bed-rest. A slipped disk usually entails not being able to stand, walk or even sit, the only remaining option is lying down in bed. After a lot of painful slow squirming, finding a position that is relatively pain free, with pillows strategically positioned, anyone in their right mind would be extremely reluctant to move. However having Parkinson’s, remaining still in bed proves to be a tall order.
So here lies the problem; Gaucher disease, making joints and bones painful, a slipped disk that requires bed-rest and little or no movement, and lastly but by no means least, Parkinson’s, with a myriad of symptoms that exacerbate and delay the recovery of a slipped disk. To allow my back to heal, lying in bed several days, being immobile is like giving Parkinson’s the green light to go ahead, which is all it needs to drag anyone it can, down a slippery path at an alarming speed.
The human body is like a finely tuned machine and nothing short of miraculous in design, so long as one remains healthy. Unfortunately, when serious health issues arise, the delicate balance is upset, which can begin a chain reaction of sorts, sending everything out of whack.This is where the human spirit, strength of character, determination or sheer stubbornness, whatever you may wish to call it, is put to the test, for I believe this is what keeps me from giving up and shutting down.
Some years ago, my voice was recorded with the purpose of being used for a mannequin attached to an ultrasound simulator teaching aid. I had to read several prepared sentences, one of which seems highly inappropriate regarding my situation today. So should you ever be in a medical training facility and hear a woman’s voice with a strong British accent coming out of an ultrasound simulator saying: “system shutting down”, yes, that’ll be me!