Losing Myself: Gary’s Prelude
Sometime in 2009 to July 2015
My name is Gary Sharpe. In 2009 (the exact date escapes me) I was diagnosed with Early Onset Parkinson’s Disease. This is the story of how I met Deb Helfrich and how, together, we began to overcome the condition and reverse my symptoms.
Like everyone with Parkinson’s, the story begins much earlier than diagnosis. It’s not clear when or how my descent into disease began. I was a very stressful person and I strongly believe this was a major contributing factor. I expected far too much of myself in my life and my career and forgot to enjoy the moment - and life in general. I also suffered from chronic irritable bowel syndrome for many years, and while it is not absolutely clear whether this is related, there is now a lot of research suggesting that PD is indeed connected to gut and digestive issues, or that these may even be a causal effect. My gut feeling, if you will forgive the pun, is that there is a strong connection between these three factors of stress, IBS and PD onset.
When did I first notice? Again, it is hard to tell, as anxiety and depression are also strongly correlated with PD. Were these the first signs or were these causal? If there is a connection to depressive states, then it notably began in my teenage years. However, the first physical signs became apparent in my mid-thirties. It started in my left hand. Simply put, my fingers became hard to use, much as if I had been out playing in the snow with no gloves on for a time. Looking back, the first classic sign of PD was when my handwriting became smaller and smaller. From my hand, the stiffness traveled up my left arm and there began a time of intense pain in my left shoulder.
At that time, as now, my work was heavily orientated to sitting in front of a computer. Like many, back then, I knowingly disregarded the importance of posture and coffee breaks. Once more, the causal relationships are not clear, but this strain on my body could be a contributing factor. At the time, I put the pain simply down to bad work practice.
This pain in my shoulder eventually became so bad that I went to my doctor, who diagnosed me with frozen shoulder, prescribed me pain killers and put me on the national health systems waiting list for physiotherapy, which would be many weeks away. The pain killers made me sick, the problem only got worse and worse and eventually I could not wait any longer, especially because my right side had started to stiffen up and become painful, too.
I decided - or the intensity of the pain decided for me - to pay for private physiotherapy. The therapist was good and did her best, and whilst visiting once or twice a week, I did get some relief, but it never lasted. Within about six weeks I had started to shuffle when I walked – another classic sign. The physiotherapist became concerned, she threw up her hands and sent me back to the doctors with a letter. Perhaps luckily, I got to see a junior doctor in training who, unsure of himself, then referred me both to a neurologist and muscular-skeletal expert.
Both independently diagnosed me with PD and so I was put in the care of the neurologist. This is when things went from bad to worse, looking back. After the initial diagnosis with an underling, an appointment was made for few weeks later with the neurologist. That appointment still haunts me. Remember, I knew nothing at all about PD at the time and I made no effort to read up on it, because I was relying on the specialist to give me the expert information I needed to answer all my questions. I met that particular neurologist only once. In the half hour I sat in the office, I was told firstly that the MRI scan indicated that I had something called Parkinson’s Plus – a virulent form of the disease which might not respond to drugs. This turned out to be incorrect.
It is my recollection that, still not armed with much information, I was asked to make a choice between starting drug therapy or being put into the care of PD specialist neurologist at my local hospital. Still desperately asking for clarifications and more information, the appointment ended when the neurologist said, putting a hand on a stack of case notes on the desk, “I’m going to have to ask you to leave now, because I have this pile of patients to get through”. You will understand why these words have stayed with me verbatim. You will understand the long term damage this did to me, too, I hope, and why what happens at diagnosis of PD, in my view, is in dire need of a system wide agreed upon set of best practice guidelines.
The story of my early care from there is mixed. A local doctor was both very supportive, but also misinformed me unintentionally due to a lack of knowledge of the condition. I was effectively lead to believe, being diagnosed in my early thirties, that I needed to grieve for the second half of my life which I had now lost to Parkinson’s. However, the doctor was also very good at getting me into see another muscular-skeletal person I had researched, who was an expert on thoracic outlet syndrome – it turned out I had two issues in one. Again, any cause and effect is unclear, but the intense pain in my shoulders was not due to PD inherently, but to this issue with trapped nerves. That expert was superb and did everything he could to avoid surgery. Thankfully, good physiotherapy cleared that part of the problem up, and perhaps gave me the exercise strategies which allowed me to correct my posture easily later in the story.
However, the people who tried to save me from sinking into deepest depression were the local Parkinson’s Nurse Specialists, who gave me a much brighter outlook and assured me all was not lost.
Unfortunately, the narrative had been set by the events around my diagnosis and, due to exactly the wrong environmental conditions, I lost myself to the darkness still.
Six years passed. I existed in a kind of half-life. I have nothing to say about that time. Not because I don’t want to talk about it, but because I have literally nothing to tell you.
I was a ghost.
We take up the story again in late 2015...
An excerpt from the introduction to our new e-book: