Leading Up to a Diagnosis

I was diagnosed in 2009, when I was 36 years old. This section is intended to share my story of the lead up to that day, and provide a retrospective analysis, based on all that I’ve learned in the meantime. I hope that this will be most helpful for people newly diagnosed with Parkinson’s Disease and other chronic illnesses, and their families, by providing an informed and independent perspective from the inside.

As is usually the case with chronic illness, my actual descent into disease begins much earlier than diagnosis, so it’s not clear when or how my disease actually began. I do know I was a very stressful (self-stressing) 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 very obvious 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 travelled 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 that bad work practice, and assumed I could rectify it.

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 UK National Health System’s 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, 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.