A blog post from a good friend who was diagnosed with Parkinson's back in 2012. They are an inspiration and one of the funniest people you could ever have the pleasure of meeting.
With 40+ potential symptoms, Parkinson’s is the pick n mix of all conditions. It’s almost guaranteed that no two people with Parkinson’s will have the same symptoms. The main symptoms are:
· Involuntary movement (tremoring)
· Slowness of movement
· Muscle stiffness
I will try and explain how having Parkinson’s has affected me since I was diagnosed in 2012.
Pre-diagnosis
I believe it all started in 2009 with what some would say is more one of my character traits than a symptom – a pain in the neck. Nothing would shift the pain. Then during 2010, things got pretty wild when I was diagnosed with osteoarthritis (knees) and rheumatoid arthritis (other joints). At the time I was walking like an old man. On two occasions I was told I looked “s***”. Early on after my diagnosis, on a couple of occasions, I had tremored violently at night. However, over the next couple of years, the rheumatoid arthritis was (and still is) contained.
In early 2012 I fell into a deep bout of depression which manifested itself by becoming apathetic – everything I did was questioned. What was the point of anything? The depression coincided with extreme fatigue (a feature of rheumatoid arthritis). I hid this well, with my kids, family, friends and work colleagues being none the wiser (except for my constant moaning about being tired).
At one appointment I told a young rheumatologist that I found bruises on my left leg and I realized I repeatedly kept hitting desks when I was turning left in the office. She carried out a few reflex tests and it was clear that responses for my left side were noticeably slower. So, I was referred to see a neurologist. Coincidentally, I was due to see a senior neurologist at a teaching hospital to discount another condition. With a room full of trainee doctors the suspected condition was discounted but the neurologist asked if I could walk up and down the room and I could hear him say to the trainee doctors that my left arm was not swaying. On reflection it was clear that the neurologist had identified Parkinson’s.
Diagnosis
Parkinson’s is famously difficult to diagnosis, however, in my case, the neurologist later told me that he identified Parkinson’s as soon as I walked in the room. He went on to inform me that it was due to my lack of facial expression. As a big Jim Carrey fan, I took great exception to this! After undertaking various tests Parkinson’s was confirmed in September 2012.
Post-diagnosis
Emotionally, I thought I was quite a strong person. Post diagnosis I would find myself tearful for no apparent reason. On occasions it was ‘woe is me’; but mainly it was about uncertainty. How will my condition develop? How will I be able to support my children? Will it affect my ability to work? Due to the unpredictability of Parkinson’s, I soon realized the best thing for me was to roll with things as much as possible. Regardless of any diagnosis, illness is a deeply personal thing and how people react can be very different both emotionally and physically. For instance, for me laughing at Parkinson’s has always worked for me and sitting in group sessions doesn’t. However, I still listen to the excellent ‘Movers and Shakers’ podcast and keep updated about developments in treatment.
My biggest mistake
For a couple of years, the number of people who knew about my Parkinson’s was extremely limited. I realized that carrying around all this information about my condition was affecting my mental health. My ‘Damascus’ moment was when I read a truly touching article from someone diagnosed with early onset Parkinson’s was posted on the Michael J Fox Foundation web site. I wrote to the author explaining that I was bottling-up all this information and it was going to make my head explode. Very generously he responded with excellent but simple advice. Tell people in the format that is easiest and best suits me. In the early days of 2014, I wrote a long and frank post on Facebook. The response was completely positive and a massive relief.
Today
There’s no getting away from it, the older I get, the slower I am, brain fog occurs and searching for the right word can be fun, but I’m still rolling with it.
Comments