This year, to mark Parkinson’s Awareness month, I wanted to focus on Parkinson’s Disease and what it’s brought into my life. I’m dubbing this my “Greatest Hits of PD” (emphasis on the “hits”!). Like the old 45 rpm records, sometimes the “hit” was on Side A – a bouncy, upbeat positive single that rose quickly on the charts. Sometimes the “hit” came on the darker side – the hidden gem – Side B – the unexpected “hit” that you just couldn’t escape. Before long , it too rose to meteoric proportions.
For the month of April, I’ve been reviewing each of these “hits” – one for every day of the month. They are presented as the “Top 30” but are in no particular order. To save readers a daily deluge, I’ve been spinning a weeks worth of entries in each blog posting and this marks the final posting! Hope you enjoy the ride and thanks for tuning in!
The Top 30 – Hits
# 9- Cognitive dysfunction – Whenever I think of this, I have an image of a Michael Palin character in a Monty Python skit who repeatedly declares “My brain hurts! My brain hurts!”. While my brain doesn’t exactly hurt, I certainly feel that I have had some minor impairment in my processing speed – some difficulty forming what I want to say or responding as quickly as I once did. I find it more stressful to do any kind of multi-tasking. I occasionally forget things that I never would have before. Though I still vividly remember Michael Palin!
# 8 – Drugs and the Duodopa Pump – I once prided myself on the lack of medicine that I took. I didn’t want to introduce any additional chemicals into my body. That was before being diagnosed with this chronic condition. Somewhat reluctantly, I put my fate in the hands of my doctors and took whatever was prescribed. Most recently, I took part in a clinical trial for duodopa and have been “on the pump” for the last 4 years. This has been a mixed blessing – on the one hand, it has resulted in a more even day (less off-time) and calmed dyskinesis, but the sheer size and weight of the pump have been an albatross on my back – weighing me down physically and psychologically. There are few other options for me at present, besides Deep Brain Stimulation surgery, and I’m not prepared to undertake such as invasive procedure.
# 7 – Worldwide connection -through my blog, and various on-line support groups, I’ve been connecting with people around the world (as language permits). I know that in the era of internet, this is in and of itself, of little meaning yet , when you can connect with others facing similar issues, it does make a difference.
# 6 – Health care team – I am fortunate to be in Canada with our socialized medical system and a decent private drug plan (HINT: Canada needs Pharmacare) . Some of the best in the PD health care community practise in Toronto and I have been fortunate to benefit from their services. Neurologists, other specialists, nursing teams, fellows a interns, researchers, therapists, and office staff have all been of assistance through the years and I’d like to extend to them once again my appreciation.
# 5 – Smell – or rather the lack thereof. For many people with Parkinson’s, sense of smell is one of the first things to go. In fact, for many, it comes as a precursor to their diagnosis of PD. Such was the case for me. I can recall not a total loss of sense of smell but definitely a deterioration through the years leading up to my diagnosis. Some 15 years later, it’s pretty much a done deal. I can drive by a freshly fertilized farmer’s field and feel like I’m at a florist’s shop. Or I can walk through a farmer’s market and it might just as well be a sterilized hospital ward for all my nose knows! I miss smelling coffee and food the most!
# 4 – Crying – I’ve admitted it. I’m a cry baby. While it my be de rigueur to be a sensitive male these days, PD has pushed me to the other end of the scale. I get so emotional about the slightest things! My children are embarrassed to be around me when I listen to music or watch a movie. I tear up pretty easily . I’m not sure why this is and I personally am not embarrassed by it, but it pretty much rules me out of any macho man competitions in this life.
# 3 – Depression – almost 2 years ago, I wrote in my blog about my struggle with depression. I said “I’m feeling exceptionally tired and challenged by the activities of daily living. I’m struggling with my roles; with a discouraging sense of self. My motivation to accomplish things all too often seems to be waning…”. I can definitively say these feelings are not completely out of site – they’re still in my rear view mirror. I’m hoping the warning in that mirror (the one about “objects may be closer than they appear”) doesn’t apply. I am, at least in the present, in a better state than this.
# 2 – Family – As PD has progressed, my family has been even more vital to me. I can’t begin to describe what a difference it makes to have people in your corner – carrying about you, wanting to help, looking to offer support. It may be a cliche but it’s one that rings true – nothing can replace the family.
# 1 – This blog – I enjoy writing and I’ve certainly enjoyed most of the last 3 years exploring various aspects of living with PD in this blog. While I am sometimes disappointed that it has not attracted a larger audience, I understand that this is at least in part my own fault. First, I have chosen to try to present a more realistic look at living with PD. Sometimes that means discussing darker or unpleasant aspects of the disease. Not everyone wants to explore that side and what you tend to see are blogs that accentuate the positive – they are full of rainbows, unicorns, and feel-good pleasantries. That’s not my blog. Second, I’ve found it difficult to get referrals to my blog. One of the biggest Foundations in PD research won’t link up with my blog as there are a few pieces that could be perceived as critical of their work (fairly, I believe, but still critical). They publish links to summer students ramblings and interns blogs with thoughts of PD but won’t share links to any of my articles. They weren’t even interested in an article I wrote that was in Canada’s national newspaper! It’s unfortunate.
Nevertheless, there have been very many good things that have come from this blog. I have received positive comments from so many readers and my spirit has been buoyed by sharing my experiences. With virtually every new entry, I hear from at least 4 or 5 new people who have been touched in one way or another by the piece. I’ve met new friends through this and learned a lot in the process. I’ve been beaten up only once so far on line so that’s a pretty good track record as well.
I am not sure how much longer I’ll continue with this blog. I’d like to explore some other vehicles for my writing. For now though, the trip continues. Thanks for joining me on the ride so far and I look forward to the trip ahead!
All good things,