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’ll be reviewing each of these “hits” – one for every day of the month. While they are presented as the “Top 30” – they are in no particular order. To save readers a daily deluge, I’m spinning a weeks worth of entries in each blog posting. Hope you enjoy the ride and thanks for tuning in!
The Top 30 – Hits
#23 – Dystonia – this is a curling-up of my toes that happens every day to varying degrees. At times it is a simple irritant, at other times it is extremely painful. Occasionally it can be debilitating, though this has never lasted for any great length of time. I sincerely hope this doesn’t advance.
#22 – Reflux – or heartburn. As I understand it, in people with Parkinson’s, the ‘nerves that guide muscles of the GI tract may be slowed, and this slows the muscle action as well. The stomach takes longer to grind and mix the food. When food and stomach acid sit in the stomach for too long, the acid acts on the food to form gas, which can distend the stomach, causing burping, and sometimes severe bloating and painful cramping” (Kathrynne Holden). Check. Check. Check.
#21 – New Moniker – In my early days of diagnosis, I had a young family (3 kids – aged 2 months to 4 years) and being Dad was a big part of my life. I’m not exactly sure when it happened but sometime in those early days I morphed from being simply “Dad” to being a shaky Dad or, more simply, Shakydad. I can thank my kids for this label. I’m pretty confident that it didn’t refer to my competence as a father (a bit shaky?) or my rap-artist handle, but that it more closely reflected my physical appearance – a Dad that “shaked” with PD. From my car license plates, to my email address, this moniker has stuck with me – I can’t shake it off! I find it adds a dose of humour that still helps.
#20 – PWP – or People With Parkinson’s. Having PD has brought me into a whole other world where I’ve met so many good people. I have made friends that I otherwise would never have met. I have seen people who are in far worse circumstances than I who have managed to not only cope with their own difficulties, but been able to extend care and regard for others in extraordinary ways. They have been truly inspirational and beacons in a sometimes dark world. I am grateful.
#19 – Time – while I continued to work for several years after diagnosis, I was eventually required to go on Long Term Disability. This has been a saving grace as I just could not work the way my job required. I still miss working within a school community – especially with the children – but in exchange, I’ve received the gift of time. I have more time for my family, more time for activities, more time for rejuvenation and rest.
# 18 – Anxiety – in the days before PD, I remember having incidents of anxiety in my life but certainly it was episodic. Today, it is a regular visitor to my life. I am anxious or unsettled a lot of the time and under a range of circumstances. From something as simple as going out for a walk or to medical appointments to attending large public or social events. It is by no means crippling, but it is a source of some concern. I don’t fully get why this is but it is part of my days now.
#17 – B & B – bowel and bladder issues are not something that I write about a lot nor are they a particularly interesting topic for most readers. Suffice it to say that I have them. I can swing between diarrhea and constipation in the course of a few days. I frequently have an over-active bladder. The #17 on my “Greatest Hits of PD” – pee and poo – they probably should be #1 and #2!
Tune in again next week for #16-#10! “Dyskinesis”! “Gratitude”! And that monster hit “Apathy”!