April is Parkinson’s Awareness Month. Last year, as I transitioned to a new site for this blog, I took the opportunity to revisit some of my earlier entries and reprinted some of these as”Greatest Hits – My Blog Vol. 1”. It’s been 3 years since I published my first blog entry on April 21, 20013 (Reelin’ in the years)!
This year, to mark this month, I thought I’d take a different approach. Instead of focusing on my blog, I wanted to focus on Parkinson’s Disease itself 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’ll spin a weeks worth of entries in each blog posting during the month. Hope you enjoy the ride and thanks for tuning in!
The Top 30 – Hits
#30 – Sleep – while this has varied through my 16 years with PD – from times when I slept for only 2-3 hours in total (not consecutive) to days when I would have 4-5 hours at night with another 2-3 during the day – I find that sleep has been a constant area of concern. Of late, and with the assistance of medication, it seems to be the best it’s ever been – I get a (mostly) solid 5-6 hours sleep at night, and frequently have a 30-45 min. nap in the afternoon. If one of these is disturb, I feel the ramifications throughout the day.
#29 – Exercise – I’ve never before been as actually aware of the benefits of exercise. While I am not a fitness buff by any description, I certainly can attest to the benefits of regular exercise. Swimming and walking are regular activities for me and if I have to miss these, I feel the negative effects almost right away.
#28 – Coffee – I have an excuse to have coffee! There is a body of evidence that suggests caffeine has properties that help prevent the onset of PD. While it might be a little late to prevent onset, there must be some beneficial characteristics even to those with PD. Agreed?
#27 – Dry – dry skin, dry mouth, dry eyes. several of the medications I take have, as a side-effect, a tendency to dry out my body. The dryness of my skin, despite my best efforts to moisturize, leads to easy “scratching” and flakiness. Drying of my mouth has resulted in not only the relatively minor irritant of dry mouth but it has lead to some major dental problems. Dry eyes are a common, everyday occurrence. A warm facecloth compress is my best friend!
#26 – Perspective – Having a chronic illness diagnosis of PD was indeed devastating. I remember the initial shock and despair I experienced. However, as I learned more about this disease, I also became acutely aware of how many other people experience far more crushing illnesses. I have been blessed by many healthy years, a strong support system, and a disease that while debilitating in itself, seems to be evolving on a relatively slower trajectory than others. The initial diagnosis some 16 years ago had me living life in a wheelchair in 5-10 years. I’m nowhere near that still.
#25 – Loneliness – PD can be a very isolating disease. Many recede into an insular world as the condition advances. Perhaps physical difficulties restrict one’s movements, or embarrassment is brought on in social circumstances. Whatever the case, it can get lonely. Recently I had a fall that confined me to home for an extended period and this was the loneliest period i can recall. I also think that some people are uncomfortable being around someone who has PD – they don’t know what to expect or what say or do. No doubt, I live a more limited social life these days.
#24 – Serendipity – There have been a few pleasant surprises that have come with PD. My tremors at one time were so bad that I made excellent milkshakes with little effort. When our baby was upset at night, I would simply place my hand on their chest, and let my hand “vibrate” them to sleep. When sales staff see me struggling with my wallet, they are more often than not more patient with me and clearly wanting to help. Friends and family frequently tell me about things they’ve heard, read or seen related to PD. It’s nice to know they’ve thought of me and are attentive to PD.
Next week: Numbers 23-17! “Dystonia”!” PWP”! And more! The hits just keep on coming!
BREAKING NEWS! A new web-series, Challenges & Change by The Green Planet Monitor, features an interview with me in its’ first episode. You can listen to it here.
The Green Planet Monitor is published by Earth Chronicle Productions, a Canadian multimedia company specializing in global environment, development and social justice issues.