A Walk in the Park

When I first found out that I had Parkinson’s some friends suggested I watch the Michael J. Fox documentary ‘Still’. Well THAT was a bit of a sobering experience. Although … I did take some comfort from his sharing of his condition. In an … unlikely way? I had already looked up materials from Parkinson’s Canada. They had a guide I downloaded to help ‘newbies’ get a basic understanding of the disease. Sprinkled throughout the guide were testimonials from people living well with the disease. Especially people who have experienced the onset of Parkinson’s as a young person. I still feel young at heart but know that turning 65 this month perhaps situates me in the regular ‘older person’s onset’. Does immaturity help as much as actual youth in years? 😉

I will abashedly admit that I liked watching Michael’s documentary because he clearly was struggling – his symptoms were clearly debilitating. So many of the profiles I was coming across were about people who were climbing Mount Everest – or running marathons – or were competitive athletes. I was not seeing myself in their routines. First because ‘routine’ and ‘Wendy’ often do not fit so well. Even more so ‘rote’ and ‘Wendy’ are not a good fit. Dedication to a big athletic achievement … also not on my happy list. And I was falling down. I was freezing – THAT is an interesting sensation. I was shaking like a leaf and talking like someone whose teeth are rattling from the cold.

Today I discovered ‘The Michael J. Fox Parkinson’s Foundation Podcasts’ site. Now that I am feeling more settled in our new home I am ready to begin to seriously look at what kind of exercise and how much I need to build into my days. They had a great show ‘Explore Exercise for Life with Parkinson’s’. Their panel included an athlete … but also a grandmother … a couch potato … and a young doctor. And the scoop was simply ‘KEEP MOVING’. Move until you sweat – or breathe quickly. You can monitor your heart rate – your steps – etc. But it is just as effective for we everyday Jo Blows to simply get up and go. I like to get up and go. I’m not actually all that good at just laying around.

The second great tip was to try to dual task. I found this quite interesting. One of the things that I noticed over this past year as my symptoms crossed into the ‘diagnosis range’ was that I was finding it difficult to multitask. Previously multitask was my middle name … I was finding that I needed to mute the tv if Ede and I were going to talk over dinner. Or that I could not listen to music and write or do website creation work at the same time. It was explained that women often experience the cognitive effects of Parkinson’s first – before the onset of muscle problems.

That was certainly my experience. My first big change was when I realized I could not remember ‘yesterday’. As soon as a night came between then and now … my mind was a total blank. An uncomfortable blank. I could feel nauseous just trying to remember what we ate, or where we were, or what we did. I just chalked it up to getting older and set up a ‘day book’. I kept notes on what I did each day and then I could look back and would have something to recognize. I could do that … recognize and then recall some details. I remembered teaching kids spelling who could not spell words correctly from the get go … but could recognize if a word was spelled correctly or not given a few choices. I figured I was veering into that territory.

Then I found that even though I would have a list of chores to do at the beginning of the day I could not remember them. Even if there were only three things on the list. I started setting my iPhone to remind me to do certain jobs. I created ‘To Do’ lists … but then I would forget to look at them. The most frustrating development was when I could no longer remember how I designed or organized the webpages I host. Every time I went back to a job I would have to start at the beginning. Some days I’d use the same logic and come up with the same approach. So I started using NOTES to write down whatever steps I’d used to create a database. The next time I worked on it I would go back – bring up my notes – and follow it all step by step. That was very useful.

After I started taking levodopa all of these cognitive issues started to ease. Phew! One night I woke Edie up from a sound sleep to exclaim that I could remember YESTERDAY! I could remember what we ate. I could remember who came by. I could even remember last Wednesday! Last Monday! Very interesting to find that the ‘files’ were in my brain all along… and that it truly was the neurotransmitter that was missing. I just needed to connect the dots. Thanks levodopa!

So back to dual tasking. What my brain needs is for me to walk and talk. If Edie comes along that is NO problem!  If she doesn’t come along then I need to do things like walk backwards for a while and count at the same time. Or count backwards and just plain walk. Or perhaps listen to a great mind boggling podcast. Or work on my favourite algebra or calculus problem while walking. All of these dual task type activities help my brain rewire/strengthen nerve pathways to improve my gait and my cognitive functions. I think I’ll leave dual tasking while cycling for later. Ha!

So – today – a good day. I got up – and I got going. Walked to the Harbour and back. Worked on the local historical society website – THAT is one GIANT database! Some time I’ll share the link so you can see the incredible work they have done. North Frontenac Historical Society. I redesigned this blog’s menus. And even found time to do an hour’s worth of walking/swimming/talking in the pool. Wrap that in some relaxed reading and a great dinner with my wife… yes… a good day.

Thank you Michael J. Fox Foundation for the inspiration and the encouragement to be real.