I hope your summer is going well. Mine has been pretty good so far.
My in-laws are staying with us for the summer helping to keep the boys occupied so my wife and I can continue working full time. My in-laws are eager to helpfully pitch-in around the house, which leaves extra time for my wife and I to enjoy an occasional quick getaway. Because they are not English speakers, the boys have to converse with them in their language. I’ve heard that speaking a foreign language is good for your brain. When you have an incurable progressive brain disease (like me), anything that’s good for your brain is going to get your attention.
The only downside of their visit is the extra stress of having 2 extra adults in the house. But my in-laws are fine folks who bend over backwards to minimize the unavoidable extra stress resulting from their visit. Besides, the treehouse remains an ever present refuge should I need to temporarily disappear (Fortress of Solitude….remember?).
There have been some rough patches. My older son needed surgery on his foot. His highly treatable, yet needing surgery to correct, foot-bone condition was surgically fixed in his other foot last year. This year, we decided to get his remaining foot taken care of as soon as he got out of school. The surgery went fine and he’s on the mend, but the recovery is taking much of the summer. With his ability to get around significantly impacted, we have opted to save any fun summer trips to the beach till later in the summer. So the start of the summer has been a little slower than normal. Adding to the fun was an untimely water service line break in the basement, a truck that failed inspection due to a frame that is rusting away, and on multiple occasions finding myself incapacitated at work due to the volatile mix of Parkinson’s, stress, and heat. It’s that same intolerance to heat and busy work schedule that has prevented me from completing my treehouse elevator (despite the available help of my very heat tolerant father-in-law).
But we did manage to have some fun. Like when we went to our friends farm and I got to use some engineering knowledge to help remove fence posts. The first thing we tried was staring at them.
When that didn’t work, we eventually tried some other things. Eventually, we did manage to find an easy, repeatable way for my friend to remove fence posts using simple tools.
Here’s some more photographic evidence of other fun stuff we’ve done this summer:
Also, this summer marked the end the 4th full year post diagnosis working as an Engineer. Engineering suits me pretty well. I’m fairly smart with a healthy dose of creativity, a knack for collaboration, solid organizational skills and a good work ethic. Possessing these attributes has allowed me to continue building some pretty kick-ass stuff. But the unfortunate reality is that my body is gradually producing less and less of a vital brain chemical. Leaving me feeling increasingly limited. Fatigue, cognitive challenges, and sporadic movement problems make it increasingly difficult to keep up. More misunderstood. Parkinson’s is isolating that way. Frustrating.
Why can’t that depleted brain chemical just be replaced somehow? I wish it were that easy.
The drugs used to treat Parkinson’s work fairly well, but they’re far from perfect. Their effectiveness wanes with time and they can, in fact cause side effects that are arguably as problematic as the disease itself.
You may recall from earlier posts that just prior to the commencement of summer, I had been experiencing some problems with Obsessive Compulsive (OC) behaviors. Suspecting that Dopamine Agonists were the culprit, I did wean off them and the OC problem was quickly resolved. However, even after being free of Agonists for two months now, I know the damage to my wife’s trust in me will take longer to fully heal. Still, I was one of the lucky ones. I have a close Parky friend who is struggling through some extremely tough times right now because of Agonists.
If you are dealing with difficult times on account of Dopamine Agonists, I’m rooting for you. I know it’s tough.
When I was on Agonists I recall how un-naturally motivated I was to work on my “latest project”. Waking at odd hours to work like a madman on whatever I was working on at the time until I crashed…then sleeping for an hour, and waking fully alert, ready to repeat the cycle until I was dangerously sleep deprived…and my increasingly half-baked obsessions increasingly took precedence over what I should have been doing.
When I got out of the cycle, it took a bit of time to get used to having so much less time to do things. But sleeping through the night is healthy and feels great. Though I have a lot less time to do things, at least I’m much more likely to do the right things!
So I guess this is the summer of acceptance. Events at work have made me accept that it is definitely possible that I will need to quit working sooner than I would like. Sudden unexpected expenses have caused me to accept that my wife and I need to think hard about how to adjust to the significant loss of income, should I need to quit working for health reasons. Make no mistake, I’m not giving up. I will continue to fight like hell to remain functional as long as possible, largely through diet and exercise. I’m just more at peace with the idea of eventually needing to make some major adjustments.
But you know what, I’m sure it will be ok regardless of what happens. My wife and I have done a pretty good job of planning ahead for retirement and have built up a pretty good nest-egg, actually. Realistically, even if I do need to transition to less physically demanding or less stressful roles at work I’m sure I’ve got at least a few more years left in me. Also, while maybe a bit difficult, the adjustments we need to make to our financial habits are very doable. Besides, I can always take on the odd side jog such as cleaning gutters…or painting:
With my cognition unclouded by Agonists I have a more accurate sense of self… I may not be exactly what I wish to be, but it makes no difference what I yearn to be. I am what I am because of brain chemicals that I have little, if any, control over. Regarding the particular identity that I am stuck with, I could do worse. Besides, my summertime indulgence of reading my favorite book series is able to temporarily transport me into fantastic worlds where I can be whoever I wish. Hand over that Jack Reacher novel!