On Monday, my wife and I attended my latest routine appointment in a continuing saga of appointments for my Parkinson’s disease. Essentially, we knew what was coming, but we didn’t know the name. In this case, the name of my new medication is Amantadine, which sounds like a proper name for one of the manymoons that orbit Jupiter (at the current time, this number is 53 confirmed with 14 more waiting for an official designation as something other than letters and numbers).
What Amantadine does for me is it makes my body less rigid and improves my shakes. The effects will take a week or 2 to set in, so I’ll see what they do for my left claw hand and my left dystoniafoot. Hopefully, they can keep me from making my trail names Shakes the Hiker, too. I’m feeling optimistic about it. So far, I’ve had no side effects, which is a good thing. After I took Azilect for the first time, I felt it in my eyes as I seemed to be more sensitive to brightness, but after that, I felt nothing.
Thus, I add a new medication to the new normal.
As for the rest of the appointment, I did terribly at coordinated front and back foot tapping. Just like when I went to tap my foot and play drums at the same time (3rd or 4th grade) and I fell over backward, my life wasn’t meant for doing too many things at once. In the same way, I couldn’t really do the tongue stick out test since I’m not Gene Simmons and because I had to have my tongue clipped when I was younger so that I could properly speak certain words.
Yep, I’m a walking calamity, but I hope that my strut down the catwalk to see my gait impressed him (when I do my little turn on the catwalk...).
In the end, we walked out with an audiology appointment and a promise for a return visit in 6 weeks to see how the medicine is working.
Fairly routine, huh?
Well, there were certain subtle things popping up in the undertone of the conversation. These included losing weight and getting healthier. And yes, I know... I know... I know... hence the walking / hiking program I'm currently on and discussion about the dangers of overheating and dehydration (see last week's post on that). In addition, my doc's discussion included a statement about buying me another 6-12 months in the condition’s progression. Personally, anything I can do to not have to do Deep Brain Stimulation until I have to is a good thing. When the time comes, I’ll be ready. I hear so many stories of success and positive attitudes about it, how can I not be? Personally, my favorite is Perky Parkie’s “What if I Was a Superheroine?” blog post, but yeah… I digress. Surgery and looking around for more conditions that could be wrong with me aren't high on my list of things I want to do.
I’ve seen the video (and you can, too, since it's up above). It’s amazing what technology and modern medicine can do. That said, it stinks what conditions and illness and life can do, and for this, I’m thankful for the brilliant STEM minds out there who use their big ol' brains to keep my brain safe. There are a lot of people out there who want to doubt them or put big in front of whatever noun that they can utilize for their situation, but for me, I believe in them because it's clear that they have a plan to make me better.
I'm also thankful for my number one support system, which is my wife and family as a whole. My family is always there wondering how I am, and my wife is with me at the doctor's, advocating and explaining what she sees to get me the best help she can. There's times I think she catches more of my new normal than I do! That said, I'm glad to have her on my side. She's a tough cookie (and an awesome person - my favorite, in fact!)
There’s not enough love for the caregivers who laugh and cry and stay strong with us. Oh, there’s tons of love and appreciation, but they deserve Brewster’s Millions win the game / not just play the game more.
For this, I’m not going to write a ton tonight. Instead, I’ll just say that if you have someone you love or who loves you, male, female, family, friend, significant other, spouse, or you have anyone who cares enough to ask how you are, don’t get defensive. Just thank them with the most respect in the appropriate level way (in this, you probably don’t want to give your co-workers a big sloppy kiss or something; then again, maybe you do!).
And for this, I thank all of my family and friends for keeping me upbeat. From the bottom of my heart… YOU ROCK!
Whether it's a phone call to my family or quiet time at home with my wife or enjoyable getaway time like our time in the Hudson Valley this weekend grading sculptures at Storm King Art Center, life is better with her (and them)! Really. While the future is uncertain, the now is filled with a lot of happiness and love and emotional closeness. I'd be lost without Heather. She's my bestest bestest (for realsies!)
And while I (and many of us) don't always say how much we value them and appreciate their help, we should because even though our loved ones don't know our journey, we don't know theirs, and frankly, that doesn't seem like a fun trip to take.