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Friday, February 10, 2017


            Sometimes, at night when it’s dark, I find that I’m afraid of my body since it seems to be changing a lot, even in comparison the changes I’ve already seen. If it’s cold out and I’m alone, it seems like the tremors that once began so simply have multiplied and have now begun to cause my whole left arm to shake wildly from my bicep muscles to my clawed up hand. If it’s a long day, and I’m overwhelmed from giving it all to the excellence of a teaching performance, I find that I'm more prone to just want to shake off the world in absolute silence by myself, decompressing before I can do anything else, and if I can’t, I find that I’m more susceptible to being emotionally drained for the way home. 
            But this seasonal winter stuff and the number it can do on negative thoughts, even if the soundtrack from La La Land is playing in the background, yeah... that's not my favorite.
            It’s a good thing to have a positive soundtrack, and I’m working on adding the final 25 or so songs to my 500 song playlist. Maybe that's what I'll do this afternoon.
            Most times, this whole Parkinson’s ride is what it is. I have it, and I am forced to deal with it and confront it, so I can be positive about it and my outlook. I can share my strategies for overcoming, and I can radiate happiness to be a great person for myself and those who watch me tough it out or suffer through it, but sometimes, I just feel a sense of the dark when I wonder what else is going to come when I think about my other symptoms (constipation, frequent urination, facial lack of movement from not smiling as often to not blinking, bradykinesia, rigid muscles, hearing issues, balance) and how they could be leading to more aggressive ones (dyskinesia, dystonia, slurring when I talk, falls, softer voice, nighttime sleeping issues). Sitting around contemplating a future with regard to work, home, car, and movement as well as the need for babysitters is heavy, and I know it’s not guaranteed. Godzilla could rampage tomorrow, but most likely he won’t, so I need a realistic game plan for the future when it hits the fan. For as much as I can deal with the realities of Stage 2, I’m not ready for Stage 3 and beyond. I’m just getting used to being someone with a disability, which is something more pressing as I go from stage 1 to stage 2 of this whole Parkinson’s thing.

            Like so many people, I still have plans and dreams. I still want to get out there. I never want to stop being, but there is going to come a time when living will be even slower and more vicarious than it is now, so for that, I have to reconfigure more of my wiring.
My number one realization in all of my goals for the next season of this game is that this whole notion of stopping the spread of Parkinson’s is only a slowing down. Azilect is not a cure. It’s assistance to let me work for me, but it doesn’t take away the tremor forever, and neither would the medical marijuana in the video that many people share with me. In the end, this condition does what it does. We take a medicine and build a wall or send our forces out to beat the tar out of dopamine thieving enzymes, and all we do is force the condition to take a couple more downs to score a touchdown on us. Not that I’m against bringing the team in for a goal line defense set up, but sometimes, the whole thing just feels so absurd, like Sisyphus pushing a rock up the hill only to start all over again tomorrow. Parkinson’s will find the path of least resistance and push through anyways, whether or not we put a drop of oil on our bodies or not.
The only thing that resistance truly does is it provides more time to live, laugh, love, influence, experience, and to take in someone else’s experiences, so for that reason, we need to keep resisting, and we need to keep believing.

Everything else is movement toward another stage of the disease. When I think about those consequences, it just shakes me to the core. These are things that are coming, and I choose not to look at them for too long since it feels like Scrooge staring at his grave. It feels like watching Gleason again when you realize that everything after halfway is just more extreme representations of his ALS condition, which he couldn’t fix anyway. And it’s at this point where a person with a neurological condition, whatever that condition may be, knows that he or she is going to live out the rest of his or her life in a progressively deteriorating physical and mental state. We may not be Steve Gleason or Lou Gehrig, but we will be the actor in our own drama.

For that, I hope to Epictetus that I can be brave and tough through it all. I hope I can be brave and shout out like Eddie Vedder regarding the song we need to sing to our body, even if it's about a car (Go – “Don’t go on me now!”). But most importantly, all I can hope is that I can be a better person with the time I have left before the next more intense stage. Since it seemed to take 5.5 years to go from stage 1 to stage 2, I hope that this stage with meds and treatments can last me into my solid 50s (I’m 45).
However, nothing is guaranteed. For months, I have watched these simple movements, which I hid in my left hand back in 2011, and I see them openly start to transfer to my right hand. Now, I’m not hiding them from people who might question them. You want to talk about them, then let’s do so. There’s no point in denying them or trying to rationalize them as something else. They are what they are. I’ve waited for them since the cold set in last autumn, and I’ve been on the lookout for them to become an everyday deal. At first, I wasn’t sure what was effects from the cold and what wasn’t, but now, I just want to see if things slip back a little less drastically when the spring comes back, but really, I know that they are my reality, even if my knuckles don’t ache in this same way come the days of April’s flowers.

            On days when I’m waiting for a mid-winter snowstorm to appear from a 60° sunny afternoon, the wonders of whether this spring will ever come fill my mind with a paranoid wonder of what will come in the next year of my life. Will this be the last summer that I can possibly scale waterfalls in State Gamelands 13 or did that happen back in 2014? Will my leg tremors get worse in my left foot in such a way that I’ll never again be able to walk 23 miles around all of Blue Marsh like I did in 2014 or even 10 miles total of an in and out hike to some spectacular destination like I did in 2015? Is the dream trip to the Holy Ghost Panel this summer the last great hurrah of what my hiker’s physical body is capable of or will something snatch the opportunity from me before I can make it a reality?
            All these thoughts scare the beejesus out of me.

            As days ebb and flow with good, bad, and repetitious unmemorable events, I do my best to take everything as it comes and not let who and what I am get me down, but sometimes, it just does. It’s not like I feel like crying. What would the point be? It’s not like I don’t want to go. There’s so much to live for that this isn’t an issue, but sometimes, I just want to be home and laying on the couch, holding my wife with the distracting sounds of something playing on television.

            And it’s on nights like this where the answer is to bring her flowers and a smile accompanied with a big hug and kiss. Love, really, is the only answer.


  1. You nailed it! I can SO relate to the physical and emotional realities that you share. Each day as I experience this transition in my own life, I am also caring for my husband who is in stage 5 and going on 27 years since his diagnosis. As I watch him progress slowly through the stages, I know that I am on that same journey; he is an inspiration to me, but at times I can't help feeling fearful that all of my remaining useful days will be spent giving care and love that will have taken the remaining days of relative comfort, mobility and creativity from me.... and then...I feel guilty and ashamed to have indulged in self pity. This is not the life that any of us would volunteer for, but it is the reality of the life we have, and as my husband says, "it is better to be seen than viewed". So we love and live and live and love the life we have and find joy in the beauty and goodness that surrounds us, each and every one. (Follow me on Facebook at Parkinson's Family Caregivers or view my Blog "Parkinson's Perspectives: A Couple's Story") Carol Ennis

  2. These words are awesome and powerful. I commend you for your love and compassion. I'll follow you right now. Feel free to follow or share my stories as well.