This post is the companion piece to my latest video:
Living with Parkinson’s is like climbing a snowcapped mountain. Every hand and foothold is a fight to simply maintain position. Every slip, every ability lost brings the question “How much more can I lose? Is this my avalanche?”. When holding on above this abyss, there is only one thing to do…put your best foot forward and climb.
This song “Oblivion” by The Briggs has always been my “Parkinson’s Song”. While it may sound like a dark image of staring into oblivion, that is the truth of what we must do on a daily basis. There is strength in accepting that and, as the song says, putting our “best foot forward” without fear. We may one day fall, but until that day comes, we climb. We climb our crumbling mountain and every time we fall, we gear up and climb again.
This is our life and we accept it. Many Parkies that I have spoken with are actually thankful for the greater appreciation for life that comes with this affliction. I know I am. That’s not to say we are oh so happy we have received this gift of enlightenment. Far from it! This “gift” came wrapped in fish-market newsprint and it was not a fresh catch. But if you want optimism, find a Parkie. (Just be careful about using that nickname unless you happen to be an anointed and esteemed brother or sister of the Loyal Disorder of the Almighty Tremor!)
Seriously though, I have never known a more steadfast and loyal group as the brothers and sisters I have found with this disease. When I was first diagnosed, my thoughts flew towards carrying those who despair at sharing this condition because I was very young (for a Parkie anyway) and very strong. I knew I would do great things in spite of my diagnosis. It turns out that I am truly nothing special in this unlucky fraternity. I haven’t met a single PwP who lacks awe-inspiring amounts of courage and grace. Truthfully, I have more often been myself carried and inspired by a tiny warrior princess, two girls of an age with my daughters and a man old enough to be my father.
It shouldn’t come as a surprise, while it’s true there are many afflictions that are far worse, this disease has it’s own special weapons of mass despair and they demand that we summon the entirety of our greatest human qualities in our communal defense. To fight this fight requires that we vigorously work a body that is being robbed, very painfully for some, of it’s mobility and grace. This bastard of a disease attacks and steals the very weapons we need to fight off it’s advances. The after-effects of our exertions are often painful rigidity, tremors and extreme fatigue. Yet almost every Parkie I know powers through these simple yet impossible sessions of mild torture with a zeal that exceeds the majority of the elite lifters that I know. Of course they do, their stakes in the game are far higher than any young athlete dreaming of even Olympic glory. The price for denying our duty is not death, but rather the loss of living without the loss of life. If we don’t take up arms in our daily battle, our lives will likely end in a wheelchair or even a bed. Which fate is worse?
Even the dreaded C-Word gives a decent amount of hope to many who it besets. Please, take no offense, I do not make light of cancer. It ruined my father’s life for almost thirty years even after he defeated it. It’s a war that I am also familiar with, but while cancer steps in the ring and gives it’s opponent a fighting chance, Parkinson’s has paid off the judges and rigged our bout. Should we give in to despair and throw in the towel when the bell rings our outcome is certain. Parkinson’s call to us? “Fight me in this sham of a contest. Fight me, or face oblivion.”
Contrary to common belief, oblivion does not always mean utter destruction. Rather it is defined as “the state of being unaware or unconscious of what is happening“. This is a more accurate description of PD’s grand prize, to be an immobile witness to the still moving world around us. To receive the embrace of friends and family but to not be able to return it. These are our stakes. Our game is No-Limit Texas Hold ‘Em and the chips measure out the time we fight for.
All is not lost, however. For every Parkie knows that we have the power to shape our own destiny. We have our medical miracles, like many diseases. While they may not offer a cure yet, they do offer us time, and we know very well now how valuable a gift that time is. We also must know that as long as we keep up our fight, our odds of avoiding a wheelchair or a bed get better and better. We also must know that we fight, not just for ourselves, but to encourage those who stand beside us in the trenches, our brother and sister Parkies as well as our family and friends who gain strength in witnessing our struggle. The gift that has been well hidden in this malady is a life with true purpose. We have an opportunity to truly lift up those around us by simply fighting our battle with dignity and courage. I believe this is a great gift and we were given it because we are strong enough to bear it. So stand, stare at oblivion and smile, knowing that your fate is truly your own to define. It holds no true power over you. Put your best foot forward, and live your life without fear.
***A special note on the video: In the video I show a few of the movements that I have found effective in improving my balance and coordination. They are fairly advanced, but if you can still safely do them, they may be of help to you too. First and foremost is the squat. In any form, even a simple air squat with no weight, this movement is one of the most important movement patterns that we have. Practicing it and finding ways to challenge yourself with it will be one of the best ways to increase your strength and balance. I personally take this a step further with walking lunges (at 1:40 in the video) and one of the most hated movements in all of weightlifting: the Bulgarian Split Squat, which I make more difficult by adding chains to really challenge my sense of balance. When first shown at 0:36 my partner Tony is having to help steady me to get my rear foot onto the bench behind me while I prepare to split squat 95lbs plus 40lbs of swinging chain. When shown later at 1:25 and 2:05, a few weeks of practice has allowed me to double the chain load to 80lbs and no longer need assistance getting started. The body still responds to demands that you place on it as well as to systems that you allow to fall into disuse. Find ways to challenge your body’s ability to balance and coordinate movement and it will know the systems are still needed and make efforts to maintain them. That is the essence of training and a key element in maintaining quality of life in general as well as fighting this disease. Here are some links to Youtube videos giving instruction in these movements from easiest to hardest: