My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
Sisyphus and the Golden Year
There is a special balance in responses when someone tells you that they have a difficult diagnosis. It’s sort of a Goldie Locks thing on steroids. Some of the reactions are too hot. You are now the illness. Nothing you have done or will ever do will ever count again. You are now to be pitied. Some are too cold, “That’s nothing. I know someone who just takes a pill and everything is great.”
One will look at you like it’s your fault. Another will offer some ridiculous story of cures, that they know nothing about. Some act like it is contagious, or fear of their own abyss that comes for all of us…eventually.
And then there is just right. Example: “That sucks! Tell me anything you want to. I am part of this new normal with you. Now let’s get a drink.”
Because it does suck. There are no sugar-coatings for certain things in life. No one facing great loss wants to hear it will get better. Everyone who has experienced this kind of loss deep down might know that the intensity of the pain will eventually dull to an acceptable daily level, and life can go on. But, no one needs you to give them a time table. Sometimes someone deserves to be allowed to float in the suck pool for a while, without well-meaning arms dragging them out before she is ready. The friends that matter swim by her side. She will get out when she is finally tired of skin pruning. And then her friends will be patting her back with a towel waiting for the sun.
Cancer is a tricky one. When I was a child it was still whispered and called the C-word. Almost everyone died. Cancer sucks. But, thanks to science, we have amazing breakthroughs and many, many cures. Multitudes of people have a terrible year or so of treatment and go on to live long, happy lives. Early detection is often the key, yet I know two people with stage 4 of different cancers that have been given no life expiration date, yet. So, stories of others’ survival might be an added prescription to the friendship list. By-the-way, people still die too soon and cancer sucks.
There is a ladder of suckiness to degenerative brain diseases correlating with the age of diagnosis. Someone diagnosed at age 30 is a different reality to someone diagnosed at 90. I have recently been diagnosed a bit past the middle of the two.
Parkinson’s disease is like standing in the wind trying to hold your feet on the ground. The disease never takes a day off, so you can’t. There are no periods of remission. It is a comprehensive disease that attacks multiple parts of your existence and it is a slow-moving avalanche into a probable but unknown valley. Your body is now a chemistry lab for what combination of prescriptions, herbs, diet, massage, acupuncture, marijuana and exercise will hold down the increasing gales and get you through the day.
You add PD to your professional and personal schedule. Every time you walk up or down a flight of stairs you include an exercise for balance. Swing your arms wide each step to prolong your ability to keep swinging them at all and open your walking stride to prolong an inevitable shuffle. Do your standing balance exercises every day. Do your cognitive exercises every day. Do your cognitive exercises while you are doing your balance exercises. Strenuous aerobics at least five, preferably seven times a week. Yoga, boxing, weights to hype up that dopamine, and meditation to cool you down.
Can you have self-pity and perspective at the same time? I am not 30 or 45. But I’m also not 80 or 90. I am one of those annoying, ageless, highly educated, in great health, Baby Boomers that has barely conceded to middle age. Silly me.
Every day is also the inventory of symptoms. How is my walk, today? The arc of the swing of my arm? Are my wrists hurting? Am I stiffer? Do I need to lift my weak leg to get into the car? When something goes down the wrong pipe, am I losing my swallow ability? Every forgetful moment is a question of cognitive regression. How was my bowel movement? Urination? Mood? Skin? And the tremor or tremors, which you track throughout the day.
Not matching with any clinical drug trials, I participate in surveys for research studies that I am matched to. I answer lists of questions about every function of my body and emotion life. As I said, I am in early stages, so most of my answers are in the happy range, I just gaze onto what will be coming. Stress exacerbates any tremors. So does anxiety. I get stoned when I’m done. Kills two birds with one stoned.
Though no one has completely nailed down the all causes or combination of causes of Parkinson’s, I have two defective genes. The GBA gene that seems to raise a person’s risk about 10%, and the LRRK2 gene which apparently raised my own risk to approximately 85%. My Ashkenazi roots gave me my cunning wit, and this LRRK2 gene. Uncountably grateful, my son did not get this LRRK2 gene nor did my brother so this genetic mutation in our core family ends with me.
There is a saying, you don’t die of Parkinson’s, you live with it. LOL. What quality of life is the question. And, there are complications that can kill you. I have no idea how long it will be until the quality of my life will be completely diminished. The doctor said that on average after the next five years, maybe 10 if you’re lucky, it doesn’t look bright. But, I also know it is not the vicious killer, pancreatic cancer, nor am I a young person that has a whole life completely detoured. My child has grown well and happy. My marriage is strong. But the rest of my life is…the rest of my life.
Life and work have me living across the country from most of my family and closest friends. So, I have no real community. I am joining a PD workshop for newly diagnosed to find a peer community. And to learn how to have PD. But, I think it is self-taught.