Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

Pondering questions about our future


by Sheryl Jedlinski

Following the World Parkinson’s Congress in Montreal in 2013, my friend and fellow patient advocate, Peggy Willocks, posted questions on Facebook asking how we see our lives changing as we go forward on our shared journey with PD. Many of us try to avoid this topic, yet I felt compelled to answer, knowing our future is determined by the choices we make and the actions we take today.

Peggy says she is, “sometimes surprised by the impact of something she has done or written. Even the ‘little things’ we do don’t come full circle until much later.”

Following are Peggy’s questions and my answers from both 2013 and now, and Peggy’s thoughts now.

Who among us will show up at the WPC in Portland in September 2016?

Then: I plan on being there, not only for myself, but also for those who can’t be there. They need us to be their eyes and ears, relaying to them what we learn so they, too, can make informed choices. It is equally important to be there for the “newbies,” who need to see and hear from “old-timers” living well with PD. This gives them hope for their own futures.

Now: Making it to Portland became larger than Parkinson’s and more important to me than ever when I overcame staggering odds to beat stage IV cancer this past spring. It was a miracle gifted to me by my young, skilled, determined surgeon/oncologist and months of chemo. Driven by the need to “pay it forward,” my mission in Portland is to personally thank my many online friends, from across the globe, who, for months, offered up prayers, positive thoughts, and good wishes that gave me the strength and resolve to regain my life. I couldn’t have done it without them.

“Life consists not in holding good cards but in playing those you hold well,” Josh Billing

What shape will I be in?

Then: “Svelte” if this is about our dreams living with Parkinson’s has taught me that this is like frosting on a cake – it looks good, but often hides imperfections and cannot stand on its own.

Now: Having lost 40 pounds following cancer surgery and 18 chemo treatments, I was as svelte as I’ve been in decades. I am enjoying my “skinny” wardrobe, the growth of thicker and softer hair on my head, and the disappearance of the “mystery” rash on my hands. Everything would be perfect if not for the neuropathy caused by the chemo which offered my best, if not only, chance of sending my cancer into remission. Meanwhile, neuropathy also makes it difficult for me to stand or walk for long periods of time, and maintain my balance – significantly increasing my risk of falling. Living with PD has taught me that, “Every day is a gift, called the present; and we must make the most of it.”

“Had you asked me at the 2013 WPC if I would have DBS then, my reply would have been an adamant, “No,” Peggy says, “But I’m glad now that I had an option, because DBS has greatly improved my quality of life.”

Will I be walking or pushed in a wheelchair?

Then: I will be walking, and leaving my footprints wherever I go. I did not have two total knee replacements so that I could spend my “golden years” doing wheelies. My legs are made for shopping, and I am not even close to exhausting my mileage allowance.

Now: I still do a lot of walking, but always with the aid of my two walking canes for better mobility, stability, and balance. Clipping along at a good rate, I project a younger, healthier image, leaving bystanders wondering if I am in training for an upcoming race of some type. The one drawback is that using two canes makes it impossible to carry purchases, requiring I find a friend to be my sherpa or shlepper.

Will I be munching on a hamburger or have a feeding tube?

Now: I don’t want to be kept alive by a feeding tube if my life is otherwise over. If, however, it allows me to maintain my every day activities, I say, “Bring it on.” Please note, death by chocolate is always my first choice.

Peggy doesn’t want a feeding tube, but says if it sustains or improves one’s life then go for it. When her cousin was stricken with Guillian-Barre syndrome, she didn’t think he would last a week. Now he’s talking, riding an electric chair, and has a feeding tube.  He hasn’t had a bite of real food in three years! Who knows what the miracles of science and medicine will offer. Who knows how we will feel about trying such miracles to sustain our lives? Who knows?

Will you be talking or someone be talking for you?

I was born talking, and my Dad taught me to speak up for myself at a very young age. No one has ever had any luck trying to change this.

2 comments on “Pondering questions about our future

  1. Larry Williams
    September 5, 2016

    Another great post…filled with truthfulness, optimism, and positive “I can handle this!’ attitude, which so embraces your whole persona….much love, tem

  2. Michael J Church
    September 5, 2016

    Great questions Sheryl! Having been to all and planning to go to Portland, I ask myself the same questions and additionally, what will I bring back from WPC. We’ll see you there.

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This entry was posted on September 5, 2016 by in WPC2016.

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