As My Losses from Parkinson’s Accelerate, It’s Time to Fight Back

As My Losses from Parkinson’s Accelerate, It’s Time to Fight Back

Don’t forget you’re human. It’s OK to have a meltdown, just don’t unpack and live there. Cry it out and then refocus on where you are headed.” —Unknown

I tend to have meltdowns more frequently these days.

Why is this happening?

My losses from this disease seem to be accelerating. Following are some examples:

  • In boxing class, I sometimes struggle with the punching choreography and can’t seem to coordinate my hands to do the actions required.
  • When reaching to place items on a high shelf, I lose my balance and fall backward.
  • My speed bag workouts are slowing down, and I lose my rhythm more often.
  • I am clumsier and tend to knock things over.
  • Typing on a computer keyboard is an exercise in futility. Sometimes my finger holds pressure on a key too much, and at other times, not enough. I can’t tell anymore.

I suspect that you can relate to my experiences only if you also have Parkinson’s disease (PD). While these setbacks may seem inconsequential, when they occur with increased frequency, it becomes frightening and overwhelming.

I must be mindful of what I do now more than ever. Falling and injuring myself a few weeks ago shocked me to the reality and seriousness of this disease. I find myself cursing at PD and yelling expletives at the top of my lungs in my house when my body fails me. My pet bunny doesn’t know what to make of this. I think the poor guy thinks I am yelling at him.

When my body does not move the way my mind is telling it to, my frustration levels accelerate. This may also be a harbinger of things to come.

Fighting back. (Photo by Michelle Del Giorno)

Running on empty

Some research indicates that over 50 percent (and as much as 60-70 percent) of dopamine-producing neurons are dead by the time Parkinson’s symptoms first appear. I have no doubt that the disease is aging me before my time. A 90-year-old friend is starting to experience symptoms that are due to aging — the same signs that I have at age 66 because of PD.

My neurologist has suggested that sometimes I need to take a step back, refocus, and not be too hard on myself. He knows me well.

I must fight back — and not give in!

At any given moment, you have the power to say: This is not how the story is going to end.” Christine Mason Miller

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson’s Disease. Now, in addition to Steve’s story, I am telling my own.
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At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson’s Disease. Now, in addition to Steve’s story, I am telling my own.

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13 comments

  1. BOB ASHLEY says:

    I contracted Parkinsonism symptoms at age 40. I am now 70 and I relate to the gentleman who wrote about falling, getting hurt, loosing his balance and being angry or scared. Dial me in for all of the above! It’s a daily battle sometimes an hourly battle. I think God every day that I have a competitive nature and a great wife to support me.

  2. Christine Job says:

    Parkinson is very challenging, just to live day to day….
    When you “add” to the challenge with other diseases such as cancer, “crippling” arthritis, degenerative arthritis and the many other ailments…Such as scoliosis, diabetes and countless others…it becomes almost impossible to face.
    This is where a good “support group” and a “strong faith” is essential to face every day.

  3. J. Emerson says:

    I was diagnosed at the age of 52 and I am thankful that I had an exercise program already in place for many years before receiving my diagnosis. On those occasional days when I just don’t want to do anything, I too remind myself that I need to fight back! As I have said now for over 12 years, I may have PD, but as long as I’m able I will fight to keep it moving as slowly as possible. I encourage each and every person with PD to stand tall and Fight Back!

    • Jean Mellano says:

      Thank you J for your comment. I too am thankful I was an athlete prior to PD diagnosis and was disciplined to train. I believe it is the best weapon in our arsenal for slowing this disease down.

  4. David Harris says:

    Can’t register. could be cos i am losing my cognitive skills.What I would like is to find out a sufferer who parallels my journey .Diagnosed 6 years ago with shaking hand. now on madopar and biperidin and still not showing any physical deterioration. i feel fit as a trout. the outstanding symptom is cognitive loss but i have strategies to live with it. Writing is one way. My local support group has obvious parkinsons physical sufferers. I would be the least affected in this group by a mile. Anyone relate to this ?

  5. Russell Wilson says:

    “peak experiences” take on a new standard.
    Yesterday, on returning from exercise class at physio I can remember “complaining” (happily) to my pharmacist — checking in to get some my meds for my diabetes — about the pain in my butt as I ran across the intersection when the light was green. I didn’t understand I was describing this experience quite happily — later I recalled a few weeks ago wondering if I’d ever be able to run again (however slowly). Yesterday I was happy I’d been able to run, happy my butt hurt — sign of a good workout! Happy = grateful for “the little things” — things only someone with PD could understand, maybe. Be easy on yourself, if you’re not, that could be part of the “neuropsychiatric” symptoms of PD too. Be gentle with yourself most of all.

  6. Skip Shaputnic says:

    Thank you for being open with what you’re experiencing, for writing so honestly about it and for inspiring others dealing with this condition to live well, or at least better. I find your resiliency and gumption to be very admirable.
    Although I have had tremor symptoms for 6 or 7 years it wasn’t until 3-1/2 years ago that an evaluating neurologist correctly diagnosed being in an early stage, later conclusively confirmed by a DatScan.

    A few days after the results of the DatScan really sunk in I decided to not just take this diagnosis lying down. I told my movement disorder neurologist that I had resolved to do all that I can to maintain as good, and as an active, a quality of life as possible and for as long as possible. My affirmation acknowledges that although this disease can’t be beat, I am determined to counter it with a healthy lifestyle and do whatever I can to keep it at bay no matter what happens. This has led me to re-commit to my exercise regime in earnest with the knowledge that doing so slows down disease progression and continues to help me feel good, both physically and mentally. I am motivated to keep exercising regularly as it is now more important than ever. Moreover, I refuse to let my life be defined by this diagnosis.

    However, I acknowledge that subtle changes are taking place and am becoming clumsier with muscle aiming being more compromised with time. I’ll tend to knock things around or manage to jam my fingers where they’re not intended to go. But, no major injuries so far for which I am very thankful.

    Along with my affirmation, however, given all the uncertainties that come with Parkinson’s it would not be truthful to say that I have no doubts or fears or anxieties. Like others dealing with it I try to maintain a positive attitude and take it one day at a time. I’m game to do everything I can to enjoy as good a quality of life that I can living with this ailment and maybe even portray some hope for others–damn the Parkinson’s torpedoes!

    • Jean Mellano says:

      Skip, thank you so much for your kind words. I write from my heart and try to stay positive, but some days are harder than others. We are only human. This article was not well received by some as I believe they thought it was too negative.

      I believe it is so important that people who dont have PD can better understand what their loved ones who have PD may be going through. I also think it is important that people with PD know they are not alone in what they are dealing with. As an example, your comment “jam my fingers where they’re not intended to go” hit home for me as that has been happening lately to me also. I think you have a marvelous attitude that will serve you well in dealing with PD. Stay strong.

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