For Parkinson’s Patients, the Sense of Loss Is Relentless

For Parkinson’s Patients, the Sense of Loss Is Relentless

I fight for my health every day in ways that most people don’t understand. I’m not lazy. I’m a warrior!” –Unknown

Parkinson’s disease (PD) is a disease of loss. It chips away one’s ability to perform seemingly mindless tasks.

Examples of what I have lost to Parkinson’s disease

The list of things I can no longer do, or no longer do without a lot of effort, may seem inconsequential:

  • Putting a letter or card in an envelope
  • Keeping a slipper or clog on my left foot
  • Opening a sealed envelope
  • Picking up a thread on the floor
  • Turning the pages of a book
  • Tying my shoes
  • Rolling over in bed or on the floor
  • Opening up packages
  • Shaving my underarms
  • Rolling a yoga mat
  • Folding laundry
  • Washing the hair on the left side of my head
  • Holding a handbag close to the left side of my body
  • Finding the edge of the toilet paper on the roll
  • Slipping on a sports bra
  • Trying to put on pants while standing on one leg
  • Putting on pierced earrings
  • Writing legibly
  • Walking without fear of my left foot dragging and tripping me

“…[I]f opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” –Carmen Ambrosio

What is the most troubling loss for me?

A more disturbing concern is that I can’t be trusted to hold on to something firmly with my left hand, whether it is a cup of coffee or giving my rabbit his medication.

Join the Parkinson’s forums: an online community for people with Parkinson’s Disease and their caregivers.

As an example, while giving medicine to my bunny, I was holding the bottle in my left hand and used an eyedropper with my right hand to administer the medication. Next thing I know, I looked down and saw pink medicine all over my rabbit’s fur. I was unaware that my left hand was tipping the bottle. So, not only did I waste the medicine, I also had to clean the rabbit.

I once spilled hot paraffin wax all over the kitchen floor, counter, and cabinets because I could not hold on to the paraffin container while trying to empty it. It took me almost two hours to clean up the mess.

The loss of my left-handed grip is a problem in itself, but the extra work and cleanup I have to do when it fails me are even more troubling.

PD is progressive

Just when I think I can deal with what I have lost, something else that I used to perform with ease now eludes me. It almost feels like a death by a thousand paper cuts.

While the loss of the ability to perform each activity is no big deal, it is the daily, collective, and continuing loss of other activities that serves as a constant reminder that I have an incurable and progressive disease. Day after day, this wears me down, and it seems the list of lost functionalities grows on a monthly basis.

Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.” –Kelly Hemingway

What’s the big deal?

While it may be easy to find a workaround now, PD is relentless, and someday it may get to the point where I don’t have an alternative way to accomplish a task. This is when independence is lost. Facing new failings every day, no matter how insignificant, is daunting and can fuel a sense of despair and hopelessness.

How can I best combat PD?

Keeping my sense of humor about some of the ridiculous things PD does to my body will be my salvation. Laughter will be one of the most effective weapons in my arsenal while I battle this insidious disease.

You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” –Josh Shipp

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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.

21 comments

  1. Sherri says:

    Jean – great article! I could have written this myself. So often we think we’re the only one dealing with this stuff until someone else shares and then we don’t feel so alone when we read we aren’t! Thanks for sharing and your vulnerability. -sherri

  2. Carla Collier says:

    Jean, this article really hit home for me with how similar we are. I’ve been going through a period of ‘loss’ lately and it has been rough. Reading your list of things you have lost resonated with me…all fairly little things, but they add up don’t they! Comforted to know that I am not alone! And I agree wholeheartedly that humour is the key!! Carla Collier

  3. Marcia Hardwick says:

    Why am I choking on food lately? Something seems to go down the wrong way…have trouble swallowing! Seems there is a new discovery daily! So it is quite true that Parkinsons steals from one in devious ways.

  4. Jacob Drollinger says:

    Hey, this is a magnificent description of one of the world’s worst fates. I don’t really suffer from the disease, per se, but I have a form of Parkinsonism caused by CO poisoning. Imagine living with the end stage of PD for over thirty years. Part of why I asked my wife to marry me was that I had hit a plateau; or at least I thought I had. The brain damage incurred has progressed over the last twenty- five years, until the present, where I can no longer walk, even with a walker, so I am forced to crawl around the house. On the floor I started out and to the floor I have returned. Laughing out loud!

  5. Gail Brightbill says:

    Newly diagnosed with PD in December, I’m still working on coming to grips with this diagnosis. I’ve avoided reading about the stages of progression of this disease because it’s upsetting and makes me more anxious. Yes, I read them early on, but choose not to dwell on those things right now. I am in the earlier stages so I’ve not experienced what many posting here have listed, but I know I could, some day, at some point see them happening to me. I am grateful that at this point I am not exhibiting debilitating symptoms. Most annoying is the crazy dreams I have. And anxiety.

    • Jean Mellano says:

      hi Gail, thanks for your comment. Yes, it is best not to dwell on what the future may hold. PD manifests itself very differently in people and it progresses at different rates depending on the individual. What has worked best for me is to keep moving (exercise)

  6. Penny Ward says:

    Hi Jean,
    I too can relate to almost everything you said. I have had Parkinson’s symptoms for 16 years and have managed fairly well with medication and lots of wonderful family and friends.
    However in the last year I have noticed quite a dramatic decline in my symptoms. My balance is not good and I have fallen a few times – no injuries thank goodness except to my dignity and pride! What I have found is that people out there are so kind and really helpful when you are trying to pick yourself up off the footpath.And usually from people you least expect. There are some good things about having an illness like ours – the children call more often, my husband has taken over most of the housework -he does a much better job than I did, lol.I got to retire early (after 25 years I was over my job) and I can still travel albeit with a little help from airport staff with wheel chairs etc. I feel so lucky that my Parkinson’s has progressed at such a slow rate compared to many others.
    But it is still a really rotten disease !!!!

    • Jean Mellano says:

      Thank you for sharing Penny, yes, it is truly a rotten disease!… The kindness of others certainly does go a long way. I just need to allow myself to be helped as I have been very independent all of my life. It sounds like you have a loving and supportive family. That is wonderful!

  7. Lou Hevly says:

    A very moving article. At the moment all the meds and supplements I’m taking seem to be holding the losses you mention at bay, but when the chips are down I’ll be thinking of you.

    On another subject, I’m writing a book about Parkinson’s, “La vida amb la malaltia de Parkinson” (in Catalan; I live near Barcelona) and would like your permission to mention this forum and quote from some of your articles. If you prefer I could give you a pseudonym. If you need more details, please email me off list.

    • Jean Mellano says:

      Thank you Lou for your kind thoughts. I would be honored if you mentioned this forum and if you wanted to quote from some of my articles, no pseudonym is necessary. I wish you luck with your book, I published a book in 2015 and it was a huge learning curve and very expensive. I did not write it to make money, rather it was written from my passion for the subject.

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