Image of man with a shadow of himself behind him.

Losing Who I Once Was

Parkinson’s takes a lot from all of us. The emotional and physical turmoil experienced by both the person with Parkinson’s and their care partners cannot be understated.

The realization that something is wrong with your body takes time. Parkinson’s progresses slowly and sometimes it’s years before an accurate diagnosis can be made. Even though you’ve had the symptoms for a while, the diagnosis itself is overwhelming. So many questions. What is going to happen to me? What will my future look like? How am I going to support my loved ones? Do I take medications right away? Do I wait? Do I tell people? How can this happen to me? Am I going to die? Parkinson’s can have a negative impact on self-esteem. You are forced to become so hyper-aware of your body. Every tremor is noticeable, every foot drag annoying. Trying to hide it from friends, neighbors, the grocery store clerk is exhausting. Keeping your hands in your pockets or sitting on them to keep people from staring becomes natural.

Experiencing loss

The loss of being able to do things you used to do is probably one of the hardest aspects of the disease. From small things like putting a key in the door or writing a note to someone to bigger issues like driving or visual problems that prevent you from reading your favorite book. Walking down the street becomes difficult, both from balance issues and fatigue. Questioning whether you can do these things causes self-doubt and further loss of self-esteem. These physical symptoms and feeling of depression, anxiety, and apathy are likely to reduce social interaction and increase isolation. Another loss.

The dependency on medications and living by the clock to determine your next dose is also a change in quality of life. Remembering to take medications at certain intervals is hard. The on/off times can be difficult to manage. Planning your day around your good times becomes very frustrating.

Depending on the stage of life you are diagnosed in, the losses vary greatly but are equally as devastating. If you are younger, it might be the loss of the ability to work due to cognitive or physical issues. If you are older, adding Parkinson’s to other possible illnesses can be debilitating.

Loss doesn’t mean I won’t fight

I don’t have the answers how to cope with these life changes other than to say that I sought out counseling and support groups to help me manage loss. I’ve had Parkinson’s long enough that I’ve accepted that future loss in inevitable and I’ll deal with it when it happens. But, that doesn’t mean I won’t fight it with everything I’ve got.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • SaintPaulGreg
    7 months ago

    Kelly – I just came across this today, and I want to thank you for communicating this so well.

    No one has certainty in their life, of course. But the mercurial nature of PD seems to bring with it a level of uncertainty and anxiety that is hard to manage. Your perspective is a great help to me, and by sharing this piece, I hope that my network will understand me better.

  • KellyW moderator author
    7 months ago

    Thank you SaintPaulGreg! I’m glad that this resonated with you. Thanks for the comment. Kelly, ParkinsonsDisease.net Team Member

  • KellyW moderator author
    9 months ago

    Julnare, I completely understand. I’ve had PD for 16 years and have felt overwhelmed more times than I can count. I also have worked hard at physical therapy and yoga and now karate to stay healthy. I find if I having appointments a lot (otherwise I don’t go).
    As Chris said, support groups are the best way, in my opinion, to help meet other people and talk about what’s happening to you.
    Regards, Kelly, ParkinsonsDisease.net Team Member

  • julnare
    9 months ago

    I want to fight too, but feel overwhelmed with knowing I will not have the retirement years to enjoy myself as I had always looked forward to. Already, my symptoms rob me of much of my joy.

  • Dan Glass
    9 months ago

    My Parkinson’s hit at 45. I live with the idea that tomorrow isn’t a given, so I need to do what I want today. It’s not always easy since afternoon hikes often turn into afternoon naps, but sometimes I find that just deciding to move is enough to beat my apathy / fatigue. Then again, sometimes I still sleep. My recommendation is to seek out new hobbies and the like. Many of my pre PD hikes are now seeing musicals with my wife. There’s a great team of people here who get what you’re feeling. We’re all here for you. As Chris said, there’s lots of resources, but there’s also lots of room for happiness. When I taught, I used to make students list 100 things they valued / enjoyed / were thankful for. I bet if you stop to think about it, that list is still really long. Here’s to the good things in life and better days ahead.

  • chris.hall moderator
    9 months ago

    We hear you, @julnare. It can definitely be overwhelming when something like this alters the plans you had for yourself. As Kelly mentions in the end of this article, support groups have played an important roll in dealing with this loss. If you’d like to find resources near you, The Parkinson’s Foundation has a toll free number to call to help locate these resources here: http://www.parkinson.org/Living-with-Parkinsons/Resources-and-Support/Helpline. I hope this helps! Thank you for sharing with us on a difficult topic. Take care. – Chris, ParkinsonsDisease.net Team

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