10 Hidden Thoughts a Parkie Has

10 Hidden Thoughts a Parkie Has

“I wonder how fast my Parkinson’s will progress?”

The fear of the unknown is a difficult pill to swallow. How do you prepare for a future that is unknown? You can’t, but this can bring on many worrisome thoughts.

“How did this happen to me?”

Number one question that every Parkie has to face…how or why did I get Parkinson’s disease? While we might have ideas of what triggered a neurological condition such as exposure to pesticides or chemicals, trauma, head injury or just plain old aging…it can be difficult to pin it all on one incident. As for why? The one thing I can say is that you didn’t do anything to bring Parkinson’s onto yourself. You‘re not being punished. You’re not unlucky or cursed. It is what it is.

“Am I going to look like that?”

Many newly diagnosed Parkies avoid going to support groups because they don’t want to see how bad it can get. But no two Parkies look the same. We are like snowflakes… we’re all unique in how Parkinson’s impacts us. But that doesn’t prevent the urge to compare.

“When will they find a cure for Parkinson’s?”

The million-dollar question. And I wish I had the answer.

“Do I have my pills with me?”

Every Parkie at sometime has had a little freak out when they realize they don’t have their Parkinson’s medications available to them. For this very reason, I have stashes of Sinemet in my purse, gym bag, car, work, wallet, on my dog’s collar… you name it and I’ve probably hidden pills in it.

“Why do I feel so tired?”

Although it’s easy to think of someone with Parkinson’s as lazy, feeling tired can be a very real thing. Fatigue is a symptom of PD, not to mention apathy and depression, which can both lead to lack of interest or motivation to engage in activities.

“Looking back at my life, I can see I had Parkinson’s way before I was diagnosed”

Once all the puzzle pieces are in place and you get an official diagnosis of Parkinson’s disease, many times you can look back and see symptoms that you had no idea stemmed from PD. Maybe you had rigidity but you chalked it up to tweaking your shoulder while you were gardening last week.

“I used to be able to do ____”

Fill in the blank… readers choice. You can’t help but think about what you used to be able to do prior to getting Parkinson’s disease.

“I am not crazy”

With the multitude of layers that Parkinson’s can have, it’s easy to feel as if you’re going mad. Then top this onto trying to explain what is happening to your body and mind to a family member or friend, and you’ve got yourself a one way ticket to crazy town.

“I am a burden”

This is usually a hidden thought that we place on ourselves without validating it. But remember that a burden is something placed on you, not something that you choose. Your friends and family are choosing to be there for you. You are not a burden.

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 (10)
  • avonladydc
    8 months ago

    Oh oh I just realized I sent this twice! Sorry!

  • avonladydc
    8 months ago

    Oh gosh! I just finished reading on the ten thoughts a Parkin had! I want to say that I have had and still do have those thoughts but finally reading it here just put it more into perspective for me I have only been diagnosed about two years but I think deep down I kind of knew before the doctor told me it has been a hard pill for me to swallow that thus is what I have I guess now I need to just pull up my boot straps and just learn to deal with it I tend to feel sorry for my self at times

  • avonladydc
    8 months ago

    i too have swallowing issues also coughing and constantly clearing my throat it’s frustrating and irritating to me can honestly say that I worry about other people being
    Irritated by this as they listen to me I’m just wondering do any of you feel like this?

  • EugeneAtwood
    8 months ago

    So, “tough pill to swallow” in the first sentence sorta seemed not the best turn of phrase to me. Maybe many with PD DON’T develop difficulty swallowing (including meds) as their disease progresses as was the case with my father. Just seems a bit insensitive, but how can someone with PD be insensitive toward others with it?

    And, just curious, how long has the term “Parkie” been used? People are comfortable with that, I’m gonna assume. Does that term help informalize the discussion so that people can comfortably talk about their PD?

  • Allison Smith author
    8 months ago

    Hello Enguene, Yes, you’re completely right that not all people develop swallowing issues. We are all unique in our experiences with Parkinson’s disease and this is just an expression of the frustrating symptoms that I personally deal with.

    As for the term Parkie, I use this as an endearing, caring and respectful term. There are other terms used to describe People with Parkinson’s, PWP, Parky’s, YOPI’s, etc. When you have Parkinson’s, you become a member of a special community and I see using “Parkie” as a way of embracing each other in our group of shared interest. Thank you for your comment, it’s nice to hear other’s experiences.

  • KellyW moderator
    9 months ago

    Great article Allison! Thanks for sharing! Kelly, ParkinsonsDisease.net Team Member

  • Allison Smith author
    9 months ago

    Thank you Kelly!

  • Michael Church
    9 months ago

    I love the one about stashing PD meds in Crash’s collar. I can remember a long time ago when (we were very financially challenged) the end of the month meant refill time but we would literally go on a scavenger hunt for dropped medication. Sofa cushions, drawers, under the recliner, even in between the seats of the car. We have since learned to work with our pharmacist on an emergency basis.

  • Allison Smith author
    9 months ago

    That is great that you have a good pharmacist…. it can be really important in a time of need!

  • denimarie07
    9 months ago

    hiya fellow parkie travellers, I can relate to going on a scavenger hunt for the odd dropped tablet Michael! I also now have a wonderful relationship with my pharmacist so the medication supply isn’t as much a stress situation as it use to be. Remembering to take them with me when I leave the house even if I am going out for 10 mins because you really can’t be sure if it will be only 10 mins. It has become a family ritual even our pet galah asks me DO YOU HAVE YOUR PILLS?

    Allison I enjoy your posts so much, for me your first point is so accurate, the consent change to my body is hard to come to terms with. As is meeting other Parkie folk it can be a little intimidating. But what I have notice when a group of Parkie folk get together there’s so much to share re medication, whats working for them. As I live a long way out of a town and no longer drive, the next best form of catching up is the 3W Love your work Allison

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