Welcome to Parkinson’s Disease

Welcome to Parkinson’s Disease

Sherri Journeying Through
I once heard a story about how we make plans for our lives, only to have them overturned. Kind of like planning to take a trip around the world and somehow you end up at the North Pole. This is my version of that story …

Life can be like planning for a once-in-a-lifetime trip around the world. In life, you plan for the college you want to attend. You plan for your wedding. You plan how many children you will have, and more. You can liken it to a magnificent trip to seeing all of the Seven New Wonders of the World.

You’ve scanned the internet for information. You’ve talked to others who have been and you picked their brains. You download all the information you might need, and just in case you’ve missed something, you buy a couple of guidebooks to carry with you. You make all your plans for the places you’ll see: the Great Barrier Reef, the Great Pyramid of Giza, or Chichen Itza. First, you’ll visit the ancient Incan ruins of Machu Picchu in Peru.

Meanwhile, feeling unusually tired lately, you’re counting on being rejuvenated. You count the days until you leave. The last several years of preparation have led up to the moment you’ve been waiting for. Your bags are packed and in the taxi. Everything will be perfect while you spend the next several months, or more, traveling the world.

Tripping as you step onto the plane, you find your seat and settle in. Now, shaking (something you’ve noticed you now do even when you’re not nervous), you close your eyes but find it difficult to sleep, chalking it up to the excitement. Several hours later, the plane lands. You can hardly wait to breathe in the wonderful air of Peru. The pilot comes on the intercom and tells you that you may now take off your seat belt, and “Welcome to Parkinson’s disease!”

“Parkinson’s disease?!” you say. “What do you mean, Parkinson’s disease? I’m supposed to be in Peru!” At least you weren’t re-routed to places with Ebola, the black death, or smallpox, as some were. You are in a different place, yes, but it could have been much worse.

Now, you research for different information for this new season in life called Parkinson’s disease. You must learn a whole new lingo. Things like basal ganglia, dopamine, and dystonia will become your household words.

Of course, this is not what you had dreamed of. Parkinson’s is a place where all other things in your life have been, could be, or will be affected. Your marriage may change. Retirement may come sooner. Your kids may not understand. Parkinson’s disease. It certainly isn’t what you hoped for.

This life you will now live may be slower-paced than that trip you had planned. It may be filled with many unknowns. However, after you have caught your breath and have looked around, you will notice that Parkinson’s has something (in a roundabout way) good to offer.

It affords opportunities to see things differently. It offers the ability to deepen your level of compassion and understanding. It allows you to meet new people you would never have met if you had gone anywhere else. People who have been on a journey with this disease before you: patients, caregivers, movement disorder specialists, and more. It gives rise to a deeper faith.

However, others are busy going to and from all the beautiful places you dreamed of going. They tell you about the wonderful time they’re having, and from now on, you will tell yourself: “Yep. That should have been me.”

The pain of that loss — your dream — may never end. You may never stop grieving for what you’ve lost and continue to lose, for the loss you can experience through Parkinson’s is a truly devastating loss.

However, if you spend the rest of your life (or even a part of it) commiserating that life isn’t exactly the way you had envisioned, then you may never be free to enjoy the very special blessings that this life has to offer. So …

Welcome to Parkinson’s disease.

It’s not what I had planned, either, but here I am. I would much rather have been able to stay on course and make my way to the Seven New Wonders of the World, write to you from atop the Great Wall of China — but, alas, my Pilot had other plans. So, having come here before you or perhaps feeling a bit better than you are feeling, I am here walking with you. Welcome. Together under the guide of our trustworthy Pilot, we will forge through this unplanned journey, and when we get to the end of this road, may it be said of us … “Well done, good and faithful travelers.”

***

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. 

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Sherri was diagnosed with Young Onset Parkinson's disease over fifteen years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids.

12 comments

  1. Glenn says:

    Sherri,
    Great article. I’m newly diagnosed this past November at age 56 and I am having a very difficult time and stuck at “commiserating that life isn’t exactly the way you had envisioned”.

    Would you be able to discuss how you got past this stage?

    Thanks,
    Glenn

    • Mary Lane says:

      http://www.designingacure.com

      glenn, her story really comforted me when i was first diagnosed. she is truly inspirational and we should all follow her exemplary attitude towards this monster! i hope she can help you like she did me.

      i realize you are trying to muddle your way through all this but please know that when i read sherri’s article on monday night; i had just gotten off an airplane from nyc where i signed up for another pd trial that very morning spending more than 4 hours being examined and prodded yet again. all of us are preparing the way for all of the newly diagnosed (you!)

      in addition to participating in clinical trials, i also contribute to mjfox (88% of your dollar goes to research) and
      http://shakeitup.org.au (100% )

      let’s all do our part in finding/funding that cure!

  2. Mary Lane says:

    as always, thank you for a great if not poignantly sad article about pd.

    Glenn and Ian, please realize you are both fortunate (i know that’s ironic) to be diagnosed at a time when the cure for pd has never been so promising. The US, Japan, Britain and Sweden are all preparing to launch stem cell human trials sometime this year! you have to keep your spirits up and do not forget to move, move, move! i was diagnosed 6 yrs ago and have gone on the roller coaster pd ride but because of my faith in God, i can honestly say the ride has mostly been smooth. i sincerely pray and hope the cure – when it comes – will be for all of us especially for all those who have endured the pain and suffering for a long time. once again a reminder to myself and to all of PWP (people with parkinsons) let us keep our hopes high and let’s keep on moving!

    • Great comments. Thanks, Mirabelle. Keep moving, yes, and looking up! I‘ve been on this roller coaster for over 20 years. It can be full of twists and turns but there is hope. Always, there is hope!

  3. Cheri says:

    Keep kicking your own butt to move it, move it! When you don’t want to, kick it again. You’ll be a better person and have a sense of pride. Never endulge in pity and don’t participate in negative,
    “woe to us all” websites. You are a mean machine able to kick PD’s ass.

  4. Glenn Mamary says:

    MaryLane – would you be able to post some links regarding these stem cell procedures? I’m very interested in reading about them.

    Sherri, I sent you an email.

  5. Peter Gamble says:

    This may not be a very popular comment but I’m fed up with the negativity from the PD community. I’m not referring to the people who have commented previously, but the researchers etc.

    When was the:

    1. Last PD drug introduced to the market.
    2. Last time that an article didn’t finish with “but more research/testing is needed”. The decision to take medication should be the sufferers not the doctors. There are dozens of drugs on the market, that have been licensed for use by humans with other diseases. A quick check to make sure that they dont conflict with other drugs and, if no side effects, get them out there.

    I’d be quite prepared to take my chances of something untoward happening, even if it ended up furthering research.

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