I sat in an uncomfortable flower-print chair in my neurologist’s office. The nurses at the front desk were talking to each other about what type of sandwiches they would order for lunch. The background was filled with traces of annoying soft-rock music and an overpowering smell of stale coffee. My name was called. As I sat in front of the doctor, the words “you have Parkinson’s disease” fell from her mouth. I felt nauseous as her words began to mesh together. My vision blurred with hot tears and I began to cry.
I have been asked to describe what it was like to be diagnosed with Parkinson’s disease at such a young age. I have given this question much thought. There are not many situations that compare to the experience of hearing you have a degenerative neurological disorder. As you can see, I can easily describe that moment in great detail, but to actually feel it… much more difficult.
It would have to be a surreal, scary, all-consuming, life-flash-before-your-eyes kind of thing. Maybe it’s like being abducted by aliens, who plan to populate a new world in another galaxy? Hmmmm… nah! Or how about finding out that you are the next tooth fairy, but part of the gig means you will be forbidden to eat sugar ever again? Not even a Skittle. Whoa! I shudder at the thought. Then it came to me. Being diagnosed with Parkinson’s disease feels like being mauled by a bear. There you are, just minding your own business, walking through the forest when you bump into Smokey the Bear and her cubs. Yes, I understand that Smokey was a dude bear, but it’s my story, so follow along.
Now, the bear is mad that you have interrupted her duties nurturing her young and putting out fires, so she’s going to rip your head off. The way we handle this situation is similar to the coping methods used after receiving a Parkinson’s diagnosis.
When being mauled by a bear, one should always remember:
1. Remain calm and don’t run: Your first instinct after recognizing that you are going to be attacked might be to run. This is a common reaction when someone is afraid for his or her life. Many questions can fill your head, such as, “Why me? How could this happen? Am I going to end up in a wheelchair? How will this impact my family and friends?” Much of this fear comes from recognizing the utter loss of control.
2. Know your bear: Knowledge is power. The more you know about your bear, such as what type it is and how it behaves, the better chance you have of making an educated decision on how to handle it. This can include online resources, books and other printed literature, professionals in the field, organizations that provide support, and others who have also been mauled by a bear.
What happens if Smokey is just being a damn diva bear and is planning to attack you regardless of your sweet talk and extensive knowledge of its kind?
3. Stand tall, even if the bear charges: If you can’t get out of the path of the pissed-off bear and it’s clear that she is going to rip your head off, stand tall. Even if you’re terrified, don’t let this bear intimidate you.
4. Make eye contact and firmly yell, “Get out of here, bear…. You’re not mauling me today”: While remaining calm and in control , verbalize that you are not going to be bullied by Smokey. She is not going to hurt you and will not destroy your life. You are a strong, capable person and able to tackle any obstacle in your path.
5. Act aggressively: Stomp your feet and take a step or two towards the bear. Threaten the bear with whatever you have available (stick, pole, rocks…. a small pet).
What if the worst-case scenario has happened…the bear has begun the mauling process?
6. Fight for your life: So, you are being mauled and this is the end of life as you know it. But you won’t go easy! Punch, scratch, eye-gouge, head-butt, roundhouse kick, tackle or choke the bear. Focus on its nose, eyes and other sensitive areas. Do everything in your power to defeat this evil in front of you. Except Smokey’s cubs… they are pretty adorable, even if they grow into killing machines.
*Bear in mind: Smokey the diva bear is actually a metaphor for Parkinson’s disease and getting mauled is receiving the painful diagnosis. Do not use this list if attacked by a real bear. You will get your head ripped off, or at least have to change your pants.
As always you give me a laugh with your story. Although my diagnosis was more of a relief to me, being finally diagnosed at 55 after more than 10 years of trying to find out what was happening to me and glad that it was not M.S. after losing my first wife to that horrible disease, I can still relate to the story, it just happened to me a little later on. Hope things are going well for you and Crash. Keep writing and making the best of life as it is given to us.
Tim,
I’m happy to hear that you like my blog. Thanks for the comment!
Hi Allison: I love this metaphor and can totally relate to it. Picture of bear is magnificent. When I was first diagnosed I only saw the Cubs. They were cute but being Canadian I knew Mama-Bear would be around, and so she was. Powerful story. Casey
Thank you Casey!
hey, it does work to kind of attack the bear. i saw a guy w/ a bear running at him stretch out his arms and growl, and the bear turned away and ran. interesting stuff.
Allison, you always make me smile! I had a really slow Parkie day today and you helped me to get out of my chair and get some fresh air! Thank you!
Cindy, I am so happy to hear that I helped get you out of that chair and get some fresh air… enjoy your weekend!
Yes, you got your smile. Its not the size of this bear that gets me, and it huge one, its just so damn sneaky! I think I figured out a way to duck one blow and “wham” to the back of my head.
Mark, I like that combo move you’ve created…. wham!
Funny stuff Allison. You have laid bare the art of coping with this ruthless predator. PD, not the bear.
Thanks Pete!
Absolutely love your story…. I was told that I had Parkinson’s in January and I’m 53 and very active.
This morning p/d let me sleep till 5am then I read this story and you made me smile 😊
Thank you
Martha, happy to hear my blog brought you a smile. Have a great day!
I love you Perkie Parkie. I really love your work. Blessings.
Adrienne, thank you for your message!
We love the story of the bear thank you for sharing that.
Thank you MaryEllen!
I love your blogs. Always brings laughter.
Enjoy your envening.Sh
Thank you Sharon!
Have a bear hug from me! I was with my husband when he got his diagnosis and I was really fearful that he would freak out… he didn’t. He was just grateful to know why he was feeling the way he was, and relieved that there was treatment available. 😊
Helen,
It can be a relief to know that there is something wrong and you’re not just crazy!
Alison,
As always, good story and a good tips told in a humorous way.
I try to follow many of the tips you mentioned. The main things are to learn as much as you can about Parkinson’s, face it head on, remain calm and be a strong advocate for yourself.
Thanks for putting a smile on my face.
Love your humorous writing skills! Thanks for making me smile.
Allison
Thank you so much for your blog… I hope you know how much you touch the lives of those around you. 5 years ago my daughter was told she had Graves disease, I was told a few days ago that I had ALS- your humor and way you approach life help us both… much love and respect. Thanks
Kathi
Kathi, I am sorry to hear of your health struggles. I am sending you heaps of love and positive energy! Stay strong!
An excellent blog P.P. I always enjoy a good message framed in some humour!
Thanks;
🙂 Ryan
Thanks for the comment and smiley face!
Allison, my amazing friend, I love your ability to bring humor into even tragic stories lake this one that so many of us have had to Iive through. You make me laugh out loud which Is a wonderful thing to do. Thanks for helping to make living with Parkinson’s BEARABLE!
Glad you enjoyed it! Shar-BEAR!
Great blog…. is there comfort in a Bear Hug from me?
Bear hugs are always welcome!