Looking the Part

imageInvisible disease:
A disease that is not necessarily visible to the human eye; hidden; concealed from others.

Parkinson’s disease (PD) can be known as an ‘invisibile’ disease. Because PD is most commonly known to be a disease that is known by tremors in the extremities and shaking. For those that don’t realize that there are some patients of PD who don’t actually experience the shaking or tremors, it can seem the patient is “faking it” or “isn’t that bad.”

Ever heard those comments?…

I have heard of some people with PD who take over fifty pills a day just to feel ‘normal’ and I can assure you that their ‘normal’ is much different than most everyone’s normal. Instead of having obvious tremors in the extremities, a person with PD can experience tremors on the inside, making it even more incomprehensible to someone who doens’t knwo much about PD and assumes you must have tremors to have the disease.

“But I do have tremors,” the patient may defend. “You just can’t see them. They’re on the inside.”

The other person is probably thinking you’re crazy. But it’s true and when I think back to when my symptoms began, I can remember feeling tremors inside and feeling like I was the one going crazy and feeling I couldn’t do anything to make it stop.

“But you don’t look sick,” your friend might comment.

What does a person with PD look like?

Well, one can have brown hair and blue eyes, forty-ish, have tremors and nothing else. One can have gray hair, 72 yrs of age and walk stooped, shuffling their feet, seem a bit confused, have tremors and more. One can be an athlete, run marathons, never seen to have a physical problem in the world. There is a saying, “If you’ve seen one person with Pakrinson’s, you’ve seen one person with Parkinson’s.

When I went to the World Parkinson’s Congress a few weeks ago, I think the thing that struck me most was the diversity how PD affected the people with the disease. No two people wore it the same. I have PD and you’d think I’d not be surprised by that, but I was. But, going back to the invisible disease thought and knowing that PD is an individual disease, you’d think it wouldn’t have surprised me to hear from several other PD patients, “You don’t look like you have PD.”

So I ask again, “What does a person with PD look like?” Maybe I should ask, ‘What is a person with PD suppose to look like?’

Most people would undoubtedly bring Michael J. Fox to mind, using him as the ‘poster child’ for a frame of reference. The only problem is, he kept his disease hidden from the public for a good ten years so while it was progressing for those first years, he “didn’t look like he had Parkinson’s.” He didn’t “look sick.” He didn’t “look that bad.” Maybe he was “faking it.”

“Smile. It can’t be that bad,” I have heard someone say to me. How do you explain to an absolute stranger that you have a disease that takes away your smile and even though you may be overjoyed on the inside, you don’t appear that way on the outside? How do you explain that yes – yes it can be that bad when your meds aren’t working well and you can barely move your back and neck due to the stiffness and pain and you could go on and on but you don’t.

You don’t look “sick” when you are struggling with heart issues, Alzheimer’s disease, a kidney problem, find a lump in your breast, deal with twisted intestines, suffer with hemorrhoids – need I go on? And yet, we can have a bad case of acne, a broken arm, a wound that won’t heal, or a dislocated shoulder and you’re not sick.

There is a crazy misperception that in order to be sick, the rest of humanity must have evidence that convinces them you’re not faking it and it just may be worse than they understood it to be. A disease they couldn’t necessarily see and you, as the patient, may not be able to fully explain.

An invisible disease. A disease that may not look like anything, but if you’ve got it, it’s something indeed.

What Michael J Fox Has In Common with Casey Neistat

img_0001What do Casey Niestat and Michael J. Fox have in common? They have both worn the made-famous-in-Back-to-the-Future-2’s “Nike Mag” Auto Lace Hi-Tops. Granted, Fox wore them longer, but Casey has tried them on and liked them.

When Niestat, who is becoming a name brand in and of himself, returned home the other day from grabbing a Juice Press drink, compliments of a happy follower from his YouTube channel, he was welcomed at his doorstep by a man by the name of “Thomas” who was holding two black bags. Thomas was a big man, sent to make sure the items in those two bags were hand delivered safely into Niestat’s hands.

What was in the packages were the innovative, automatic lace up shoes made by Nike, a replica of those worn by Fox in Back to the Future 2, which was released in November of 1989.

Because Niestat has so many followers on YouTube (coming up on nearly five million), with followers of every age and nationality, every shape and size, Nike most likely thought he would be a good target for reaching a whole lot of people for their campaign, which is a raffle to give away several pairs of these shoes in order to raise money for the Michael J. Fox Foundation.

So Thomas handed over the merchandise and Casey tried on the shoes…

-Gray Hi-tops
-Three little lights/buttons – red, green, and yellow.
-Lace engine fitted into the bottom of the shoe
-Sensor which determines how much the shoe should be tightened with the foot inserted.

Pretty nifty. Casey was impressed.

He didn’t get to keep the shoes but he thoroughly enjoyed the opportunity to try them on for Nike and promote the raffle in order to raise money for the Fox Foundation.

The MJFF is selling raffle tickets on their site for a giveaway for several of these shoes. All money is donated to the MJFF, which benefits Parkinson’s disease research.

The Fox Foundation site probably just boosted their site views just by having Niestat slip his foot into a tennis shoe. Well done, Casey, and – THANK YOU!

Quotes from the WPC (World Parkinson’s Congress)

Tom Issacs from Great Britain, speaker
Tom Issacs from Great Britain, speaker

I love quotes. Good, meaningful, and/or funny quotes. So, going through my notes from the WPC conference we attended this past week, here are some you fellow Parkies may enjoy…

  • When the dance class is in session, there are no longer any patients. There are only dancers. — Anonymous via David Leventhal
  • DBS does not help your thinking, your talking or your walking. – Michael Okun
  • Your brain controls everything about you and we control your brain. -Michael Okun
  • When you have expectations, you set yourself up for disappointment. -Ryan Reynolds
  • Rest is a weapon. – Jason Bourne
  • DBS is like a get out of jail free card in the game Monopoly. The game isn’t over. You’ve still got to roll the dice and keep playing. – Andy McDowell
  • Vitamin D is showing possible protection of cognitive decline. – Anonymous
  • PD registries are needed.
  • PD increases risk of melanoma cancer, breast cancer, and other cancers.
  • Knowledge leads to action. – Jason Karlawish
  • Knowledge is power and you’ve got to want it but you’ve got to know what you’re going to do with that power once you get it. – Karlawish
  • Beware of what you’re learning and what you already know and what you’re going to do with that information.  – Karlawish
  • If you’ve met one person with PD you’ve met one pers on with PD. – Anonymous
  • We need to see PD as a humanitarian problem, not as a disease. – Anonymous
  • This is me walking through life with PD, not PD leading me through life. – Anonymous
  • Live your best – Tim Hague
  • Stay with the race – Tim Hague
  • There’s a win waiting for you somewhere – Tim Hague
  • Accept what your best is on each day – Tim Hague
  • Contentment is an emotional state of satisfaction from being at ease in one’s situation. Learn the art of living your best by practicing the art of contentment. – Tim Hague
  • I will have a beautiful life despite PD – Tim Hague
  • When you’ve got PD, you find out what you’re made of.  – Andy McDowell
  • I need to be bigger than I was when I was big – Andy McDowell
  • You cannot hide and be healthy – Andy McDowell
  • The best medicine is HOPE. – Tom Issacs
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