Champion, Conqueror, Hero

April 19, 2012 By Leave a Comment

This is a picture of Michael J. Fox. If it is true that a picture paints a thousand words, I truly believe that this is one of the best pictures that I’ve seen where that is true for me.

This picture was taken for Time Magazine several years ago by Ben Baker. It was inserted into an article regarding Fox’s fight for research for Parkinson’s.

I was looking up articles on Fox, always fascinated with him as I watched him grow and go from Family Ties to Back to the Future to now – living and breathing a disease that changed his life.   And mine.

MJF was diagnosed at the age of 30 and while I was finally diagnosed with Parkinson’s Disease at the age of 45, it actually began at 31 or before, when it was misdiagnosed as Lupus, with the possibility of it “becoming a more definitive diagnosis of something else”.

Looking at this picture of Fox, I see myself so clearly. Looking like a normal 47 year old human being, yet in a corner with a disease, a diagnosis, a turn in the path that was unexpected. You are young and yet you feel so much older than you look and at the same time, you can look so much older than you feel.  At least in your head!

Michael’s hand holds him balanced as he sits on the floor.  As I look at his hand, I see stiffness, rigidity and a hand that has a mind of its own. It looks like a hand that has been a victim of a stoke to me, but as far as I know, he hasn’t had one of those. He has Parkinson’s Disease and his hand looks like mine feels.

I sometimes feel lost in a corner, lost in the world with a disease I’m not quite sure what to do with .  A disease that leaves me sometimes wanting to hide in a hole.   Tired, hurting, uncertain – wanting to find refuge where someone might understand for supports sake and not pity.  Looking for a corner where a friend might be found.

I look at this picture of Michael and I see strength and determination.   Qualities I hope to possess.  The quality of strength that endures and fights and a determination that presses on and never quits or gives up.   A calm and gentleness that says “I understand” and  determines that to quit is never an option.

And yet, the tiredness that comes with Parkinson’s Disease is obviously evident in this photograph.  A tiredness that says the pain is real.  The medications are tiring.  The fight is draining.

The good, the bad, the ugly.  It’s all there.  In that picture.  The picture of a thousand thoughts.  A thousand feelings.  A thousand words.

Journeying with you ~

Filed Under: Encouragement / Inspiration / Humor Tagged With: , ,

Somebody’s Fighting for You

September 28, 2011 By Leave a Comment

Sam and Lucy Fox at the California/Mexico border.

In a world where everyone’s trying to make a name for themselves, either through legitimate means or not, there are still a few people who remain heroes, for one reason or another. This is a story about one of mine.

A few weeks back, I introduced you to a man named Sam Fox. No, he isn’t the Sam Fox of Michael J. Fox (his son), but he is connected to the Michael J. Fox Foundation.

Sam Fox’s mother was diagnosed with Parkinson’s disease in 2000. As a way to honor her, to bring awareness to PD, and raise funds for the Michael J. Fox Foundation, he is currently running the Pacific Crest Trail. The Pacific Crest Trail (PCT) is a 2,650-mile national scenic trail that runs from Mexico to Canada through California, Oregon and Washington. The PCT zigzags its way from the border of Washington/Canada, down through Oregon and California to the border of Mexico, boasting the greatest changes of elevation in regards to national scenic trails. It covers desert valleys (think hot) to rain forest weather conditions, to artic-alpine country.

For Sam, however, this run is more than weather conditions, scenic trails, or being one with nature. It’s more than trying to break the world record of making it from top to bottom in less than 65 days. It’s about a cause. It’s about bringing a loud awareness to a disease that ravishes lives in silence. It’s about raising a goal of $250,000 for the Michael J. Fox Foundation for research. Why? His mother.

Eric DePalo, one of his crew members and keeper of the ongoing “Run While You Can” blog said, “I will tell you this: the task that Sam has chosen for himself is a Herculean one as difficult as one could imagine, and more difficult still.  The path is long and storied: up from the ragged spires of the Cascades, down through the lofty and iconic peaks of the Sierra Nevada, and finishing in the waterless outskirts of the Mojave desert in Southern California.  40 miles a day, every day.  Any less means a larger debt to pay tomorrow; any less means the old record will still stand by October’s end.  The trail and her mountains offer no forgiveness, only opportunity.”

However, it seems that as much as Sam may want to finish the trail in record time (which would inevitably bring more awareness to Parkinson’s disease because of the media coverage), obstacles have been thrown in his pathway – like tendinitis in his feet (due to overuse) attacking only short of three weeks into the trail run.

It was a day or two after his injury, after refusing to quit, after refusing to let this obstacle keep him down, his support team’s concern grew. Eric says, “The reason to worry about Sam is not because he lacks knowledge or ability or determination – it’s different than that.  The problem is he’s like a border collie who doesn’t know when to quit playing fetch.   The reason to worry about him is that I fear he might just keep running and running until he drops dead, rather than give up.  At some point, I think, a man like Sam becomes hostage to his own ambition.”

It was the hardest day of his life, Sam told Eric. His rations had run out. The snow was worse than they had expected. Eric says in their online blog, “Sam groaned and grimaced at his feet: ‘I think I got a lot of skin separation down there dude. I’m so afraid to take these shoes off.’”

‘When you have worn out your shoes,
the strength of the shoe leather has passed into the fiber of your body.
He is the richest man who pays the largest debt to his shoemaker.’
Ralph Waldo Emerson

The crew went into action, trying to get Sam down to the RV as quickly as possible, while Sam “shuffled painfully, little exasperated whimpers escaping from him… it was just so un-Sam of him. …after his 66 mile jaunt from the border…cocky as ever. Now he was just so quiet and gentle. There was a powerful new glow of reverence in his eyes….”

When they reached the team’s RV with Sam in tow, it was a few minutes before Sam could bring himself to strip off his shoes.

“I may not have gone where I intended to go,
but I think I have ended up where I needed to be.”
Douglas Adams

Obstacles. Persistence. Pain. Determination. They all serve to make or break a man. Sam’s obstacles, persistence, determination and pain have served Sam well. The realization of completing this trip as a force of one has deteriorated. His own confession of not being able to ‘do this thing for myself [Sam]. It just doesn’t motivate him anymore.

“When you feel like giving up,
remember why you held on for so long in the first place.”
Unknown

So what will motivate Sam to keep on through the bumps on the trail, pulling himself back up when he falls again and does a face plant in the ground? What will motivate Sam when the clouds darken the sky and the rainstorms pelt his body and stream down his face, muddying the path before him? What will motivate Sam when he’s exhausted and tired, depleted of any energy? What will motivate Sam when he puts one worn out foot in front of the other, feeling as if his “foot is being shot with a rifle, one step at a time”?

You and me and others like us. His mother and others like her. The mission of the Run While You Can Organization that Sam founded is to not just raise awareness through this endeavor, but to encourage people with disabilities to live today. To live fully today. To run while you can.

I don’t know about you, but it encourages me that someone else is ‘fighting’ for me. It encourages me to know that someone is being my hands and feet, doing something I cannot do for a cause I care about. Maybe Sam’s doing it for his mother. But he’s doing it for you and me, too.

Journeying with you -

If you’d like to follow Sam’s journey, you may go to www.runwhileyoucan.org. Donations to this organization can be sent to the Michael J. Fox Foundation. All proceeds from this project are being given to MJFF. Go Sam!

Filed Under: Advocacy Tagged With: , ,

One Mountain at A Time

August 30, 2010 By Leave a Comment

10 Mountains 10 Years - The Movie

There is a song called, ‘Ordinary People’, that goes like this:

Just ordinary people,
God uses ordinary people.
He chooses people just like me and you,
who are willing to do as He commands.
God uses people that will give Him all,
no matter how small your all may seem to you;
because little becomes much
as you place it in the Master’s hand.

We’d like you to meet some ordinary, ‘regular’ people… The Regulars.

Their motto:

Leave no stone unturned in the search for cures.  The conquest of Alzheimer’s disease & Parkinson’s disease will be won by regular people like you.  As we say in the Regulars – In this battle to defeat Alzheimer’s & Parkinson’s disease, “the Regulars” did not come to take prisoners. We came to set them free.

A special group of people committing to an epic plan to climb 10 mountains in 10 years to help find cures for Alzheimer’s and Parkinson’s disease are known as the Regulars. You can read about them by clicking on the links and if you are an avid Facebook junkie, they can also be found on MySpace under “Groups” and Facebook under “Causes” .

This year is the fourth year in their projected climbs and in July, they are slated for Africa, destination Mt. Kilimangaro. In preparation, one member of their team, Strong Feather Eileen, says, “Now my journey begins as I continue to clear all obstacles from my path and continue to search inside beyond the physical. Mt. Hood taught me many lessons. Mt. Washington has given me confidence. Mt. Kilimanjaro will define me.”

The team, led by Enzo Simone, began in 2006 with their epic climb up the highest peak in Continental Europe, Mount Blanc. Their travel around the globe, beginning with Mt. Blanc and ending with Mt. Everest in 2015, is called A Trail Called Hope, a campaign started to raise awareness and funds needed to help find cures for those with Alzheimer’s and Parkinson’s Disease.

We strongly desire to let this awesome team of ‘regular’ people know that we support them and encourage them in not only what they’re doing now, but thank them for what they’ve done.

One of the team members, Chadd Tabor, knows first hand what it’s like to live with Parkinson’s Disease. “I was diagnosed with early onset Parkinson’s 3 years ago. I spent most of my time trying to hide it. Now, I am spending my time trying to fight it. When I first started reaching out to fellow PD’ers, several people told me about the Regulars. I read the Bios and watched the videos. It inspired me more than words can explain. Enzo offered me a spot and it blew my mind! Could I climb a mountain? Do I own a decent pair of thick socks? (he he he) Ain’t it cold there? Lions, tigers, and bears. Oh my! How could a guy in my situation, with PD, pass up an opportunity like this? A chance of a lifetime for the fight of a lifetime. Many things can happen to and for me between now and the climb. So regardless of my shaky legs on a mountain or on the sidelines I am thankful for the opportunity to play a part in this amazing adventure. Rock on Regulars!”

You can read more about each member of the team at their website. You can also read about their upcoming climb, A Trail Called Hope – IV and Team Kilimanjaro at their website, The Regulars.

The Regulars are looking forward to a big year in 2009. Enzo Simone says, “Time flies and our project is now in it’s fourth year. We have a dynamic team, and we have raised the bar on what we hope to accomplish. This year Back Light Productions hopes to complete the first of three feature film documentaries to follow our project around the world during our decade long epic.”

Black Light Productions, ‘a Los Angeles based motion picture company that produces stories that enrich, inspire, and dignify the goodness of the human experience’, is chronicling the worldwide epic. 10 Mountains 10 Years, is a documentary feature film following the international team of mountain climbers. As well as tracking ‘the greatest advances and climbs happening in the medical community’, they are also following individuals battling these two diseases with their caregivers in the long term.

“This is a story of hope and of common everyday people coming together to change this world and leave something better behind. A collaboration with the Alzheimer’s Association and the Michael J. Fox Foundation, 100% of all profits from the film go towards medical research and caregiver programs. ” (Black Light Productions)

To help support the 10 Mountains 10 Years feature film documentary, Black Light is offering the awesome opportunity to purchase a “Special Thanks” credit. For $20, your name (or the name of a friend or loved one per your designation) will appear in the end credits of the movie, making you a lasting part of this enormous endeavor. Credit purchases go towards production expenses to make this philanthropic project a reality. You can read more at Black Light’s 10 Mountains in Ten Years website.

Although science and research move forward and chip away at both Alzheimer’s and Parkinson’s Disease, there is still no cure. In this quest, ‘no stone can be left unturned. All must be explored’ (Enzo Simone). The next stone to turn and the next area of exploration: Mount Kilimanjaro – highest mountain in Africa.

They will be traveling June 28th and will start climbing on July 3rd for five days. The team will consist of its Team Lead Enzo Simone, and will include Brett Curtis, Jennifer Yee, Eileen Bencivengo/Colon, Eric Buzzetto, Nadyne Perlin, Margaret Fuller, Lori Saviers, Adam Mitchell, Jaymes Brevard, Bill Glover, Chadd Tabor, Luc Thoelen, and Denise Albero.

On behalf of the entire Alzheimer’s and Parkinson’s disease community, we want to thank all of the Regulars, both past and present for what you have done and continue to do. We leave you with a quote by Enzo Simone.

“Inspiration is the beginning of all my efforts (our efforts). When we feel we can do no more, inspiration is the whisper in our ear telling us to stand up and try again. It can be done.”

Be inspired. Listen to the whisper. Stand and don’t ever give up. Believe in the cause and then… become a part of it.

 

Journeying with you – Judy Sherri

Filed Under: Advocacy Tagged With: