I recently traveled to New Jersey and was a guest at the home of Eileen “Strong Feather’ Colon. It was a great joy to meet Strong Feather again and to meet her family and some of her friends who support her in her endeavors with the Regulars. It was a great privilege of mine to meet the founder of the Regulars, Enzo Simone, at Strong Feather’s home. Enzo is an amazing person whom I admire for his passion and commitment to ending Parkinson’s disease (PD) and Alzheimer’s disease (ALZ). His mother has ALZ and his father-in-law has PD.

(This is written as a parallel to a blog article “Friendships” posted on Jan 3, 2009 on 10mountains10years.blogspot.com by Strong Feather of the Regulars. “Friendships” was written a year ago but it all will always ring true.)

Friendships

It was a year ago exactly, that I was surfing the net and came across a group of regular people that caught my attention. I didn’t know anything about them, but I was intrigued when I discovered what they were up to.

They call themselves the Regulars. For those of you not familiar with this group, they are a team of ordinary people, on a quest toward a great purpose. They are determined to bring awareness to Alzheimer’s and Parkinson’s disease in order to find a cure.

The group, founded and led by Enzo Simone, began its quest in 2006. A Trail Called Hope was born out of Enzo’s desire to see Parkinson’s and Alzheimer’s disease conquered by bringing worldwide attention to help in finding a cure. His method? Conquering one mountain at a time for the next ten years and forming an ever-changing entourage of members who climb with him each year.

Several have been invited to climb, but not all are able. If physical limitations don’t present a barrier, then the work it takes to just get to the trailhead itself may hinder a wanna-be Regular. In Enzo’s words, “Becoming one of the Regulars is not a flight of fancy and will require you to work hard in more ways than you can imagine. You will promise yourself and others a number of things by becoming one of the Regulars.”

What exactly are those promises? Enzo calls them the Regulars’ 11 Commandments, making it clear what is expected from each team member. Some of them are:

~You must be willing to fund raise.

~You will be willing to make many sacrifices.

~You must be willing to raise awareness.

~You must be willing to pay your own way for all expenses.

~You must be willing to share your experiences with others.

~You must be willing to promote the need for not one, but BOTH Alzheimer’s and Parkinson’s to benefit the Alzheimer’s Association AND Michael J. Fox Foundation – Team Fox.

~Although the following is not a requirement, it is usually best if Alzheimer’s has impacted your family (or Parkinson’s) so that you have seen the devastation first hand and can tell others through your own experiences with these diseases.

Raising awareness and funds for Parkinson’s and Alzheimer’s disease is not just an agenda for Enzo. It is also a personal quest. He sees the devastation it has caused in members of his family. He knows of and has lived within its consequences with loved ones – first hand. However, because of the trail he has chosen to walk, he has seen and/or met hundreds, if not thousands of others who have been affected by these diseases. He knows their struggles, their dreams, and often many times, their hopelessness. However, Enzo’s motto: In the quest to conquer Alzheimer’s and Parkinson’s disease, we were born to end this! In living his motto, he in turn has revived hope in the people who are afflicted with these diseases.

In his latest climb, he and his team conquered Mt. Kilimanjaro in July of this past year. The climb was filmed and sections of can it be seen in the upcoming documentary, 10 Mountains 10 Years, which is being produced by Back Light Productions. The movie’s introduction is done by Leeza Gibbons, narrated by Anne Hathaway and Bruce Springsteen has contributed his time and talent to the project as well. The film festival locations and dates, however, have not yet been released. This is currently the Regulars’ largest awareness project/fundraiser they’ve currently got in the works.

Their next climb? What originally was to be Aconcagua in Mexico, the Regulars have taken a side trail and substituted “The Army of Change” Mount Washington project in New Hampshire to their list of mountains to conquer.  This ‘little jaunt’ was added for the benefit of those who are fighting for a cure for Alzheimer’s and Parkinson’s disease and are unable (for whatever reason) to conquer an Everest or a Mt. Hood but want to participate in some sort of climb. Because of the magnitude of interest the Regulars are stirring, they hope to get at least a thousand advocates climbing Mt. Washington together this summer. (If you would like to be a part of the Mt. Washington climb taking place on July 31, contact Enzo Simone at the Regular’s website 10mountains10years.)

As I said, it has been almost a year since I first heard about the Regulars. Within that year, they have raised thousands of dollars to find a cure for Alzheimer’s and Parkinson’s disease. Within a year, they have climbed a minimum of 19, 341 feet – the height of Mt. Kilimanjaro. Within a year, they have brought considerable attention to their cause – a quest to end these two diseases. Within a year, they have given hope back to those afflicted by two debilitating diseases and enabled them to dream once again because of the attention this team of regular people are bring to these diseases.

If you’d like more information, you can visit their website above or find them on their Facebook page, 10 Mountains, 10 Years. Perhaps within a year, we’ll have witnessed history and seen a cure finally found for Parkinson’s and/or Alzheimer’s disease. Now, wouldn’t that be a mountain top experience!

I am excited to introduce you to Lori Saviers, another member of “The Regulars”.  You’ll remember that I was able to meet Strong Feather Eileen of the Regulars , and recently I have had the opportunity to chat with Lori on Facebook. I asked her if she would let me interview her so that we could all get to know more about her and share here with you on Parkinson’s Journey.

Lori lives in Columbus, Ohio, and tells how she came to be involved with the Regulars.   Believe it or not, she actually met them on a mountain!

I would like to thank her for graciously allowing me an interview.   I hope you enjoy gettingto know another person who is making a difference as one of the Regulars!  Be sure to take note of Lori’s nickname as one the Regulars… it’s cool!

Enjoy – Judy

Editor’s note:  I was going to publish this in parts due to its length.  I decided to leave that up to you, the reader, if you’ve like to read it in parts and come back to it.  However, let me say that after reading it in its entirety, you won’t want to stop reading until you’ve read the complete interview.

This is one of the best that we’ve presented.  You will truly be inspired.  Let us know if we were right.

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Welcome to Parkinson’s Journey, Lori!  Have you climbed mountains before going to Mount Kilimanjaro this summer? How long have you done this and how did you become interested in it?

One of my dearest friends (Margie) moved to the city of Mt. Shasta CA in the early 90’s. If you’ve never seen Mt. Shasta it is one of the most beautiful mountains, ever (aren’t they all ). Anyway, we climbed “around”, hiking in the area for years, and one day I finally said – “Hey! I think I’d like to go to the top! She was very encouraging, although had no interest in joining me. (She has asthma, which gets really bad around 9000 ft). I didn’t make it that first time — only got to 10,500 ft (Shasta is 14,179).

I saw Mt Shasta earlier this year as Sherri and I traveled from Oregon to Northern CA–it was breathtaking!  A truly magnificent sight!  So, how do you train for your climbs?

Mainly – as much hiking as I can. For my second climb of Shasta, I started in January, on a treadmill – every day.  I increased the incline, the time, and the weight in my backpack until I was at 15% incline for 90 minutes with 30 lbs. I decreased the speed as I increased the other variables – from 3.5 mph to about 2.0 mph. This process took 6 months.  I was at maximum for about 6 weeks before the climb.

Now I try to mix it up more. I wear a weight vest (max 40 lbs, I usually use only about 25 at the most) and hike, backpack, and do spinning classes. Just about anything cardio and for building leg muscle.

Which climb is most memorable?

Really, Mt. Hood! There was the blizzard, the 2nd attempt, the fact that actual summit day the weather was perfect – and, meeting the Regulars on top! (see below )

That sounds exciting to hear about!  Have you ever had a climb that was disappointing?

That first climb of Shasta. I really had no idea what to expect. I went with a climbing buddy and I had to give in from exhaustion at 10.5K feet. We ended up bivying up there around 9800 ft and he did summit the next day, leaving camp around 4 am.

During his climb, I went all the way back to the trailhead with most of the camp, drove the car down the mountain into the town and got Burger King, and hiked back up to camp and waited for him. I told him he’d better be back by 4 pm ’cause I was NOT going to call his parents (solo mountaineering really isn’t a good idea).

So I sat there in a camp empty expect for the tent, his sleeping bag and a bottle of water. And reflected on my failure while I waited. It was very motivating for the training for the next climb. (He had chicken nuggets when he made it back. I couldn’t have been happier to see anyone).

I can imagine!  In one of Enzo’s blog’s he talks about you meeting two of the Regulars on a climb in 2008…tell me about it in your words.

Climbing Hood with a partner.  We were driven back on July 4 by the same blizzard that sidelined Enzo and most of the Regulars. We had planned a couple of extra days in case of weather, so we went down and dried out all our gear and went back up the next day.

We bivied at around 9000 ft (rather than making the climb in one day all the way from the bottom), so we didn’t even have to start early – a normal alpine start is somewhere around 11 pm – 2 am.  We hung out and started climbing around 5 am. A few hours into the climb, we ran across Regulars Brett and Troy (who has Early Onset Parkinson’s Disease [EOPD]). My climbing partner is a nurse so was interested in talking with Troy about his Parkinson’s Disease (PD). I was mostly interested in my granola bar .  Anyway, we got to the summit and we were the only two up there.

A few minutes after we arrived, here comes Brett and Troy! Well, they stared unrolling these Alzheimer’s  Association and Michael J Fox Foundation (MJFF) banners and were trying to take pictures. By this time I ’sort of’ got what they were doing.

It was clear that the banners were too large for one to hold while the other took photos. So, I offered to take the photos. While I was not climbing Mt. Hood WITH the Regulars – I was actually on Hood at the same time and took the only photos that remain of that summit (in some mishap, all of Brett and Troy’s photos/film were lost – I took a few with my own camera).

Anyway, had their photos survived, that probably would have been the end of it. BUT – I was interested in the shots and kept going to the Regulars website to look for them. I read more and more, and finally emailed “the webmaster” (who turned out to be Enzo) and we started up a dialogue.

So, that’s how I came to be a part of the Regulars and why Enzo calls me “Premonition”. He says I was my own Premonition – being a part of the team even before I knew what it was.

That is such a cool story!  Do you have any family or friends with Parkinson’s disease or Alzheimer’s disease (AD)?

A couple. A man at our church has PD, he is probably the person I am around on the most regular basis (he’s in church most Sundays). I never knew him before PD, so I can only imagine. His wife (who I’m on some teams with at church) tells me he used to run marathons. He does have difficulty communicating, so you can imagine that I have a hard time talking with him. I can’t tell if he is struggling, in pain, or only finding it hard to respond. I wish I knew how better to interact with him.

I have another friend – a former co-worker – who has EOPD (Early Onset Parkinson’s Disease). She is about our age (maybe a few years older) and diagnosed when she was about 40. She was a huge cyclist (like, 100-mile rides every weekend) and just so active and athletic. She is too determined of a person to lie down and give in to PD, but I know she’s pissed off. I know I would be. I’m sure you are.

My mom’s brother’s wife (my aunt by marriage) died OF Alzheimer’s, WITH Parkinson’s. I guess it is not uncommon for people to suffer from both. Her AD made her quite unpleasant, and her PD was very painful and debilitating. It was a devastating experience for my uncle. He died a few years after she did.

My grandmother died of complications of Alzheimer’s. She lived with my parents the last 9 months of her life after my Grandpa died. Honestly, she was sort of a gruff and demanding woman. In her declining time, she became childlike and very sweet. It really is a testament to the differences in the ways these diseases manifest. Grandma died a few days after her 90th birthday. I think she was happy with her life. She missed my Grandpa terribly. I’m happy they are together again.

You mentioned working.  What kind of job do you have?

I’m in purchasing in the chemical industry. I’ve been in this industry for most of my career, starting out in purchasing, then going into sales for a long time. Now I’m back in purchasing – smarter I hope! I sure wish I had more time off!

I worked in the chemical industry, too!  I have to admit those people in purchasing could make nightmares for us in the lab, but overall they are all right to know – most days, anyway!  So – what do you like to do to unwind?

I love to garden, but don’t do it as much as I’d like. I obviously like climbing, and everything that goes along with it – hiking, backpacking, and just being outdoors. We live on 6 acres and have quite a bit of the property maintained in a “natural” state.

We are a National Wildlife Federation certified wildlife habitat. We have so many birds and critters and butterflies – it is wonderful. A friend started keeping bees on our property this year. I love it.

My other big love is libraries. I’ve always wanted to be a librarian, and in fact completed most of my coursework for my masters in library and information science a few years ago. It’s just hard to step out of a more lucrative career to work in that field. I hope to retire early from my present work and actually work in a library for a few years.

You and Sherri would hit it off in no time.  She loves gardening and books!

Editor’s note:  Yeah!

So who has been the most influential person in your life?

Teachers.  Several of them. My education has allowed me to do so many things that I would never have dreamed possible. My parents were always very encouraging, but neither of them went to college so they were, I guess, sort of inhibited about encouraging me. Really, they just didn’t have the experience to share.

So, I had all these great teachers, starting in the 2nd grade…junior high…high school…and a few special professors in college who really helped me to understand what I could do. It’s a wonderful circle, because I truly think that I was the sort of kid that teachers ‘like’ to have for a student.  I was pretty much willing to do whatever they said! And I learned! Very gratifying for the teachers, and obviously they shaped my life to a large extent.

The best part is that when I am with my parents, I still feel like I’m 12 sometimes. They look at me with shining eyes; and I know they are proud. It doesn’t get any better than that.

I can agree with you wholeheartedly on the great teachers I had, too!  Tell me what it’s like when you get to stand on the summit of a mountain?

More humbling than you might think. I think it is easy to imagine being “victorious”.  You know, ‘Yeah! I came, I conquered!’  But it’s really not like that. You get up there and you are just in awe. It is SO beautiful. You are SO tired.  And a bit anxious…you still have to get down! Mostly, I just think I feel gratitude. So very grateful that this experience can be a part of my life. Wow. Little ‘ol me. It’s humbling.

Okay, Lori – I just have to know.  What do you think of ‘da Coat?

Now, I am very serious about this. I really, really like ‘da Coat. When I first saw it (online), I think I had the reaction many people probably have – Yow! ‘Ya gotta be kidding!  But over the time leading up to the climb, I began to understand the meaning of ‘da Coat, and how it could serve as sort of a metaphor for just the outrageous action that needs to happen to put an end to PD. And when I met ‘da Coat in person, let me tell you.

It was at Horombo Hut, the last real overnight hut on the mountain. We were in the hut, and I asked Eileen if I could see it. She had sort of been keeping it under wraps, to sort of “unveil” on the summit. Well, it was cold in that hut, I will say, but the warmth that I felt when I put on the coat was not from the fact that it really is soft and cuddly.

Judy, I could feel the love in that coat, I could feel the energy of all of the people who’ve worn it. I could feel your sweet self and the power you create by traveling all over the world in the guise of that coat. That coat is magic, girl. It is special. As are you.

Now I know why I like you so much! Thank you Lori, for that kind compliment.

When you tell someone about the Regulars…what question do people ask you most about the mission/the team?

Mostly technical questions really, about the climbs, and climbing in general. People do ask my why I’m doing this. After all, I can, have, and probably will climb other mountains not related to this cause. But this means so much more – it connects me with a purpose that is so much higher than my own personal entertainment. I feel like maybe, in a small way, I could make a difference. In the words of a song I really love, “I’m ready to use the gifts I’ve been given, to make this world a better place to live in.” This is something I CAN do. So I’m doing it!

You may not know how much those of us living with PD and AD appreciate your efforts, but we do.  Now tell me one funny thing about Enzo, and one other person that climbed Mt. Kilimanjaro.

I hope this doesn’t fall into the category of “you had to be there”, but honestly this was so crazy-funny.

When we all arrived in Africa, one of Jen’s bags didn’t make it. Unfortunately, we had to go off on the safari without it being recovered. It had her climbing gear and some of her filming supplies, so it was critical for the climb.

During the safari, she was spending a bunch of time using Enzo’s cell phone to call the insurance company, the travel agent, the tour operator, etc. So there we were, on the safari. Enzo’s in the vehicle I’m in and Jen’s in the other.

Just as we were watching the lion and lioness make a kill (probably THE most exciting thing on the safari…they were just outside our vehicle, about 7-8 feet away), Enzo’s phone rings. He answers it, whispering.  When he realizes it is someone calling about her luggage, he says in his best “secretary” voice:

“I’m sorry; Jen can’t come to the phone right now. She is in another Land Rover and there is a lion eating right outside, and she can’t come out. Can she call you back?”

Seriously, I thought Eric and I were going to die laughing. Right there.

Next is…Jay. He is so hilarious. He arrived a day late, having missed his first flight. So we picked him up after day one of the safari. I’d never met Jay. I’d only seen photos of him on The Regulars site and heard a bit about him. So, there is a photo of him doing some rock climbing, and he’s this big, strong, athletic-looking guy. I really thought he was a REAL climber (as opposed to me).

So, he gets in the truck and everyone starts talking. I don’t remember exactly what I said, but probably something about him being a climber and he says (paraphrased), “Me? I’m no climber! The only thing I ever climbed were the steps in Philadelphia that Rocky climbed in the movie! And I was out of breath at the top!”

I really thought he was joking – took him a few minutes to convince me. Well, climber or no climber, Jaydragged himself to the top of Kili. Whether he was a climber or not when he arrived in Africa was irrelevant. He’s a climber now. 

Briefly describe your impression of the climb up Kili – the most impressive thing, or the most memorable.  You pick.

The most impressive thing about Kili was its size. Hands down. Every single mountain I’ve been on just seems so incredibly massive – even Hood, which really isn’t all that big.

When you are on a mountain, you look across a vista and say — hey! I think I’ll go over there to “that ledge”. When you start walking you realize there is a gully the size of a football stadium between you and the ledge, and the ledge is 3 miles away. Take that feeling and multiply by 10 and you get Kilimanjaro.

You know that little bit of white (snow) you can see in most of the photos – that is on the left, as we approached the mountain?  Well, that is not snow.  It is ice. It is the glacier. And when you get up on top and are walking around the rim, you are to the inside of that ice. And guess what — there is a gully the size of Memphis between you and that ice and it looks like it is a couple of miles away.  From the bottom, it seems to be snow that you might even be walking on. Not. It’s just SO massive. I think a person could walk for their entire life and never see that entire mountain. Remember, we walked up the “tourist route” . THAT is supposedly the easy way!

Tell me about the picture of someone you took, with you at the top – where you had the drawing to pick a winner.

I received a donation on my MJFF page from a tmanogue@xxxxx. Well, I ‘knew’ a Tom Manogue, but he died in 2005 of pancreatic cancer. I worked with Tom; he was the QA manager at our plant in Wisconsin. When I saw the donation, it really spooked me. I thought about it for a few days, asked a few people if Tom had any sons (no…he had only daughters, which is what I remembered).

So I sent an email to the donor’s email address, thanking them for their donation, saying that I had known Tom, and asking if they were somehow connected to Tom. Well, the response was from Tom’s wife. Her brother, who also works at the plant, told her the info about my climb, and she was moved to a very generous donation to the MJFF. She told me that her favorite uncle had died from PD, and that he was a strong man who used to run Clydesdales in competition. She said that she was heartbroken as she watched him succumb to PD. She told me that she knew Tom would have supported me, wished me luck and told me that she knew that “Tom would be waiting for me at the top.”

There were about 160 individual donors to the two causes, all of whom were entered into the drawing. The editor of my local paper drew the winner. When he read out Tom’s name everyone there was confused as it slowly dawned on us what had happened. Because of fate or luck, or something else I think I will call God, a man who left his physical body in 2005 would now be climbing Mt. Kilimanjaro. Yes, his wife got me a digital photo and I had the banner made and carried it to the top. Enzo and Jen held the banner up while we took photos of Tom’s image under the Uhuru Peak sign. Tom climbed Mt. Kilimanjaro. Take that, Pancreatic Cancer!

That is so awesome!

Okay, lastly, what would you tell someone to help them to decide to participate in the event Enzo is planning for Mt. Washington in 2010?  Can anyone participate?

I will steal Enzo’s words (he’s so good at it:). This is an opportunity for your OWN personal Everest!  Not everyone could climb Kili, and most people probably wouldn’t enjoy the undertaking of most of the other mountains on the list. But guess what? Mt. Washington is a real, honest-to-goodness respected mountain, and if you can walk, then you can climb it! Whether you go up a path, a trail, or the road, YOU TOO can summit Mt. Washington and be a part of this effort. This is YOUR opportunity to make a difference. That is exactly the point of the Mt. Washington climb; anyone can participate. And everyone should. You are going to be there, right Judy?

I hope to!  And I hope some of you reading this might want to be part of an army of change, and experience the power of, “Together is one!”

Thank you Lori for the awesome interview!

Thanks for joining us!

I will ask for forgiveness first and give you fair warning. The following is a conversation I had online with a dear friend who has had PD about the same length of time as I have. We share a similiar passion for photography and have met a couple of times in person, but have had an ongoing friendship online for around 5 years. We recently had a conversation in a private chat area. I asked her for permission to use portions of our discussion here in an effort to try and help others understand a little bit about living life with Parkinson’s disease and the rest of stuff life can often shove in your face. I hope none of this offends anyone. I have no such intentions in sharing this conversation, other than to give people (my family, my friends, the public, and anyone who will care to listen) a glimpse into the heart and soul of two women who find a way to somehow uplift, encourage, rant, rave, gripe and just have a heart to heart about some burdens they share and maybe, just maybe, somewhere along the way someone else will see the need to keep funding research, to keep fundraising, to keep the hope for a cure alive. That is my intention here.

The following conversation may be discouraging to some, but I feel strongly the need to share it. I have tried to remove all personal information that might directly link my friend’s identity, whom I will call ‘Leslie’. She is a person to be admired and applauded for her outlook on Parkinson’s and her willingness to share our talk with you.

I thank my dear friend who shared this conversation with me and has given me permission to share on this blog site our recent talk we had early this morning.

To read the conversation, please click here.

I’m glad to have helping me today blog about this issue, my very rational and upward thinking good friend from Washington, Jeanette. So here we go…

Media is a means of communication that reaches or influences people widely. Typically in the form radio and television, newspapers, and magazines.

The national media should take note! We’re tired of reading and hearing about all the celebrities deaths, divorces, and dalliances. Are there not more intriging, pressing, vital and ground-breaking issues to report????

For example….have you read anything about some real heros climbing a mountain in Africa because they have a passion about curing 2 diseases? If not, go, read, and be inspired by real regular people who give something back to their fellowman at www.theRegulars.org!

Or how about, scientific advances in medical research that can transform lives of people all around us? If we put the same effort effort into saving the industries that our economy is so dependent on, into saving peoples lives who can further impact other lives, more than our pocketbook might be enhanced.

We are entranced by the insignificant, and disinterested in the vital. Oprah, Jon & Kate, cellulite at the beach, peeks into where we should never be…that is where we are. Are these things really going to make a difference in anything?

Our hearts and minds are facing the wrong direction–inward for selfish reasons instead of inward in a search for our meaning and purpose in life. So many sit and think ‘the other guy’ will make the difference for them. Then one misses the spark that ignites the flame, which provides a fuel to keep on facing challenges, and brings a warm comfort that our souls desire .

So what we do to make this different? Make a decision, stop being spectators..find a passion that will impact more than your life, and go at it with every thing you got! It may not seem like enough to make a difference, but it will!!! Your life could be news to another. It could be media with meaning.

Your choice: accept the media madness or find your meaning and purpose…create your own news.

Judy & Jeanette

The following is elaboration on a page at the  www.theRegulars.org website entitled “And then there’s you” and has been used by permission from Enzo.

If you’ve read the feature here at Parkinson’s Journey about Eileen Colon of The Regulars you might realize that we can’t all be a ‘Strong Feather’ but you might have been inspired by Enzo’s vision for The Regulars and are wondering “What can I do?”. If so, then that is awesome! But you might be sitting there thinking “I’m ‘regular’ but think climbing mountains in not possible for me.” Don’t give up yet…. if you think hard enough then you’ll find some significant way to help no matter how big or small it is! We would like to encourage you to think about these things:

Enzo has said “If you’re anything like “the Regulars” you know that doing nothing is the perfect way to get nothing done. Thinking that someone else is taking care of the problem is taking far too much for granted. The greatest of all journeys starts with one step.” WOW!!! Let that sink in a minute and then do this:

Break this down…..the smallest step might be as simple as talking to people. Anyone and everyone. Think about all the different ways there are today of doing that….write letters, email, blog, talk in the hallway or over lunch, via blackberry, schoolmates, and on and on. You can take the first step by enlightening people with your feelings and experiences. Others may not understand the gravity of these diseases. Think of what you know personally about PD or ALZ. You don’t have to be an expert in the vocabularies of each of the illnesses. Tell others how you feel about the illnesses … how they have impacted your life and those of the people around you. If you have a friend or family member with one of the illnesses explain to others what you see the patient and family having to deal with. If you are a person with one of the illnesses tell your story, how you were diagnosed, how you cope, your hopes and your fears. Tell your friends that you want to do something to help, and that you’ve found a group who is paving a way to donate and support both of these causes. Tell them a little about The Regulars. You might say, “I can’t climb a mountain, but I can help them and my friend by making people aware of their efforts!“ Tell them how ‘Together is One’ makes great sense and by many doing a small part like donating to the Alzheimer Association or to the Michael J Fox Foundation through The Regular’s website then they have joined in the effort to help find a cure for one or both of these illnesses. And if they can’t donate, ask them to kindly tell another person about what The Regulars are doing.

Spreading the word is very important!

Spreading the word about the illnesses is one way of being proactive and doing something positive. You might want to go a step farther and particpate in a fundraising activity yourself (besides climbing a mountain). You might take part in one of the Alzheimer’s Memory Walks or the Parkinson’s Unity walks in your area. Take my word for it, you are not an island alone in your experience with these diseases. In taking that first step, you’ll find yourself in good company swimming in an ocean of people trying to do exactly the same thing – Conquer and cure these diseases. Or you might be creative and organize your own function or event. When you’re excited about doing your own special awareness & fund raising project you’ll be far more driven to make it a success.

And keep this in mind… if everyone does a little, much can be done. You don’t need to be rich. You don’t need to be well known. You don’t need a reason to do something good. Just try…go for it! ..Find your own summit to conquer for one of these illnesses. And… always know there is great power in this thought: “Together is One”

If you’ve decided to join in this effort, let us know. We’d love to hear about your experience, and thank you from our hearts for making a difference!

Judy & Sherri

Eileen “Strong Feather” Colon will be traveling to Africa at the end of June with the group ‘The Regulars’ to climb Mt. Kilimanjaro to bring awareness to Parkinson’s Disease and Alzheimer’s diseases.   ’The Regulars’ are members of TEAM FOX and accept  donations for the Michael J. Fox Foundation through links from their website http://www.theRegulars.org/.   Judy had the honor of meeting Eileen and having her speak at the NE Tennessee Parkinson’s Support Group in Johnson City, TN on May 23, 2009.  Here, Judy writes to feature Eileen as one of the people making a difference in the lives of people affected by Parkinson’s disease.

How do you describe an amazing spirit of one you have so recently come to know? I’m not sure how, but I want to try and tell you what I think makes Eileen “Strong Feather” Colon such an amazing person. I think the thing most people would realize upon getting to know her is that her heart’s priority is giving to others. Even if she were not a part of The Regulars (group of individuals led by Enzo Simone to climb mountains to help find a cure for Parkinson’s and Alzheimer’s) you would have to say there is something different about her.

Eileen is 51 years old, has 5 sons and 2 grandsons. You’d think she’d be a real toughie, bringing up that many males, but she is a wonderful caring mom and grandmother like all other fantastic moms are (mine included), and is very proud of her family. On top of that, she cares for several preschoolers in her home. This part of Eileen is amazing in and of itsself to me! Add to this… she has taken martial arts for 7 years (something she could do with the boys, she says!) and has participated in several charity efforts for MS and Breast cancer and now for PD and Alzheimer’s.

When I first read about Eileen I thought to myself, “she is a 51 year old woman out to show the world she’s super-woman (just like I’d be wanting to do if I didn’t have PD) by climbing a mountain”…but she’s not. She’s not out to prove she’s superwoman, she’s out to prove “together is one”.

I guess the thing that has appealed to me most about The Regulars is that they are putting forth this effort for me and millions of others. They are taking on a huge challenge each year—personally and for others, many whom they don’t know. All this, in an effort to make a difference in potential cures for two illnesses. I don’t know if they feel this way, but in my mind if cures are not found for PD or AZL then maybe at least some kind of benefit will come from research that can be used for other illnesses.

In probing Eileen as to why she became involved with The Regulars, I found out that she does it for a friend and for her children’s future. She has a friend involved in martial arts, Jim Breener, who has PD and she wanted to do something on his behalf. She also does this to honor her parents for whom she was care-giver before they both passed away. She considers that a defining chapter in her life. She climbs mountains so her children or someone else’s children might not have to watch their parents endure these illnesses. Ironically neither of her parents had PD or ALZ but she looks at her effort with The Regulars as a place to start and make a difference in the challenges for cures for these two illnesses.

Eileen has been transformed, I can tell, by her commitment and involvement with The Regulars. She is likely a quiet personality upon whom her family depends greatly. With The Regulars she has learned to depend on others as she takes one step after another upon the mountain. With them, she has found a new part of herself.

Each person with The Regulars has a personal stake in the climb, their own health, their own goals, and their own character. But I believe the greatest benefit of this effort is the fact that their individual efforts, pooled together, is what pulls them upward and beyond obstacles. And that’s the same way it is for those of us with chronic illnesses—we can’t do it alone. It is a team effort. So also is the journey for a cure. No one person will find the cure– it will be generated through the efforts of many, some taking many steps, others a few, but each step, each effort,,, counts.

Do you think the mountain up to a cure for PD and ALZ is insurmountable? I’d say the first time each of The Regulars read Enzo’s mission for The Regulars they probably thought “THAT’S CRAZY!”, but they have all found through the strength of many or even just two, when these strengths are used together,each step is a step forward. Enzo’s saying is simple and yet profound “Together is One”. One mind set, one goal, one step together is something that can never be overcome. It is realized that many steps will be required to cure PD and ALZ. The more who step together… the sooner the goal will be reached through fundraising for research, education, and just plain determination.

And you know what? Regular people have plenty of determination if they are put to the test. Give us an obstacle and we’ll most likely do our best to overcome it. And many of us have learned that most mountains can be overcome with some help from our friends. Friends with many different talents and ways of climbing  utilized together complete a mission.

Those of us with PD and ALZ are prisoners in a way. These people who we are encouraging up a mountain will not take us away but are working to set us free by their combined efforts. The efforts of The Regulars along with those of concerned family members, friends who have lost a friend to one of these illnesses, and our own efforts will not be in vain and they will be multiplied as one to overcome these illnesses.

All this was clarified from speaking with Eileen and hearing her story of involvement. I know this much for sure, she has had a life experience that she is using to spur her on to make a difference in the lives of others and her own children’s future. She has a friend who she has committed to “do what it takes” to help him have a life free of PD some day. If that means climbing a mountain, then she will put forth her best effort to accomplish this. And she knows the power of the saying “Together is One” and that is why she hangs with Enzo and The Regulars. But I think the important thing to know about my friend Eileen is she has a big, big heart—something rare these days. She is compelled on a personal level to help others. She knows she can do something on her own to make a difference but realizes the power of working together with others. I have no doubt if she were not doing something to help me… or you…then she would be doing something to help her neighbor, other friends, or family.

Thank you Eileen for sharing the hope, the challenge, the personal effort that you and The Regulars carry with you as you train and climb mountains for cures. I’m glad I met you and that we are on the same team! World UP!

Judy

Please find our more about the mission of The Regulars and how you can help at www.theRegulars.org

Read the blog of members of The Regulars at http://www.10mountains10years.blogspot.com

There is a song called, ‘Ordinary People’. These are the words:

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.

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,
“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 Alzheimers and Parkinson’s 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” (or, click on the links).

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 PD. “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. Alot of 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 site.

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 PD 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 part of it.

Purchase The Regulars products at: www.cafepress.com/theregulars

Co-authored by Judy Hensley and Sherri Woodbridge