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!

Eight years ago, I was diagnosed with Parkinson’s disease (PD) at age 53. I thought I had carpal tunnel syndrome. When the doctor told me it was Parkinson’s disease, I sought a second opinion. I then went to Johns Hopkins and was given the same diagnosis.

My grandfather had PD back in the 1960’s. My mother is 83 and does not have the disease, nor do any of my 5 siblings. In 2003, I went on Long Term Disability after two years because I had a stressful, strenuous job as a manger in a large department store with long hours .

My PD has gotten worse over the years and doctors keep adding more meds and more dosages. I now take Sinemet, Requip XL & Comtan each 4 times a day. I started taking the Requip XL in November of 2008. It was suppose to be the miracle drug, one pill a day lasts 24 hours. Well, I am taking 3 at 8 am, one at 4 pm and one at 8 pm. By 11 pm, I am stiff, cramped and unable to move, much less walk. The good thing about it is that when I was on regular Requip, if I waited too long in the morning before taking my medication, my left arm would go up into the air and unable to bring it down. That has only happened 3 times since I started taking the XL version of Requip. Still my medication seems not to work fifty percent of the time and there is no rhyme or reason as to when they will work or why they will not.

When they work people can barely tell I have PD, except for my legs shaking. When they don’t work, my feet won’t move, sometimes they curl inwards. I get cramped, twisted like a pretzel or a rubber band that is twisted to the point where it’s about to pop. I am also in pain and have the severe sweats. When the meds are wearing off or starting to kick in I do a lot of movement, “I do a little dance”, kick my legs. When it’s trying to kick in I have to walk and no one can keep up with me. Because of all the movement I do I have lost 30 pounds in two years. I’ve gone from 148 pounds and being a size 12 to 118 pounds and being a size 6 or even a 4. I’m 5′6”.

I eat ice cream every night and never spare the junk food. I would like to put 10 pounds back on. I just started taking the Apokyn pen injection at times when my other three medications don’t work. The injection seems to work. I take one or two injections a day but can take up to five a day. The weird thing is I’ve been on Apokyn since April and sometimes I will go as many as six days and NOT have to use the Apokyn. It’s like a miracle. Of course, I still can’t walk during the night or morning until after I take my meds. I manage to scoot to the bathroom when necessary. I tell myself “Left, Right, Left, Right”.

I still paint and that I was something I was afraid I would not be able too. I paint in oil from photos of vacation spots and do paintings to match children’s rooms. You can see some of my paintings on “MySpace” or Facebook. I have been painting since the mid 1960’s while in high school. I was only doing one to three a year, mostly for wedding presents or shower gifts, however I did twenty paintings the first year I was on disability. Since my diagnosis with PD, I have probably painted approximately 120 paintings in my life, probably 70 since my diagnosis. I did a 3 ft x 4 ft of the Thomas Point Lighthouse in the Chesapeake Bay, which was on display at the Washington, DC convention center for the 2006 World Parkinson’s Congress.

Check back tomorrow and all this week for a display of Kris’ paintings and poems!

One of our PJ friends wrote this poem for the Parkinson’s Symposium in Lancaster, SC on Feb. 17. She is sharing it with us. Be blessed!

Whose Body Is This?

By Kristin Railey-Kessling

***

Whose body is this that I live within?

Slow moving, stiff & cramped, it’s not me

How could this happen, it’s a sin

Just let me out, I want to be free.

***

There are times I try to move

But I can’t – I just freeze

If you’re listening up above

Please take away this awful disease.

***

I wasn’t always this way

I once moved with ease

I can remember the day

When they said Parkinson’s disease.

***

I said “Oh no not me!”

My granddad had it

ddBut he was old, I was only 53

Guess what, he was just older by a bit.

***

I will not let PD get the best of me

I will fight it tooth & nail

And one day my body will be free

And I will no longer move like a snail.

***

I don’t pretend to be a saint

But painting is my passion

Will I still be able to paint?

Please show me some compassion

***

I have Parkinson’s disease

I will not let Parkinson’s get me

One day I will move with ease

And my body will be Parkinson’s free.

The following is a letter I received this past week and with permission, I share it with you and hope it touches you as it did me…

I lost a friend to cancer last week. I wanted to share this with you. Everytime someone “passess over,” I am reminded of why we are here in this world…

Not everyone can empathize with what it’s like to have or be a caregiver for someone with a chronic illness; but sadly many can. Whether you lose a friend to or cared for someone with an illness that
had no cure, the feeling of helpless is the same. Your challenge was to make each day for the sick person one of new hope. Saying “time heals” gives little comfort, but being able to hold your head high and say, “I did all that I could,” is a real blessing, although it may not seem that way right now.

The challenge now is for the church to help the caregiver, family member or friend through this difficult transition period. As the Bible says in Galations 6:9: “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.”

Chronic or terminal illnesses can be thought of as the little bit of foothold God allows Satan to have in this life. But in the end, Christ and his followers are the winners. Remember that the Father
had a Son whose whole life was to show us how to live in a sinful world. And I don’t believe it was any easier for God to give up His loved one than it is for us today.

A few years ago a close friend of mine lost his wife to Parkinson’s disease. We went out to lunch shortly after her death, and I could tell he wanted to talk. “With tears in his eyes he asked, “What if
there is no Heaven?” After a few seconds of silence, I replied with another question, “But what if there is?”

We must live each day as if it is our last, because it may well be. The debt for Satan’s presence in this world has already been paid so that we may spend eternity where there will be no more illnesses, no more death, no fear, and no tears. And that expression of love was the best gift to the world yesterday – today – and tomorrow.

Peggy Willocks

Peggy, who has YOPD, is the artist that painted the side of this barn!  You can read more about Peggy here :  An Interview with Peggy Willocks

Sherri's Childhood Snowman

Greetings to my friends who join us at Parkinson’s Journey, a blog site I get to contribute to by way of Sherri’s kindness and willingness to let me share my heart (and frustrations at times) about how PD affects my life and the lives of my family and friends.

I haven’t blogged any recently due to several reasons which you may hear about later, but I thought I would give you a little gift in the form of my opinion of my bloggin’ buddy’s best stuff that I have enjoyed the most in the last year from all 3 of her blog sites.

So if you are new to PJ, or to any of Sherri’s awesome writings of honesty and inspiration at www.sherriwoodbridge.com, www.plantinggardens.blogspot.com, or here at www.parkinsonsjourney.com then use the search function at each site and see if you don’t enjoy my favorite writings of Sherri Woodbridge:

at SherriWoodbridge.com:

Poems:

• Daughter of the King
• Home
• Crazy
• Daily Dose
• This Day

Articles:

• Bittersweet Lessons
• Five Snippets of Advice
• I’ll Have it His Way
• Life’s Disappointments
• Asking Why
• Wonderfully Difficult Times
• Unplugged

at Planting Gardens:

Poems:

• Hope
• The Good Things
• Song of Praise
• I Wish
• I Give Thanks

Articles:

• What God has Done
• Overwhelmed by God’s Abundant Blessings
• Psalms 23 Part 1, 2, 3, and 4
• Value of a Weed

and here at Parkinson’s Journey:

Articles:

• The Heroes Who Fight
• Psalms 23 for Parkinson’s Patients
• Sweet Dreams
• So You Have Parkinson’s Too-Interview with Peggy Willocks

Poems:

• The Whole Story (about Sherri’s first visit with Judy)–a long poem but it does tell almost the whole story!)

And on the sidebar of www.parkinsonsjourney.com, you can find links to read mine and Sherri’s personal stories and interviews we did with each other!

More recommendations soon and a real blog again from me ….. just keep checkin back here….we’ll leave the porch light on and have some oreos and milk close by!!!! ( or M&M’s w/almonds)!

Have a wonderful Christmas if I don’t stop back by before then!

Judy

12/21/09

I received this  from a new friend a week or so ago, who has Parkinson’s disease.  It speaks for itself and you will be encouraged.

Thanks, Tina, for the wonderful gift.  ~Sherri

Hi Sherri,

A fellow person with PD asked if anyone else has felt embarrassed of their PD symptoms in public.  She has noticed that she doesn’t go out in public much anymore for fear of falling or shaking too much, freezing up, ect.  I remember going through a time or two like this and being paralyzed by fear but by God’s grace and instruction I’ve come to the other side.  The following is my response to her and I wanted to encourage others that might be going through the same thing.
I’ve never had the problem of freezing but I have and still do at times shake so bad that it’s like having the blue light special going off over my head. (It’s an old K-Mart thing.)  Anyway, it makes people stare.  I did get to the point where I almost never left the house for fear of my meds turning off and I would become a slow, stiff, shakey mess and it would be a show for people.

What I’ve learned is I am at times a slow, stiff, shakey mess and that’s okay.  When people look at me or stare I will smile and say hi.  Some will ask if I need something to eat and I’ll smile and say “Oh no, I’m not diabetic.  I have Parkinson’s, but thank you”.  Sometimes my meds will turn off and I’ll find a place to sit and rest, take some extra meds,if needed, and often will find someone to have a conversation with.

I had to learn to accept myself just as I am at any moment if I wanted people to accept me.  These symptoms that scared me also scare others because they don’t know what to do.  I had to be the one to say inside and out, “I’m okay, don’t be afraid – it’s just a moment and I need to rest.”  We are what we are and that doesn’t make us any less of a person for society.

I’ve met and had some wonderful conversations with complete strangers because of situations like these.  I’ve come to realize that sometimes it’s not always about me and the symptoms but someone needed someone to come along and sit and talk with them.  Fear and love are very strong emotions, one kills the soul and the other frees it.  It’s our choice to choose the right one.

You are a valuable person no matter what your body does and some will accept that and some won’t but as long as you do – that’s what matters.  Until then, I accept you .     Freezing, shaking, slow and all, I accept you and I’m thankful for you because you add something special to life that no one else does… YOU!

Bless you,

Tina

Okay all of you artsy types, listen up. You’ve got a mission and that mission, should you choose to accept it, is to design a t-shirt for the upcoming PD Awareness Month. So, read the instructions carefully, get out your crayons, pens, and get going. Oh – and have a blast!!!

Enter the Parkinson’s Awareness Month T-Shirt Design Contest!
You Design It!

Each year, April is designated as Parkinson’s Awareness month. How can you raise awareness? How can you enlist others in the fight for a cure?

Help us prepare for April 2010. Enter YOUR design in the Parkinson’s Disease Foundation (PDF) Parkinson’s Awareness Month T-Shirt Contest!

We invite you to submit a design, including PDF’s trademark tulip and yellow and green, that you think will help the Parkinson’s community to spread the word about our cause next April. The winner’s design will be offered exclusively on PDF’s online store and distributed at PDF’s booth at the Parkinson’s Unity Walk in New York City in April 2010.

The winning design will be chosen by the public, who will vote online from a group of finalists in February 2010. The winner will be announced on our website on Wednesday, March 10, 2010.

Read below for more information on how to enter and keep checking the PDF site for more information on getting involved in next year’s Parkinson’s Awareness Month!

Rules & Regulations:

Use a maximum of four (4) colors for your design – no gradients or transparent layers are allowed.
All entries must incorporate PDF’s green and yellow and trademarked tulip.
Keep the design off the seams.
Save the design as a JPEG or PDF at 1000×750 pixel resolution before uploading.
Remember the design must be your own original unpublished work and must not contain any third-party logos, trademarks or copyright material.
There is a limit of one design per person.

Deadlines & Submissions:

The deadline for all submissions is Sunday, January 31, 2010.
All final designs should be sent to pdtshirtcontest@pdf.org.

Judging & Selection:
All entries will be voted upon by a committee of judges comprised of members of PDF’s Creativity and Parkinson’s Project and People with Parkinson’s Advisory Council. After this committee selects our 5 finalists, the general public will vote from the finalists on PDF’s website.

Finalist Selection Committee
Patricia Bissell, Member, Creativity and Parkinson’s Project
Nancy Grandoff, Member, Creativity and Parkinson’s Project and Contributor, PDF Newsletter
Mike O’Leary, Member, PDF’s People with Parkinson’s Advisory Council

Questions?
Please direct all questions to pdftshirtcontest@pdf.org or call (800) 457-6676 with your inquiries.
Melissa C. Barry
Communications Manager
Parkinson’s Disease Foundation (PDF)
1359 Broadway, Suite 1509
New York, NY 10018
Tel: (212) 923-4700/ (800) 457-6676
www.pdf.org

More information: http://www.pdf.org/en/pd_comm_news/release/pr_1254846113