Continuing our coverage of Parkinson’s Awareness Month, we’d like to introduce you to Jim Atwell, a PatientsLikeMe member who has been living with Parkinson’s disease (PD) since 2007.

A retired college professor, late-in-life farmer and weekly columnist for his rural newspaper, Jim recently published his second book, Wobbling Home:  A Spiritual Walk with Parkinson’s.  This meditation on illness and faith looks at Parkinson’s through the lens of Quakerism.  Why does this Quaker recorded minister view the disease as a gift?  What does he wish the public knew about Parkinson’s?  Find out that and more in our interview below.

1.  Tell us about your latest book, Wobbling Home: A Spiritual Walk with Parkinson’s.

Wobbling Home follows on this man of 73′s two definitions: I’m dealing with Parkinson’s Plus and for forty years I’ve been a Quaker (The Religious Society of Friends). My Quaker belief is that my life itself is a gift: precious, freely given, unearned. And further, that everything in my life is a further gift: health, abilities, family, valued friends.  I’ve earned none of these. They’re gifts. And after my initial diagnosis, I came to view Parkinson’s as a gift as well. It’s not one I would have chosen, but I accept it gratefully as the definition of the rest of my life.

And so the book is an attempt to share my attempt to harmonize this progressive disease with my own pilgrim’s progress as I wobble on toward home. I talk about Parkinson’s from the inside, dealing not just with the physical symptoms (lack of balance, shuffling walk, tremors, slurred voice, etc.) but with the perceptual, emotional, and psychological symptoms that recreate our interior lives. And that’s where Parkinson’s and my Friends’ beliefs dovetail together.

2.  In honor of Parkinson’s Awareness Month, what aspect of the disease do you think the public needs to know more about

The general public needs to know of the prevalence of Parkinson’s. Statistics now suggest that one in every 300 of us Americans suffer from it, with an ominous bulge in rural populations, perhaps because of careless use of pesticides and chemical fertilizers. Second, the public needs to know that, though their disease is chronic and irreversible, until its later stages most “Parkies” can live largely normal and often very productive lives.

Third, the general public (and many, many doctors) need to know how subjective Parkinson’s is from patient to patient. In our [local] support group, no two members have exactly the same mix of symptoms and medications. And fourth, the general public needs to know how important it is that they make a place in their midst for Parkinson’s sufferers, and for all with chronic, incurable diseases. To my mind, that’s what  ”treating others as you’d want to be treated” is all about.

3.  You and your wife attend a support group that has both joint and separate meetings for patients and caregivers.  Tell us about that.

Care partners, female or male, are the unsung heroes of Parkinson’s. When our support groups meet, we first have an hour with Parkies and partners together. It’s a how-goes-it session, with each person present saying what the last two weeks of dealing with the disease have been like. Members in each group often learn surprising things about their partners’ dealings with a disease they truly share.

In the second hour, the groups separate. Care partners can then talk together about their own challenges, frustrations, and manners of coping with someone increasing debilitated, both physically and cognitively. (From what my wife tells me, a good amount of healthy venting goes on.) Meanwhile we Parkies are trading notes across the hall. Talk among us is largely of symptoms: who is having plumbing problems, who is dealing with hallucinations, who is frustrated with his GP or neurologist’s seeming lack of understanding of what’s going on INSIDE her or him.

Our group is largely men with a few women; the [partner] support group is largely women with a few men. (Initially we thought we’d have to have an all-men’s support group – how else to talk freely about plumbing problems and the like? We needn’t have worried a moment! Turn out that we’re all rowing the same boat.)

4.  What kind of role does PatientsLikeMe play in your life?

PatientsLikeMe is an invaluable aid to me, and I recommend it to everyone in our group. In fact, it fulfills the same great needs: for good and reliable information but, perhaps more important, for a sense that I’m not alone with Parkinson’s challenges. God bless PatientsLikeMe, its staff, and its work!

Since 2010, April has been designated as Parkinson’s Awareness Month by the US Senate.  The goal is to shine a spotlight on the national impact of Parkinson’s disease (PD), which affects more than one million Americans.  A progressive disorder of the nervous system, PD is often marked by muscle tremors, muscle rigidity, decreased mobility, stooped posture, slow voluntary movements and a mask-like facial expression.

Parkinson’s activists been coming together for the last 17 years for the Parkinson’s Unity Walk, held annually in New York City’s Central Park at the end of April.  (The 2012 event takes place on Saturday April 28th.)  Now, with Parkinson’s Awareness Month surrounding it, there is a month-long effort to raise awareness and research funds.  One of the driving reasons is that PD complications are the 14th leading cause of death in the US.

PD was one of the flagship conditions at PatientsLikeMe, and today we have more than 6,100 patients who report the disease.  What are they doing to cope?  Some of the most commonly reported treatments include prescription drugs such as Carbidopa-Levodopa (Sinemet), Ropinirole (Requip), and Rasagiline (Azilect); procedures such as Deep Brain Stimulation (DBS) and acupuncture; and supplements such as CoEnzyme Q10.  Click on each treatment to see how our patients rate the effectiveness, side effects, cost and more.

We also have an active Parkinson’s Disease Room in our forum, where more than 7,000 patients are discussing 12,000+ topics.  To date, we’ve logged more than 100,000 forum posts about PD!  What are patients talking about?  Some recent threads include:

• Do you have a caring doctor?
• Dealing with sadness and stress
• Knitting:  therapeutic or tortuous?
• The neglected pain of Parkinson’s
• Resigned from my job today

For more insight into living with PD, stay tuned for our interview later this week with PatientsLikeMe member Jim Atwell, author of Wobbling Home:  A Spiritual Walk with Parkinson’s.

Last weekend, we headed to New York City in great anticipation of the 2010 Parkinson’s Unity Walk held each year in Central Park.  We were excited once again to meet members of Team PatientsLikeMe, a group of patients who travel from across the country to meet one another and work tirelessly to raise money each year for the walk.  Team PatientsLikeMe raised $13,000 and came in as #13 of the Top 25 fundraising teams for the 2010 Unity Walk.

This year, some of the team members were reuniting at the walk after meeting at previous Unity Walks; others were meeting for the very first time.  The experience was inspiring and energizing.  What we were able to see first-hand is how consistently and plentifully patients share – both online and off.  In addition to sharing their health data and lives on PatientsLikeMe, we see how they also share their families, their stories, their dreams of a Parkinson’s-free future, and, at this unforgettable day in Central Park, their unwavering commitment to helping patients just like them.  Representative of the thousands of patients in our communities, members of Team PatientsLikeMe are full of hope and inspiration and plenty of energy.  We chased any person sporting a blue PatientsLikeMeInMotion t-shirt up and down “Find a Cure Boulevard” as they met other patients, registered at information booths, and took in the scene.  It wasn’t always easy to keep up!

We finally pulled the team together (with the help of Team Captain, Pokietoo) as they posed for a team photo for the Unity Walk staff.  As we do each year, we took the opportunity to get some pictures and video of the team sharing their thoughts about living with Parkinson’s and their experiences on PatientsLikeMe.  Here’s a glimpse of a short video with Pokietoo telling us about the power of the patient voice.  Be sure to also check out this video of members of Team PatientsLikeMe sharing their thoughts about living with Parkinson’s disease.

Thanks to Team PatientsLikeMe for opening your hearts, your arms and your lives for us once again this year.  Thanks to our partners at the Unity Walk for creating such an amazing event for patients and research.  And thanks to all of you who share every day in our communities.  You truly inspire us.

To continue our series in honor of Parkinson’s Awareness Month, here’s another interview to bring you “the patient voice.”   We recently featured this interview with three-star member daddytom in the April edition of our Parkinson’s Community newsletter. Read on to learn what he has to say about finding courage, recognizing mentors and raising awareness about the disease.

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	(Amy) Where do you find courage?
	(Daddytom) I don’t know if I have ever really thought about where I get courage from.  Tough question.  I find courage from several sources.  One is my faith in God.  I believe he is always here with me and only wants the best for me.   Can he cure Parkinson’s disease? Yes I believe he can.  Will he cure Parkinson’s disease?  I do not think so.   I think we are all given different trials throughout our lives.  And how we handle these trials makes us either stronger or weaker.I also get courage from my bride of 30+ years.  She is my best friend and confidant.   I can tell her my troubles and cares and she will listen.  And I get my courage from my support group and from PatientsLikeMe.   There is always someone facing worse circumstances than me.  And if that individual or individuals can face their problems and survive, then I know I can overcome my problems and be a better person for it. I also believe you just do whatever you have to do to get a job done.  And some days that has to be broken down to its simplest form, like just getting out of bed and putting one foot in front of the other.  And just focusing on what is directly in front of you.  I try not to worry about yesterday or be concerned about tomorrow.  For all I really have is the present, and it is a gift from God, so I need to use it wisely.
	(Amy) Who has been a mentor to you?
	(Daddytom) I do not know if any one person has been a mentor to me.  There are several folks I admire and look up to because of the way they live their lives and the struggles they have had to overcome in their lives.As far as my life since PD, there are two people who really stand out.  One is my neurologist.  He and I have become more than doctor / patient.  He once said to me that he was “proud to call me a friend not just in private life, but also in his professional life.”   I am not a doctor nor will I ever be a doctor.  But I am working and have worked hard to increase awareness of Parkinson’s disease and its effects on people with Parkinsons (PWPs) and their families in New Braunfels and Comal County.  There are over 250 diagnosed PWPs in Comal County. The other person would be my bride.  She has been my biggest fan and supporter since my diagnosis.  She is the shoulder I lean and cry on.  She pushes me to stay active and involved with APDA and our support group.   She is an emergency room nurse and has spoken to groups on PD and its effects on PWPs and their families.  She is a remarkable woman. And I draw courage from our support group members and from members of PatientsLikeMe.   There are several folks on PatientsLikeMe whom I admire greatly.   I will not mention names since I did not get their permission.  I hope they know who they are.  I have the deepest admiration for their spirit and determination.
	(Amy) Do you try to raise awareness about your condition – and if so how?
	(Daddytom) When I was first diagnosed with PD, my neurologist wanted me to attend a support group in San Antonio.  It is about a 50-mile drive to the support group.   I was still employed and working 65 to 75 hours a week.   So on my one day off I was not going to sit and listen to all “of those sick people complain about their problems.”In December 2006, I was forced to retire.  My doctor told me there was no reason for me not to go to a support group, and I still flat refused.   After much pushing and prodding from my doctor and my bride, I literally woke up the morning of July 1, 2007, and said I would not go to San Antonio to a support group, but I would start one in New Braunfels.  My thoughts were to get a support group going and then very quietly disappear after a couple of months. On the last Saturday in July 2007, we had our very first Comal County Parkinson’s Support Group meeting.   We had six attendees.  Of those six only my bride and I are left.  We have grown from that first meeting of six to having 118 PWPs, their spouses and caregivers registered with us.   Today we have grown from one meeting on the fourth Saturday of every month to having two meetings a month.  We meet on the second and fourth Saturday of each month.   On the second Saturday of the month, we have a discussion meeting with an average of 12 attendees.  And on the 4th Saturday of the month, we invite a speaker and average 40 attendees. In April 2009, our group hosted their first annual Parkinson’s Awareness Picnic.  There were over 100 people who attended, and it was free.  This April 10, 2010, we are having our Second Annual Parkinson’s Awareness Picnic, and as of April 1st, we have 83 folks signed up for the picnic.   And we are having several PatientsLikeMe members (PLMers) from different cities close by coming to our picnic. I find that very exciting.  The picnic is open to all PWPs, their spouses and families and caregivers and to anyone interested in Parkinson’s disease. In October 2009, we had our first Parkinson’s Disease Symposium.  The weather was thunderstorms, rain and cold.  We still had 89 attendees for the symposium.  The symposium lasted half a day and lunch was included and it was free.   We are already planning our Second Annual Parkinson’s Disease Symposium for October 9, 2010.  We have already booked our keynote speaker. In 2009 and 2010, Mayor Bruce Boyer of New Braunfels issued a proclamation declaring April as Parkinson’s Disease Awareness Month for New Braunfels and Comal County. In March of this year, we were granted a provisional charter from APDA to form the Comal County Chapter of APDA.  I find this very exciting.  I believe in APDA’s motto “Help ease the burden…find a cure.”  I personally believe that today, it is more important to “help ease the burden” through education and support. What I believed would be a chore and a labor has become a true labor of love.  I thank God everyday for the Comal County Parkinson’s Support Group and its members.   After almost three years, on the Saturday mornings of our support group, I wake up with the same excitement a small child has on Christmas morning.  I know of no other way to explain the passion I have for Parkinson’s disease, APDA, and PatientsLikeMe.  If I can help make one person’s life a little easier for something I have said or done, then my life has been successful.
	(Amy) How has PatientsLikeMe impacted your outlook?
	(Daddytom) Are you picking on me with the tough questions?  I cannot say enough about PatientsLikeMe.  At every support group meeting and every time I get a chance, I talk about PatientsLikeMe.  I joined PatientsLikeMe in November 2007.  I sort of lurked around the edges until August of 2009.  Then it was like the dam broke.  I started reading and posting and reading and posting and reading and posting.  I began to pay attention to what people were posting.   Not just about their symptoms, but about their concerns and fears and how this thing called PD affects their everyday lives.  I was hooked and am still hooked.I love my support group and all of the people in it. But on PatientsLikeMe, I can receive help 24/7, 365 days a year.  I am never alone.  Through private messaging, the PLMers I spoke about earlier have helped me maintain my sanity, they have let me cry on their shoulders, and they have allowed me to rant and rave if I needed to.  And today they still love me. They have given me hope when I believed I was hopeless.  Because of PatientsLikeMe and ALL of the members, I have learned more questions and more treatments to ask my doctor about.  PatientsLikeMe helps me help my doctor stay honest. When I am in that “I don’t give a damn” state of mind I know I can log on to PatientsLikeMe and everything will be okay.  All of this is before we even get to all of the great tools on PatientsLikeMe for tracking my PD symptoms and treatments and comparing them to other PLMers.   How can I ever find the words to thank Ben, Jamie, and Jeff for developing and believing in PatientsLikeMe?  There are no words to describe all they and the staff at PatientsLikeMe have done for me and for all of the members of PatientsLikeMe.  All I can say is “Thank You” to Ben, Jamie, Jeff and all of the PatientsLikeMe staff for helping myself and all PLMers live a better life.
	(Amy) Thank you for all that you’ve given PatientsLikeMe, its members and the Parkinson’s Disease community as a whole!

The PatientsLikeMeInMotion sponsorship program has been a tremendous success so far this year! Sponsorship requests from members participating in nonprofit events are flying in by the second from all over the country.  It’s exciting to see our members are as active offline as they are online about raising awareness of their condition.  The PatientsLikeMeInMotion program gives members the chance to show their PatientsLikeMe spirit, meet and connect with new people about their condition, and, as we like to say, Tell The World about their experiences.   It also allows PatientsLikeMe to give back to our 3-star members for all the sharing that they do.

Since April is Parkinson’s Disease Awareness month, we wanted to highlight one particular PatientsLikeMeinMotion team from our Parkinson’s community.   This  “Team PatientsLikeMe” has been together for 3 years and will once again join hands (and feet) for the Parkinson’s Unity Walk this Saturday (April 24^th in New York City).  As we continue to get pumped up for this year’s Unity Walk, check out this great video from past events and hear community members “Tell The World” about their experiences with Parkinson’s Disease and PatientsLikeMe.

At PatientsLikeMe, thousands of patients are uniting online to share health data, find patients like them, and to learn from one another.  Since this is Parkinson’s Awareness Month, we wanted to highlight an off-line event that also represents unity – aptly named the Unity Walk.  The annual event, which takes place next weekend in New York City, brings together more than 10,000 Parkinson’s patients and their families to educate the community and celebrate the great strides made in funding Parkinson’s research.

As in the past, our very own group of patients will be walking at the 16^th Annual Unity Walk in Central Park.  Led by pokie too, the 30+ person Team PatientsLikeMe will be gathering in New York to meet one another and to raise money and awareness for Parkinson’s research.  As part of the PatientsLikeMeInMotion program, we are happy to once again sponsor this year’s team.

Want to learn more about the Unity Walk?  Listen in to our latest installment of PatientsLikeMeOnCall podcast series where Aaron Fleishman gets the scoop from Unity Walk Executive Director, Carol Walton.  They discuss walk details, Team PatientsLikeMe, and what the walk has been able to accomplish for Parkinson’s patients.

Can’t get to New York for the Unity Walk?  No sweat.  Tune in to see PatientsLikeMe via webcast starting at 2:30pm on April 24^th.  Let’s keep spreading the word about Parkinson’s and wish good luck to our very own Team PatientsLikeMe.

What better way to kick-off 2010 Parkinson’s Awareness Month than to bring you “the patient voice.”  At PatientsLikeMe, we believe in getting to know the person, not just the “patient.”  That’s why we interview patients each month in our newsletter to find out more about how they approach life.   We recently featured englishtutor, a three-star member who shared her tips for staying motivated and thoughts about her Parkinson’s disease.  Here’s what she had to say…

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	(Amy) What keeps you motivated?
	(EnglishTutor) I wish I could say that I am highly motivated and I get on with my day with great interest and gusto, but as we all know, getting into that “Oh,-boy,-I-can’t-wait-to…” zone is not always easy.But to be candid, I am determined to look and feel as good as I can for as long as I can, so I am eager to do those activities (walking, weight training, stretching, dancing) that are so helpful in relieving PD discomfort. I am grateful for the people in my exercise class at the gym who are congenial, funny, supportive, and nice, and we spend our class time together grunting, gossiping, griping, and guffawing. Having fun is truly motivating.I have nine step-grandkids who think I’m pretty cool – and I want them to go on thinking that. So I continue to see the humor wherever I can (which always makes me feel better), keep as up to date as possible with what the grandkids are into (we are all Facebook connected and I can text message on my iPhone with one finger as fast as they can with two thumbs), and continue to dress well and wear makeup even when I’m at the computer all day. (Putting on eye shadow and mascara is a bit of a risk, but I persist.) My students (see question 3 below) also keep me motivated. Their successes are mine as well, and as every teacher knows, there are few experiences as heady as the moment you realize that a student finally “gets it!”
	(Amy) Who do you admire and why?
	(EnglishTutor) I admire people who – by sharing their time, wealth, knowledge, experience, and/or expertise – make a genuine and sustained effort to improve the lives of others. Bill and Melinda Gates are at the top of my list.
	(Amy) How has your condition affected your work life?
	(EnglishTutor) Parkinson’s hasn’t stopped me from my writing and editing work or my teaching. While I can’t really handwrite any more, I can type comfortably enough using an ergonomically designed keyboard, although I’m down from 120 wpm (no errors) to about 70 wpm (with lots of errors). The good news is that using a keyboard gives my stiff fingers a good workout, so at the end of a writing session, they feel fine! I edit PDF documents easily with Adobe Reader.I am an ESL publishing consultant, and because traveling to an office is no longer an option, I attend meetings with clients electronically through face-to-face video chats. I am also teaching English online using Skype and iChat. I have students worldwide, and I still feel very connected. (Thank you, Steve Jobs!)I am the expert in a Literacy Volunteers of America “Ask the Expert” forum for my county. Again, this is all done through the Internet. And in my spare time (what’s that?), I’m writing my memoirs, which my husband’s printing company will publish (or else!).
	(Amy) What’s your favorite aspect of PatientsLikeMe?
	(EnglishTutor) There are many “favorite aspects,” but the most salient one for me, epitomized by the apt name of this group, is the comforting knowledge that each time I log on, I will meet people who truly know what it feels like to wake up in the morning, struggle out of bed, slowly straighten up, stretch, pause for balance, and take that first step. Somehow just sharing knowledge and experiences with people at all stages of PD tends to lessen the severity of this disease for me and, I hope, for them.
	(Amy) Thank you so much for sharing, EnglishTutor!

Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community?  We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on!

The PatientsLikeMe Parkinson’s community has come a long way since it launched in April 2007 – topping more than 3,400 patient members in just 24 months.  Our community members share so much about themselves on a daily basis – from details about how they manage their condition to their personal experiences and stories.  Why share?  Simply stated, to learn more about themselves while helping others better understand this condition.   In the spirit of awareness and sharing, this month we’ll share with you some of what we’ve learned so far from these inspirational individuals and keep it real with some personal patient stories about living with PD.

Additionally, later this month, PatientsLikeMe is once again sponsoring the Parkinson’s Unity Walk (www.unitywalk.org), “the largest single-day fundraising event for the Parkinson’s community.”  The event, which brings together thousands of people touched by Parkinson’s, takes place every spring in New York City’s Central Park.  PatientsLikeMe members from all over the U.S. will once again be meeting in New York to walk together as a team.  (Check out some of our onsite interviews with PatientsLikeMe members from the 2008 Unity Walk and keep an eye out  for 2009 highlights).

Stay tuned for more from us as the month unfolds. Until then, what else is happening this year for PD Awareness Month? Share your events or PD news in the comments below!