7 posts from April, 2010

PatientsLikeMeInMotion at 2010 Parkinson’s Unity Walk

Posted April 30th, 2010 by

dsc06276Last 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!

dsc06271We 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.

PatientsLikeMe member mcotter PatientsLikeMe member lscanlon


Tell the World: Daddytom Shares His Experiences with Parkinson’s

Posted April 21st, 2010 by

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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2166 (Amy) Where do you find courage?
7453 (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.

2166 (Amy) Who has been a mentor to you?
7453 (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.

2166 (Amy) Do you try to raise awareness about your condition – and if so how?
7453 (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.

2166 (Amy) How has PatientsLikeMe impacted your outlook?
7453 (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.

2166 (Amy) Thank you for all that you’ve given PatientsLikeMe, its members and the Parkinson’s Disease community as a whole!