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Archive for the ‘Guest Post’ Category

Finding your empowerment

Monday, February 11th, 2013

In keeping with our theme of “What You CAN Do”, we are deligthed to feature a blog post from Karl Robb, a blogger, Parkinson’s advocate, writer, inventor, speaker, photographer,  and Reiki master.  His new book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease is available at Amazon.com and BarnesandNoble.com in paperback and eBook formats.
Helaine Isaacs
PUW Event Director

Kar Robb asoftvoice_coverThe diagnosis of Parkinson’s disease (PD) at the age of 23 was both frightening and yet, cathartic. I didn’t know what I had but part of me wondered if it might be a brain tumor.  At such a young age, I was unaware of what PD was, but I knew that I was going to have to learn to live with it. My body was out of control. My feet shuffled, my posture was slouched, and my foot began to tremor for no apparent reason.  I received my diagnosis over 20 years ago, after seeing nearly a dozen doctors. Had I known what I know now, I would have taken charge of my illness even sooner than I did.

Throughout my life, I have observed how PD poses unique issues for each individual that is struck with it. My book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease is a lifelong collection of tips, suggestions, and advice that has served me well. There is no doubt that illness limits our capabilities but it doesn’t mean that we don’t have options. Parkinson’s disease changes your life, but it doesn’t have to destroy it.

There is still so much that you can do. A proactive and investigative search into complementary therapies, stress relief techniques, and an overall health regimen may serve you well. What works for one may not be of benefit to another. Finding the modality that works for you is vital to your health and healing. For me, my life changed at the introduction to Reiki.
Karl Robb
Fourteen years ago, I wasn’t looking for Reiki (a complementary therapy using light touch that reduces stress), but it found me. My friend and longtime teacher had just moved his practice less than a mile from my home in Virginia. Someone totally unrelated to Reiki and in another state gave me my teacher’s name. I was reluctant to investigate Reiki because it sounded so new age and indescribable.

Cautiously and a little reluctantly, I went to see what Reiki was all about. When my now teacher and dear friend explained the benefits of Reiki, it sounded too good to be true.  As unconventional as Reiki sounded, I needed something to boost my energy, reduce my dyskinesia, and help me with my balance. I was willing to give it a try with little to lose.

I skeptically got on the massage table (fully clothed) and 90 minutes after my very first session, I was hooked. My body felt lighter, all my stress had faded away, I felt invigorated, and my walking showed improvement. Since the first treatment, I received numerous Reiki treatments and over 14 years, I have trained and learned to work on myself and others. For me, I know that Reiki has allowed me to do so much more. Reiki has not cured my PD but it has quelled many of the symptoms that plague PD patients.

Finding what works for you can take careful and thorough investigation. Therapies like yoga, acupuncture, massage, cranial sacral, Reiki, and others may help you and have little to no risk. Working with your doctor on the medical side and finding a complementary therapy may very well prove that there is more that you can do for yourself.

Karl Robb

Another simple thing you can do: participate in a research survey

Wednesday, January 9th, 2013

The Parkinson Alliance Announces Results from 13th Survey on Speech; Recruiting Participants to Complete Newest Survey on Falls

All about how we started doing studies using patient surveys
Parkinson’s disease (PD) patients have a continuing challenge to improve their Quality of Life and therefore reach out to various sources to help them make the choice about their next step:  more pills, different combination of pills, time interval changes, more rest, etc.  For some, the next step may be a surgical therapy:  Deep Brain Stimulation (DBS).  Traditionally, the two most common surgical sites are the subthalamic nucleus (STN) and the globus pallidus interna (GPi).

In December of 2000, Margaret Tuchman, President of The Parkinson Alliance, had very successful bi-lateral DBS-STN surgery in New York City.  As a result of her surgery, she was feeling better than she had in 10 years, and decided to “give back” to the PD community.  At that time there was no collective repository of information about types of surgery, selection criteria of the patients, or any organized statistical information etc.

The first step was to develop a website:  www.dbs-stn.org and then we started doing patient surveys.  One of the important goals that we set for ourselves was to provide a tool to find a common language among the physicians, carer, and People with Parkinson’s (PWPs).  Our surveys help define meaning, adding language to the feelings and perceptions of the patients thereby helping to facilitate understanding between the patient and doctor, patient and carer, and carer and doctor.

To date, we have expanded our research endeavors to:

  • Obtain a better understanding about the experience and well-being of individuals with PD who have received DBS.
  • Compare individuals with and without DBS in the context of both motor and non-motor symptoms related to PD.
  • We use standardized scales and statistical methods to obtain sound results.
  • As of 2012, we have conducted 14 surveys on topics such as quality of life, depression and anxiety, sleep disturbance, balance, and pain— just to name a few.

We’ve just released our latest report on our Speech survey
Capture5Changes in speech and communication for individuals with PD are common.  The causes and characteristics of speech disturbance in individuals with PD are complex and variable, but there are general patterns of speech changes in PD that are related to and coordinated by an integrated network of sensory, muscular, respiratory, and thinking functions.  The Parkinson Alliance has completed our 13th survey, which focuses on this very issue.  Entitled “Speech in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation” we had 758 participants including both groups— those with DBS— and those without.  86% of the participants of this study endorsed speech problems.  Our study compared speech symptoms for DBS and Non-DBS participants as it relates to disease duration and age groups.

Survey results include the following DBS Highlights:


Our Speech report, as well as all prior reports is available on our websiteWe are currently working on our Resilience report – please stay tuned for that!  

What you can do
Capture2And we are looking for participants for our 15th survey on “Falls in Parkinson’s Disease:  Increasing our Understanding about Falls and Related Risk Factors.”  There is no charge— all you have to do is provide your mailing address so we can mail you a copy, mail it back, and we even pay for the return envelope.  All information is confidential and we are available to assist in any way and answer questions.  Here’s how you can contact us to sign up to receive our latest surveys.

Why your participation is so important
View video

We hope you find this information to be very helpful in increasing your quality of life.

You may also be interested in learning about the results from …
In April of 2009, The Parkinson Alliance (primary sponsor) convened a panel of world’s experts on DBS for PD.  These world leaders discussed current matters related to DBS therapy and where we need to go with this intervention.  The ultimate focus was on improving the effectiveness of the intervention and quality of life of those individuals who have undergone or those who will choose to undergo DBS.  The final report entitled “Deep brain stimulation for Parkinson disease: an expert consensus and review of key issues” has been published and can be accessed on our website.

Carol Walton
Chief Executive Officer
The Parkinson Alliance

Got Parkinson’s? What you CAN do!

Tuesday, January 8th, 2013
Pam Quinn, Mike Achin and Renee Leverrier  at APDA's New England Biennial Conference

Pam Quinn, Mike Achin and Renee LeVerrier at APDA’s New England Regional Biennial Parkinson’s Conference

Recently my wife and I were asked to give a motivational talk at the American Parkinson’s Disease Association’s New England Regional Biennial Parkinson’s conference in Sturbridge, MA. The topic was, “Got Parkinson’s? What you CAN do.” I introduced a video clip we made that played to the song, “He ain’t heavy, he’s my brother.” This was my high school graduation song. I don’t think I really ever listened to the words then. I just wanted my diploma and to start living my life. Today it means so much more. To understand how we got to this point, let’s go back in time a few years.It was the fall of 2009 and I was stunned by my diagnosis of “Parkinson’s disease (PD).” I do not cry very often but that day as we drove home, the tears were running down my cheeks. Are you kidding me!?? I was just 51 years old and I still had a son in college. This surely could not be happening. The truth was, my wife had already diagnosed me. She knew months before my official diagnosis. I did not want to hear it. I lived in denial. So, what if my left hand would not swing while walking? So, what if my left leg dragged a little? So, what if I was losing my balance? So, what if cutting up food and writing was getting harder and harder? It was just age catching up with me. Right??

For me the next few months were horrible. I was scared, angry, and depressed almost every day. I was living my life as if my glass was half empty. Now, let’s fast forward a little. Eventually, I snapped out of my funk and started learning about PD. My wife, through her research, found a walk in NYC coming up called the Parkinson’s Unity Walk. Her hope was that the five of us (we have 3 children, Ben, Danielle, and Zach) would travel to the Walk and learn together as a family what PD was all about. It took a little bit of nudging to get me to go to NYC, but once I said yes, my life was never the same again. Have I mentioned yet how awesome my family is!? Over 50 others joined our family of five in NYC for that first Walk. Our family and friends wanted to support us. They wanted to let us know that we were not in this alone. From that first Unity Walk in 2010, all 50+ in our now signature lime green shirts, Team DominACHIN was born. We were going to fight to help find a cure. To date, Team DominACHIN has raised almost $100,000 for Parkinson’s research.

One of the best things that happened was one day I decided to start living my life as if my glass was half full. I needed to remember that I had a lot of living to do – people to meet, places to go, super bowls to witness, and even a granddaughter to meet (in just a few short weeks!!).

So, now you know why we were invited to speak at the conference. Our message is simple. If we all do some fundraising and talk about PD, we will create a boat load of money for research as well as an avalanche of information to educate the public. There is a saying; “If it is to be, it is up to me.” We all need to find our niche and go for it. Personally, we have found that we can be pretty creative and make almost any activity into a fundraiser. My older son appropriately calls them, “FUNdraisers.”

Washer’s Tournament

  • Annually, we have a Washers Tournament. The object of the game is to toss a 3″ washer in the hole. Teams of two are randomly chosen and by the end of the night, champs are crowned.
  • Each year we hold a raffle and draw the winner in the Patriots parking lot during tailgating. Only 100 tickets are sold at $20 each. We have raffled off a Patriots grill, flat screen TV and an iPad.
  • Even a yearly rock paper scissors tournament which started at a summer cookout at my son’s new house has turned into a fundraiser. He has a local bar as a sponsor for the t-shirts he sells and a Boston bar that hosts it and sponsors koozies for all attendees.
  • Team DominACHIN members have climbed Mt. Washington the last three years.
  • I am a beer pourer at McCoy Stadium. My wife painted me a rock with the Paw Sox logo to hold my tips. Many fans commented on it so I told them they could have it for a PD donation. By the season’s end she had painted many more rocks and I had $250 more dollars for research!

The list goes on and on. Just about any activity can become a fundraiser!

My message to everyone is a simple one. Get involved! I realize that PD affects all of us differently and not everyone can do everything. However, everyone can do something! Do you like to write? Write a blog or an article for your local newspaper. Are you outgoing like me? Go on your local cable TV station to let the public know what PD is all about! Can you walk or use a wheelchair? Find your local APDA walk or attend the mecca of all walks, the Unity Walk in NYC on April 27th. Got family and friends who want to help? You can make a fund raiser out of anything! Collect cans, have a yard sale, host a bake sale at work, etc.

Mt. Washington Climb

Really ambitious? Climb Mt. Washington or try a half marathon. There is a New England Parkinson’s Bike Ride in the fall in Maine. Bikers choose from a 10, 30, 50 or 100 mile course. Besides raising money and awareness for Parkinson’s, your training will get you in great shape! The best thing we can do for ourselves is to exercise.

Got connections? Use them. We asked my friends at the Pawtucket Red Sox for support and this year will be our 4th Annual APDA/Team DominACHIN Night. A PSA on the jumbotron, we all walk on the field, and 50% of the ticket sales goes straight to PD research. You’ll find people are more than willing to help out. Any idea is a good idea. Just take it and put it into action.

Can you imagine if all the members of the Parkinson’s community began bombarding the media with articles and blogs about how PD affects us? We could educate the public and if we all did at least one fundraiser a year, we could raise millions to find a cure!!

I will never stop until a cure is found and I truly believe this will happen in my lifetime. Until then we must continue to raise money and educate the public. UNITE TO FIGHT!! Don’t let PD defeat us; we have to fight back. Please take action now. What a party it will be when a cure is found! If you need help with ideas, feel free to contact me at 508-878-8739, mikeachin@verizon.net or visit Team DominACHIN’s Facebook page.

I hope to meet you all soon!

Mike Achin Team Captain, Team DominACHIN

A new regimen of endurance training, a new movement disorder specialist, and tweaking the timing of medication makes a world of difference

Friday, November 30th, 2012

I had been seeing the same movement disorder specialist since I was diagnosed with Parkinson’s disease in 2007. I approached Carol Walton, CEO of The Parkinson Alliance and Executive Director of the Unity Walk, when I was ready to explore other options available to me in the Washington, DC area. I just turned 40, and I felt like my doctor focused too much on treating me with medication and not enough time looking at my treatment holistically. Carol referred me to a new movement disorder specialist that she described as “no nonsense,” which was perfect for me. I work an exhausting schedule in public relations for a defense contractor, I travel a lot, I’m a stepmother to two beautiful girls, and my hobbies take up the rest of the hours in the day that I’m not sleeping – and I don’t sleep much. So, I was ready for someone to approach my treatment more proactively. Carol’s assessment was spot-on, and I love my new movement disorder doctor.

In our first meeting, she changed the timing of my meds. Not the dose, just the timing. At first, I was concerned about whether I’d be able to stick to the strict schedule. I didn’t think about it long. Within a week, I started sleeping better and my energy came back – enough energy to take on an endurance challenge at my gym. I had read about the benefits of working out, and I’d been a member of the gym for a while. But I finally had the strength to really push myself. And I did. Very, very hard. The results, as you can see in the VIDEO, were stunning – and that’s only six weeks into the program. Today, I’m more fit, stronger, and have more energy than I ever did before.

My goal is to spread the message that you can have a life – a vibrant, healthy life – while you balance the demands Parkinson’s places on your body. Working out, endurance training, pushing yourself to the limits … it’s all about reclaiming what Parkinson’s begins to take away, piece by piece. I won’t always be in this shape, I know that. But as long as I can hold on to the quality of life I’ve been able to achieve today, I’m going to fight for it every step of the way.

Bettina Chavanne Team Captain, Team Bettina

12/17/2012 Update:  Please check follow-up post on Team Bettina’s Blog.
For more information:
Join the conversation about this topic on Facebook.
View Team Bettina’s website.

Studying abroad with a cause

Thursday, October 4th, 2012

Parkinson’s Unity Walk® Volunteer and Fundraiser Studies Abroad with a Cause and Attends EPDA’s First Ever European Unity Walk

Cheers from London!

This past weekend I embarked on a trip to Amsterdam, which is of course an unbelievably beautiful city.  Aside from visiting popular sights such as the Anne Frank House and taking a boat ride on the famous canals, my friend Sara and I had the privilege of participating in a charity walk for Parkinson’s disease, a cause that is so near to my heart.  My grandfather has been suffering from this unbearable disease for over twenty years, and his struggles have inspired my grandmother and I to take an active role in the hope of one day finding a cure.  Over the past few years, we have raised over one thousand dollars through fundraising, and even organizing our own walk.  I have also volunteered at the Unity Walk a few times.  One year, my best friend and I met Michael J. Fox, who has Parkinson’s.

Marissa Walton with her grandparents, Edie and Robert Walton

My grandmother’s accomplishments and mine were recognized with a proclamation from the state of New Jersey, as well as a scholarship from the senior citizen group in my hometown.  However, we did not expect or want any recognition at all.  We just want to find a cure for Parkinson’s to put my grandfather and millions more out of their misery.  That being said, I was ecstatic when I found out that a walk was being held in Europe at the same time that I would be studying abroad in London!

Honestly, taking part in the European Unity Walk by EPDA (European Parkinson’s Disease Association) is an experience that I will never forget.  Not only was it awesome to be a part of the organization’s first ever walk, but it was breathtaking to share this experience with over one thousand people from twenty-five different countries.  I could now say that I was a part of a global community striving for the same goal-to find a cure for Parkinson’s disease.  That being said, I even teared-up listening to the speakers before the walk.  For some reason, I felt such a deep connection with my grandparents, who are thousands of miles away.  We are lucky enough to have such a uniquely close bond, and I appreciate everything that they have done for me over the past twenty years- from sitting through countless dance recitals and going on dozens of shopping trips.  I finally felt that I could give something back to them in return.

Overall, the EPDA did an amazing job of organizing such a large-scale event for the first time.  The day went off without a hitch, and it was awesome to meet the Executive Director of the Parkinson’s Unity Walk, Carol Walton (we are not related, to my knowledge!).  It was very interesting how the walk was set-up through the center of Amsterdam as well, which is very different from Central Park.  There were bike riders everywhere, which kept it exciting!  The walk ended with a huge celebration, and there were even tents with information regarding Parkinson’s disease.  It really did a great job to spread the message as random people in the city even stopped by to see what all the fuss was about.

Taking “my cause” with me on my study abroad adventure inspired me to stay a part of this wonderful community forever.  I know that it is already inspiring my younger brother, who has fundraised over two thousand dollars with my grandmother this past year.  It’s heartwarming that we have now made this a “family affair.”  I actually feel as if we are all one big happy family, and I want to thank the Parkinson’s Unity Walk in New York City and EPDA in Europe for making me feel as if I was a part of their family this past weekend!



Marissa Walton

Parkinson’s Unity Walk Volunteer and Fundraiser
Marist College ‘14