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Archive for the ‘One thing you can do’ Category

PUW takes New York by storm (in January)! Thanks to May May.

Monday, January 14th, 2013
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Together with a panel, May May Ali talks about many topics surrounding Parkinson’s on HuffPost Live

One more thing you can do … turn the lights on!

May May Ali and I just returned from a two day media tour in New York City. Our goal was to raise awareness about Parkinson’s disease and the Unity Walk NOW– with plenty of time for walkers to register and raise funds for research, and to reach people who don’t yet know about us. It was energizing and the pace was frenetic! We had a whirlwind schedule, meeting with reporters from FOX 5 Good Day New York, CBS WLNY The Couch, HuffPost Live, FOX News Radio, Better Show, CNN, multiple Sirius XM radio shows, and more. We had incredible opportunities to share our story!

It was a really great few days because we were able to raise awareness for our entire community and because the media was receptive to our passion and cause. They were touched by May May’s recollections about her father, Muhammad Ali, and inspired by her energy to encourage others to take action. May May compared being in the dark about the disease to walking through your house with the lights off. She encouraged all those living with Parkinson’s and their families to “turn on the lights” by educating themselves at the Walk.

When asked what her number one message was, she replied that it ” … would be to please educate yourself on Parkinson’s disease … Try not to be afraid. Don’t isolate yourself, and learn because with wisdom there’s power and empowerment. You will improve the quality of your life … Would you rather walk through your house in the dark trying to look for everything? Or do you want to turn the lights on? … Just get involve and be proactive and get active in the disease and don’t let it overtake you.”  -A Few Moments with May May Ali on FOX News Radio

To those who have not yet heard about our annual gathering in Central Park, our message was definitely clear– the Unity Walk is one thing you can do to take action. It empowers the Parkinson’s community by providing educational information and resources about the disease; creates inspiration by bringing the Parkinson’s community together; and 100% of donations go to much needed research.

We’ve already been invited back to a number of these news shows and several reporters have promised to personally support the Walk. (Especially when they heard it was only a 1.4 miles!) These new contacts have an extensive reach and will continue to help us spread the word about the Walk, raising more funds for research. Our hope is that we are able to reach so many others that will turn the lights on. The more people who join us in the fight against Parkinson’s disease, the closer we will get to our goal of finding the cause and cure for PD.

We had many favorite moments during our media tour, and just wanted to share with you one of them, which is this 25′ HuffPost interview. While we do start off by talking about the Walk, the rest is really informative on various Parkinson’s topics. Please do check it out as it is a great dialogue on many issues that surround Parkinson’s disease. Talked about caregivers, DBS, movement disorder specialists, and the hosts even mentions scurvy and WebMD? Don’t miss this one … and please remember to keep your lights on!

(There are still a handful of interviews that we’re still trying to get a hold of and another set that will be aired at a later date, here’s how you can stay tuned! We’ll update links on this post as we receive them.)

Update: Photos from the day are up.

Carol Walton
Executive Director, Parkinson’s Unity Walk and CEO, The Parkinson Alliance

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:

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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.
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