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Archive for the ‘Movement disorder specialists’ 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

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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