7 posts tagged “therapy”

Could the Rolling Stones be part of Parkinson’s disease management? (Check out Pamela Quinn’s blog)

Posted April 26th, 2017 by

It’s Parkinson’s Awareness Month, and we’re continuing to find meaningful stories in the world of PD. Did you tune into our recent podcast featuring Pamela Quinn – a professional dancer who’s living with Parkinson’s? She teaches dance classes in New York City for people with PD. Now, she’s taking her dance and movement tips to a broader audience online in a cool new blog (psst – Rolling Stones fans, read on…)!

Pamela Quinn Parkinson's

Some members have noted in the PatientsLikeMe PD forum that they’ve attended and benefited from dance classes for people with PD (even ones that reference Pam’s teachings!). But what if you have PD and live where classes like this aren’t available – or if dance classes just aren’t up your alley? Check out Pam’s blog, PD Movement Lab.

Songs to step to

Pam uses visuals, like photos and videos, in a series of mini-lessons for moving and walking with PD. In one of her first posts, she shows how walking to music can improve Parkinson‘s gait, and offers a playlist of her favorite songs to walk to at varying tempos, including:

  • “Fever,” Peggy Lee (68 beats per minute)
  • “Clarinet Concerto in A Major,” Mozart (94 bpm)
  • “Moon Rocks,” Talking Heads (124 bpm)
  • “Brown Sugar,” Rolling Stones (129 bpm)

(Hint: You can find out the tempo of your own favorite songs using this neat BPM calculator, and then create your own playlist.)

“We can put it back together”

Pam’s blog is all about empowering people with PD to keep moving, although she knows first-hand that it’s not easy (she has lived with PD for more than 20 years).

Dancing for Parkinson's

“Why are we breaking a walk down into all these bits and pieces?” she says in her latest blog post (about arm swing – featuring Judy Garland). “It’s because with Parkinson’s, we lose the ability to move unconsciously. But if we understand how things work, we can put it back together. It may require a conscious effort but at least we have the opportunity to move with coordination, fluidity, skill and awareness.”

Do you have any tips for moving or walking with PD, or favorite songs that keep you moving? Make a comment below!

On PatientsLikeMe, dozens of patients have reported trying various forms of dance to help manage their condition. Take a look.

A note from Pam: The content of this post is intended to provide experiential advice from a fellow patient about ways of moving to help manage your PD. It is in no way intended as a substitute for medical consultation. Be sure to check with your healthcare provider before engaging in any new exercise program. Pamela Quinn or PD Movement Lab will not be responsible for any injury or harm you sustain in performing any exercises or following any advice presented here in. 

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PatientsLikeMe Attends 4th Annual ALS TDI White Coat Affair

Posted February 19th, 2015 by

Back in November, a whole group from the PatientsLikeMe team came together for a great cause and attended the 4th annual A White Coat Affair gala benefiting the ALS Therapy Development Institute (ALS TDI). ALS TDI, founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, is the number one nonprofit biotechnology organization dedicated to developing effective treatments for ALS. All proceeds from the event directly fund the research being conducted at ALS TDI.

The charity gala was held right after ALS TDI’s 10th Annual Leadership Summit, which featured in-depth scientific presentations from researchers and “thought leaders” on scientific developments, the PALS’ perspective and advice from pharma and biotech leaders within the ALS community. For the past 10 years, the Leadership Summit has brought together members of the ALS community for an intimate gathering to connect on the state of ALS research and progress being made toward a treatment.

The PatientsLikeMe team and other attendees traveled to the Westin Copley Place Hotel in Boston for A White Coat Affair and a special evening complete with a cocktail hour, dinner and live music. While there were some lighthearted moments (such as a cocktail called the Mad Scientist) there were also some very emotional moments that reminded everyone why we were there – to raise funds and awareness for ALS research.

Highlights of the dinner program this year included a presentation from Lynne Nieto, husband of Augie Nieto. Augie is Chairman of the Board of ALS TDI and Chief Inspirational Officer for Augie’s Quest, which has raised more than $44 million to fund research at ALS TDI. Anthony Carbajal also gave a powerful speech. Anthony was recently diagnosed with familial ALS at 26 years old and takes care of his mother, who is living with ALS as well. Check out his story if you haven’t already, or visit KissMyALS.org.

570 guests and 20 PALS attended A White Coat Affair for a memorable night committed to raising funds toward ALS TDI’s efforts to develop effective treatments for ALS. To view more photos taken during the evening, visit the event’s Facebook page – and congratulations to ALS TDI on 16 years of cutting-edge ALS research and leadership!

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