In their own words

Michael Brookes, a member of the Brooklyn Parkinson Group who takes classes at the Mark Morris Dance Center, talks to WNYC’s Brian Lehrer about why participating in the Dance for PD class was a personal highlight of 2010.

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Patricia Needle, a member of PD Active who takes classes at Danspace in Oakland, CA speaks about her experience as part of KQED’s Perspectives program. Download the text of her program here.

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Quotes from other participants around the world:

“My experiences with this class have played a major role in reclaiming my physicality and mobility from the relentless ravaging of PD. It’s helping me to keep in mind the significance of not permitting PD to define me, but rather for me to shape my own dimension in the struggle to maintain mobility and agility.”

“The music and movement started, I was filled with great joy. I was able to take the whole class and walked out feeling accomplished, encouraged with that passion for dance rekindled. Seeing the class participants enjoy music and movement and benefit from it was so thrilling. I saw the endless possibilities for those with Parkinson’s and for myself.”

“When I first heard of this group I was so touched and surprised that anyone would think of something so magnificent and drastic as trying to teach all of us slowpokes to dance. What a marvel…I had pretty much settled into my life as a wallflower. If there is anything that sidelines you, exacerbates your sense of constriction and inhibition it is Parkinson’s. If there is anything that calls for expression, demonstration, drama, movement, expression and liveliness it is dance. What mad person first thought of combining such dead opposites. I’m awash with curiosity but also with sheer gratitude that they thought of us and made this magic happen. I can’t tell you what a treasure it is, how much it means to me that someone should even suspect us of sequestering ballerinas in our hidden hearts but they do exist and how kind of you to ask us to dance. It truly means so much.”

I want to thank you for teaching the class and sharing your expertise with those of us with PD. I just loved the class. I always wanted to be involved in dance and now I will be able to do this. I did not have to explain to anyone why I moved differently and that was such a freeing feeling. Thank you again for developing this program!!!

“I look forward to this class every other week.”

“The DFPD classes are definitely supportive. Feels good to be with a group of people who share my feelings and concerns.”

“I have been suffering from PD for the last 5-6 years and the left side of my body has been affected esp the left leg and hand. The left side felt heavy and it was very difficult to move it. Doctors suggested physiotherapy, but I heard about the dance class and was interested in pursuing this as I prefer music and dance over just plain exercise.As with regular exercise you feel lazy and tend to procrastinate, but dance and music are both more stimulating. Earlier, people wouldn’t understand my speech but now, after 3 months of regular sessions, it is more controlled and my tongue doesn’t feel as numb as it used to. I move more freely and confidently now. The music rhythm helps me to know when to start, when to stop and i can control my speed of movement. Besides, it has helped my concentration, grasping power and memory thus leaving me more confident. I don’t shy away from using or riding my two-wheeler anymore either.”

“Movement to music is very important to me.”

“It has been wonderful to get out and experience music, dance, and fun.”

“This is a fantastic class that makes living with PD easier for all of the reasons mentioned above. The improvement in mobility and increased energy impact every part of my life. The piano is much appreciated as are the creative, professional, and dedicated dancers who lead the class.”

“It has been great! I have amazing vitality after this class.”

“The classes help me feel physically better, which helps my mood. It helps with my balance and gait issues. I have met many new friends with PD at varying levels of PD. It helps me be hopeful. The PD classes are a wonderful addition to my weekly exercise routines. The classes are a good challenge, but generally within my PD capabilities.”

“After class, I find myself feeling lighter, more present, aware, inspired, hopeful, empowered.”

“I love this class.”

“When I’m in dance class, I feel like I don’t have Parkinson’s any more.”

“I like everything about the class; the teachers, the music, the way it pushes me to do more things with my life than I would otherwise.”

“Before I came to the class I felt alienated from my body. The dance class makes me feel like a dancer because I am dancing.”

“The class provides a feeling that some of my future life incorporates opportunities that will be fulfilling, and therefore empowering.”

“This dance class has nothing to do with PD. The participants are not patients. No one is telling them what they should do, or can’t do because they have Parkinson disease. The focus is not illness; it is living. It is self-expression, human connection, joie de vivre, beauty, love. It’s magic; it’s precious.”

“S. says this class was the most fun he’s had in his 12 years with PD, and that he has not laughed with his wife like that in a long time.”

“D. who is wheelchair bound pointed out to all of us that he actually stood up and “danced! D. also expressed how important this class was, and the joy it brings him.”

“I may not dance well but I can dance. Most important there is a fun way through dance that can make me feel better on a daily basis.”

“During class I feel something like elation. But mostly the good feeling I have before and during class—and it is a good feeling—is the absence of the feeling of discomfort that accompanies the physical symptoms of PD.”

“It’s amazing what people in this class do; I can’t get over it. Who would have thought persons with PD could dance?”

“It’s nice not to be clumsy. It’s wonderful to be in control and be somewhat graceful again.”

“When the dancers move their arms, they look like swans. And you try to do the same.”

“The class helps me think about a certain kind of movement, and explore that movement, that I might not otherwise have encountered just walking around. It shifts my perspective and makes me think about things in an entirely new way.”

“I don’t know if it happens to everyone, but I lose my symptoms when I’m there. And the pleasure of the experience is that it’s not a therapy session. They teach us as if we were any students, and that makes me feel good.”

“It forces me to exercise and get out of the house.”

“The best part of the program was improved coordination and muscle strength and enhancing self esteem.”

“I don’t want to stop the class….keep it going.”

“The best part of the program was the patience of the instructors. They made if fun.”

“I have upper and lower extremity lymphedema—this has been great for my body and balance and coordination.”

“The best part of the program was the diversity and instructors sensitivity.”

“It’s Carnegie Hall compared to Bellevue Hospital.”

“As a PD caregiver I think it helps my afflicted spouse in falling less.”

“I like learning dance from gifted dancers and becoming a better dancer.”

“I like the feeling that we are all working to change the mind set to “Yes, I can do this.”

“The instructors are knowledgeable and very charming. The participants are people I like and respect. People I now call friends.”

“I have always loved dance. Now I am on the “inside” of learning how a dance is developed and prepared for presentation. It is not easy!! But it is interesting and fun.”

“A safe place to be. Welcoming, caring teachers. It’s fun. Helps me focus on taking care of myself. And I learn helpful information from other participants.”

“The staff believe dance can help people with PD and take that and us seriously. I don’t always feel like a patient but a person who happens to have PD, and can still have fun and enjoy life.”

“It beats going to the gym. It makes me feel alive and forget my limitations because of PD. It is easy to follow the instructions. I have fun, love the live music and the dance teachers are fantastic!”

“The live music is especially freeing.”

“The instructors are very knowledgeable about their bodies and very subtly help us to exercise all parts of our bodies and make home practicing easier.”

“I like the fact that we are actually dancing. I’ve always loved to dance and this helps me return to a skill I had lost since developing PD.”

“I like to find reassurance in my capacity to move. I like the fun of it, it picks me up. I like the live music. I find inspiration and compassion for others and myself.”

“I love to dance with these professional dance teachers who seem to really care about me.”

“Uplifting and radiant – I leave class with a glowing feeling.”

“The class makes a real improvement to my outlook and general fitness; I have gained fitness, social friends and memory co-ordination.”

“The class provides the most important thing for me – companionship and good fun. It builds a family where people care about each other – and it builds confidence and strength.”

“The dance class has made a huge difference to my symptoms – I am walking better, feel more balanced and stronger. The class provides an inspiration to move.”