Expert Tips and Interviews on Living with Parkinson's Disease
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Michael Okun Indu Subramanian Jonny Acheson

 

How couples living with Parkinson's can move together

There are a lot of inspirational people in Parkinson’s disease and we had the pleasure of interviewing Judith Sachs. Judith has been a leader in adaptive movement program development. We had the pleasure of picking her brain about tips for couples moving together.

Who is Judith Sachs?

JUDITH SACHS is Founder and Director of ANYONE CAN DANCE®, an adaptive movement program in Philadelphia, PA. Since the body was made to move, her goal is to get everyone moving throughout their lifetime.

She posits that moving with intention in a chair, wheelchair or walker can free a body from its physical restrictions and galvanize a person, a couple or a group to work together on rhythm, grace and confidence.

She is a certified Dance for PD® teacher in Philadelphia and runs a partner program called CLOSE CONTACT for COUPLES® with PD, which is supported by a grant from the Parkinsons Foundation in collaboration with Penn Medicine and the Lou Ruvo Center for Brain Health, Cleveland Clinic, Las Vegas, NV.

1.   WHY do couples have to move together?

As the certified Dance for Parkinsons® teacher in the Philadelphia area, I began noticing that couples who took my class were having difficulty communicating with each other as the disease worsened. They were cranky in class, they would lose rhythm, they would stop listening to the music. “You’re not in sync with me!” I heard several say.

I decided to create a program that would renovate the idea of partnering –but without dance. I had a lightbulb moment when a couple in one of my classes interacted with me when we were saying goodbye one day. John had recently started using a rollator, and his wife had gone to get his coat after class. He told me he had fallen the previous day, getting out of bed.

“I’m so sorry to hear that,” I said. “How did it happen?”

“Well,” he grumbled. “Joanne had gone downstairs to make the coffee and left her slippers under the bed, so when I rolled toward the bed rail to pull myself out, I tripped on the slippers. It was a mess getting me off the floor.”

 “It sure was!” Joanne at this point had joined us and had overheard our conversation.  I asked if she had a timer on the coffeepot that she could set the night before. “I don’t know,” she shrugged. “I’ve been doing it this way for 42 years.” John nodded. “And John… “I turned to him. “You said you were pulling yourself over to the rail. How come you never switched places in the bed?”

 “I don’t know,” he said. “We’ve been doing it this way for 42 years.”

I decided that I was going to teach them to change some long-time habits that would help both manage Parkinson’s—and their relationship-- more effectively.

 1.   What is Close Contact for Couples®?

When we live with a partner for decades, not only do our own movement patterns change, our patterns as a couple change. We walk down the street and lean a certain way because one of us is taller. We move around a tight space accommodating one another’s’ limbs. We actually start breathing together.

But when Parkinson’s or another movement disorder enters the picture, it sets everything askew. We have to slow down, pay attention to new patterns, and see what each person is doing separately before we can start moving together. And we want to do that safely and with confidence.

As we get older, we don’t want to have to lift a partner; we just need momentum so we can get them on their feet. We need the fun we used to have rolling off the bed in an intimate moment to figure a way to get up after a fall. We need to rethink grabbing with our thumbs to prevent an accident and instead slide around a partner’s arm with an open palm and long fingers. Our own body changes over time; and our synchronicity with a partner changes as well. But there’s no reason we can’t continue to shift weight, touch intentionally and look each other in the eye. We can do that until we die.

CLOSE CONTACT for COUPLES® with PD, in existence since 2017, is currently supported by a grant from the Parkinsons Foundation, in collaboration with Penn Medicine and the Lou Ruvo Center for Brain Health, Cleveland Clinic, Las Vegas. It is conducted online, in your own home, over a 6-week period.

This FREE 6-week program, conducted on Zoom, teaches partners to

·      to pay attention to one another and yourself

·      to share weight

·      to develop a mutual center of gravity, using momentum

·      to experiment with different types of touch

·      to learn the difference between assisting and supporting

 

2.   What is CLOSE CONTACT good for?

·      To learn physical, verbal, and emotional communication techniques you can share with other members of your family

·      Get out of chair, a bed, the car, or the shower when you are slippery and wet.

·      To break a freeze, or train for unexpected moments of freezing of gait

·      To learn to improvise and strategize together in difficult situations

·      To recapture play – and have fun!

 

3.   Why do CLOSE CONTACT online?

Our concerns about movement and staying close and safe have been exacerbated by the pandemic. Rather than risk going out, we often stay with our loved ones 24-7. In this program, though we can see  and work alongside other couples in their own homes, we are only close to those we live with.

 4.   Where can I sign up and when does the program

run?

This year, there will be 4 groups of 4 couples each, meeting for a an hour per week over the course of 6 consecutive weeks.

The first group is starting soon, but you can select the time period (October through June) that will work best for you.

5.   Can I see some videos of the program, to see if it

would be right for me and my partner?

Of course! Click these links:

CC#1 Learning the chair assist and ball play

https://drive.google.com/file/d/1ySrrNQWgG0w0JoT7lsyLaxlpxlPeuhhj/view?usp=sharing

CC #3 Couple with rollator helping each other

https://drive.google.com/file/d/1ZoF9dWSWV9GUGxJQqCXz5oS2EAhKRAfY/view?usp=sharing

CC#4 Freezing of Gait

https://drive.google.com/file/d/1Ytmsqso8FAuW1nVojXUJiYgxKAHKdm1S/view?usp=sharing

You can learn more at https://www.anyonecandance.org and can contact Judith Sachs at judithsachs@mac.com or 609-577-1928.  

To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside

He also serves as the Medical Advisor for the Parkinson’s Foundation.

To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.

The blog artist is Jonny Acheson.

Michael Okun