Snarky Parky & me
A Journey Into Parkinson's with Nancy Mellon
Coordinated by Corrine Bayraktaroglu

 

On Balance and Gait
with Nancy Doodling Around

Yesterday I listened to  a webinar from the Michael J. Fox Foundation on Balance and Gait. I think, I was only top level listening,   At this point, I am not having much of a problem with my gait or my balance. But I have begun noticing some spurts of strange walking patterns, that I get mostly in the middle of the night. At this point in time, I can tell myself to “take a bigger step' or “stand up tall, Nancy,”  or “Stop it!”  when I find myself moving a bit too fast in many small steps or shuffling a bit, or standing stooped over, when my medicine has worn off.

So I was tuned in but just,sort of listening, while the rest of me was sort of exercising.

I did a bit of rolling a ball around under my feet to stimulate the blood flow to my feet.  Thank you Sondy for the suggestion! Sondy is the care giver for her mom. The other day, her mom had woken up with a painful big toe. She couldn't walk, Sondy looked at it and compared it to the other foot's big toe.  It didn't look very different or swollen.  It was a tad red. So she suggested to her mom, that she sit down and run her foot over a foam tube.  After 20 minutes her mom felt fine. ( Sondy thinks it improved the blood flow to her feet and that's what helped it.)  I thought that made sense too.  

Cynthia, my boxing teacher has been having us roll a pencil between our hands or roll a ball up and down our hands to stimulate them. So I did a bit of stimulating my hands while the experts talked.  Then for finger exercises, I walked up a pencil, with my fingers, then flipped it and walked back down it. Then I did it with the other hand. You get the picture, I was generally exercise doodling as the panelists  talked.

 The main things I got out of the talks were:

      People with PD should start a relationship with a Physical Therapist as soon as they get their diagnosis.  And they should continue to see them every 6 months - to a year, to check in on changes to their gate and balance. The therapists can help people maintain their ability to walk safely, get into and out of chairs and beds and teach them what to do when they freeze and most important help them to not Fall. As they go on in their journey, people with Parkinson's tend to have balance issues and fall. Physical therapists can suggest the best exercise regime for you. And change it as your needs change. I have not done this yet.

      Early interventions can delay complications.

      Which brings us to the most important point they had- that you have all heard before- Exercise is the real medicine for Parkinson's.  This point came from the Doctor no less.  But  every other specialist on the webinar agreed. From the time you hear that you have  Parkinson's, you must start to exercise. (Of course, It is best if you already were a person who exercised. I sure wasn't.)  To live well with Parkinson's you must exercise -every day.

      Take different kinds of exercise too. Tai chi, Qi Gong, Dance, Bicycle, Lift Weights, Box, Walk and on and on.  “Motion is lotion” says Cynthia.

      You can grow better at balance , you need to challenge your balance by doing exercises that put you a little off balance! Weird huh?

      Whoo boy- Exercise, exercise- I have exercised most days, since my diagnosis and most of my exercise classes do balance exercises too.  So this one, I get a check mark-you go girl! for.  But I don't think I exercise hard enough, I am certainly not puffing like Steven is when he gets home from a run..

      The last point that I really took in was: canes and walkers are generally not very helpful for people who have Parkinson's. Neither could the panelists say that a special foot wear was generally helpful,  because Parkinson's is not a one size fits all disease.

 

A nasty word that the  panelists brought up is “Festination”– it means rapid, small involuntary steps.  Hmmmm... that sounds familiar, so maybe I do have some minor problems with my gait already.  Steven wants me to bring it up to my Movement Specialist and I have not wanted to.  I have even gotten a little testy about it, (sorry Steven). Why?  Because it makes it seem like I am already going into another stage of this journey and I Do Not Want To Go There.  Where is my acceptance now? Ok, there is always more to work on.

 The take away for me-Call my Movement Specialist and ask her for reccommendations to find a Physical Therapist, that has been trained in working with people with  Parkinson's. Start a relationshiop with her/him. Or better yet, maybe one of you has a reccommendation for a PT you love?

Be good to yourselves, my friends, it is hard to live, but remember “Life I love you, even when not “Feeling Groovy.”

cheers,

Nancy and the Snark


Footnotes From Corrine: Even without Parkinson's much of this is such good advice as we age. I didn't realize when I went to physical therapy 4 years ago for my back just how weak my balance was on my right leg. It just snuck up on me. I also appreciate Sondy's ideas with the foot rolling, thank you. 

Comments

  1. Yes, this is all VERY helpful, Nancy. Thank you again for your incredible dedication to making your learnings available to the rest of us. Cha-Ching! Meaning: like money in the bank, but really more like a boost on the road of life.

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  2. I agree with Corinne. Good advice for everyone. I like the idea of a long term relationship with a physical therapist who can give you feedback over time. I appreciate your writing here and all that you contribute to our Wednesdays afternoon Dance for Parkinson's class and discussion. If anyone reads this who doesn't already attend, it is open to all people with PD and their caregivers, both in person and on Zoom, Wednesdays from 2-2:45 moving followed by about a 1/2 hour of conversation where people share their experiences with meds, docs, sleep and MORE!. Join us by calling the Yellow Springs Senior Center to register at 937-767-5751.

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