Physical Therapy: A Lesson in Little Victories and FA
“I think you got this,” Dr. Landreneau told me.
I didn’t know how to respond, and I was too worn out to, anyway. I graciously sipped through the straw in the cup of water he held for me, and silently accepted the two fun-size bars of chocolate he threw on my lap.
My steady panting finally quieted as he pushed me outside to the wheelchair ramp. The Louisiana humidity, like an awkward and uninvited hug, smothered me as the door creaked open. The bright sunlight jarred me awake from the insular world of my physical therapy session, where everything had been cool for the past 90 minutes. I suddenly missed the soft thrumming of the air conditioner.
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But even in a comfortable setting, physical therapy is not an easy task. Clients are supposed to push their bodies to the limit. And when a client has a chronic degenerative condition like Friedreich’s ataxia (FA), as I do, we sometimes question the worth of physical therapy.
The work is exhausting and sometimes painful. And the science behind FA is definite: Its progression cannot be stopped.
Maybe this internal monologue is why his words made me silent and reflective.
Have I really “got this?” FA seems unstoppable, like it’s slowly swallowing me.
Yet, Dr. Landreneau says he sees in me the power to defeat it, or at least to “not go gentle into that good night.”
And if he says so, I believe him.
***
At the start of this therapy session, Dr. Landreneau asked if there was anything I wanted to focus on. I said I’d noticed that, when applying my full body weight to my feet (like when standing to transfer), my left ankle caved, resulting in me painfully standing on the side of my left foot instead of the bottom.
I’ve since learned that this is common with those who have FA, but I’d never heard of it before.
Our 90-minute session proceeded, with a special focus on my left ankle. We began with a technique I really think highly of, dry needling, focusing on the muscles of my lower left leg. Dr. Landreneau had me transfer back to my wheelchair, then fall onto the floor to do some stretching and exercises. He and his business partner/wife (also a doctor of physical therapy) have the unique task of coming up with techniques that might help with my FA. That day, he helped me stretch my hips, legs, and back, and practice balance exercises with a giant ball and ankle weights.
Then, for the hardest task of each session, he has me climb back into my wheelchair from the floor. I don’t have a video of that, but here is what it looks like.
***
Finding medical doctors and therapists who are willing to treat those with a condition such as FA isn’t easy, at least in my experience. Many clinicians turned me away, citing their unfamiliarity with FA.
Dr. Landreneau didn’t.
I emailed him, explaining my FA symptoms and my goal for physical therapy: maintaining my progression, not necessarily improving it. I hoped to be as frank as possible and give him ample opportunity to deny seeing me as a client.
I even made the ridiculous request for a video call, so he could see me as I was, FA symptoms and all. I wanted him to know what he was getting into if he accepted me as a client.
To my surprise, he agreed to the video call, and scheduled my appointment before hanging up.
Guess there’s no backing out now.
***
After I climbed back into my wheelchair, Dr. Landreneau asked me to practice standing before I left. When I did, holding onto the sink in his clinic, he surprised me with an observation. “Your left foot is flat on the ground.”
I don’t know whether this will last. This isn’t a huge accomplishment, just a little victory.
Dr. Landreneau helped me into my van, then walked away, and I swear I heard Metallica playing as he took his victory lap.
Maybe you’re right. Maybe we got this.
***
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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Comments
Linda Feld
You are lucky to have a doctor like this who is willing to try Matt. I just attempted PT again recently and was extremely underwhelmed with their willingness to at least give it the old college try. They were like robots and after 4 weeks asked me if I was seeing progress. I returned the question to them for their take...Dismally we both agreed nothing had changed. I was not looking to climb a mountain, I wanted therapy to maintain my muscles and use what is there. I could feel them trying. I felt like the picture of the turtle, it is exhausting. I was trying though! They did not count that as preservation, they counted me as a failure as I didn’y Meet goals. I can’t meet their goals, I was trying to meet mine. I am happy not to see their faces 3x a week....
Matt Lafleur
Linda, this is exactly it. This is my experience before I found my current PTs. Do me a favor though. Never ever give up that effort! Someone with similar goals is out there. The search is frustrating but keep looking!
Dr. David Fishkin
Dear Mr. Lafleur,
Your article came across my screen through a google alert I set up for the search term dry needling. I am a chiropractor and a teacher of dry needling therapy. First I think this therapist should be commended for their efforts in taking on challenging cases and in employing this treatment approach which is excellent for the musculoskeletal system. I also want to make you and your audience a aware that a a chiropractor can be very helpful here as well. I train many doctors around the country, not only chiropractors, in this technique so anyone who is trained in this is a good possible person to seek out for FA.
Best Regards,
David B. Fishkin, DC, MPH
Founder and Director
Dry Needling Institute, LLC
Kristin Brindle
I am wondering if PT is covered by your insurance. That would be helpful.
Robin
Linda -
I'm so sorry you had that experience. My wonderful PT has stuck by me for 5 years and kept me as independent as possible. Hopefully you'll find a great one; keep looking!
Barbie
It is very important to have a physical therapist that you can trust and work well with. I used to refuse physical therapy because of past experiences. A little over a year ago I started working with a physical therapist again,somehow he completely changed my outlook on PT. I will forever be grateful to have had him. I know now that PT can work. It is essential to have a therapists that listens to you.
Terry
What a terrific, inspirational read!
It's absolutely about meeting our goals not theirs and it's about slowing progression not reversing it. Each of us knows FA is progressive but PT keeps us in as good a condition as possible.
I'm convinced the retardation of progression is down as much to positive mental benefits ("I'm in charge") as physical ones.