Here is a sample of the letters and
comments that we have received. These letters offer some insight, but
don't even tell the whole story.
Dear Drs. Perlman and Eulberg,
I am wearing my new brace, made by Marmaduke Loke, and Jean-Paul Neilsen. I am so excited about it that I wanted you to know about it, both from my view point and from the CPO's who designed it. Why? Because it has made such an incredible change in my life that I want others to be able to have the same life-changing experience.
My new brace has given me a new life as a new woman. It's not the "put it on and walk" type of brace, but one they designed especially for me and my polio foot/leg/balance problems. It's about learning a new way of walking, and where I am in space.
There was exercise I had to do before I was given my brace, and then to practice for a time with my new brace, building up my "brace time". About 3-4wks. (?) after being given my new brace, I was taught to walk properly and again, building up time little by little. You should see me now!
I told Marmaduke and Jean-Paul last week, complete w/ a few tears, that when I watched me walk down the hall in a long mirror, I didn't know that woman I saw in the mirror. This woman walks with a new gate and a new concept of self. A confident one. I don't know where she came from, but I like her a lot! I smile more, take "stuff" I used to think was serious or aggravating and made a big deal out of it (or so it felt to me). Now, I realize just what "big deals" really are! I have a much better, much more positive attitude on life and my self. My path seems to be smoother now.... not the heavy weight of the world on my shoulders. I'm told I'm a lot more fun to be a round now too! :-)
BUT THE VERY BEST PART IS THIS: I NO LONGER HAVE ANY LOWER BACK PAIN AT ALL!!!! My almost 15 yrs. worth of terrible low back pain is gone. Totally gone! This has been worth all the new learning!!
My new positive attitude is showing up in so many ways; even my artwork looks stronger, more focused. I'm getting to know this new woman little by little, and while I know all the various therapy's have helped me along the way, it's been a drop in the bucket compared to this new brace, and the new woman I am becoming. I even stand with more confidence, let alone walk more smoothly and confidently. I'm proud of my hard work. And I can't wait until you see the new me.
Sincerely, ER in San Diego
(This woman was always seen in a motorized scooter. She and her husband visualize in the very near future of removing her scooter lifts off both cars and donating the scooter and her designer canes. Her PT and Doctor from Denver wrote to us commending this great feat.)
Speaking of great news, your MDA clinic visit sounds like a very positive experience and rewarding for all your and Leslie's hard work. Jean-Paul and I wish we were a fly on the wall to witness your visit. MDA visits are usually filled with bad news for Leslie. We certainly turned the tables on this past visit. They were genuinely interested and her neurologist (who shows little enthusiasm for anything) was smiling!!!! I think his letter to the insurance company, was of great benefit to us.
Jean-Paul and I had a very rewarding day as well, we saw two clients one yesterday and one today that were overwhelmed with joy. I can understand the woman's happiness. After our first visit when I did wind up crying, I told myself that I WOULD keep my emotions in check the second visit. On Friday, Leslie came into the room saying, "Look what I can do"! She proceeded to bend over and touch her toes. I asked her how she discovered that and she commented that she had dropped something and thought she would just give it a shot. She is happily bending over all the time to show people that she can do it. It is such a simple thing to the rest of us, but such a huge thing for her.
Tell Leslie that we are proud of her and to keep practicing and improve her technique. She can continue to make improvements in function and efficiency. With each video you send, we will study it and offer her tips to work on.
All I can say is besides the obvious physical benefits she is experiencing, she has also seemed to turn a corner regarding her confidence. You have no idea how wonderful it is to see her walk into a room with her shoulders back, her head up and a smile on her face.
Date: Mon, 20 May 2002 17:01:58 -0000
Subject: New AFOs for Leslie
Hi Group, Roberta here. I am back. I just wanted to share with you the news that we went forward and obtained new Graphite AFOs for Leslie. She and I traveled to San Diego in March and she was fitted and then we returned 3 weeks later to obtain the AFOs. Marmaduke and Jean Paul through Dynamic Bracing™ made them for her. What an incredible difference they have made for her. She is able to balance, stand with feet together without toppling over, walks with shoulders back, head up and can walk quite fast. Her latest discovery is that she can bend over from the waist and pick things up off the floor without toppling over. I would be happy to answer any questions anyone might have about these. My email address is @aol.com. If I sound familiar, it is because I left the group awhile back after dealing with my mothers' terminal illness.
The doctors also felt she might have Distal SMA. However, her diagnosis is still a little vague and CMT is certainly still in the realm of possibilities. I cannot impress enough upon the group, what a difference these braces have made in her life, in just the short time she has been wearing them. It is like Leslie received a huge shot of self-confidence and at age 15 (closing in on 16) that is much needed.
(They came down from Oregon, after the fitting and training, Mother and daughter were laughing, crying, giggling and not knowing how to react with success. They said they were afraid to be optimistic, since they were let down so many times before.)