Exercise

Exercise Program

This whole experience has been way beyond exciting for me. It feels like this is a significant missing piece in Erin's puzzle at the moment. By participating in an exercise program that is as extreme as her diet, we are putting equal emphasis on both of the major players in her health. For her, one without the other is not enough, no matter how good we do with one or the other. We'd always kept her active and she's been in PT 2-3 days a week for her whole life (poor baby!), but this is jolting her activity level way up beyond anything she's done before.

With Erin being 9, we are working on skills that she can develop for a lifetime of more independent living. Giving her this exercise protocol gives her another way to keep PWS in its place, aside from diet alone. When someone had Girl Scout cookies out the other day, she saw them and then looked at me. "Mom, if I eat one of them, I'll have to pay for it, won't I? How many calories do you think it has and how long is that on the treadmill?" We looked it up and she decided that if she just had a taste, that would be enough. I broke off the smallest piece you can imagine, and she was happy. I let her know how proud I was of her and that she should be proud of herself for making such a good decision. That's the kind of thinking that shows me what's possible for her when given the right tools and support.

Cool Shoes

I have to tell you about some shoes. They are called mbt shoes <http://www.mbt-uk.com/>. From the Web site:

Masai Barefoot Technology ...

… activates neglected muscles … improves posture and gait … tones and shapes the body … can help with back, hip, leg and foot problems … can help with joint, muscle, ligament and tendon injuries … reduces stress on knee and hip joints

They only make them in adult sizes, but I contacted the company and there is a guy in NYC who can add the mbt sole to any pair of shoes. We also had him add arch support since Kian has a tendency to pronate a bit, especially when tired. The cost is $125. He can be found at:

EneslowThe Foot Comfort Center 924 Broadway (between 21st and 22nd) New York, New York, 10010 Phone: (212) 477-2300 Fax: (212) 477-2156

We put a pair on Kian (age 2) today and the effects were amazing, both to us and to his PT and OT. His posture immediately improved. He lost his sway back and he held in his tummy. His feet came closer together and his hip alignment improved. He can run in them and squat in them and loves rocking back and forth on them. He laughs at the rocking motion and really seems to enjoy them.

I have a pair and they are very comfortable. They are my shoe of choice and I can feel them a bit on my legs. When I really noticed them, however, was the day after I had an English riding lesson (with posting and posting and posting). The next day my legs ached, but it wasn't so bad until I put on my mbt's. With my mbt's on it seems like I felt every sore muscle in my trunk and hips and buttocks and legs. In fact, the muscle ache in the mbt's was so pronounced that I couldn't wear them for a day or two until I had recovered from my grueling horse ride. It made me realize how many muscles I must be using when walking with mbt's in comparison to normal shoes.

The shoes are designed to be unstable and they are unstable, so keep that in mind. So far, however, the instability doesn't seem to be getting in Kian's way. HE may have trouble climbing steps in teh mbt's. We'll see...