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.
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...
Home Exercise Ideas
1) We push back the furniture in the living room and set up a small moonwalk from Walmart or Amazon (http://www.amazon.com/Castle-Inflatable-Bounce-House-Slide/dp/B000W3JIX0/ref=pd_bbs_sr_2?ie=UTF8&s=toys-and-games&qid=1224785219&sr=8-2). The kids can jump for hours. They fill it with pillows and blankets and tunnel and hide things. It is great for balance and whole body pressure as well as flat out cardiovascular exercise. 2) We put up the rainy day swing set (http://www.onestepahead.com/catalog/product.jsp?productId=5817) in the bedroom door and the kids swing and create many imaginative and active games. This is great for stimulating the vestibular system via swinging. It is also good for eye/hand or eye/leg coordination because the kids create games where they have to kick or hit a stuffed animal that is thrown to them while they are swinging. 3) One Christmas I had all of the grandparents and aunts and uncles come together to buy two cheap king sized mattresses. We put these on the floor of the basement. The kids spend a lot of time down there jumping and creating gymnastics shows. This is good for cardiovascular. It also allows them to practice more tricky moves like somersaults or flip flops. 4) We bought a fake horse exerciser (http://sitincomfort.com/cotrexfrpa.html) and the kids ride it. Actually, not only do they ride it, but they create elaborate horse vaulting routines on it and they compete to see who can create and execute the best routine. This is great for strengthening the core and for working on balance. 5) We bought a surfboard exerciser (http://www.thisnext.com/item/182316D6/041DD5F0/iJoy-Board) that the kids love to play on. This is excellent for working on balance. I think it also exercises the legs and core a bit, but I am not so sure! 6) We have an exercise ball rolling around the house. The big kids sit on it and move around on it on their hands and knees (circus performers!). It is too big for the little guy to use by himself, but we do core exercises with him on it. It is good for working on the core and balance.