I guess I can only speak from

March 13, 2008 at 10:33 pm

my own experiences? That is that when we get this…well, we walk differently to avoid pain. We lose the muscle tone and strength in our feet and ankles because we DO walk differently. When we don’t use some muscles properly as in our feet, toes, hands, or wherever our tendons and muscles contract from the lack of use…they become less elastic and when we fall? Tears and worse happen. PT, but only finding a really good therapist is the best way to go. But be sure to ask for a ‘home program’ that is, one that includes exercises you can do at home and maintain after any round of PT ends. There are LOTS of simple exercises and what I call ‘trick’s that can be done at home that keep muscles working better-where they should be working. The simplest is taking a bunch of marbles and picking them up w/your toes and dropping them into a dish…I started out just mushing them in between the toes and waiting for gravity to let loose…but after about a month of PT with this [and other PT stuff] my toes actually started to WORK again! And, BTW the whole foot can ache with the effort…but it’s worth it balance-enhancement-wise. Silly, cheap, and effective. It wasn’t graceful at all to start tho.
As for any relapse? Stacy, you have to consider/reconsider the time it takes for infusions versus the time you might just be plain laid-up with the CIDP? I don’t know about anyone else here, but my IVIG IS my primary appt! All others have to be ‘fit-in’ around that. No ands, if’s or buts. Even surgeries are scheduled so I won’t lose the IG benefits to surgery recovery – that seems like good stuff down a black hole otherwise.
Dawn – I am soo glad that Kevie’s doing well this time? [I’m knocking wood as I write this!]