An ongoing issue with my CMT is managing my leg braces. From wearing worn out pairs for years, to debilitating breakages and AFOs that are simply too small and not tailored enough. I’m hoping that this stress can be relieved in the next 4 weeks.
I currently use ‘bilateral rigid ankle foot orthoses’ and have been for about 9 years. I am grateful for my braces as they give me freedom and independence. They also take the constant fear away of falling over (although I still check the floor ahead as I walk for any changes in the surface)
With a progressive disease like mine I think it’s a bit shortsighted to give someone braces and never re-evaluate their needs. However we all know that the NHS is under so much pressure so I find it difficult to criticise it. I’m happy to now be getting better care since transferring to another part of the hospital. I feel like the splint people I’m talking to now are more willing to make changes to my current AFO situation, which is something I have been keen to do for a while as I would like to try something more light weight and less bulky.
Today I had an appointment with the orthotics people. It was one of the best hospital experiences that I’ve ever had. Didn’t wait at all and everyone was really helpful. The orthotics person was really nice and had a dry sense of humour (which I really appreciate) we discussed my current situation and feelings and he said he had “ideas” which was great to hear. The plan is I’m getting some hand splints that will support my wrists, this is going to be really helpful for all of the typing I do in work. I’m also being provided with resting splints that will extend my clawed fingers, (they’re not as bulky as I envisioned.) AND I am getting a couple of Oval 8 finger splints which are like rings that extend the fingers. I’m so excited to try all of these things out.
On top of this I’m getting leg splints that I’ve never had before. The orthotics person took a kind of ‘video’ of my legs which generated a 3D image of my legs onto his IPad screen. I think I got a bit over excited peering over his shoulder, eager to see. The process is so fascinating to me. The new splints are light weight and slender but will do everything my current ones do with the added feature of more movement. They are printed on a 3D printer which is quite rare and exciting development for the world of orthotics.
I’m super excited to receive all of my new mobility aids. It’ll be like an April Christmas! Fingers crossed they will all fit and this new chapter of managing my CMT will begin.