Hi, my name is mtwam62!

mtwam62
mtwam62 Online Community Member Posts: 5 Listener

Hi, I have HKPP a rare genetic disorder that used to cause paralysis but now has left me with no leg muscle or core strength. I was riding a motorcycle up to 3 years ago but have had to make my way through using a cane then crutches & now transitioning to a wheelchair which I am waiting on. I am quite excited about this, despite some of the hassle it brings, as my world has grown very small. Looking forward to getting out to the park etc. It is an active chair with emotion powerwheels as upper body strength not great.
I am hoping to get tips & support as I cross into this new world

Comments

  • Charlie_Scope
    Charlie_Scope Posts: 118 Scope Online Community Coordinator

    Hello and welcome to the community @mtwam62. 😊

    Thank you for sharing your story. It sounds like you’ve been through a lot, and managed to keep a positive outlook! Have they said how long you may need to wait for your wheelchair? I’m glad you're looking forward to new possibilities and freedom!

  • mtwam62
    mtwam62 Online Community Member Posts: 5 Listener

    i will have to wait 6 weeks or so. So expensive but it will be worth it. I can be broke but mobile 😂

  • Mary_Scope
    Mary_Scope Posts: 1,657 Scope Online Community Children and Family Specialists

    Hi @mtwam62 and a warm welcome to the community from me😀

    It does sound exciting, hopefully you'll have some nice weather to go out and about too!