Today, we went to a different wheelchair dealership. It was only 5 degrees when we left to go, but it was sunny and so looked beautiful.
We got to the shop and had to wait a little. A worker started talking to us and took us to an examination room.
The lady we were talking to (who it turns out is an occupational therapist) was knowledgeable and noticed my in-turned feet (even in my winter boots) scoliosis (curved spine) kyphosis (hunched back) and lordosis (abnormal inward curve of the lumbar spine). She noticed that my lumbar lordosis is also cervical. I wasn’t shocked about this, as I half thought it would be given the other spinal deformities I have and the amount of neck pain and pain at the base of my skull I live with daily.
Again, we saw that:
My current seating system (backrest and cushion) is not doing what it needs to to support me
That my head/neck positioning is not good, and it’s expecially important to get that right for me so my head and shunts are well supported.
That this and overall body positioning is a challenge for me and that the postures I adopt are very exhausting for me.
She’d heard of the products I am interested in which is great. I talked about my having been a preemie at 29 weeks and my brain bleeds and resulting diagnoses.
We also talked about batteries and my wheelchair motor which sounds like a vacuum cleaner but the chair still moves well and as it should do.
We also talked about a future new powered wheelchair and the complexities of head and foot positioning for me, as in as well as shoe holders, a knee support for my left knee to help how much it turns outwards and falls to the side since I can’t control this on my own. She said because my feet are severely rotated, foot holders may not help the deformities completely but they will stop my feet falling off the footrests when the wheelchair moves and buckles will be better protection against spasms than velcro straps. I told her about when I had custom footrests and velcro straps and the force of the spasms ripped the straps open.
She said she was familiar with this happening in people with CP who have spasms.
She noticed when I was tired and I thought she was very patient and understanding.
I was tired when we got back from another early start, but it was a good day.
We are feeling good about today and hopeful and glad that the store workers are also occupational therapists.
Just Katherine 