 |
| 2nd pilates session with Kirsty |
I am learning, albeit slowly, that some things need a specialist specialist. Elise was referred to a pilates centre by an elite sports physio at a horse clinic. Well, if you are like me, I had no idea what Pilates was and why it was important.
So after emails to and fro, we organised an appointment with a pilates instructor (physiotherapist) at a relatively local centre. The first session was, well... disappointing. The pilates instructor was getting a chest scan so we were scheduled in to see a different but experienced lady. She may have been a great physio but she had no experience with paraplegia. Most of the session was spent fiddling around and trying to find equipment that would work. I didn't feel like going again but thought we'd better hold our judgement until we met the original lady we were booked into.
I am glad we did. Wow, did this other lady, Kirsty know what to do. Years of working in Tassy paediatric rehab meant she really knew what paraplegia meant....which muscles were weakening, which were overworking, where the pain would be, what positions she could manage.
Pilates is basically gentle strengthening exercises that usually use springs, balance balls, elastic bands etc. Elise's shoulders and neck are always sore, working way too hard to compensate for very little core strength. Because Elise's lower trunk doesn't stabilise her, she has to work her trunk, neck and arms much more to stop from toppling over ... a bit like sitting all day on one of those balance balls...the middle just wobbles. So pilates steps in, to gently work on strengthening what core muscles she can control, which isn't much. Add this to horse-riding and the two activities work as a team and are often done together for spinal cord injury people.
 |
| A half barrel sit-up - this reduced muscle effort significantly |
https://photos.app.goo.gl/wys2sDAGFEcsJc5t2
Short clip of an elastic band sit-up:
https://photos.app.goo.gl/c8bEdKo2vmW1MHc72
So now it is confirmed, a specialist is not enough. Unless they have experience in this area, the benefit is low. We have found a horse-riding trainer, pilates instructor and personal gym instructor who all have significant paraplegia experience. Still looking for an osteo and psychologist.
The funding via NDIS for allied health was generous so we are very blessed in that these are all free.
Health update
A 4-day school week was always pushing the boundaries a bit and as it turned out, way too much. Mid-way through term 1 Elise started slowing down, eating less, feeling off. A few weeks later and the panic button was hit - breakfast stopped, then lunch and after a few days dinner. Elise wasn't eating, was losing weight and feeling nauseated. At a casual glance, she looked OK but we knew she was slipping. Fortunately we have a hot line to the hospital and an action plan was put into place....school stopped, rest, rest and rest...very difficult with lots of appointments booked and an upset daughter. At a meeting with school, we organised a 3 day school week and dropping all unnecessary work. Basically trying to reduce workload by 50%. This isn't easy, planning yr10-12 on a part-time basis and maintaining her social needs yet still trying to graduate with her own class - hoping to pull it off but it may not be possible. I could pretend, but I am worried. Doing VCE subjects is hard, a lot of work regardless of the way you do it. I am still not sure how we are going to manage it and still keep Elise functioning emotionally and physically.
The auto-antibodies (Elise's immune system gone wrong) cross the blood-brain barrier and attack, killing cell proteins like DNA in the brain. Brain fog is a standard Lupus problem. A sick brain and a sick body mean that mental or physical stress eg. homework push a struggling system often into a flare. For Elise, this is life threatening.
A visit to the Rheumatologist today confirmed deterioration in her blood-work, the Lupus is clearly edgy. We have to be very careful.
No comments:
Post a Comment