The MS Occupational Therapist came out to see me last week and the only positive sounding thing was amazement at me not having a wheelchair. An option that I have now come to see as my life-saver. The only problem is of what sort, I cannot wheel myself due to lack of strength, and my carer isn't allowed to push because he has just had a heart attack. I know that I can have one on long term loan from the Health Authority [a wheelchair not a carer] but do they only supply the sort I can't use? What would be ideal is a powerchair, even though they do look like a Robot without the tracks, the seat turns 180 degrees so no more 3 [30] point turns and with a joystick control, I would not not have to grip the handlebars and hold in a lever to move. I know what I want but I would also like to know how to afford one. They range from 3 to 6 thousand pounds.
My main concern is the concrete steps and me somehow being able to get outside! The OT is putting the wheels in motion for me to have a stair lift but that is inside, the Housing Authority may think that it isn't viable to install a ramp system and recommend I move to a level access accommodation, either a 1 bedroom flat or a 1 bed bungalow. Moving in itself wouldn't be objectionable to me because there is no community spirit in this neighbourhood but its the thought of leaving behind the garden; and the décor inside the house which I have spent at lot of money on bringing it up to a decent standard. This house had been totally neglected for about 50 years prior to me moving in, all the hard work and costs involved I would be reluctant to walk away from. [OK ride away from]
I'm sure the OT was trying to help when she started pointing out features on the laptop that she had decided would be useful to me. I was very restrained and didn't ask her if she often told her granny how to suck eggs. I keep smiling to myself about the restraint I used.
Anyway the OT is calling again next week so I shall see what is happening. She asked me to consider moving, and I have considered it but need more information, and to be told of all my options, to come to a decision.
I have, however, realised that all the things I have read and been told all amount to the same thing, I will not improve, treatment stops me getting worse, but there is no cure only treatment to make it stand still. Why had it taken me so long to put all the pieces of information together? Probably because despite the consultant showing me a brain he insists is mine on MRI scans, in reality mine has long since left the planet, as anyone who has known me a while will agree.
This is only a short piece because I feel so weak and tired at the moment.
So see you all later.
