I am seeking a better understanding and treatment for people who have Multiple Sclerosis (MS) because I was a patient in a research experiment which worked well on me...Join me, I am a volunteer for @msresearch at the new MS Meeting Point in the Vassall Centre, Bristol! #MSMeetingPoint.
Take courage. I am proud of you. I was told repeatedly that I would not
be standing again in 2008. They gave me a tiny rotunda (rotating frame) that
was all they had in Bath and North East Somerset at the time.
I think the staff had been trying very hard to appease me. They had no
equipment for any case like mine. There is more time and energy given for people
who have had a stroke.
They were not taking it really seriously. I gave them the idea to time
my standing. In this day and age, no one thought of using a mobile telephone
It is bad luck when you reach the Secondary Progressive stage of Multiple
Sclerosis (MS). You feel helpless against the lack of understanding of the
condition. Frankly, I was raging and very upset by the situation.
Standing in front of my worktop
I kept a log: date, time, time
standing, feeling (positive or negative). Get a pad of lined paper; you are
going to enjoy this! I stood improvising instead in my kitchen in front of the
worktop. I called again six months later to show them. They were impressed...
Standing with Cricket Panache
by 2011, I had had a new neurologist at the Bristol Brain Centre with a physiotherapist
that obtained a Cricket Panache transfer frame. It
was a strain on my wrists without locking the knees.
Quest88 or Helga
I was very lucky I somehow inherited a frame which the MS Unit at
Bristol had been given by a technician after his Mum passed away. It has been
checked over by Quest88 has it is an old model and I got a new sling belt. As
you see it needs patience, courage and some determination. They even have come with trainee
students and physiotherapists returning to the career after a few years
away...Bliss. I just have self-referred myself once more. They may be very busy
with a three months waiting list. They need to see what I am doing on my own so
they do not tell anyone that they will not stand again.