Well, blog fans, what a day! Richard and I went to London yesterday, to the giant demonstration and lobby of parliament for better disabled access to public buildings, better pay for carers, and various other crip things. (I should explain for newcomers that I am 31, married to lovely Rick, and completely paralysed from the chin down, and dependent on a ventilator to breathe for me, via a tube attached to a tracheostomy, as a result of a mystery illness which has been slowly paralysing me since I was 16. Thankfully, my consultant is sure that the disease has now run its course. She explained that it attacks the peripheral nerves from the spinal cord, and, since facial and speech muscles are supplied direct from the brain, they won't be affected. I hope she's right!)
We got up early (well, Rick got up, and then got me up) and, after Rick had washed me, dressed me in my yellow dress and put my sandals on my feet, lifted me into my power chair (I'm as light as a feather, thanks to the extreme atrophy of my limbs), put my head in position in the shaped head-rest, put the velcro strap across my forehead to keep it there, and swung my chin-control into position, and fed me in the kitchen (I'm what you might call high-maintenance), we headed out to the van, where Rick lowered the rear and I rolled on to it.
On the station platform, Two young women approached. They were both pretty, and looked like sisters. The younger one, tall, plump and dark-haired like the older one, and probably 21 or 22, was holding her sister's right arm with her left hand, her right arm flailing around randomly. She was walking very slowly towards us, her legs going all over the place, her torso writhing, and her head bent over onto her left shoulder, from where she made repeated but ineffectual efforts to lift it. She was making involuntary noises and constantly grimacing. Her older sister was pushing a folded manual wheelchair with her left hand.
When they reached us, the younger one, after some grimaces and ermmmm and ahh noises, said
"Ha-ha-hi! I'm Luu -ermmmmm -Luuuu - ermmmmmm ermmmmm LuAH! LuAH! Lucy, annnnnd annnnd this is MMMMMMM - MMMMMMMM - my ERM - sister emmmmm emmmmmm AH! AH! Jane. Are you GAGAGA going to the AH! AH! duhdemo?"
I confirmed that we were.
Jane took over.
"Do you want to go in the chair now?"
"Yeah"
replied Lucy. Jane helped her sit on the bench. Rick offered his help, and unfolded the chair and put the brake on, then helped jane lift Lucy into it. As Lucy sat there, writhing, grimacing, and making odd noises, Jane, who is 27, explained that Lucy, who is 21, had had steadily worsening dystonia since she was 12, and had practically lost all control over her body, as we could see. Lucy's contortions and involuntary noises were gradually subsiding. Jane explained that when Lucy wasn't trying to make voluntary movements, her involuntary ones subsided a lot.
The train arrived. A station employee put a metal ramp in place for us, and Rick guided my chair up it, using the joystick on the back, then Jane pushed Lucy on. We chatted as the train made its way South, Lucy doing her best to join in. She is obviously a friendly, chatty girl by nature, who must find her extreme difficulty speaking very frustrating. poor girl. Her speech got more and more difficult, and her head more firmly jammed into her left shoulder, her legs twisting round each other, her hands gradually rising to her shoulders, tightly clenched into fists.
"EMMMMMMM! MMMMMM!"
she said, loudly and urgently,
"All right, just a minute"
