Disability aids, equipment and technology
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Fallen through the net.

KayKayKayKay Member Posts: 1 Listener
Hello, I am 20 years old. I developed a marked tremor of the lower limbs during my recovery from critical illness in 2012, the cause remains unknown.
To describe the tremor I would say it is similar to Parkinson's disease, however it is actually more prominent than what is presented in Parkinson's. It occurs generally only whilst standing or walking, and thus means I cannot stand for very long and I cannot walk very far, due to tiredness and because it is not safe to do so.

Unfortunately support for me has come to a halt, I received physiotherapy for over a year but that has now stopped. I was visited by an Occupational therapist who had a ramp fitted outside of my house but that is all I received. I do have a wheelchair under the NHS wheelchair services, the chair is not of good quality at all.... I have only had one brake for five months now, I get the wheelchair repaired but it falls apart a week or so later despite that I do not mess around in the chair at all. Now I have given up with having it repaired because I know it is a waste of effort. The other fault with the chair is it is far too wide for me, I have a very slim frame and would need a pediatric chair. I was measured up for a new chair last year but nothing came of it, wheelchair services claim to have no record of anyone coming out to me.

I am wanting to make a big move next year to leave the family home and go to University, but at the moment I do not have the appropriate equipment to allow me to become independent, and I would like that.

I would appreciate any advice that could be given,
Thank you.

Replies

  • htlcyhtlcy Member Posts: 133 Pioneering
    edited November 2015
    Hi KayKay, and many thanks for your comment. I'm sorry you feel that help you've received hasn't really been any use to you. I have felt that way for a long time (I have hemiplegia which is a form of cerebral palsy) and unfortunately I've just had to keep pushing and fighting for help, and this year I am finally receiving more help and feel far more independent and happier in myself. It's also worth remembering that treatment might differ from region to region. When I moved to university in Yorkshire from my family home in Lancashire my treatment has improved massively, but unfortunately it has taken the time to put things into place. I would say to remember to keep persevering; you have a right to feel listened to and your experience is just as important as anyone else's. As for university, I would really encourage you to apply for Disabled Students' Allowances. They will assess your needs and should provide you with the appropriate equipment/support to enable you to study. I received software so I could still type up assignments on bad pain days, ergonomic chair, dictaphones for lectures etc. When visiting universities be sure to check out their disability services, which will prove massively helpful during your time at university. Ask them about applying for DSAs if needs be; they will be able to provide you with information, or search up Disabled Students Allowances online. There will be a way and things WILL get better, so hang on in there. All best and let me know if there's anything about my university experience you'd like to know: I'm currently doing my masters and graduated with a BA this July :)
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