Well came out if hospital on thursday, after being prodded, poked, videoed lumbar puncture EP tests, neuropsychology test. Very thorough.
Have a possible diagnosis (not MS) but Hereditory Spastic Paraparesis, not particularly good news, got to wait for results of genetic testing for confirmation, started baclofen.
Can anyone advise me how i go about becoming registered disabled, consultant will support this. But I believe its done at local level. I want to return to work, and feel that this would be beneficial, it’s not that I necessary want any financial benefits, although it probably would be beneficial to reduce my hours although at present couldn’t afford too.
Hi Cavalier, glad you are out of hospital and hope you get some results of tests soon. There is another user of this site with HSP and I will alert her to your post.
There really isn’t any register of disabled people. I’m not sure if there ever was but lots of people seem to use the term ‘registered disabled’.
Usually you can get the benefits of being disabled… free travel pass (London… not sure of rest of country), or blue badge for parking, by getting the ‘high’ mobility componant of DLA.
It is a benefit that is available for disable people if they are working or not, and if you are awarded the ‘high’ mobility bit you can use that money to ‘lease’ a car or mobility scooter through the ‘motorbility scheme’. Look on a site called ‘Benefits and Work’ for more info… also I think there’s a bit on benefits somewhere on this site.
Unfortunately this benefit is set to change next year and become a benefit called PIP… don’t even get me started on what terrible changes it will mean for disabled people!!!
If you need ‘aids and adaptions’ to where you live (eg grab bars in bathroom, level access shower etc) they can be paid for through your local authority OT department. You can be referred through you GP, social worker, or you can self-refer (but again this might just be in London). Anyway, if you go onto your local authority (council) website you should find a link for ‘disabled people’ which will give you the info. You do not need to be on DLA for this service, but will be assessed by an occupational therapist. Once again though this service has been badly affected by the cuts.
You are also protected by the Disability Equalities Act which protects you in various ways including employment protection. You employer cannot sack you because of your disability and if you are unable to do your current job your employer has to make changes so you can do your job or offer you a job that you can do (unless it’s really impossible).
PatB pmd me to say you were asking about becomg registered disabled`.
She has given you a lot of very good advice, which I hope helps. Do think about applying for DLA tho, as you can have it even whilst working, if you qualify.
I`m picking up on the HSP front.
I may have this. I do have the SP bit, but cause unknown.
I have declined genetic testing, as to be honest, I`m sick of tests after 14 years of them!
My symptoms are very PPMS like and i was labelled with that on and off for years, by a succession neuros over the years.
There is no-one on my mum`s side of the family, with simialr problems. But I wasnt brought up by my natural father, so I dunno anything about his side.
As you`ll know, there is a 50% chance that my daughters and grandchildren could develop HSP. I have been bit hit badly by this and have told my family. They tell me not to feel bad, as i didnt do it voluntarily! True!
How is your mobility? I`ve been a full time wheelie user for over 8 years now. I am hoisted in and out of bed and also in my recliner. I do some standing, but it is really difficult to keep upright!
Hi Folks I have only just joined this site so was just a little reluctant to butt in but. I have here in front of me a card with Registered Disabled and a number issued by my local Social Services Department in November 1211.
I refferred myself to the Social Services simply by phoning and asking for an assessment which was done maybe one year later (they are very overworked) and they organised with the local council for them to adapt my bathroom I have now got a wet room. They also gave me a high stool for the kitchen and grab rails in my garden I did not have to pay for any of this.
You may be entitled to DLA this is payable even if you are working, the form is very detailed and long but I managed it OK.
I would just like to say how pleased I am that I found this site I see that everyone is so helpful.
Hi Sally and welcome to the site! It is a great site… very friendly and helpful. Most of what I know about MS I’ve learned on here and made some good friends as well.
Wow had no idea these cards were available! But you say you got the card in 1211… well perhaps they have been phased out since the 13th century! LOL… love it…
Hi PatLove it. Yes I got it end of November, I have found it useful for when I buy something like when I bought an adjustable bed in an ordinary bed shop, it allows I think vat off. also useful for trains it allows I think one third off prices, (travel that is Pat not trains! ).
Hi again Sally, I got the discount card for trains by sending in copy of my high mobility DLA award (although now I’m not able to use trains… although I’m shortly getting a wheelchair so maybe trains will be do-able again)… and I’ve had the VAT knocked off simply by saying I have MS (but that was purchasing through disability suppliers)…
… so the card sounds like it could be very useful esp for people who aren’t getting high mob DLA.
Glad you are not actually buying trains Sally. They are so difficult to keep at home…