Hi, I understand how rapid progression can scare you silly.
My own condition progressed VERY rapidly, mobility wise. Within a year of falling, spasms, bladder and bowel problems, severe pain, I was using a wheelchair part time. Just a year later I was a full time wheelie. I have now been like that for 10 years. I am also hoisted for every transfer, as I lost my standing strength last year.
I dont have MS, but was mis-diagnosed with PPMS for a long time, so I did learn quite a bit about it. I have an incurable, chronic illness.
My current diagnosis is only a half one. Neuros know what it isnt, but they can only guess what it is. I may never get a full and complete dx.
However, back to you and also to some of your respondents re wheelchairs.
I know, of course i do, as I have been where you are now…no-one wants to need a wheelchair from choice…unless they have a wheelchair festish!..but let me assure you that life on wheels isn`t really as bad as you may imagine.
For me, it has meant I dont have to stay in bed or in the house. Without my wheels, life would have been thoroughly miserable!
Yes, it does mean the house you live in has to accommodate a wheelie. My house has had to be adapted. Most of the work we did ourselves, via bank loans, or with the help of the council or charities. If you wish to consider altering your home and have no idea how it can be done, then ask for an assessment from an OT. I have found these bods to be a huge help more than once. the only problem is that they cant wave a magic wand and come up with the money themselves and therefore waiting lists can be incredibly long. I have just been on that particular journey myself. I needed a new wet room and my OT put me forward as urgent.
BUT after 9 months of waiting, I rang the council up to ask where I was on their list and was horrified to learn I was number 160!!! yeh, 160!!! That meant at least another year. So we bit the bullet and got a bank loan. The result is I now have a spacious, modern, very user friendly wet room…it is to my own design and I chose
HOLLYWOOD as a theme.
Back to you, the original anon poster…please try not to take to heart, the awful stories about other MSers. It is rare that an MSer ends up in such a terrible way. And there is no-one who could give you a prognosis…no-one at all…thank heavens…they could be way wrong!
Find and use all the help you can. There is lots of help out there. Never refuse help. Pace your activities. be good to yourself.
And here`s another suggestion for you and particulalry for Nikkitheirish, I use Direct Payments to pay for extra carers, to give my hard worked hubby a break.
I need full time care, and 1 person cant possibly manage by them selves. have you thought about applying for DPs? It does look a daunting system, but I promise you, once in place it is an absolutely marvelous way of living.
If anyone would like to ask me more about it, please do.
Rights, I`ll shut up now!