CMT Central

Hi Just quickly wnated to introduce myself. I came across this site yesterday I have CMT type 1a as does my mum and her two brothers/my uncles. Getting diagnosed with CMT was like finding the missing piece to the Jigsaw that is my life.

I have Epilepsy and have had many problems I went as a Boarder to a Centre for Epileptics for my education. Anyway to cut a long story short I have been on medication to control my seizures most of my life and one of the meds didn't help my CMT and I now know I should not have taken. My CMT was only diagnosed 5 years ago.

I am now wheelchair bound and 18 months ago moved into an adapted flat away from the family. I love the space and can wizz around in my powerchair but it has not been without its problems! Mainly around employing a P.A/Carer through my 'Individual Budget' I was wondering if anyone was in a simaler situation and how they managed their budget etc??bfn x

Hi hillsong,

Are you in the UK? I'm not sure what you mean about the budget so that makes me think you are maybe in the US?

What medication were/are you on that worsened your CMT? There are a few that can worsen CMT symptoms so was just wondering what you are taking.

How old are you?

Hi Hillsong

Welcome Hillsong Good to have you here.

It would be good to know where in the world you are as, like Sam, I don't understand what you mean by budget.

hello hillsong. welcome
it's good to hear that you are enjoying your independance

Hi everyone what a lovely Welcome I live in Manchester. You may of heard of Direct Payments? they have changed their name to IBs - Individual Budgets Social Services arrange them after an assessment of 'needs' and you use them to employ someone to provide your care - I use an Agency for my 'personal care' as my P.A/Carer is Male.

I just wondered if anyone else was in a simaler situation??

Take care and speak again soon xx

hello Hillsong and welcome

I must say, I have never heard of the Direct Payments (or Individual Budgets) . I wonder if that is because the majorty of people with CMT tend not to need such advanced care?

I'd be interested to know how it works?

And again, I'd be interested to know what medication you are on for Epilepsy that has worsened your CMT?

Also, how old are you?

Your flat sounds great by the way.

Hi hillsong, welcome!

Hi I am 46- IBS or Individual Budgets are a new way of providing money to obtain the 'care package' you have been assessed to need. Everyone is encouraged now where possible to use one. For example I am assessed as needing 30 and a half hours a week support/care a bank account is opened and an amount of money is paid in each month. Manchester has a Social Care Section and they draw up a basic contract for your P.A I ring the hrs worked in monthly and they make a payslip out I then write a cheque from that account I have to pay employers tax and NIC when requested by Inland Revenue I also have to send an audit in for their inspection quarterly. I have a Broker whom Social Services employ to help with employment issues. It isn't easy but their is help to advise if I have a probleme.g training for P.A, CRB checks etc etc If anyone is struggling thay should contact Social Services and ask for a Care Assessment. I would be happy to answer any questions if I can.

The medication was Phenytoin which I had in a drip 3 years ago although I had been on it in tablet form for many years - bye for now and thank you x

We get direct payments for Bill. We are paid for 6 hours.We employ Crossraods for3hrs a week,& they come in while I am at college to give me a break, I chose to use the other 3 hours for cleaning once a week, as we have a big unmanageable house

Hi Annie - that sounds good to me...using the budget for cleaning....it is there to use in whichever way suits you best. hope you are well x

Hey, hiya hillsong. Great to have you on board. How is sunny manchester these days? Although born there I've been a 'southerner' since 11 (back in 1965) and only been back a couple of times.

Garth