Hello

[LesleyB]

Hi Lesley,

From another Lesley. I have followed pretty much the same path as you. Only my problems started with my foot. Nearly two years on and my other foot is the same . The loss of indepedence is over whelming. I always could just jump in the car and take the dogs out, nip to meet friends. We own a pub , so for the best part of a year we have been shut. So my husband has been here to see my decline and is shocked at how much I did in the house plus shopping etc.

I got a wheelchair the other week and he can take me out for a walk most days.This has made a big difference to me, I have spent months looking at rooftops of the house facing us.

All the best and I like you just put on a brave face evryday.

Lesley

[SueM]

Hi Sue,I found the PIP helpline we’re brilliant.Once I said I have MND and my GP issued as DS1500 I quickly got the highest rate.If Like you I would have had to wait 16 weeks I would have missed the opportunity to get a car on motabilty scheme because I reached 66 and received state pension.This would have put me outside the criteria for the motabilty scheme.
You may not be in my age bracket but thought I would mention it and encourage to to try PIP helpline
Best wishes
Mary

Thank you Mary, but as I have PMA type of MND I don’t fit the criteria for a DS1500, I’ll just have to wait

[denise]

hi lesley
i look after my husband who was diagnosed 2 years ago. its still a shock. im not sure how we deal with it really its a case of doing our best everyday but some days the whole thing hits, usually through tiredness, and its all very daunting. our problem is we are in portugal and very keen to return home. not like we dont have enough to deal with

im glad you found this forum and all the wonderful people on here. you will never be alone.

love and hugs
denise xxxxxxx

[richard]

Mary C Very similar to me, retirement looming, plans to travel more and enjoy retirement with my wife and then BOOM! Like you my wife and I have a strong faith.
I am in the process of looking for a drive up front wheelchair accessible vehicle. I have found one which hopefully I can buy. I chose not to use Motabilty as they wanted a £20,000 upfront deposit and then my PIP for five years. That totals £55,000 and I thought no way.

Again like you I am showered and ready to face the world but I haven’t put lippy on 😂

Richard

[Mary C]

Hi Richard, yes was 66 last October.I planned to retire as a hospital social worker in October 2020 but MND meant I had to leave work June 2020 due to diagnosis and mobility problems.
Retirement plans abandoned and replaced by more simple pleasures each day along with trying to make our home easier to manage as symptoms change.
Having a wheelchair access vehicle on motabilty scheme helped up to plan ahead a little for when I need to be wheeled into the back.At present I can transfer onto passenger seat.
I count my blessings daily but of course have moments when I wonder how I will cope as more limitations occur.
Well for today..showered and lippy on,smile on my face, prayers said so ready to enjoy today .Best wishes
Mary

[richard]

Thanks Barry,But I was 65 and 10 months when awarded higher rate PIP
Mary

I know I shouldn’t ask a lady this but “Had you reached retirement age then?”

Richard

[Mary C]

Thanks Barry,But I was 65 and 10 months when awarded higher rate PIP
Mary

[Shaun]

Thanks Barry, Phil for the info on PiP and retirement age, for some reason I thought it stopped at retirement age , and replaced with AA, hadn’t really thought that far along .
shaun

[Barry52]

For clarification the motability scheme is open to those over 65. The PIP scheme is the factor here because you must be under 65 to qualify and be assessed at the higher rate. As Mary said she got in just in time. Of course the system is flawed.

[Mary C]

Hi Bowler.
What I was told by PIP helpline that if was if I was 66 and in receipt of DWP pension I would have had to apply for attendance allowance and not PIP.If you are on attendance allowance it cannot be used to lease a car through motability scheme like it said on last sentence of what you posted.

I managed to apply for PIP before I got to 66 and in receipt of the DWP pension.So Happy to be eligible for motability though.I applied a couple of months before my 66 th birthday .

I can only say this was the information I was given by PIP helpline and presumably people who think they might be eligible and are over 65 will check the eligibility criteria for themselves.
Thankyou for the information
Best wishes
Mary

[Bowler]

Hi Sue,I found the PIP helpline we’re brilliant.Once I said I have MND and my GP issued as DS1500 I quickly got the highest rate.If Like you I would have had to wait 16 weeks I would have missed the opportunity to get a car on motabilty scheme because I reached 66 and received state pension.This would have put me outside the criteria for the motabilty scheme.
You may not be in my age bracket but thought I would mention it and encourage to to try PIP helpline
Best wishes
Mary

Mary not sure being over pensionable age prohibits anyone from joining the motability scheme. Copied this off the web

If I'm over 65, can I still join the Motability Scheme?


You can apply to join the Motability Scheme if you are aged 65 and over and you receive one of these mobility allowances:

• Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP)
• Higher Rate Mobility Component of Disability Living Allowance (DLA)
• War Pensioners’ Mobility Supplement (WPMS)
• Armed Forces Independence Payment (AFIP)

You must have at least 12 months remaining on your allowance when you join the Scheme. Unfortunately, the Attendance Allowance cannot be used to lease a car through the Motability Scheme.

[Mary C]

Hi Sue,I found the PIP helpline we’re brilliant.Once I said I have MND and my GP issued as DS1500 I quickly got the highest rate.If Like you I would have had to wait 16 weeks I would have missed the opportunity to get a car on motabilty scheme because I reached 66 and received state pension.This would have put me outside the criteria for the motabilty scheme.
You may not be in my age bracket but thought I would mention it and encourage to to try PIP helpline
Best wishes
Mary

[SueM]

Welcome to the forum Lesley, I was also diagnosed last September, I do have a slower progression though. I applied for PIP 16 weeks ago and am still waiting.
Take care Sue x

[GaryM]

Hello Lesley and welcome
regarding PiP , I had to wait 3 months for a reply after submitting the claim firm, was only expecting to get part of it but got the full amount and it is backdated to your claim date. So that was a nice bonus
shaun

Same here and Louise has just got Carer's Allowance backdated to September. Which is better than a kick in the teeth.

[Shaun]

Hello Lesley and welcome
regarding PiP , I had to wait 3 months for a reply after submitting the claim firm, was only expecting to get part of it but got the full amount and it is backdated to your claim date. So that was a nice bonus
shaun