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The cost of MS

I’m sick of MS. The financial cost to me and my wife:

£7,000 for 2 wheelchairs

£6,000 for a ramp into my garden

£12,000 for a wet room

£600 for an air mattress

£13,000 for a through floor lift

£2,000 for a hoist in my bedroom.

My wife earns too much for us to qualify for any benefits.

As if the illness wasn’t cruel enough …

Hi DLA is not means tested.

monty understand your pain my hubby earns too much and yes i have full dla for motability, but it buys me my car but doesnt fill it , saying that i dont have to go through the stress a lot of folks have to go through,so yes it is expensive, i wish to go on holiday but would need someone with me as hubby doesn’t want me to go anywhere that i would be in danger a bit panicky in his part me thinks

You should get some of these from OT’s etc unless you wanted more advanced(better?) ones that they would not cover. They usually provide basic stuff -hoist etc

Up here it does depend on how loud you scream and stomp at higher levels I’m afraid . Also depends on what criteria is in your area.

Up here damned if you do buy your own better one then you are liable for the maintainance of it as OT’s etc won’t look at it…

God £12000 for wet room my inlaws just got this done and were £5000 and I thought that was expensive!

It is ridiculous tho as you say having the disease is bad enough and its not like we have a choice in the matter…

Hi, wow! I thought we`d spend a lot!

But I stopped counting when we had an overdraft!

Ive bought 6 wheelchairs, beds and mattresses, walkers, french doors and decked access in and out of house, wet room, commodes, 5 new bathroom and wet floors and another is imminent, constant repairs to doors and decor when I gouge em with my wheels, bedding, a washer cos I wear em out and oh the list goes on and on. Then there`s the cost of adapting a mini bus into a camper…3 times!

Yes, I do ask for help from OT and Housing Adaptations now.

We were means tested for the hoist and there was a shortfall, which the MSS generously helped with.

As a general rule, OTs will supply some things free of charge, but if a job costs over £1k, it has to go to DFG and that is mean tested.

Yes, expensive life with a disability, I know!

luv Pollx

Multiple sets of crutches and walking sticks, rolly walker, wheelchair, electric sccoter, smaller electric sccoter so I can get it in the car as I can no longer manage a wheelchair, level indoor/outdoor access, door way widenings, wetroom, disabled kitchen renovation… the list has increased in complexity and cost as the disability has worsened.

Because I was unable to get DMDs for so long, the MS got its claws into me good and proper. I often wonder how things would be now if the first neuro I had seen had put me on DMDs straight away instead of dithering around for years?

However the above list totals about $40,000AU in total. Out of pocket cost to me? Zero… for all its faults at least the Australian disabilty scheme does cover home renovations in the belief it is cheaper to keep people in their own homes than have them end up in a nursing home. I could never have self funded all of these essentials and I would be up the proverbial creek without these modifications.

Surely the UK has disabilty funding for essential modifications too?

But yeah, bloody expensive business being disabled I just consider it as all the taxes I paid over the years now coming back to me

B

Hi Belinda, yes the UK does have some funding for disability equipment.

Trouble is there is always a waiting list and means testing for anything which comes under Disabled facilities Grants.Things like grab rails, door widening, shower seats, beds, walkers, wheelchairs are free.

We used my early retirement money for a lot of stuff in the early days. Got no money left now, so I ask.

Good to hear you`ve got things you need.

luv Pollx