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Jock
16th November 2014, 08:02
This past week t' wife and I got our higher beds made possible by a grant from the MNDA.

I took delivery of a motorised recliner made to order in the Vale of Glamorgan by Wilcare. That was funded by the MNDA.

Possibly this side of the New Year I'd get a motorised wheelchair from Wrexham - again MNDA funded.

If anyone out there needs similar support then it's there.

Thank you MNDA :)

Terry
16th November 2014, 12:11
Sounds like Christmas Jack;

How everything suits you and fits well.

Terry

Alig2014
16th November 2014, 12:36
I am going to contact them about Jeans communication. Will phone speech therapist first and then mnda to hurry things along.

Alphabet board is all well and good if you have the ability to point but for Jean we are almost down to grunts. My daughter and I are the only people who can understand anything and it all adds to the frustration.

Alison x

Jock
16th November 2014, 13:12
Alison: All my/our stuff was arranged by my OT - working with MNDA.

willsandco
16th November 2014, 13:53
Jock, this week MNDA have funded towards a wet room (which starts tomorrow) and a bio bidet. Thank you so much, MNDA

john
16th November 2014, 14:40
Hi Alison,

Irene and I used an alphabet board until the day she died. She blinked when I pointed to the appropriate letter and we built up words from that. Frustrating and occasionally amusing. Hope this is an option for you.

a b c d
e f g h
i j k l m n
o p q r s t
u v w x y z

Used the above and a selection of frequently used words on a sheet of laminated A4.

John

Trevorhb
16th November 2014, 15:09
Do MNDA means test? I bought a iPad and the Predicable app because I can afford it. I am very reluctant to take help when I can afford to pay. My wife does not agree, I even resisted applying for Attendance Allowance, but that is just me.

Treelover
16th November 2014, 15:39
Same here Trevor. Our family has raised over 30,000 for MNDA and hope it goes to research and to help those that can't afford the aides that we can buy.

Trevorhb
16th November 2014, 15:52
To me it is a point of principle, if you can afford it , you buy it, not expect the cash strapped NHS or Social Services to pay. That then releases funds to help the people who need it. I am far from wealthy by the way, just have savings built up prior to retiring which can now be used to fund things I need to help me live with MND.

Alig2014
16th November 2014, 17:33
Will give that a try John. I personally can eventually work out what Jean is saying but the carers really struggle.

Alison x

Jock
16th November 2014, 21:11
All my items are on life long loan - although I'm not sure if the MNDA will want the used beds back after my death.

Terry
16th November 2014, 21:42
I feel a little different to some of the others and also have my wife's future to bear in mind when I've gone. I am quite happy to get things from the state where I can and try very hard to get things from there, I have also received quite a bit of help from the Mnda over five years or so.

Terry

Springtime
16th November 2014, 22:43
Hi All,
Its very difficult as none of us have a crystal ball, so its trying to balance what is needed now and what help can be given to buy these things to make life more comfortable and easier and what will be needed re (pounds, shillings and pence!!!!) for us to have a comfortable life in the future. Its just trying to get a balance.

Spring x

Frank
17th November 2014, 02:21
I totally agree Terry. I also want my wife to be secure when I depart, so I will take everything that is offered. Also remembering that I have paid my 'national insurance' all of my working life, which I consider to be payable now that I need it. Surely the definition of insurance?
It's a nice thing to pass on your quota of the NHS budget to someone else, but personally I will make sure Jacky is ok first.
xxx Frank

Jock
17th November 2014, 05:48
I am trying to address the balance by volunteering for research and donating spinal tissue. I don't feel compelled into a tit for tat situation, it's just something I want to do for a future generations.

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