Are you joking?

[Cinderella]

I looked up 'ironic' to see if it covered what I am going to write and this is what it says:

"happening in a way contrary to what is expected, and typically causing wry amusement because of this."

I think it covers it, but make your own minds up...

I have paid into the same health insurance cover since 2004, so quite a few years - when I called them to say I have just had my kidney removed because of cancer and was diagnosed with mnd at the same time, can they help me in any way? The answer was no, but they could help with diagnosis if I got anything else....
I cancelled my policy!

and

I have paid into life assurance since 1981 - so would think I'd be well covered for both of these issues - however as the pensionable age for women was 60 at the time and I am now past that....yes, you got it

So getting a diagnosis early is important for many reasons and a gripe from me is that if we are all so different in progression, then every one of us should be part of research to find the common denominators that could provide some answers

[denise]

Good heavens. No pip past pensionable age either. Youngsters think us oldies have it made but the more you try to help yourself for the future the more you find you shouldn't have bothered. I don't know what the answer is. I continually fall flat on my face.

[TinyLady]

I'm a youngster by comparison. So I do get PIP. But I still have a massive mortgage to pay and a lot of the practical help is only for older people. My husband is working and has an important career, he's only 44. So we can't retire. I sit in a chair pretty much all day, every day.... not even a comfy chair - my powerchair!

I think whatever age you are this throws up massive challenges. Not least when your children are still at school and you can't even phone if they are off sick....

My health insurance won't help me either. They don't deal with chronic conditions apparently.....

I too wish we were studied more closely. No one is in the least bit interested in where I am in terms of stages and how I am progressing.

I think extensive surgery was my trigger.

[Cinderella]

I can't think of a single thing that would have triggered it - I have never smoked, barely touched alcohol and being an avid gardener was strong and fit and lived off lots of my own organic produce most of the time...beats me...

[denise]

It's a mystery. Like the falling down issue 🤔

[Madge]

TinyLady can your OT help with getting a riser/recline chair for you which will be more comfortable x

[TinyLady]

Madge the MND Association are helping me to get one. I think they realise I am severely lacking in support. I had the rep measure me and quote on Tuesday. But it needs to be made specially - smaller than usual and in cloth as I am allergic to the plastic. I can't wait to get one xx

[Cinderella]

Hi TinyLady

On page 24 of the mnd magazine that came through the post today they state - Fourteen community specialist roles are being created - and that they are recruiting in Northamptonshire as well as 14 other areas - they provide a project contact of Gary Birkenhead, Care Improvement Programme Lead - [email protected]

[TinyLady]

How did you get a copy of this magazine? Sounds interesting. No idea why I don't receive it... is it from MND Association?

My local MND Association contact says they are hoping to get an MND nurse next year.... so not sure if the article is wishful thinking or a way to stop me pestering. I'm absolutely desperate for some support here. I'm at my wits end, in pain and very scared with no one left to beg for help from. It's a horrible situation. I feel no trust and just loads of anger towards the NHS.

[Bowler]

[QUOTE=TinyLady;n87927]How did you get a copy of this magazine? Sounds interesting. No idea why I don't receive it... is it from MND Association?

Try emailing the Admin_MND team to check why you are not on the mailing list

[Cinderella]

Morning TinyLady

You won't believe it but it is a quarterly magazine of the mnda with the contact address listed as Northampton....!
It's available as a downloadable pdf at www.mndassociation.org/thumbprint
They can be contacted by telephone - 01604 250505 or email the editor - [email protected]

[Miker]

@Tiny Lady, the difference in support between different parts of our country is crazy. In Shropshire the palliative team that I was referred to are linked to Severn Hospice, and they have been brilliant managing things within their control. I was provided with a rise/recline chair quite early on. My carers OT has been excellent. On the other hand my experience of private care companies has been very hit and miss. I get the magazine and invites to meetings from MNDA. Here's hoping you get better support soon.

[TinyLady]

Thanks everyone. I will contact them and request to be on the mailing list! Xx