It keeps getting better

[GaryM]

Matthew's experience is not filling me with confidence. I'm waiting for an appointment for a breathing assessment at the same place. It's a bit disconcerting when the members of the forum (well one member actually) knows more than the specialist caring for you. 🙄

[matthew55]

It's the sheer arrogance of thd e staff who think because they treat MND livers that they know all about our symptoms and we can't possibly have anything different. Unbelievable. 😠

[matthew55]

Admin kept messaging me yesterday but didn't read any of my posts. Writing is becoming too much to deal with yet they kept wanting me to explain the same thing over and over. Beware wolves in sheep's clothing. 😠

[Bowler]

How did you sleep last night.

[matthew55]

Fitfully and had to get up at five because my head was full 😢

[denise]

Oh Matthew we are all here for you. Might not seem like much but it's the best we have. 😚

[matthew55]

Yesterday I was crying out for help and all I got in return were flippant remarks. You are right that it doesn't feel that way.☹️

[denise]

We are having trouble figuring out what happened.

[Bowler]

Yesterday I was crying out for help and all I got in return were flippant remarks. You are right that it doesn't feel that way.☹️

I’m truly saddened you feel like that 🥲

[matthew55]

You should know I only say what I think. Bad or good I never gild the lily.

[denise]

I mean at the hospital. Did anything get sorted? We know there was a problem with the breathing gear. Did you get to talk to the consultant?

[matthew55]

Why do I have to keep repeating myself? I think I will leave this bed of vipers and find my own way. It was ever so.

[Heather R]

Just sending love, Matthew x

[Admin_MND]

Hi matthew55 ,

It was our colleague in the MND Connect team who was private messaging you yesterday and trying to help and support where she can.

We are sorry you feel you are having to keep repeating yourself, with several threads currently live it is hard for us to follow exactly what is going on. If you could respond to the private message from MND Connect they will then be able to help and support you.

Many thanks,

Forum Admin

[MNDConnect]

If anyone is ever struggling with suicidal thoughts or difficult emotions then there are various places where support and help can be found

• Your GP, Specialist Nurse or Consultant Neurologist
• The NHS helpline NHS 111
• Samaritans 24-hour support service on 116 123 or at [email protected]

MND Connect is also here to provide any support and help that we can. We are here if you need to talk to someone. We are also always happy to liaise with health and social care professionals on your behalf if you are having problems with anything so please don’t hesitate to get in touch. We are available either by phone on 0808 802 6262 or by email at [email protected] Monday-Friday 9am-5pm. We also have a group of experienced volunteers who are able to provide emotional support on 0808 802 6262 Monday-Friday 7pm-10:30pm.


Best Wishes
Rachel
MND Connect Adviser