View Full Version : Hi All, Feeling Sad and Angry

23rd September 2011, 21:15
Will repost

23rd September 2011, 21:33

i will try and reply later tonight, i think you really need to push to get an OT and speech therapist involved and try to see if she is eligible for a disabled facilities grant- as the difficulties that your nan is experiencing are unecessary with adaptations. you may need to push and fight a bit- why not givec MND connect a call

thinking of you

23rd September 2011, 21:51
Hi Emma,

So sorry to hear of your nan's diagnosis, it sounds like you've really had a lot to contend with as a family. You say that an OT came round to do an assessment - has nothing happened since then? It seems as if the progression has been rapid, but you should have had help to put some care measures in place by now.

Firstly, have you had any help through your nan's GP practice. This is usually the first call to speed up palliative care - the GP is at the core of accessing this.

Also I'd strongly recommend you, or your parents as your nan's first line carers, speak to MND Connect if you haven't already (and from the sound of it you haven't). There's a link at the top of this page to the relevant section on the Association's main site.

They can give medical, practical and even financial information and offer help and advice. They can also put you in touch with your local Regional Care Development Adviser who can tell you about the services the MND Association can offer.

The Connect helpline is available until 10.30pm tonight (Friday), but then not again until Monday. The full hours are: 9am to 5pm and 7pm to 10.30pm Mondays to Fridays.

Give them a call and they will be able to help you further once they have a better idea of where your nan is with her medical care etc.

Best wishes and good luck with getting your nan the help she needs.


PS. You could also spend a little time looking through the other threads on the forum - there is plenty of advice to be found here on a personal level. Use the search facility at the top of the page to help you locate any specific topics you need help with.

23rd September 2011, 22:48
Hi Emma ,

I can't emphasise enough how important it is you contact MND connect asap, you will start to feel like someone is listening and can/will help.
My dad was diagnosed in Novewmber last year, my dad only turned 61 in May and as you we all felt (and still do feel) angry and frustrated. My dads speech therapist was next to useless, his GP wasn't great and unfortunately for us I didn't get in toch with MND connect until May, but when I did they were very, very helpful and got an Occ. therapist organised and a Macmillan nurse,,,,unfortunately it was too late for my dad.

I really feel for you and your family it really sickens me to think about how many more people have similar experiences.

Michelle x

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