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[purplenanny]

Hi everyone
a very good friend has been diagnosed with this disease, with her throat and speech being affected.
I wondered if anyone has any knowledge or experience of the illness so I may help her in any way
she has been told of a pill that would possibly extend her life by 3 months but has awful side effects.she has decided against it. Her prognosis is up to 10 years, it started 4 years ago and
they initially thought it was bells palsy
I have looked at websites and the form she has seems unusual in as much that her body is not currently affected
thank you . PN x x

[CLKD]

   ………. there are support groups.  I had a friend with MS but didn't realise how badly she was affected as we didn't see her for years ++ ………. is your friend able to go out and about?  Does she have children …… perhaps lots of 'photos etc. so that she can build up a scrap book ……...

[purplenanny]

Oh yes, she has a husband who is very supportive and they go out and about. It is only her talking and swallowing at the moment. Sorry, I don't mean to say only in that way, her limbs are not affected.
She also has family and is a very strong, positive lady.
The world can be a cruel place, she is such a lovely, caring person. Only just been diagnosed so is trying to come to terms with it.

[CLKD]

She probably had some idea if she has had symptoms for 4 years, however being told the reality is different to being able to wonder if it is something less ……….

Is this a condition which goes into remission? or pauses in it's intensity?  I think friends should ask someone with a chronic condition what they need to do: in the short term and also as the disease progresses.  So that people don't phaff around!  Friends when I had surgery took up different household chores, i.e. ironing, hoovering etc..

[honeybun]

Steven Hawkings has this and has defied medical science and its predicted outcome.

It just goes to show that there is no "norm " with this kind of thing.

I hope your friend continues to remain positive and the progression is very slow.

 


Honeyb
x

[Limpy]

I don't have experience of motor neurone disease, but I do of MS. A few things come to mind when diagnosed;
1 - Keep on doing as much as you possibly can, use it or lose it.
2 - Contact organisations that have knowledge e.g.  http://www.mndassociation.org/
3 - Remember Stephen Hawking, he is still here now.

Please get your friend to get as much help as she can, she will be getting very tired. However, she also does need to do as much as she possibly can, it's not straightforward.

Be very very careful of any pills that are suggested especially those with known adverse side effects.
No,  just be careful anyway.

Send her lots and lots of hugs

[purplenanny]

Yes I asked her today how I could be helpful. She said she knows she can ask when necessary. She did have an idea it was this, but as you say, it is different when reality hits.
looking at the websites it says there are several processes in coming to terms and the first is denial, believing the doctor has it wrong. She did say this to me
I see her regularly so will continue to support her where I can
I feel so very sad but did my best to lift her spirits today

thank you limpy and hb

pn x x

[CLKD]

Also sufferers don't always want to be seen as a 'victim' ……… she and you are on the 'right' wave length and should do OK through this un-wanted journey

[purplenanny]

I hope so, thank you. x x

[Ju Ju]

When my sister was diagnosed as terminally ill, I took her lead as to how much we discussed her illness and carried on doing as many things together that we had done before for as long as she was able. She felt able to ask me to do things for her as she became more ill. Just knowing that you are there for your friend and that you care will mean a lot to her.

[purplenanny]

Thank you for sharing that with me JuJu it is very helpful. I am very sorry for your loss. PN x x

[Dyan]

So sorry to hear about your friend PN.
She has a good friend to support her.
Give her a 

Love Dyan X

[purplenanny]

Thank you Dyan x x