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Original poster

Motor Neurone Disease

22 replies

nappyaddict · 08/02/2008 19:39

My uncle has just been diagnosed with this. does anyone haveany experience of it? all i know is that there is no cure

OP posts:

bundle · 08/02/2008 19:43

oh nappyaddict, I'm so sorry. I hope someone comes along soon with some advice/experiences to share, x

DualCylinderCod · 08/02/2008 19:43

yes my mates dad had it
was just getting to teh wheel chair stage when he got pneumonia. i knwo it is a very harsh disease and my mate in all honesty was glad that it didnt get to the very end.

i wish i coudl find soemthign nice to say. sorry

bundle · 08/02/2008 19:49

support from MND assn

Original poster

nappyaddict · 08/02/2008 19:52

i asked my aunty about hospices and respite care but apparently you can only get that in the terminal stages.

OP posts:

bundle · 08/02/2008 19:55

crossroads, carers' organisation

PeatBog · 08/02/2008 19:56

So sorry, nappyaddict. My MIL has it. Bundle has put up the best link for you. All I can add is to make sure your aunt or whoever is caring for him is aware of all the benefits and carer's allowances, etc, you're immediately entitled to.

Eve34 · 08/02/2008 19:56

You can get respite at any stage of a terminal illness if you are a carer it is a right. MND is a degenerative illness that will affect ther persons physical state although I believe mentally they stay very capable. I know the specialist nurse in Berkshire if you are that way I can put you in touch. It is a horrid disease i hope that you have lots of love and stregth around you at this difficult time.

PeatBog · 08/02/2008 19:57

It's still a good idea to find out which hospice he can go to when needed. I'm afraid it can deteriorate quite quickly.

Original poster

nappyaddict · 08/02/2008 20:10

how long does it usually take to deteriorate?

OP posts:

PeatBog · 08/02/2008 20:50

They give you ball-park estimates on the MN website, but like all these things I would guess it varies from person to person. My MIL has had vague symptoms for about 7 years, but has deteriorated rapidly over the last 6 months.

Original poster

nappyaddict · 08/02/2008 20:52

what were her symptoms like in the first 7 years? did she get any hospice care during that time?

OP posts:

hairtwiddler · 08/02/2008 20:59

So sorry nappyaddict. The MND association is very helpful with lots of information sheets you can download.
There are different types of MND, some more rapidly progressing than others. Lots of areas will have specialist nurses who provide support and advice. Making sure your uncle has access to occupational therapy, physio and speech therapy if needed will also help. Does he have family who might also need support?

Original poster

nappyaddict · 08/02/2008 21:34

how soon do they normally know which type it is? he only went into hospital this week. when will he be allowed home?

OP posts:

PeatBog · 08/02/2008 22:05

NA, it will depend on the doctor's assessment of your uncle how long he stays in hospital.

My MIL's symptoms in the first 7 years were quite mild, just difficulty walking and her speech became more slurred.

mollymawk · 08/02/2008 22:16

Really sorry to hear this nappyaddict. My DH's aunt has just (last week) died from this. Since her diagnosis she found the MND Association extremely helpful (bundle's link above), so I would recommend getting in touch with them.

Original poster

nappyaddict · 08/02/2008 22:23

my uncles only in his early 50s aswell

molly would i be able to email you and also you peatbog?

OP posts:

mollymawk · 08/02/2008 22:28

Yes, please do. I think CAT should work...

Original poster

nappyaddict · 08/02/2008 22:29

i don't have cat. email your address to tobys_mummy at btinternet dot com

OP posts:

Tamum · 08/02/2008 22:30

I agree that MNDA is a good place to start. There is a lot of palliative care that he should be ableto access- speech therapy and help with swallowing, later on. It's very early days but there was a paper published this week showing that lithium can slow the course of the disease- it's in clinical trials (though maybe not yet in the UK) and is worth asking about as it should be pretty well tolerated. It's also worth checking the ALS Association website for clinical trial stuff (ALS is the American name for motor neuron disease- amyotrophic lateral sclerosis). I'm really sorry.

GrinningSoul · 08/02/2008 22:35

my dad had this . he was 72 when he was diagnosed; he'd had a few odd falls in the months leading up to this, and weakness in his legs. He died before the symptoms became too awful, of a pulmonary embolism, as he had been bedbound for a few weeks. Kind of a blessing. I was just pg with my first at the time, so glad i'd told him before the scan...

amyjade · 09/02/2008 10:42

My mum's best friend has had motor neurone for around 15 years she is 50 now and although she uses a wheelchair and her speech is a bit slurred she is still very independant and leads a relativly normal life. She has home help but is able to do the most important things by herself(like using the toilet).
I think each case is individual and some deteriorate quickly and others like my mum's friend can go for years without the disease progressing further.

GrinningSoul · 09/02/2008 11:52

that's very encouraging news. sorry I really didn't mean my post to sound so unsupportive. i meant to say that each case is different, and it's very hard to predict what will happen as it runs its course. it is important that someone is on the case with regard to getting all the support you can as quickly as possible, as there are lots of ways everyday life can be made easier. my dad became a very mellow man once he was diagnosed and seemed to take it all in his stride.

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