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Motor Neurone Disease

(12 Posts)
caramel1 Sun 08-Jul-12 16:02:45

My Mum was diagnosed with Pseudo Bulbar Palsy in November last year.

I am not her carer as she has 3 other people living with her. I have been on the MNDA website and wish I hadn't.

As time has gone on her voice has got harder and harder to understand and now she is slightly unsteady on her feet.

Her and her partner are going to all sorts of different places while she can still do it.

I have 2 boys 14 & 6, the 14 yr old doesn't live with me.

It's been very hard for me as I have to be strong and all that crap, my LO loves his grandma and I have to periodically remind him that she is ill, last week I told him that her illness was life limiting and he has been very clingy ever since.

Has anybody else dealt with this shitty disease?

caramel1 Mon 09-Jul-12 10:04:00

Well, I'm either billy no mates or nobody has had to deal with MND

whosphuckoffy Mon 09-Jul-12 10:19:40

Read Tuesdays with Morrie, by Mitch Albom. It's a true story. If it doesn't help you, it's a bloody good read.

Have had no experience of dealing with this personally, by my heart goes out to you, it's a horrific thing for the person affected and the family of the person sad

caramel1 Fri 13-Jul-12 12:34:38

I have read the book, it's a good book because it discusses stuff with someone who is dying, but it didn't really help me.

Thanx for the recommendation though.

You are not alone! My FIL has this awful disease and has dementia as part of the package. MIL DH and I are looking at a care home for him tomorrow as MIL can no longer cope with him at home even with a live-in carer and night nurses.

Hi caramel. Thought I would update in case you are lurking.
My FIL died yesterday very peacefully. If you want to know how his MND progressed please post or PM me

homeaway Thu 23-Aug-12 09:33:08

Hi I am having a hard time as well my younger brother who is in his early forties most probably has the disease. He is an occupational therapist so knows what is coming his way. It sucks and at the moment I am really angry about it all. My kids are all older but finding it hard to deal with , we are all honest about it and nothing gets hidden.He lives around 1000 Km from us and it is not easy to get there . Just thought I would let you know that you are not the only one dealing with this. It is the thought of what is to come that scares me the most. Droit I am sorry that your FIL died. xx

Hi, I am so sorry for your awful news. My dad had this terrible type of mnd.
Have you been in touch with the mnd association? Mum found them invaluable. Offering support, equipment and advice. Def get in touch with them. If u want to speak to my mum or email her - she cared for dad whilst he was sick im sure she would be happy to listen and answer any questions. Where are you based? Remain strong and positive. Don't let the awful disease win. Never stop fighting. Huge hugs x

cuggles Sat 06-Oct-12 16:33:43

Hi there. My father died from MND in 2006 after a two yr battle, he had ALS but with bulbar symptoms so lost speech after first year and swallowing etc, was PEG fed and all that goes with it. It is truly crap, I can think of nothing more cruel. The MNDA assoc are brill and I would also recommend getting care packages, various therapists (speech etc) involved asap as it all seems to take an age to get organised...we did not get the medical bed until 3 months before he died and 24 hr at home care in the last week only. "Rowing without Oars" is a great book by a younger women with it, my sister and I found it very helpful. Please PM me if you want any info or want to scream and shout about how crap it is......hugs to you! XX

Mayanbob Fri 01-Feb-13 07:43:05

Cuggles- your dads story sounds similar to my dads, who died in 2003. I' echo comments about MND association. We still raise money for them now- we are so greatful.

Again, caramel if you want to PM me, please do so.

mypussyiscalledCaramel Thu 16-May-13 23:15:36

I have just wandered back to this thread, after a long break, due to my mh issues. Thankyou everyone for your replies.

Mum has to use her ipad to communicate all the time now, although sometimes I can understand her. She has an mnd nurse and has a disabled badge, so she can legally park anywhere. She uses her peg all the time, so if we go for tea, we eat away from her.

She spends most of her time doing sudoku puzzles and is knackered by about half five.

I went for a coffee with my stepmum ( my mum is gay) and she was telling me that my "lovely" sister was expecting mum to stay up way beyond what she was capable of. She lives up North so she doesn't see Mum much, but I never realised how deeply selfish she could actually be.

I would be amazed if she came down this way at all once Mum has gone, we're too provincial, you see.

At least I know that Mum can cope with my boys easier because they are quieter. Whenever we go round DS2 always makes a beeline for her and they sit playing on ipads and he will even mirror her postures.

A lot of people now treat Mum as if she is thick and either talk over her or ignore her completely. I hate seeing that, so if she is sat on her own I will always go and talk to her.

DS2 took his mnd workbook to school again today, apparently there were some people who didn't know what mnd is.

I think I have a mini me on my hands, he is compassionate, empathetic and artistic and is a stubborn little bugger at times. Just like me.

LadyMacbethWasMisunderstood Fri 17-May-13 15:26:07

My uncle had MND diagnosed in 2003. He died a year later. But I think for him the diagnosis came quite late.

My mother and her siblings were his main carers.

The MND association was really helpful to them.

It's a dreadful illness. It sounds as though your mum is quite positive.
The communication issue is something to prepare for as her function declines. As hard as it is try to anticipate how you will communicate if her hand control gets worse. I loved my uncle very much (he had no children and I was like a daughter to him). I found the declining communication very hard. He was a funny man, quick witted, and was frustrated by this too.

There was some evidence that creatine supplements might help delay deterioration. My uncle had them. I can't say they really helped him. But others thought they assisted.

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