Comments on: Motor Neurone Disease. How you can help

By: Monique

Monique — Sat, 19 Jan 2013 03:28:33 +0000

My dear friend’s husband has been battling the disease for the last 10 years. When he was diagnosed he was told he would have around 2 years or so to live (when his daughter was around 1). As a result he started writing a book for his daughter which has recently been published. It is quite incredible. Their story was featured on the 7:30 report. The link for the story and the book is below if people are interested in understanding more about the daily experiences of those with the disease.
7:30 report-
http://www.abc.net.au/7.30/content/2012/s3662975.htm
Silent Body, Vibrant Mind
http://peteanderson.org/?page_id=2

By: sam

sam — Sat, 12 May 2012 09:18:56 +0000

noelene we found the same thing with dad – the true friends stayed, the fair weather ones buggered off.

i am sorry you are being abandoned when you need them most

By: Sam

Sam — Sat, 12 May 2012 09:16:36 +0000

Naomi i feel your pain – though mine is only my father and nearly his entire maternal side (one sibling and a handful of cousins remain alive) – it was swept under the carpet until he was diagnosed, then 3mths later he was gone. I’m in the twilight limbo land of deciding if i want to be tested or not – initially i didn’t (he passed 8 years ago, we have blood stored for testing) – i have 4 children now, and i’m 32.

The youngest in our family passed when he was 33 – 8 weeks after diagnosis (we apparently like to take the quick route – which to be frank watching others suffer longer ultimately we have been somewhat blessed in that dept if you can use that phrase in this context). I have had pneumonia lately and can’t shake it – it is how my dad started – and whilst rationally i know it doesn’t mean anything (or as my GP put it it’s like comparing an elephant and a giraffe) – irrationally i worry – a lot. I look at my tongue for those tell tale quivers, i look on my left shouldblade for the muscle spasms i know will come as the first indicator something isn’t right.

no one can truly understand what it is like until they have lived it – and it’s not something i would wish on my worst enemy – i watched the proudest and strongest man i know be reduced in such a rapid time to a child – reliant on us for everything no one should live like that

By: Cleo

Cleo — Sat, 05 May 2012 06:41:52 +0000

My mother, her only sister, their fathers mother died form it, now the son of one of their cousins has it. I don’t know if I want to be tested, knowing you can’t to anything to prevent it, I wouldn’t want to know that I had the gene, I’d be always expecting it.
People see Stephen Hawking & think you can live for years, but don’t realise that he can’t do anything for himself, including breathing, eating & speaking. Most people really don’t want to live like that – And couldn’t afford the staff anyway.

By: noelene paikea

noelene paikea — Thu, 03 May 2012 02:37:30 +0000

Thankyou Naomi for telling your story.my husband has MND bulbar Onset and his speech has just about gone and eating is a big problem.but biggest problem is or family and friends,not able to understand what is going on and they stay away,which is really hard on my husband.i have posted your story on my FBpage so they can read it and might be easier for them to understand

By: The disease for which there is nothing « Kate McEvoy Richards

The disease for which there is nothing « Kate McEvoy Richards — Thu, 03 May 2012 00:43:41 +0000

[...] article was originally posted on Mamamia on Wednesday 2 May. Share this:TwitterFacebookLike this:LikeBe the first to like this [...]

By: Carol Birks

Carol Birks — Thu, 03 May 2012 00:36:32 +0000

Thank you Naomi from MND Australia for sharing your story and highlighting the devastating impact of MND ahead of MND Week. Just wanted to let everyone know that about 10% of MND is ‘familial’; that is, there is or has been more than one affected person in a family. The remaining 90% of people with MND are the only affected person in their family and are said to have ‘sporadic’ MND. In the 10 % of cases where it is familial identified gene mutations are found in about 60% of those cases. The genes that cause the other 40% of cases of familial MND are yet to be discovered. Please call the MND association in your state or territory if you would like to talk about genetic testing – http://www.mndaust.asn.au/state-mnd-associations/

By: Kate Richards

Kate Richards — Wed, 02 May 2012 11:14:45 +0000

I applaud you Naomi for having the strength and courage to share your story.

By: Melinda

Melinda — Wed, 02 May 2012 11:04:32 +0000

Thank you for this article. My grandma died of MND. She died while I was still a toddler so I don’t remember her, and it’s too painful for my mum to talk about. Ridiculous that politicians can squander millions on various frivolities but not fund important research like this! Anyway I didn’t know you could be tested for the gene. Could we have some info on where & how this is done, please?

By: Joseph

Joseph — Wed, 02 May 2012 10:24:56 +0000

Thank you Naomi. My father passed away about 9 years ago of MND when I was 12 yrs old. From the time he was diagnosed to when he passed away was only 9 months. I remember sitting and talking with him all the time but he couldn’t move any part of his body. I’m glad his suffering is over as you are 100% right when you say it is the worst disease out there. Fantastic work trying to make a difference and promote awareness of this illness!