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Motor Neuron Disease - Info or suggestions ?????

Sophie M skm809 at bham.ac.uk
Fri May 2 12:23:42 EST 2003

Hi Jill,
It may not be the 'typical' onset, but there is such wide variety in
MND that many people fall into this category. it is true that there
can be some misdiagnoses as it is often a difficult illness to
classify with 100% confidence in the early stages.

Although I cannot tell you that there is a cure available, and the new
treatments being put through clinical trials at the moment seem to
achieve only modest improvements in quality of life, or slowing the
disease progression, but i would urge you to get in touch with an
organisation such as the MNDA (www.mnda.org). The "care services"
section should help you get sources of information and support. there
may be a local branch near you.

The MNDA will be able to let you know what help you should expect from
your local government services, offer advice, tools and ideas for
maintaining as high a standard of living/ quality of life as possible,
and let you know what challenges and problems you are likely to
encounter, so you will feel well prepared.
They also fund and conduct research into both clinical care and
patients well-being, and into the basic science underlying the
disease. If you are interested in finding out more cal the helpline.

Whatever the prognosis is, I hope you are able to get all the support
you need.

Best Wishes, 

skm809 at bham.ac.uk

"Jill Ruddell" <sts at emirates.net.ae> wrote in message news:<b8f39g$de06 at news.emirates.net.ae>...
> Perhaps someone out there can help me with a similar case or a suggestion.
> My Dad, age 72, living in Scotland, has just been diagnosed with Motor
> Neuron Disease after a muscle biopsy taken after 7 weeks in the hospital. He
> was admitted with breathing difficulty and a day later suffered respitory
> failure. This was his only symptom and was not evident at any time prior to
> hospitalisation. He is now not able to clear his CO2 and relies on a C-Pap
> mask to get him through the day. He is also very weak, again a symptom that
> appeared very suddenly after hospitalisation.
> Since Dad was diagnosed I have been searching the web but it appears that
> his symptoms are not typical as an onset for ALS/MND. The docs in their
> wisdom are now going to send Dad home with this C-Pap mask and have said
> there is no cure nor is there anything more they can do for him.
> I would appreciate if someone could get in touch with me if they have a
> similar story or a suggestion
> Thanks for listening and God Bless to all
> Jill Ruddell

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