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Re: Primary Lateral Sclerosis (PLS)

Re: Primary Lateral Sclerosis (PLS)

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Posted by Mark Weber on November 28, 2000 at 17:06:30:

In Reply to: Primary Lateral Sclerosis (PLS) posted by Susan on October 10, 2000 at 21:40:19:

The first place to go for info is the PLS Website, at http://www.geocities.com/freyerse/index.html This site has numerous links that could keep you reading for weeks. If you are just beginning to search for info, check out "What is PLS". Also see "PLS Treatments" and "Alternative and Herbal Medicine". "Research" and "Educational" and "Links" are also excellent--as is the rest of the site.
Also see the PLS Awareness Website at http://www.geocities.com/mdmfoo/pls.html It has great info on our campaign to raise money to begin research on the cause of PLS. It includes numerous links to merchants that donate a portion of their sales through the site to PLS research.
There is also an online support group for PLSers and their loved ones. For info, go to http://www.egroups.com/group/PLS-FRIENDS For PLS news (there isn't much of it.), go to http://www.egroups.com/group/PLSers-NEWS . For abstracts of medical journal articles, go to http://www4.ncbi.nlm.nih.gov/PubMed/ Enter the phrase "primary lateral sclerosis" in quotes (as I just did) and click "GO". If you forget to use the quotes, you will get loads of irrelevant abstracts.

I publish a PLS newsletter called "Synapse". If you wish to subscribe, let me know. Synapse is free.

I hope that I have given you enough to get you going. No doubt by now you have already seen a lot of this info.

Good luck.

Mark

: My 80-year-old mother has been diagnosed with Primary Lateral Sclerosis. Although we have been told she has likely had it for at least 10 years, symptoms (speech and balance problems) didn't appear until about 3 years ago. Changes started coming rapidly in the last 4 months. She can no longer walk, talk, or feed herself. My father (85) is trying to care for her at home. We have difficulty keeping home care workers and she is alone with my father much of the time. What is the prognosis? What can we expect in the next month? Year? What help is there? Can someone help or direct me to more information? Thank you.




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