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My newly diagnosed brother lives in Charleston, WV. The closest ALS support group is in Pittsburgh, PA. That's just not acceptable. I am searching for other WV PALS and CALS in the hopes a support group can be formed in Charleston or a surrounding area. If need be, please email me at samspo0529@aol.com. I have tried searches on patientslikeme.com and still came up empty. Please help!!
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I have a similar problem in that the nearest ALS support group is at least 100 miles away. What they are working on in our area is video conferencing to cover the outlying rural areas. You might check to see if that option is available. Also check with other groups like MDA, although they might not be ALS centered, the problems are similar.
Thank you for your reply, Dan. Those are two options I had not thought of but will certainly explore. So far I have only found 6 other ALS patients in all of WV.
HI,
I WAS ALSO GOING TO HAVE YOU TAKE A LOOK AT MDA. THEY CALL THEMSELVES MDA/ALS AND THEY CAN BE VERY HELPFUL. GOOD LUCK.
FRANK IFLYFISH2@HUGHES.NET
Hi. My name is Crystal and I live in Parkersburg. My mom, who also lives in Parkersburg, was recently diagnosed with ALS. She is in the early latter stages of the disease. She has now been placed into a nursing facility to help with the 24/7 care that she needs. She can't walk, and can only hold her wait her a short amount of time.
Right now we are dealing with the red tape of Medicaid and Medicare. She is only 62, and does not qualify for medicare. So they are finalizing the paperwork for medicaid. But she is very upset with the limitations that they place on her for having ALS. She has been wanting to get a power wheelchair so she can get around. But supposedly they won't allow her one if she is in a nursing home.
I would love to have contact with people in the south eastern Ohio and West Virginia area. We would love to be a part of a community fighting for the same goals, and supporting each other as well.
You can reach me at crissilarue@yahoo.com.
And the MDA/ ALS group has great info, by the way.
Hi Criss, Please email me. I can help. Your mom does qualify for Medicare. She qualified an soon as she was dxed. Get in contact with a ALS Clinic or MDA/ALS Clinic. Please email me- you are not alone!! msgar1ginny@yahoo.com
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