Support Groups - Discussion - ALS Advocacy Support Community

Support Groups

By pam_ogella
Posted November 25, 2006 at 2:05 pm · 5 replies
In Familial ALS

My mom has been experiencing muscle loss since 2002. Currently she has the use of only her index and thumb on her right hand and no use of her left hand. She has also experienced upper torso muscle loss and it is now going into her legs. She has not been able to talk to anyone about her disease and possibly why to expect next. She has no computer and I am trying to get someone to call her or get her hooked up to a support group by telephone. If anyone can help with this I would really appreciate it.

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By fec139
Posted November 26, 2006 at 8:32 am

where is she located? go to als-org
alsa has als support groups all over.....
fern dx 1/04

By Janine
Posted November 26, 2006 at 9:34 am

Pam, it sounds like your Mom needs more than just support groups. If you go to ALSA.org you can get her registered on the national site. There you can find out where your local chapter is. From there you can make an appt to take her to a clinic visit where she can be under the care of one of the ALSA's neurologists. Also she will see a group of PT's and OT's that can hook her up with any assistive technology that may make day to day chores easier. Also ther are caregiver support groups.

Seriously, call your local chapter. The people who work there are angels and they really can help.
Good luck, Janine
ps there are a few really good wesite that have very useful enabling devices. From clothing items for people who need assistance dressing to switches to turn things on/off. If you need any sitenames drop me a line.

By pam_ogella
Posted December 6, 2006 at 11:38 pm

As I mentioned before, my mom really wants to talk to someone who is experiencing the losses that come with als. My parents reside in Northwest Iowa and she has seen many neurologists, gone through the Mayo Clinic and also gone to physical and occupational therapists. We have been in contact with the closest als group in Johnston, Iowa, but again what my mom really wants is to talk to someone on the phone who suffers from the disease. Mom is house bound and my parents are not going to purchase a computer. Again, if there is anyone who would be willing to call her on the phone I would really appreciate an e-mail from you.

By Ann8
Posted December 10, 2006 at 10:18 pm

Hi Pam, I, too, am about at the same stage of ALS as your mom, but would be happy to talk with her at any time. Contact me if she is interested in talking with me. If there is an ALSA clinic anywhere near you, I highly recommend getting her an appointment there. I attend a clinic at Baylor Medical School in Houston, TX and the information and care I have received there is priceless. You have access to every specialty that you need to help you deal with this most frustrating disease. God Bless, Ann

By Ann8
Posted December 13, 2006 at 11:21 am

Pam, My email to you was returned because your server rejected it. Email me at annieandice@msn.com and I will give you additional info on how to contact me. Ann

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