Recent content by robc

Deb, I have had botox in my back to relieve contracted paraspinal muscles. Started at 100 units then 200 units the second time, which gave me a lot of relief. I am now at 400 units every3 months.. I now look forward to the shots. If your toes aren't relaxing then you may need to go up in dose...

Great job! I hope that people are donating to groups like ALSTDI ALS Guardian Angels and especially the Mndassociation in the UK (shame on Macmillan Cancer Services for hijacking the ice bucket challenge in the UK) This is really the first time ALS has entered the global consciousness since...

I want to see all research that is proposed, funded, who is funding it & how much $$, unfunded, underway, etc in one place. You can get a lot of information by digging through about a dozen different websites, but has anyone made an effort to put it all together in one place and get...

I can only give advice on one point. I was dissatisfied with my insurance (Kaiser) and was in a position where I would have to wait a year to switch to the other insurance offered by my employer. I checked with HR at my work and explained the problems I was having. They were able to make an...

Hello.. Doing well.. Still alive! My progression continues to be pretty slow. Just went skiing with the ALS Association here in Oregon.. As awesome.. They got 9 of us out on "sit skis".. There were a couple other people in their 30s & 40s who had skied before, but there were some who had never...

Susan, Did your friend with ALS find a doctor that he or she likes? I can't recommend Dr. Kimberly Goslin at providence oregon clinic enough.. She also runs a full ALS Clinic.. She is brilliant, compassionate and wicked smart. I have been seeing her since I was diagnosed 4 years ago at age...

Everyone has different ways of communicating, coping, etc. I would try communicating your concerns, needs and where you are at mentally to the support group leader.. Maybe you're not ready for that type of support group just yet. I am one that likes to have all of the information and stay a...

I was on a kick to find an ugly old van and fix it up conversion style. I purchased a 76 ford e250 club wagon van with the 7.5 liter 460 v8. I have replaced the alternator, voltage regulator, ignition control module, some relays and some circuit breakers. The guy that did the work managed to...

I read an article posted today.. so I'm wondering if this is truly new research or if this website just happened to post some old news. In part: Our studies demonstrate that glial cells carrying a SOD1 human mutation have a direct effect on motor neuron survival and provide a powerful tool for...

I did post there as well.. I can see where people might need help with a plane ticket to visit family members (I've had friends offer frequent flier miles), help with accessibility remodels, etc.. could really be anything. Thanks! -Rob

Hi Al, als.needlist.org is more of an open forum for PALS, Caregivers and Organizations to post needs and individuals AND organizations to respond.. So in the case of ALS Guardian Angels, if someone posted a need they could fulfill, they could respond.. If ALGA needed $$ to ship equipment to...

Hi Tiffer, You go girl.. Definitely ask for help! There are so many people out there that want to help.. Giveforward.org sounds like a good place to start.. Just this week I set up a website for PALS to post needs so that others can help. Just getting it off the ground, but perhaps someone...

I've heard from so many people that want to help others with ALS directly. While I'm involved in fundraising for the ALS Association, I thought there was also a need to connect people with ALS with people who want to help with specific needs: equipment, software, adaptive devices, ramps, a van...

Hello, Has anyone with an Erika Eye Gaze system tried accessing a macintosh remotely (over the internet) using Logmein.com ? I don't see why it wouldn't work. My friend Patrick is in a nursing home stuck with an Erika & is unable to continue video editing work on his film...

Thanks everyone. I'm pretty tech savvy (managed software product development for a number of years) & at this point I'm less concerned with the technology and more concerned with coming up with as robust a speech bank as possible. If others would be willing to share a list of the phrases they...