I am just curious to see what everyone's experience is in getting support from their ALSA chapter. I know for us, while we had a kind and compassionate case worker, there was very limited benefit from the chapter to us on a personal level. I was wondering if everyone might want to tell of their...
Hi guys,
I am selling our Chrysler Town and Country LX Wheelchair Van. It is a 2007, 19,375 miles, I bought the van in August, the conversion was new at that time, has a 3yr 36K mile warranty on Van and Conversion. Side entry, VMI in floor ramp conversion, kneeling system, magnetic and push...
It is with a broken heart that I tell you that I lost my soul mate at 624 2/14/09. Jim knew I was afraid of him dying in the dark, (we had joked morbidly about it in better times) he waited for the sun to rise, I stroked his head, describing the sunrise and the birds, and told him it was okay to...
Well, Team Iplex has finally done it. We have written to Insmed, Genentech and Tercica, the media outlets, etc. What we have gotten is a public policy statement by Insmed apologizing that they can only give Iplex to Italian ALS patients. Genentech and Tercica have maintained silence.
Now we are...
Hi, I Have a acorn stair lift, stair glider, that I would like to give to an PALS, we just paid 4K to have this installed just a few months back, but we are changing over to a incline wheelchair stair lift. This lift is nearly new, 17' of track, but I believe you could have the track cut down if...
At this risk of being booted, I am posting this here for you guys to see. You may have noted, I have been spotty in my attendance on this forum. As Jim's progression has gone on, I have become more interested in the role of advocacy, and preserving his function by whatever means possible. As...
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Here I go again, beating the seemingly dead horse of IPLEX. While there is no research available to fully substantiate the claim that IPLEX either slows progression, or reverses symptoms of ALS, I have been able to contact patients that were able to take the drug, and from what I have read...
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Hi all, I can't believe it has only been 3 months since I first visited this forum. My how things have changed... I had told you that we were trying to get a second opinion. We saw Dr. Graves/UCLA today. He confirmed what my husband and I already knew, that Jim certainly has ALS. His progression...
Hi all, my husband was diagnosed w/ALS 2/20/08, thanks (weird thing to say about ALS,huh?) in part to the encouragement you guys gave me to rush for another neuro. He has been on the rilutek since 2/21/08. On 2/19 he had a full day of work, tired, but normal day, since being on the rilutek he is...
Well, my husband and I spent the day at the ALS neurology clinic at Cedars Sinai hospital yesterday. After a very long day of testing, consults, etc, the doctor told my husband that she couldn't find any other possibility, so it is ALS. He has nerve damage in his arms and torso, also his hip...