Recent content by kelleyri

Thank you for your reply to my inquiry about shifting the car. If you would be kind enough to send me the link that you mentioned, I would very much appreciate it. Again, thank you.

This question may seem off-the-wall, but I figured it might be worth inquiring here. As I lose strength in my arms/hands, it is becoming more difficult for me to shift my car from "Park" to "Drive". I drive an automatic vehicle (not manual shift). In order to shift the car, I must press on a...

I apologize for not responding sooner. I have not visited this board in a while. I'm sorry to learn of the recent news you received. I know how emotionally difficult it is. I am still very emotional about my diagnosis, but feel very fortunate to have an unbelievable support system from family...

I write to ask if anyone can offer some advice on a "Lifeline" program. I understand there are various companies that offer this service. Are some programs better than others? I live alone and, while still fairly independent, would feel safer to have an alert system in case of a fall or...

Do I understand you correctly that I should feel some lethargy/tiredness after my first visit/week of visits if I'm receiving the "real thing" (vs. the placebo). Or does this take time? Any clues I might look for to know/suspect whether I'm getting the drug or the placebo? Thanks.

Forgive me if this is a repetitive post ... I go tomorrow for my first visit ... I'll be a new participant in this trial. Can anyone offer me any insights as to what to expect - either during the treatment or after? I'm curious -- and slightly nervous (though hoping for some positives over...

Forgive me if this is a silly question ... and, of course, i could/would ask my primary care physician before doing anything. But, can anyone confirm for me that there's no problem for me getting a flu shot? I just want to confirm no bad reaction given that I take Rilutek and am scheduled to...

Thanks for posting .... incredible gesture ... here's another link from a New Orleans newspaper ... (I hope the link works) NOLA.com : New Orleans Saints cult hero Steve Gleason battling ALS

Good morning ... I have what might be a very simple and silly question. Of late, I'll wake up during the night or even in the morning and find my right hand "asleep" ... I just shake it/move it and it "wakes up" ... much like what everyone experiences with their legs, etc. My symptoms thus far...

Thanks for starting this thread -- and for the replies ... I was recently diagnosed with ALS and the major impact so far is on my left arm/hand ... and I'm lefthanded. I've used Right Guard spray for years, but it's getting more difficult to press the button (and hold the can) with my left...

Many thanks for all your thoughts and well wishes ... tomorrow I go for a screening to enter the NP001 trial. I hope all goes well and I get in the trial sometime soon. We'll see. But, again, your support and words of wisdom are incredible. Much appreciated.

I am scheduled to go this week to be screened for the NP001 trial. I had hoped to get involved with the Empower (dexpramipexole) study, but was told it had completed enrollment (i.e. I was too late). Does anyone know about the NP001 trial? And no chance of the Empower trial? Feedback would...

Update: I did get the diagnosis of ALS ... so the journey begins. I'm trying to stay strong and positive (emotionally) and am fortunate to have incredible support from family and friends. Any insight or advice on what to expect and how to proceed would be welcome. Question: I'm now taking...

sya15 -- yes, I'll be at MGH today (Tues) ... I'll be there at 10:30 ... maybe our visits will overlap? Thanks for the best wishes -- and the same to you.

Kitchener -- thanks for your insight and suggestion ... Question: I'm visiting an ALS clinic tomorrow and suspect I'll undergo some/numerous tests. I doubt I'll get an instant diagnosis (do you agree?). When would I suggest IVIG treatment - tomorrow or when I get a diagnosis? And how might a...