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My husband and I recently renovated our bathroom and have the toilet set at 19 inches, which I think may be too low for him. We purchased the Ocean VIP Tilt shower chair and commode, and I’m wondering, do any of you have experience with it? Is it easy to use the toilet if you roll the chair over...

Hi all, My husband and I are remodeling our home to make it more accessible for him. May I ask what you all have done for your bathrooms to make them accessible for PALS (in terms of bathroom floor plan)? If we are able to post pictures on the forum (I’m not sure if that’s possible), can you...

Hello all, My husband and I just closed escrow on a single story home. We are currently in the process of remodeling (before we move in), and we have a contractor who will be making our shower ADA accessible. My husband is not using a wheelchair at this time, but will likely need a power...

Hi All, A friend of mine, who is caring for her sister that has ALS, was wondering if you (if you have ALS) or your PALS (if you are a caregiver) ever received cortisone shots in your spine pre-ALS diagnosis? My husband, who has ALS, did get multiple shots, and we are fairly certain that there...

Hi all, Has anyone participated in Cedars-Sinai's CNS10-NPC stem cell study? My husband is strongly considering participating in this study and his Neurologist has been pushing him to do it, but we are obviously concerned about possible outcomes. It sounds like most participants have made it...

Hi All, My fiancé is thinking about starting Riluzole, however, we are wondering, if he starts taking it, could it potentially disqualify him from being able to participate in any clinical trials? Also, does anyone know if one would still be able to receive the Edaravone treatment if they...

Hi All, I know that this is not the first thread on Nur Own, so I apologize if this is repetitive, but I'm wondering, what are the best ways to attempt to get into a trial for Nur Own? We live in the US. Is it currently available in Israel, or is it also in trial in Israel? Thank you!

Hi All, I know that the FDA will be deciding what to do about Endaravone in June 2017 here in the US, but I'm wondering, do any of you know how I could research where we could potentially go in Japan to have access to Endaravone sooner than that? I imagine that even if the FDA approves, the...

My fiancé was diagnosed with ALS yesterday. It has been absolutely devastating, but we are committed to making lifestyle changes to slow the progression as much as possible. We will be seeking a second opinion as well, but are not trying to have false hope. When my fiancé was diagnosed, the...

Hello, In December of 2016, I got engaged to the love of my life. Just prior to that (around August or September of 2016), he reported that he had a "funny feeling" in his left ring finger, then slowly started having difficulty moving it. In December, he had a nerve conduction study done, and...