Eric Kentor

Condolences for the loss of your husband/dad.

All of us on this forum, in one way or another, live daily with the stark reality of this particular diagnosis and all of its harsh realities.  We try to squeeze joy out of our remaining days, and hope you have fond thoughts of your time with him.

May his memory be a blessing.

We purchased an electric adjustable king bed with a split mattress that allows me to sleep fairly upright while my wife can continue to sleep on a flat half of the bed.  I am still able to use the remote to adjust the angle of the bed, and the system seems to work well for us.  Good luck!

Thank you so much, Dagmar, for sharing the full text of Lou Gehrig’s speech and providing context for everyone. I have such admiration for Lou Gehrig, for his grace & dignity, much more so than all of his remarkable on the field accomplishments.

I consider him to be the perfect name to be associated with our brutal disease, and believe he c…[Read more]

This is such a great conversation.  We recently completed an extensive remodel to our house, which focused on widening doorways, making bathrooms accessible (including roll in showers, grab bars, pocket doors to preserve space, roll under sinks, etc.).  For one of the smaller bathrooms, we installed a wall hung toilet and a wall hung sink with t…[Read more]

Several months ago, I was referred to a compounding mail order pharmacy in New Jersey.  The initial dose I was prescribed came to $1,050/month (though it may be a lower dose than your current one).  I did not follow up after the first prescription because I enrolled in the HEALEY trial instead.  The pharmacy is Hopewell, and I included below wh…[Read more]

It appears to me that you are getting it at a good price.  I had planned to start it several months ago, but then became eligible to enroll in the HEALEY clinical trial (Regimen D), so I set it aside.  I had purchased a one month supply for about $1,000.

For anyone out there taking sodium phenylbutyrate + TUDCA, how have you responded to the c…[Read more]

I’ve had recurring/periodic issues with constipation since my diagnosis in March 2020, and it has become a priority for me to try to stay ahead of the issue.  It’s periodically a pretty severe issue for me, and I’ve eliminated bananas from my diet and reduced other foods that tend to constipate.  To stay on top of things, I take fiber s…[Read more]

I am a participant in the HEALEY Platform Trial: Regimen D (Pridopidine), which I enrolled in early July.  Of course, it’s hard to know if I am on placebo or active drug, but I’ve been experiencing some symptoms that may well be side effects of active drug.  Side effects have included some nausea, lightheadedness, and extreme dry mouth.  There is…[Read more]

I am definitely up for the vaccine ASAP.  I have been unable to get any reliable information as to whether ALS patients will have high priority for receiving the vaccine.  Is there any good information out there?  Thanks all.