Elizabeth Pacheco

<p style=”text-align: right;”>Have been on Relyvio  for  a few months how do I know it’s working for me.? I’d like to know why we aren’t notified about Established E AP programs? It seems we have to do our own research and extensive inquiries to find  and if we are lucky participate in an  E AP program. The Major  Medical centers who are partic…[Read more]

When anyone attempts to comfort me by stating that slow progression is better , . Though well meaning, offers me little comfort. Any progression is dangerous and unpredictable with this disease. I fear waking up and not be able to stand on my feet. Knowing full well that it’s just a question of when.. I like many others don’t want to be kept ali…[Read more]

Staying present and in contact with family and friends is important to me. I don’t invite people over as frequently as I did in the past it’s much to tiring. When I extent an invitation I explain that I will make one dish  ( still can do some cooking ) and food will be buffet style. People do understand and usually bring a dish. Always info…[Read more]

Absolutely. I will try any drug that helps slow progression. I believe the data is strong. Have been following the research with respect to Albrioza and It seems effective. I am presently attempting to get into any EAP program that is offering it. We are in desperate need  of medications that will at minimum relieve our symptoms and slow progression .

So sad to hear of Rick jobus’s. Passing. Always looked forward to his columns. Another of our warriors has fallen. Rest In Peace Rick. My condolences to the family.

we all look to supplements to relieve our symptoms and hope that they can somehow slow down progression. I see a Dr. that also practices alternative medicine. Under her suggestion I take B complex, alpha lipoic acid, vitamin C  a d Mag very important and on my own I take Tudca. It’s one of the ingredients in Amx 0035 so why not? 

Waiting for approval of the drugs that we need such as Amylyx has proved to be extremely slow and frustrating. It seems that the FDA bureaucracy is a slow and painful grind. Painful for Als patient who simply must wait while their bodies weaken and degenerate. Yes we definitely need to nudge our congressmen and let them know that it’s time to w…[Read more]

I was very disappointed when I was turned down as a participant in clinical trials. And like all of you I felt frustrated but moreover “Struck” because I was old in the disease. I wasn’t basically Sick and disabled enough to participate. I’ve been told participation can accelerate progression and count your lucky stars that your progres…[Read more]