Elizabeth Pacheco replied to the topic What questions do you have for your medical team? in the forum Diagnosis Information and General Questions 1 month, 2 weeks ago
<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]
Elizabeth Pacheco replied to the topic How Do you Decide What Medical Interventions are Acceptable? in the forum Living With ALS 6 months ago
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]
Elizabeth Pacheco replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 10 months, 1 week ago
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]
Elizabeth Pacheco replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 10 months, 2 weeks ago
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 .
Elizabeth Pacheco replied to the topic In Memory of Rick Jobus in the forum In Loving Memory 11 months ago
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.
Elizabeth Pacheco replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 1 year, 11 months ago
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?
Elizabeth Pacheco replied to the topic The Promising Pathway Act in the forum Research Topics 2 years, 1 month ago
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]
Elizabeth Pacheco replied to the topic Do ALS clinical trials exclude too many pALS? in the forum Research Topics 2 years, 2 months ago
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]
Elizabeth Pacheco became a registered member 3 years, 4 months ago
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns or…[Read more]
Hello Elizabeth, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let u…[Read more]