• Stephanie became a registered member 2 years, 1 month ago

    • Hello Stephanie,

      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 even suggestions, just let me or Amanda (who shares co-moderator duties with me) know, and we will do our best to help you.

      Again, thank you for joining our forum – – We look forward to your comments and I look forward to chatting with you! Dagmar

      • Hi Dagmar. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m not sure if Amanda will see this so I’ll also post it for her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his rapid decline. It’s been a difficult month but we’re grateful for the medical and non-medical staff at Mayo who thoroughly evaluated our situation and provided the diagnosis. He begins treatment at the Oregon Health Sciences University Medical Center in Portland this week. We’ve started home-based PT and OT the past week. I’m most interested to learn about the symptoms and progression for what I understand to be the 5% with respiratory onset. I saw a thread on this but was unable to contribute. I’ll try again when I have more time. I can’t seem to find the thread again. Many thanks for reaching out.

    • Hello Stephanie, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost my father, grandfather, both aunts, and a several cousins to ALS. My family has been volunteering for medical research for over a decade, and I believe we are getting closer to finding away to stop the progression of ALS.
      Other members are pALS, caregivers and medical professionals. Please review the ongoing discussions and join in at anytime. You are also welcomed to post discussion topics, ask questions and respond to other members. The more we share, the better we all are in this community.
      Please feel free to contact myself or Dagmar if you need any kind of assistance. Again, welcome to the forum!
      Amanda

      • Hi Amanda. Thanks for your message. The ALS community is such a warm and welcoming group of people. I’m reposting what I sent Dagmar as I’m not sure if you’ill see my reply to her. My father was diagnosed with late-stage ALS, respiratory/thoracic onset at the Mayo Clinic in July. It’s been a three-year journey to get a diagnosis that explains his rapid decline. It’s been a difficult month but we’re grateful for the medical and non-medical staff at Mayo who thoroughly evaluated our situation and provided the diagnosis. He begins treatment at the Oregon Health Sciences University Medical Center in Portland this week. We’ve started home-based PT and OT the past week. I’m most interested to learn about the symptoms and progression for what I understand to be the 5% with respiratory onset. I saw a thread on this but was unable to contribute. I’ll try again when I have more time. I can’t seem to find the thread again. Many thanks for reaching out.

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