• Janice Andreasen became a registered member 2 years, 3 months ago

    • Hello Janice, 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!

      • Hello Amanda my name is frankie it would be my pleasure to welcome you as a friend I am pretty new to this I was diagnosed with ALS 15 months ago however I was mis diagnosed for over a year or abouts my upper body is almost gone I really don’t have any one to help me deal with this disease so since I am not able to take care of myself I’ve been put into a hospice program and I know that I am not getting the treatment and or care that I need I understand that there’s no cure for ALS and treatment is limited I’ve been wanting to get into a clinical trial I have the information but for some reason I am afraid to call about more information I start to call but for some reason I just start crying and hang up ok I am sorry for taking up your time I am all mixed up

        • Frankie,
          I’m sorry I didn’t see this message sooner. I just responded to your post, and now that I’ve read this message some of my questions have been answered. Please don’t feel like you are taking up my time. I have compassion for what you are going through. To say it is difficult is an understatement. Does the Hospice program have counselors or anyone you can speak with? What clinical trials are you interested in?

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