• Ginger Monette became a registered member 4 months, 1 week ago

    • Hello Ginger,

      Welcome to the forum! I am one of the forum moderators and a person 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. You can also search for past topics or discussions by typing a keyword in the forum’s search bar. 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

    • Hello Ginger, 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!

      • Thank you Amanda, I’m not sure what to do but I will figure it out. I was diagnose with Progressive Bulbar Palsy / ALS in October 2020, I had been having problems with my speech for sometime but was having problems getting a diagnose in Canada, so my family doctor suggested we go to the Dent Institute in Buffalo NY and they were able to give my the diagnosis. I still play golf, walk my dogs and bike with my husband. I just got a feeding tube inserted so I’m recouping from the surgery. My doctor in Buffalo wanted me to get the feeding tube now while I was still healthy.

        There is no one in my family that has or had ALS. So not sure where it came from. I live for each day and stay positive with anything I do.

        Thanks for checking in with me.

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