Recent content by janicebuf

  1. J

    Need you opinion, I'm scared

    Thank you both so much. I can't express my appreciation that you took the time to respond and making me feel a bit better. 🥰
  2. J

    Need you opinion, I'm scared

    Hi All, I've read the 'Could this be ALS' info and don't see my answer. I've lost many, many, family members to ALS. I noticed my right eye was drooping a few weeks after Botox so just assumed it was because of that. My family noticed it in photos and I told them the same thing. Then my...
  3. J

    Need advice SOD1

    One more question; is viral vector a shot? Is that what it means? Sorry not sure.
  4. J

    Need advice SOD1

    Thanks Nikki. Sadly, my family gene is fast progressing. I appreciate your input and you are correct in the need for testing should be considered. Really thank you again!
  5. J

    Need advice SOD1

    Thank you so much for responding Nikki and I am sorry you are in similar shoes too. From what I understood about Toferson, and of course I could be way off, was that it had a 3-6 month life extension, can you help me understand if this is true or not? Regarding triggers, interestingly, one of...
  6. J

    Need advice SOD1

    Hi Everyone, I have not been on this forum for many years when my brother was diagnosed. [He passed at age 50]. I have been living with the fear of ALS since childhood, and am now about to turn 60. I've lost more family members than I can count, including a cousin at age 21, so you can...
  7. J

    Humor And Hope

    To Ann Marie Hi again Ann Marie...I don't really know who is a PALS and who is a CALS...with that being said, do you yourself have als? i'm just curious. I agree with your post, very confusing. How old was your mom when she died? Crazy, I know Ann Marie, you would think in this day and age...
  8. J

    Humor And Hope

    From Janice Hi Jean, yes, it is autosomal dominant...i was going to post that but you explained it so much easier than me... AnnMarie, Hi. To answer your questions: I believe the reason they found the SOD1 gene was through my family history. With respect to heredity..As Jean said, if it is...
  9. J

    Humor And Hope

    Response to Pappy Hi, no it is not Kennedys Disease and both males and females are carriers. My grandmother passed it to my father, etc..aunts have gotten it from their mothers. Your doctor is giving you mis-information. This is familial ALS and it doesn't matter if it's male or female who...
  10. J

    Humor And Hope

    Humor And Hope Continued Hey Guys, I responded to some questions in my last post but need to remind you all to send me personally your email address...I don't think they show up on this forum! Thanks:)
  11. J

    Humor And Hope

    Response From Janice Thanks for your kind words everyone! To answer some questions, it has been 25 (uncle makes it 26) family members that have had this disease. 24 have passed away as my brother is on a vent and personally, I am so glad he chose to live! The time with which they all passed...
  12. J

    Humor And Hope

    Hi Everyone, My name is Janice and this may come as a shock to some of you but here goes: I am a 45 year old married mom of two great kids. I have had a lot of tragedy in my family; my sister died at age 41 of breast cancer, I have lost 25 family members to ALS, including my dad at 57. My...
  13. J

    Attention all recently diagnosed PALS

    i think almost everyone in my family had some sort of traumatic injury before their symptoms! my dad was assaulted and suffered a head injury, 6 months later als, my grandmother fell over a gate, on and on. i know my cousin had high amounts of lead in his system. my brother played alot of...
  14. J

    Husband Really Needs Support Today.

    thanks dana, let's hope this helps 'Hope'! janice
  15. J

    Husband Really Needs Support Today.

    hi sandy, so sorry about your husband and his sad news...let me tell you that i have lost at least 25 family members to als and now my brother age 46 is battling it. sandy, of course your husband is sad and scared and everything else. this is to be expected, it is no different than feeling...
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