Snow
36 Ansichten
top of page
SPG 7 #SPG7 #HSP7
Öffentlich·22 Mitglieder
Alle Themen
Testing (2)
Genetics (1)
Chats (2)
Guides (1)
Photos (2)
Welcome (4)
Am I missing something or is there very little going on?
I continue to get emails from posts in type79A (I mistakenly joined, not sure why I got Type79A emails in first place). Sign in is not great, I mistakenly used a tool that deleted all my browsing history and am signing back into everything and this site was not good. A "Login" should be right at top of main page, you should NOT have to go hunting for it. Anyway, Want to ensure I am looking at it correctly no comment or posting about 20 days? Last posting I read on another forum for this was Results of poeple using CBD oil and gummies etc. in states where that is allowed, wondering if any type7 folks have tried it.
48 Ansichten
Larry Landrie
22 janv.
Feedback is welcome. I agree this site is klunky and I do my best to improve but I'm not great at this. I will try to make your changes. In the meantime, I would suggest you join the Winsights.life group. That's the direction we'll soon have some folks migrating to. The Facebook group has 2,800 members with great engagement. Only 130 have joined this site. To achieve maximum engagement, we need numbers. We used to have even greater Facebook engagement before Facebook took away our group chats. Thats when a small group decided to try the website. Sorry to make so many excuses but i wanted you to have the back story.
Modifié
99 Ansichten
Bill Brydon
02 janv.
•
Glad you found us. Hi, I'm Bill I was diagnosed in 2020 I have spg7. I'm using a walker to get around. The chats are great there all people with the same problem and they have found some solutions.
Mitglieder
Newbie
Newbie
Newbie
- davisescay
Newbie
bottom of page
I always had small signs, ran weird, held myself far from cabinet doors, a bit slower manually and phisicly..... But nothing big enough to bother. The troubles began 12 years ago when i was 37. From Montréal, Canada.