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  • Patricia Hall became a registered member 2 years, 4 months ago

    • Hey Patricia, welcome! I’m Kevin Schaefer, one of the forum moderators. I also have type II. Feel free to introduce yourself in the welcome forum, and let me know if you have any questions. Thanks for joining us!

    • Hey Patricia! Good to hear from you! My name’s Ryan, and I have SMA type ll. See you around!

    • Hello Patricia and welcome!

    • Hey Patricia, hope you are doing well. I just wanted to check in and see how your experiences have been on the forums so far. Have you found the content and discussions here helpful? Is there anything in particular you’d like to see or discuss related to SMA? We welcome all feedback, and thanks again for joining us here.

      -Kevin

      • Hi Kevin,

        Thank you so much for reaching out to me. Sorry for my delayed response, I celebrated my 56 birthday this past week, and am just now getting back into my usual routine with checking messages. I have enjoyed the forums and found much of the information to be very helpful. There are many topics that I continue to search and hoping to find discussions on the SMA website. However, since this is a new experience for me, I am not sure as to whether this platform could be used to solicit feedback on subjects such as:
        –Bone health/osteoporosis & SMA (anyone experiencing this issue?)
        –Shopping for health coverage (any health insurance companies more receptive to approving Spinraza?)
        –Shower chairs–(how to research companies that might customize?)

        These are just a few topics and I could probably fill up a whole page. One would think that by age 56 I would know all this but actually I have been blessed to have had such good health these past years. Unfortunately, after my mother’s passing, my health spiraled downward as I grieved her loss–during the same year, I experienced several very difficult events, including a fall and hip fracture from which I am still trying to recover. All this has caused a major setback in my ability to function, and after 30 years on my job I decided it was time to take care of my health first–so I am now on disability slowly bouncing back, while trying to learn all that I can from others with SMA. I welcome your suggestions on how I might use these discussions/forum to tap into the wealth of knowledge from SMA News Today members.

        Thanks again and great job with providing this service for us!
        Patricia

        .

        • Happy belated birthday!

          And absolutely. All of these topics would be great for discussion, and thanks for the suggestions. The great thing about the forums is that all of us here are different ages and we have different backgrounds. Feel free to post these topics.

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