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  • Hey sweet @alyssa, so I have been part of an ad hoc advocate group that has been fighting against this in California. Nobody we know wants it, including providers and clients. We are very frustrated and it feels very violating to us as recipients. It puts us in question as to where we are , and whether or not our caregivers are with us the entire…[Read more]

  • Hey beautiful girl, I’m very susceptible to this slump. Usually starts happening about the middle of the third month. It seems to be getting better though. It’s not coming on so early lately. I’m in on my 9th injection. I also had to take a step back during the pandemic but, it was because I was considering Evrysdi. I wanted to wait to see my…[Read more]

  • Hey Alyssa, I totally get what you are going through. So spinraza wears off usually by the third month. Stick with it, they say for the adults like ourselves it gets better by the 3rd year. Although I don’t know how long you’ve been with it. I’m in my second year , it will be three years for me in June 2021. Regarding typing, I use voice for…[Read more]

  • Hi DeAnn, I use a regular Bluetooth on my ear. I did a lot of research and so far, I found that the Plantronics Voyager 5200 is one that allows me to do most everything by voice. All except lock or unlock my phone, turn my phone off and on. It also doesn’t work with apps. It works solely with my contacts on my phone, text messages or WhatsApp and…[Read more]

  • Nikki and Profile picture of Kevin SchaeferKevin Schaefer are now friends 4 months ago

  • Hi Alyssa, it’s very very bad. I am staying indoors except for the occasional grocery errand and doctor appointment. I had black mucous from my nose and incessant coughing for the better part of the week. I am 10 miles from the Bobcat fire. Although it is beginning to clear up, a humidifier would have helped. There is a policy that the California…[Read more]

  • Hi Alyssa, I don’t know about you but my doctor attributes my constipation issues to 1) the obvious of lack of muscle movement in the intestines which I’m sure you’re aware of and 2) lack of potassium. Turns out my body get rid of more potassium then it should. For me I have found that 2 to 3 glasses a week of Pedialyte moves things along. If…[Read more]

  • Hi DeAnn & Kevin! I’m so glad to be here. DeAnn I write singer/songwriter and adult contemporary genres. You can check out my songs on Soundcloud:

     

    I definitely will be writing more here!

     

    Be Safe 🙂

  • Nikki's profile was updated 4 months, 1 week ago

  • Hi Alyssa, I’ve been dying to get to this column. This a beautiful piece, and brave. I’ll have you know, I’ve been there. In the past 4 years I’ve watched my body, my small yet vital independence just fade, as if it never had relevance. It was almost impossible for me to wrap my head around the reality of ‘continuing’. But one night I heard a…[Read more]

  • I would not let anything stop me from a live show, I am an artist so music is everything to me. I’ve been through all of it; put off in the corner that’s supposed to be accessible but screams ‘crane your neck to see for 2 hours but you can’t because your disability doesn’t physically let you, or ‘can you hear the music from the foot of the stairs?…[Read more]

  • Hi fellow SMA fam,

    My name is Nikki, I’m 51 with type 2. Gosh, I’m just so excited to see our community lively and connected! We’ve come a long way and we are still shining! Anyway, a little about me, I’m a writer and songwriter/model/advocate. I’m an N.C.A.C. member for our community representing Los Angeles. Can’t wait to connect with ya’ll,…[Read more]

  • Embracing SMA is a process. I’m 51 and was diagnosed at age 3 and I still have struggles with what I think I can do, should be able to do and in actuality can’t do. For my mature age, accumulating accomplishments is important in our society. But I’ve learned to accept that it takes me much longer to meet deadlines and be ‘camera ready’ than most…[Read more]

  • Nikki changed their profile picture 6 months, 3 weeks ago

  • Nikki changed their profile picture 6 months, 3 weeks ago

  • Nikki posted a new activity comment 6 months, 3 weeks ago

    Hi Alyssa! I think I’m following you on IG! Thank you for your kind words! Yes, multi-faceted is fun and it keeps me positive and motivated. I will post on the welcome page.
    Thanks! 🙂

  • Nikki became a registered member 6 months, 3 weeks ago

    • Hi Nikki. Welcome to the forums! I’m Alyssa, one of the moderators here. By the looks of your bio, you sound like a busy woman! But, I have to admit I admire those who are multi-passionate. Sounds like you’re doing some amazing work. If you have any questions please feel free to reach out to me, Kevin, or DeAnn. You can also introduce yourself in…[Read more]

      • Hi Alyssa! I think I’m following you on IG! Thank you for your kind words! Yes, multi-faceted is fun and it keeps me positive and motivated. I will post on the welcome page.
        Thanks! 🙂

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