@alyssa-silva
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Crystal started the topic A quick question? in the forum Adults With SMA 3 days, 4 hours ago
Hi guys, this is Crystal. I haven’t been here in a minute, because I can’t type on my own anymore. Right now I am in respite so someone is helping me. I miss talking to you guys because it has been a help to me. Although, I can’t type anymore I can use my Alexa to call people. I was wondering if you could give me your number so that I can…[Read more]
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Crystal posted an update 5 days, 3 hours ago
@waziha I don’t know if you remember me. I am Crystal. You responded to one of my posts a long time ago and it really helped me so I was hoping we could talk more, but I am unable to type at all for myself, now, so I have someone typing for me at respite, again. But I am able to call people on my Alexa device. Could I please have your…[Read more]
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Crystal posted an update 5 days, 3 hours ago
@ryan-berhar I don’t know if you remember me. I am Crystal. You responded to one of my posts a long time ago and it really helped me so I was hoping we could talk more, but I am unable to type at all for myself, now, so I have someone typing for me at respite, again. But I am able to call people on my Alexa device. Could I please have your…[Read more]
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Crystal posted an update 5 days, 3 hours ago
@kevin-schaefer Hi! I am unable to type at all for myself, now, so I have someone typing for me at respite, again. But I am able to call people on my Alexa device. Could I please have your number so that I can talk to people who have my disease. Thank You!
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Crystal posted an update 5 days, 3 hours ago
@brianna-albers Hi! I am unable to type at all for myself, now, so I have someone typing for me at respite, again. But I am able to call people on my Alexa device. Could I please have your number so that I can talk to people who have my disease. Thank You!
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Crystal posted an update 5 days, 3 hours ago
@alyssa-silva Hi! I am unable to type at all for myself, now, so I have someone typing for me at respite, again. But I am able to call people on my Alexa device. Could I please have your number so that I can talk to people who have my disease. I really miss talking to you. Thank You!
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Crystal replied to the topic Do contractures bother you? in the forum Adults With SMA 5 days, 3 hours ago
Yes, I have a lot of contractures. They hurt a lot, especially in the knees. I had a surgery on my right knee when I was 9, but it didn’t help at all, and it was a lot of pain during the surgery and recovery.
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Kevin Schaefer replied to the topic Tap, tap, tap… is this thing on? in the forum Weekly Wins 2 weeks, 4 days ago
Is anyone else having issues? Feel free to message us or email me at [email protected]. Thanks!
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Kayla Samz replied to the topic Welcome Our New January Members! in the forum SMA Forums Welcome Lounge 1 month ago
I’ve made so many the past 15 years but my favorite was a pickle and this year’s was a mini snow globe. My black lab, Bella, is 7 and my calico cat, Lola, is 13 years old. Being an auntie brings me so much joy! They aren’t finding out the gender, as of right now. So I have to wait nervously to find out whether it’s a boy or a girl in July. Thank y…[Read more]
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Kayla Samz replied to the topic Welcome Our New January Members! in the forum SMA Forums Welcome Lounge 1 month ago
Your name and location? I’m Kayla Samz I’m 33 years old and from Mishicot, Wisconsin.
Are you a patient or caregiver? I’m the patient and have SMA Type 2-3.
How old were you when you were diagnosed with SMA? I was diagnosed with SMA when I was 1 1/2 years old with a muscle and nerve biopsy. Got my first wheelchair at the age of 2. I thought it wa…[Read more] -
Kevin Schaefer replied to the topic Our First Book Club Discussion! in the forum Disability in Media 2 months ago
I love this discussion! My takeaway from the Harris/Miranda relationship is that I do like that there’s an open-ended layer to it. The “maybe someday” line gave me the sense that they would reconcile eventually, but for now, Harris needed the space. I really like her too, but I respect his decision.
One thing I really liked was the family dy…[Read more]
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Kayla Samz and
Alyssa Silva are now friends 2 months ago -
Kayla Samz changed their profile picture 2 months ago
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Kayla Samz became a registered member 2 months, 1 week ago
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Kayla hi!! So great to see you here. Welcome to the forums! I’m one of the moderators here along with Kevin and DeAnn— just wanted to say hello and welcome you. Feel free to introduce yourself in this forum, and please don’t hesitate to ask any questions!
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I’m so excited to join and discuss different topics on SMA and hopefully make new friends!
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Yes we’re excited too. 🙂
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Welcome Kayla 👋
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Kevin Schaefer replied to the topic Jaco Arm? in the forum SMA Assistive Technology/Equipment 3 months, 1 week ago
Hey, Simone! I love my JACO arm and I write a lot about how I use it in my daily life. Check out this video that DeAnn and I did a while back.
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Kevin Schaefer replied to the topic The First Thing About You: novel about a kid with SMA in the forum Disability in Media 3 months, 2 weeks ago
I loved the book! I actually just had the author, Chaz, on the podcast. Listen here.
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Kevin Schaefer replied to the topic Thoughts On Aging? in the forum Adults With SMA 4 months, 3 weeks ago
Great discussion! I just wrote a column about this subject.
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Kevin Schaefer started the topic Day 31 of #31DaysofSMA: How to Become Successful and Independent in the forum 31 Days of SMA 2022 6 months, 3 weeks ago
Here is our final 31 days story of 2022! Thanks to all of our fantastic contributors this year.
Drew Richard shares his experiences with working and living independently and provides tips for others in the community. He attributes his determination and skills to his parents, who always believed in him.
Here’s an excerpt, “Lastly, prepare to…[Read more]
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Kevin Schaefer started the topic Day 29 of #31DaysofSMA: We May Have SMA, but We Are People Just Like You in the forum 31 Days of SMA 2022 6 months, 3 weeks ago
Keisha and Kea Molina are identical twin sisters with SMA and country music singers/songwriters. They share their story about acceptance, identity, and fighting to be seen in a world that often dismisses disabled people. Through their music, they hope to make others feel less alone and deflect stigmas about disability.
Here’s an excerpt, “Our…[Read more]
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Kevin Schaefer started the topic Day 24 of #31DaysofSMA: If We Fear the Unknown, We Overlook Opportunities for Happiness in the forum 31 Days of SMA 2022 7 months ago
Maddy Gunawan received her diagnosis of SMA Type 2 just before her second birthday. At the time, her parents faced a wealth of uncertainty. They had just immigrated to a new country, had their first child, and were thrown into SMA’s void with no support system.
In time, Maddy and her parents learned to adapt to life with SMA. She went to c…[Read more]
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