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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


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This topic has 6 replies, 3 voices, and was last updated 1 month ago by Michael Morale.

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    • #24144
      Michael Morale
      Keymaster

      On Friday, July 3, 2020, I had to go to UT Southwestern Medical Center in Dallas Texas to be tested for the COVID-19 virus. This test was mandatory before my next Spinraza injection scheduled for Monday, July 6, 2020.

      6 hours after my test, I received notification that my results were in my UTSW Patient Portal. Even though I was relatively certain that my results would come back negative, it was nice to see the word “negative” listed as the result. We all have that question in the back of our mind as to whether or not we’ve actually been around other people that may be carriers, so getting these results back proved that the steps that I’m taking, and the steps that my family, caregivers, friends and physical therapists are taking are working.

      Wear a mask when you’re out in public, and please social distance yourself from large crowds. It’s a price definitely worth taking!!

      Have you had to undergo a COVID-19 test before a medical procedure? Please share your thoughts with those of us in the SMA forum.

       

    • #24149
      Lupa F
      Participant

      Glad you were negative. I think if any of us got it, we’d definitely know.

      I’m supposed to go for my next dose on Tuesday and I’m worried once I get there they’re going to tell me I needed to be tested before they can do it. I asked 2 different people and they didn’t say I needed to so I really hope not.

    • #24173
      Alyssa Silva
      Keymaster

      Yep, I had to get tested the day before my Spinraza procedure as well. I wasn’t nervous about the results because, at that point in time, I hadn’t left my house once. I was in full lockdown mode, and no one was allowed in or out. So the chances of me getting COVID-19 were very slim. However, I was slightly concerned about catching it at the test site. The nurse came into my car with full PPE to do the test, but still. People with symptoms were also going to that test site, so it kind of grossed me out. Fortunately, all went well and I was able to go to the hospital (and not catch anything!!) the following day.

    • #24174
      Alyssa Silva
      Keymaster

      Hope everything went well yesterday!

    • #24183
      Lupa F
      Participant

      I just got back from my Spinraza injection. It went fine. They didn’t require a test, they just asked if I tested positive in the past 2 weeks.

      I guess they’re just dealing with it there if anybody is positive. They have 2 waiting rooms to wait in before being brought back for the procedure. As I started heading toward the one I usually go to, the woman at the desk said “You probably want to go to the other side, we use that one for positive patients.” Didn’t exactly make me feel great that they sort of let me expose myself that way, I got to within about 5 feet of that room, but we’ll see in a few days I guess.

    • #24218
      Michael Morale
      Keymaster

      Hey Alyssa,

      Everything went well. I went into the hospital about 10:45 AM, and after the procedure was completed and I had one hour to lay on my back, I was released from the hospital around 3:30 PM CST.

      Hope you’re doing well, and have a blessed day.

    • #24219
      Michael Morale
      Keymaster

      Lupa,

      I’m glad that your procedure went well. It can be somewhat unnerving to be too close to people that have tested positive. When my caregiver dropped me off at the hospital, I had to have my mask on, and I had to go through 2 different checkpoints before I was admitted into the hospital itself.

      When I got to the registration desk, they a bulletin board with a phone number that we had to call. When I called this number, they checked me and over the phone and then came out and took me to my room. All the doctors and nurses were in their PPE’s, and everyone was taking the necessary precautions that they needed to.

      Let me know if you have any other questions, and have a blessed day.

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