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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.’”


This topic has 1 reply, 2 voices, and was last updated 1 year, 9 months ago by DeAnn R.

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    • #14899
      Kevin Schaefer
      Keymaster

      In Michael Morale’s personal YouTube channel smajourney51, he did a video this week about preparing for injection days. He does things like avoiding foods with a lot of sugar and salt, limiting contact with people so as to avoid colds and drinking plenty of liquids.

      I’ll be honest, I don’t do much preparation other than drinking a lot of liquids the day before an injection. I barely even remember when my injections are, so I definitely don’t prepare weeks in advance or anything. I’m also too much of a people person to hibernate for long periods of time. But props to Michael for doing quality preparation and ensuring that he’s ready for injection days both mentally and physically.

      For those of you who are on Spinraza, do you do anything to prepare for your injections?

    • #15246
      DeAnn R
      Keymaster

      Honestly I don’t do anything special to prepare for injection day.  I’ve heard all the advice like to hydrate and stay caffeinated to prevent spinal headaches, but didn’t learn this until well after my first injection.  Since I didn’t have an issue I didn’t see the need to adjust my routine.  Six in, they’ve gone smoothly, fingers crossed that will continue.  It’s all good preparation advice, but always take into consideration your body, how you get injections and your doctors instructions.

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