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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, 1 voice, and was last updated 7 months, 3 weeks ago by Alyssa Silva.

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    • #21738
      DeAnn R
      Keymaster

      Although Spinraza is becoming routine for some of you, for me it’s anything but. So many variables can come into play I never feel totally at ease. Despite the process being challenging, I am grateful for the opportunity. Plus the hospital has warm blankets!

      As with many of you, drawing my blood can be a challenge. Starting a week prior I hydrate extra to plump up my minuscule veins. Since I don’t have an SPC and have a limited PCA schedule this is difficult. This time around my regular PCA called out sick all week throwing a wrench into my extra hydration plans. I still managed for all the good it did. It took three pokes to get my blood for the labs. I am able to collect the urine sample from home and with all that extra hydration that wasn’t a problem. Surprise, the virgin still isn’t pregnant!

      Next challenge, transportation. Since switching companies, my anxiety level has dropped significantly. However, I live in Minnesota and it is December. We always add ample time to factor in traffic and weather. It’s a good thing we did because a new driver paired with crummy roads added an hour onto our already long commute. We did get there and back safely despite seeing at least four cars in the ditch on the way down.

      My “complicated spine” might be the biggest hurdle. So far with the help of CT guidance my confident Interventional Radiologist has never had problems getting access. However this time the 7″ needle wasn’t exactly cooperating with him. He was hitting bone or tough tissue where there didn’t appear to be any. He must have bent the needle or something because he had to pull out and get a new needle. It took twice as long as usual, but thanks to lidocaine, it was tolerable. I was worried if I’d be sore the next day because of all the poking and prodding. Surprisingly I wasn’t. I’m fortunate as well to avoid the dreaded spinal headache or any other negative side effects.

      So, now I’m set for another four months. Glad it’s done, not looking forward to doing it all over again in April. At least the roads should be better! How’s it going for you?

    • #21749
      Alyssa Silva
      Keymaster

      Seems like you and I have similar experiences with Spinraza.  I’ve lost track of how many doses I’ve had (I think 12?), but regardless of the number, I still get nervous before each procedure. You’re so right in saying there are SO many variables! I’m so sorry your IR had some difficulty getting to your spinal canal this time around. Whenever that happens I usually have to take some ibuprofen. Hope you’re feeling better today!

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