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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 3 replies, 3 voices, and was last updated 1 month, 1 week ago by Scott Inouye.

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    • #24113
      Alyssa Silva
      Keymaster

      Hey everyone. Last week I asked about your experiences with gabapentin and shared my hesitations about taking it. I also mentioned the possibility of taking CBD instead.

      I’ve since taken CBD oil (THC free) once a day. I’m still very new to this and am taking minuscule amounts to test it out slowly. My plan is to increase my dosage incrementally based on how I feel. That being said, I don’t feel like I have enough experience to share with you as of yet.

      Have you tried CBD? My hopes are that it will help with stress and anxiety which will, in turn, alleviate some of my stomach issues. And I gotta say I am hopeful. But I would love to hear your experiences with it, too!

    • #24118
      Kip Troendle
      Participant

      Hi, Alyssa.  I have tried CBD for painful sciatica which I come down with a few times each month.  I’ve tried an oil form (300 mg) placed under my tongue, and the other in a gummy bear format (1500 mg).  It does work, but for me, only for a shorter time than desired.  It should help you with stress and anxiety.  It did for me.  It made my stomach just a tiny bit nauseous.  Not enough to keep me from taking again, though.  I’m with you… no gabapentin for me!

    • #24120
      Alyssa Silva
      Keymaster

      Hey Kip! Happy to hear it worked for you. I, too, have noticed it doesn’t last an extended amount of time either.

      Interesting though that it made you a little nauseous as I’m finding the opposite to be true. I swear my stomach is always in knots between my GERD and stress. But the CBD is helping me relax which, as a result, is helping my stomach unwind. I think! Don’t quote me on this because I just started taking it! But that’s what I’m noticing so far. 🙂

    • #24123
      Scott Inouye
      Participant

      Hello there. The studies show a that 10 mg CBD per kilogram (2.2 lbs) body weight is an effective dose. Although it has been shown that 25 mg per day is also a good maintenance dose. It really depends on what you are using it to treat. Titration is always a safe method when beginning any new supplement. There are ways to get the most out of CBD. Broad spectrum CBD oil is much better that the isolate form. It should state the type on your bottle or container. Adding curcuminoids (turmeric) or black pepper (beta caryophyllene) to your diet will help increase the effectiveness also. I hope this information is helpful.

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