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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 10 replies, 5 voices, and was last updated 1 year, 2 months ago by Ryan Berhar.

  • Author
    Posts
    • #19093
      Crystal
      Participant

      Hello, my name is Crystal. I have SMA type 2 although I am very lucky. I’m 19 years old and I can still hold my head up and move my arms a little bit. I don’t use a Robotic arm or anything (though the nerd side of me wishes I did). I’ve been reading the blogs here on SMA News Today for awhile and I love reading them cuz they make me feel less crazy. But I never bothered signing up for the forums until recently. Typing takes a lot of energy and I’d rather just watch YouTube or Netflix or read. But here lately I’ve been feeling really down and out and confused cuz of SMA and I’m tired of feeling so alone, so here I am. You know how when we’re kids, people always say “You can be anything you wanna be.”? Is that even true though? I don’t think so. If that was the case, I’d be working my butt off to become an FBI agent right now… Instead, I sit with my home health aide and watch Criminal Minds. I have this strong need to help people so I started a YouTube channel where I talk about SMA and life and give advice and basically try to help other people survive this life, but that doesn’t feel like enough. SMA prevents me from doing what I want and here lately that’s really been bugging me. Also, my scoliosis has made an even worse turn and it hurts when I lay down which makes it frustrating trying to get good sleep. Reading the blogs on here really helps me so I figured I’d reach out to the people who understands me…

    • #19094
      DeAnn R
      Keymaster

      Welcome Crystal! I’m glad you’ve decided to post. We’re happy to have folks reading our posts and viewing content, but we love interacting with you guys as well. As far as, “You can be anything you wanna be,” if that was the case I’d be an astronaut (mainly because of the zero gravity thing.) I’m not sure many people actually attain what they aspire to, but I do believe you should find something you’re passionate about and then try to get paid for it. Do you ever listen to our podcasts? You can find them here https://smanewstoday.com/flash-briefings-and-podcasts/ If you scroll part way down you’ll come across my a few of my perspectives that include in one titled: “New Endurance Test Can Measure Fatigue in Types 2, 3, & 4 SMA Patients & Accomplishing Goals.” The accomplishing goals part is what I recorded. I touch on what you mentioned. Another one you might find interesting is titled “Better Screening Techniques Improved Advancements in SMA Treatments & Knowing Your Limitations” Again, the knowing your limitations was my portion. With SMA we sometimes we have to be a little more creative when we go after what we want.

      Sorry to hear you’ve been uncomfortable. I would highly recommend speaking with your doctor regarding this. A Physiatrist deals with chronic pain issues, so maybe your primary physician could give you a referral if that’s something you’d want to check into. My spine fusion took care of my back pain, but I do struggle getting comfortable in bed. Memory foam is my friend, but it’s different for everyone.

      Again, it’s nice to meet you. Feel free to chime in on any topics.

    • #19095
      Halsey Blocher
      Participant

      Hey Crystal! Glad you decided to join us! I think it’s great to be able to talk to other people you can relate to. I love you started a youtube channel! What’s it called?

      • #19099
        Crystal
        Participant

        Thank you! I’m glad I finally joined. Its very nice to talk to people who actually understand me. I love the idea of going to the moon to escape gravity, except that astronauts have to exercise a crazy amount. but I love the idea. I also want to be a screenwriter and I have an idea for a movie involving a character who has SMA and it involves going to the moon to escape from SMA. I’m not quite ready to write it yet though. I’m still learning and practicing and I want that script to be perfect so I’m waiting until I’m better. For now, I’m currently trying to think of a movie idea involving SMA in a simpler way but I don’t know what yet. I haven’t listened to any SMA News Today podcasts, mostly cuz I’m not a fan of podcasts in general. But the ones you were talking about seem good so I’ll definitely give them a listen. We have to be more creative in pretty much all aspects of life with SMA, tbh. From the way we get to stay home alone to how we get comfortable and even how we work and what kind of job we have. I’m so glad my birth dad was into art and taught me how to be creative.
        My mom said that there’s really nothing we can do about my recent turn in my spine. I already had a spinal surgery several years ago, but the surgeon was a fraud tbh. My mom said that if she had known about how all his other patients ended up, she wouldn’t have let him be my surgeon. But oh well. “The past is past, move on to better days.” – Sleeping With Sirens. Although, now I can’t have any more surgeries cuz we know I won’t come off a resperator.
        My YouTube channel is called Surviving Life. I haven’t uploaded many videos yet but I could probably link it here for y’all. Hold on a second…

    • #19108
      Kevin Schaefer
      Keymaster

      Thanks for posting Crystal! It definitely takes courage to share openly about life with SMA, but we’re happy to provide you with encouragement and support.

      Also, would you mind reposting the link to your YouTube channel? I accidentally deleted it when I was trying to move it from the spam folder. My bad!

    • #19110
      Crystal
      Participant

      No problem! I appreciate y’all checking it out very much!
      https://www.youtube.com/channel/UC45u28TdCCryfxPb3dBlviA

    • #19113
      Ryan Berhar
      Member

      Hey Crystal, I too would love to be an FBI agent, but it turns out writing is a more realistic line of work. I love Criminal Minds too btw. Sorry about your scoliosis. Hope you can get that fixed soon! SMA hit me hardest from a mental standpoint around age 19 as well, so I totally understand how you’re feeling. I was in a major rut, and just felt hopeless and trapped. I’m now 23, and have made progress, but it’s still a battle every day. I felt like there was no light at the end of the tunnel (if there was, it was a train coming to run me over lol) but it definitely does get better. I’ll check out your YouTube channel too.

    • #19116
      Crystal
      Participant

      Thank you! I really appreciate it. I’m about to turn 20, but I don’t feel 20 at all. And honestly time scares me. Like I don’t know how much time I have yet everything that we can work for takes time. No one can write an entire 120 page movie script in a week and get it produced and filmed in any short amount of time. It has to take at least a year to film an average movie. I hate time tbh. And I doubt I’m the only one with SMA who feels that way.
      Is it crazy or stupid that I feel guilty almost for still being alive and doing as well as I’m doing? SMA has stolen the life of plenty of innocent people yet I’m still alive. I see people with type 2 who can’t move their arms on their own and can’t hold their heads up and can’t sit on their own yet I can. Granted, I need help for MANY things and yes my head falls back when people tilt my chair back sometimes…But I can actually roll around in my manual wheelchair a bit. I don’t use a power wheelchair at all actually. I can’t type the proper way but I can use my knuckles and a pencil tip. I can play the keyboard sorta. And then there’s those people who are being kidnapped and killed and God only knows what else. And here I am still alive and doing well despite SMA. I don’t really see that as fair. And I don’t really understand why I’m still here just to watch Netflix and obsess over fictional characters. I mean, the most exciting thing that happened to me today was when I took a Buzzfeed quiz called “Is Tom Holland, Tom Hiddleston, or Tom Felton?” and I actually got the one I wanted (Tom Holland). lol

    • #19135
      Ryan Berhar
      Member

      I certainly wouldn’t feel guilty if I were you. I’d feel thankful. I try not to compare myself to others. Why are you doing relatively well while someone else gets kidnapped and murdered? I have no idea. Lol.  There usually is no reason why. Life simply isn’t fair. Some say everything happens for a reason, but I personally don’t buy that. Stuff just happens, and it’s usually best not to ask why, in my opinion at least. I know that’s pretty philosophical, but there you go. Haha.

    • #19136
      Crystal
      Participant

      Lol. Yeah I get that. And I am grateful most of the time. But I get lost without meaning. I put meaning into everything I do. Even when I color the simplest picture, the colors I choose have to explain something. Its hard for me to accept that there’s no reason why I’m here and others aren’t – esp. others who were actually going places in life.

      • #19138
        Ryan Berhar
        Member

        I hear you. Having meaning is very important. My meaning is in my faith. It’s what gets me through each day. But when it comes to asking why, that’s where things become fuzzy for me.

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