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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 18 replies, 8 voices, and was last updated 1 year, 9 months ago by Kevin Schaefer.

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    • #14404
      Kevin Schaefer
      Keymaster

      In his column this week, Michael Casten wrote about his daughter Ella breaking her ankle recently: https://smanewstoday.com/2018/10/03/sma-brittle-bones-ankle-fracture/?amp&_gl=1*z0vt6f*_ga*d3N4dUY5dkNOWUJJUG9HYWwxQ2haZllFUkpPOHZRaTFOQmluY2ZKRDUxbDBDOHB1U1JHZkgyNlhjVzZ3ZG5hag...

      Like Ella, I’ve also dealt with my share of broken bones. I’ve never had to undergo surgery for a broken bone, but I’ve been casted and hospitalized plenty of times. These situations are never fun, but you do almost get used to them. I wrote a couple columns about the last time I broke my leg in 2017: https://smanewstoday.com/2017/05/09/curveball-part-one-possibly-broken-leg/?amp.

      Have you all broken bones before? Did you ever have to undergo surgery for a broken bone?

    • #14428
      Adnan Hafizovic
      Participant

      I never broke bones but I had I think five or six time twisted ankle.I three times fall out from wheelchair and luckily I just twisted ankle.I always say God save me.

      • #14442
        Kevin Schaefer
        Keymaster

        That’s great you haven’t broken any before. Even with smaller breaks the recovery process is still a pain.

    • #14436
      Ryan Berhar
      Keymaster

      I fell out of bed and broke my femur several years back. I didn’t need surgery, just a cast.  I actually consider myself fortunate, because my bed is probably a good four feet tall, so it could’ve been worse. This is the only bone I’ve ever broken.

      • #14443
        Kevin Schaefer
        Keymaster

        Yeah the last time I broke my femur it was because I fell during a hoyer lift transfer. They suck, but that’s good you haven’t had any since then.

        • #14456
          Ryan Berhar
          Keymaster

          I’ve never had a hoyer accident. I think they’re pretty safe and reliable, but they’re a little scary at the same time. Sorry about that.

    • #14483
      DeAnn R
      Keymaster

      Several years ago I broke my elbow.  Funny because they typically see that type of injury in arm wrestlers I guess.  Normally with a break like mine they would have done surgery to place pins and plates, but they didn’t think my bones were strong enough for that to work so they casted it.  I hate surgery anyway, so I look at it as a blessing in disguise.  I did loose strength being immobile that long and I can’t straighten it all the way, but thankfully it was my “bad arm” so I’ve only had to make minor adjustments.  Now I have a good weather indicator too.

      Recently I met with an endocrinologist to talk about bone density.  Out of the osteoporosis treatments the one I’m considering is Reclast.  It’s a once a year infusion to help prevent more loss.  My question is since my bones are already bad, would it really make that much difference?  If I fall or something I think breaking a bone is kind of a given. Does anyone else do similar treatments?

      • #14522
        Kevin Schaefer
        Keymaster

        I did look into osteoporosis treatments after my last break, but I opted not to pursue them. At the time I was getting close to being approved for Spinraza, and I didn’t think it was worth it to add on something else. Plus there were risks associated with the drugs that the specialist had recommended.

    • #14513
      Mike Huddleston
      Participant

      So, had my annual clinic visit at Hopkins today.  That was interesting as we discussed bone density.  Dr. Sumner wrote me a script for a DEXA scan and will meet with me after the results are available to discuss options.  So, interesting you mentioning that DeAnn.  She did mention the possibility of meeting with an endocrinologist depending on the results.  I haven’t scheduled that appointment yet.

      As far as breaks, and these happened when I was pseudo ambulatory:  I’ve broken my left collarbone twice; once while playing golf on a Florida vacation.  No surgeries for either of those breaks, but recovery was long and difficult.  The fear of falling while recovering from that kind of break (how could I possibly fall and not hit my shoulder???) was pretty overwhelming.  Another time, maybe 20 years ago, I fell and snapped my big toe (legs buckled and my weight went straight down on it while barefoot and happened to be stepping over a bathroom marble door threshold.  Uh, the threshold won, but again, no surgery.  And in 2015, in the event that moved me to a chair full time, I fell and shattered my left tibia and tibia plateau while walking with lofstrands.  That one required a plate and rod related surgery.

      In the chair, the closest I’ve come is bending my foot back against a door jam or similar.  Could have sworn I’ve broke toes or the top of my foot on a few of those occasions,but so far have been fortunate.  Sometimes when zipping around in the chair, running into something solid requires the chair a slight delay to disengage from forward to a stop.  When the foot is involved when this happens, well let’s just say words of joy do not come out of my mouth.

      • #14526
        Kevin Schaefer
        Keymaster

        My sympathies. All of those sound pretty bad. I once drove into a couch and broke my femur all the way. It still didn’t require surgery, but like you said it was a long and painful recovery.

    • #14521
      Dennis Turner
      Participant

      Broke all four bones on the top of my foot, two bones on the back of my left hand, shattered my ankle (twice,some one), broke two ribs, and cracked my head open. Only let them treat the ankle and the head. Stitches for the head, plates and screws for the ankle. The six weeks of recovery  for the ankle helped me lose mobility and pretty much forced me into a chair.

      Bone density showed that I had issues, but they simply started me on calcium supplements, which made me nauseous.  Fun times.

      • #14527
        Kevin Schaefer
        Keymaster

        Man, that’s rough. Do I want to know how it happened?

    • #14585
      Dennis Turner
      Participant

      Many different times. Basically my body failed when I pushed too far or tried to do what I was able a few weeks earlier. No treatment for most things because if I was put into a splint or walking cast, I was immobile and I wasn’t willing to do that until I had no other choice.

      Funny story  with lofstrands, a young new pet decided these would be great for me. As I tried them for the first time, I went down and she ended up falling on top of me. No one was hurt, and we decided not to try again.

    • #14586
      Dennis Turner
      Participant

      PT not pet

      • #14589
        DeAnn R
        Keymaster

        Ha ha, thanks for clarifying. Although pets can contribute to the issue. I credit my cat for a twisted ankle and dog for my broken arm.

    • #14587
      Angel
      Participant

      I have broken 9 bones, if you do not count fingers and toes. Mostly ribs actually, sometimes the same rib. (If those driving you do not have excellent records and you wear a tray, bring a pillow.) I have had 4 documented concussions, probably more than that, but after you have had a few you know what to do and what to look out for if something goes wrong. Fortunately, nothing ever went seriously wrong with those. Strangely, the brakes usually had less to do with wheelchairs and transporting, than roughhousing, car accidents and maybe not the best decisions. The toes and fingers are definitely something that you need to be careful with when driving a wheelchair or existing in a wheelchair around people with backpacks at the right level (got to love middle school). When I was growing up, my doctors never really told me that I had brittle bones. So I played with my brothers like I didn’t. We broke my patella, femur and tibia in a transfer/wrestling match involving 2 of my brothers while getting into a van. I was 8; we were on a trip, and my dad was sure that it was just sprained. After moving it around all night (good for sprain, bad for a break), we drove home and it swelled up even more. A quick trip to the ER sent us back to a specialist (in the city from which we had just returned). After another 3 days waiting for the swelling to go down, so they could re-break the bones and set it, I received my cast. It weighed almost as much as I did at the time and it went from hip to toe. It took 3 people to take me to the bathroom, one to hold me, one to hold the cast and one to deal with the clothes. At that point, having older brothers came in very handy. That was a very long 3 months! When I was a teenager, we cracked my ankle trying to pop the front wheels of a rental chair (with no foot rests) up a step. I think it was a three-week cast on that one. Almost out of college, I broke my collarbone during a lift with a bit of a trip and an accidental bodily slam into a very metal potty chair. It was right before Tax Season and 80 hour weeks where no fun! But “you live, you learn, you bleed, you learn, you break, you learn”. Okay, so I added that last one, but I think the original artist would be okay with it. The important thing to remember is if we break we do indeed heal. Healing does not always feel like healing, sometimes it is like hurting. Anyone who has had to do a section treatment or a bronchoscopy or re-break a bone can testify to that point. But as the parent raising a child with SMA, you cannot always or maybe even mostly protect your child from the pain that their life will bring. You can comfort them, you can hold them (at least until they become teenagers and stop letting you… in public), and you can always be there to help them. However, maybe the most important thing you can do is teach them that pain is a message, one that they should listen to, but not one to fear. Being afraid to live (especially at a young age) will cause far more pain than any broken bone. Our bodies need to be pushed, use it or we will lose it. Truthfully, even after using it, we might still lose it, so enjoy it while it lasts. And as a physical therapist once told me, contractures come slowly over time and not from injury but from apathy or focus on other, seemingly more important, things. We will never be normal, our experiences will never be exactly like other people’s and we will always have to work harder to do the basic things that most people do easily. However, that is exactly the reason we should never be afraid do whatever we find worth doing, because who else could ever get that kind of enjoyment out of even the small things?

      • #14598
        Kevin Schaefer
        Keymaster

        Nine broken bones! Yikes! Those are some stories.

        You’re absolutely right though that we shouldn’t let our circumstances prevent us from living and being active. It’s important to find a middle ground between protecting yourself and still trying new things and being active. Thanks for sharing.

    • #14711
      Shawn Stewart
      Participant

      I broke my left femur, right hip and right humerus.  All separate incidents and all wheelchair accidents.  The right arm was 3 months ago and the least painful.  Femur was the worst.  I take liquid vitamin D every day now to help my bones now.

      • #14727
        Kevin Schaefer
        Keymaster

        Broken femurs are the worst man. I’m fortunate that I didn’t have to have surgery when I broke mine, but still.

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