This topic contains 8 replies, has 4 voices, and was last updated by  Kevin Schaefer 1 week, 6 days ago.

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  • #19429
     Kevin Schaefer 
    Keymaster

    Hey everyone, hope you all are having a great week.

    My latest column is up, and it’s filled with my usual absurdist humor. You can read it here. Hopefully, the title alone will make you curious enough to read it.

    A couple weeks ago, I wrote about how my head control has improved significantly in recent years. I attribute a lot of this growth to my Spinraza treatments and physical therapy sessions, and I went into more detail in this column. I couldn’t resist calling myself a bobblehead, when I thought about all of the times my head used to tilt.

    Can you relate to this notion? Do you have difficulty controlling the stability of your head?

  • #19472
     Ryan Berhar 
    Keymaster

    I have basically zero head control, but that’s always been the case.

    • #19522
       Kevin Schaefer 
      Keymaster

      Yeah, it’s tough. It’s a struggle for a lot of us, but PT has been a big help in this regard.

  • #19481
     DeAnn R 
    Keymaster

    Definitely car rides are the worst. I’m used to my Mom’s driving so can anticipate when she speeds up or slows down. If someone else drives I have to be so much more conscious of how they drive. Also when I get a haircut I have to let them know my head might fall back if they pull too hard, but it’s no big deal they just need to set it back up.

    I do think I’ve had slight improvements in that department since starting Spinraza, but can still be caught off guard.

    • This reply was modified 3 weeks, 5 days ago by  DeAnn R.
    • #19523
       Kevin Schaefer 
      Keymaster

      I hear ya! Some friends drive a little faster than others, and this is something I have to make them aware of. With haircuts, I’ve had the same barber my entire life, which definitely helps. But I can see where that’s tricky too.

  • #19518
     Shawn Stewart 
    Participant

    Great article Kevin, I have a friend that jokes with me about being a bobblehead especially when riding in my van.  My head control has improved as well since being on Spinraza, but occasionally it will fall forward if we have to stop quickly in my van.  My friend suggested I get a strap to hold my head up while riding in a vehicle to prevent a neck injury, but that idea doesn’t seem comfortable to me.

    • #19524
       Kevin Schaefer 
      Keymaster

      Thanks Shawn! Yeah, it is a fun subject to make jokes about.

      Do you wear a chest strap? That helps me a lot in car rides.

  • #19628
     Shawn Stewart 
    Participant

    Kevin, it was great chatting with you at the conference.  No I don’t use a chest strap, I just wear the seat belt from the van which has a shoulder belt.

    • #19629
       Kevin Schaefer 
      Keymaster

      Great meeting you too Shawn! Sorry I didn’t get a chance to say goodbye, but glad we got a chance to talk.

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