SMA News Forums Forums Our Community Adults ​With​ ​SMA Reflecting On My Bobblehead Days

  • ryan-berhar

    Member
    June 19, 2019 at 8:16 pm

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

    • kevin-schaefer

      Member
      June 23, 2019 at 1:52 pm

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

  • deann-r

    Member
    June 20, 2019 at 9:35 am

    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.

    • kevin-schaefer

      Member
      June 23, 2019 at 1:58 pm

      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.

  • shawn-stewart

    Member
    June 22, 2019 at 8:48 pm

    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.

    • kevin-schaefer

      Member
      June 23, 2019 at 2:02 pm

      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.

  • shawn-stewart

    Member
    July 2, 2019 at 6:08 pm

    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.

    • kevin-schaefer

      Member
      July 2, 2019 at 9:51 pm

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

Log in to reply.