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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 5 replies, 3 voices, and was last updated 11 months, 2 weeks ago by Ryan Berhar.

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    • #19310
      Brianna Albers
      Keymaster

      Hi everyone! My latest column is up. In “Learning Self-love from My PCA’s Daughter,” I talk about my relationship with Elena, my PCA’s two-year-old. She and her mom have been coming here for about a year, and I’ve really enjoyed getting to know them. Elena is shy, but over the past couple of months, she’s really warmed up to me. When she’s not holding my hand, she’s pretending to braid my hair; when she’s not braiding my hair, she’s counting the moles on my arms.

      It occurred to me last week that Elena is one of the few people who is willing to touch me. Touch is one of my love languages, but because I’m in a wheelchair, I’m more or less touch-starved—other than my parents, Elena and her mom are the only people who touch me on a regular basis. It just served to remind me how important it is for human beings to experience platonic touch.

      Do you have platonic touch in your life? Is it something you enjoy?

    • #19337
      Tracy Odell
      Participant

      Hi Brianna,

      Great topic! It’s so true that when sitting in a wheelchair, you don’t get the same kind of casual touch as you would if you were walking around – somebody just bumping into you or nudging you or giving you an affectionate hug. I don’t let people hug me unless I have given them a brief lesson in how to do that without making my head fall over. That way, I can actually enjoy their hug!

      I also enjoy the innocence of young kids when they treat me like a play object. When my great-nephew was visiting recently, he was using parts of my wheelchair and my arm as a runway for his toy car! He didn’t hesitate at all and it was really the first time that he had a chance to interact with me. Very few adults would feel at ease with me so quickly.

      When I have been able to, I have had massages which are a really nice way of getting touched that doesn’t feel clinical.

      • #19383
        Brianna Albers
        Keymaster

        Elena does that as well! She’s started using my footrest as a stepping stool and my phone holder as an armrest. Massages are great! I get them biweekly for my tension headaches and they’ve really forced me to come to terms with some of my “touch issues” 😂

    • #19340
      Ryan Berhar
      Participant

      How sweet. I definitely relate to being “touch starved” as you put it. The trouble is I generally hate being touched, because it’s pretty much always care related. A simple hug or handshake would be nice, but both are essentially impossible.

      • #19384
        Brianna Albers
        Keymaster

        I totally get that. Do you have caregivers that would be willing to touch you every once in a while in a non-assistance context? My PCA read the column above and gave me a long, full-body hug, which was nice.

        • #19385
          Ryan Berhar
          Participant

          I’ll give it some more thought

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