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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 4 replies, 3 voices, and was last updated 7 months, 2 weeks ago by Ryan Berhar.

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    • #20896
      Ryan Berhar
      Participant

      Hey everyone, here’s Kala’s newest column. She let’s us know that she was recently diagnosed with MS, though they’re not sure what kind yet. This is definitely never news you want to get, but it sounds like she’s taking it well. Has anyone else dealt with multiple diagnoses?

      Add an MS Diagnosis to My List

    • #20898
      Angel
      Participant

      When I read her first article about the initial health problem I was a bit dismayed. But I guess many of us have had to endure more than one diagnosis. When I was 11, I was diagnosed with stargardt’s disease, chronic kidney stone at 18 and H. pylori at 21. Each one has taken its toll, , but I guess SMA teaches us earlier on how to adapt and overcome. We all have different ways of coping and dealing. I personally pray, and I will for Kala. I know after reading some of her book, that may not be her particular method. But I have found that believing in something bigger than the frailty of our own existence can help put my suffering into perspective. Sometimes crying out to God (with a suction machine close at hand) truly does offer some peace, and occasionally healing. However, I am not above temporary fixes like music, laughter, pain relieving substances, creative endeavors, stimulating encounters and good ol’ entertainment escapism. How do the rest of you cope, find solace and comfort and/or overcome?

      • #20899
        Ryan Berhar
        Participant

        I completely agree! My faith is what sustains me. Life is extremely difficult, but I believe God left me here to finish running this race. When I sort of just want it to end, that is what lifts me up.

    • #20926
      DeAnn R
      Keymaster

      Maybe it’s just me, but I feel like when you have SMA it kind of prepares you for other challenges. Although one diagnosis is plenty, it maybe allows a person to take another diagnosis in stride or at least lessens the impact. I’m sure each diagnosis has its own implications, but like Kala implies having SMA has taught me how to adapt and accept. You gotta do what you gotta do.

      • #20931
        Ryan Berhar
        Participant

        Yeah I agree. Our lives with SMA are already challenging, so we’re probably more equipped to handle additional diagnoses.

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