139 – Where The Hell Are The Instructions?

Sometimes we wish there was an instruction manual for life’s transitions. How do we decide when it’s time to make a transition to a walker or wheelchair, power chair, hand controls – and how does ego play into the situation?…Listen as the dudes discuss and search for answers.

Sean’s column; No Good Excuse, “The ‘Right’ Time Can Be a Moving Target With a Progressive Disease.”

6 Comments on “139 – Where The Hell Are The Instructions?

  1. Good morning to two of my favorite “Dudes”! I confess I don’t listen to your podcasts religiously but when I do I kick myself for not tuning in more often. You are insightful and thought-provoking.

    You asked for feedback from parents of ataxians in making decisions for their ataxian about next-step adaptive equipment. My short answer is yes, many parents feel the load more than the ataxian themselves because of the responsibility they feel.

    The longer answer is Sean mentioned his two broken bones from falling and in spite of that his desire to make it to the top of the hill “no matter what”. Fine for you but not so easy for your warm and sensitive mother Elaine if she had the responsibility to say yea or nay to the use of a wheelchair or going up that hill. She would acutely feel the responsibility and if you got hurt as a consequence she would not only feel responsible and guilty but also might feel the additional load of having to nurse you back to health. For many FA’ers the parents bear the brunt of the care load when accidents based on risk decisions happen and parents include that in their thinking when making decisions or giving advice about next-step accommodations. Both of you will be pleased to know that if I were your parent (god forbid you’re thinking! lol) I’d feel no guilt or responsibility if you got hurt as a result of my permission to engage in risky behavior, assuming you were of an age to appreciate the risk. And with the permission I’d give an assessment of the range of possible “natural consequences”, good and bad, as a result of your final decision. Growing up all 3 of my girls grew to dislike that term, “natural consequences”.

    In general I think parents operate under 3 main “risk” variables, the first their own personal willingness to accept risk (scale of 0 – 10), second their perception of the riskiness of the natural consequence, positive and negative (scale of 0 – 10), and third their and their ataxian’s emotional/time/energy/financial ability to survive a negative natural consequence.

    1. Paul – we love you and forgive you for not listening religiously! 🙂 Thank you for taking the time to share with us. Your perspective and experiences are always relevant. We’re both grateful for the “parent” role you hold for so many of us ataxians. Looking forward to riding bikes with you again soon. -Sean

  2. Yep it’s how we learn and it does seem like we all do our own thing with somewhat equal out comes; however in the BIG picture, why we do what we do does matter in our everyday existences, but for sure in our eternal life. And I know I’ve lost you guys with that last statement, but just because you may not agree, think it’s far or believe in heaven/Hell or the Creator God, in no way impacts the TRUTH of Him and His hand in our lives. Everything that I do “should” be done in the light of that fact.🙏

  3. Thanks for the encouragement, guys! I was actually folding my laundry while listening and got a laugh as I heard you express your disdain for that chore. I hate it, too! But, getting to listen to y’all while folding helped it be more palatable! Blessings 2 U both!

    1. Hi Jennifer! Thank you for listening and for leaving a comment. Perfect timing with your listening to this episode. Hopefully you didn’t have more than 35 minutes worth of folding to do. 🙂
      -Sean

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