TeamShaunyBoy
  • ABOUT
    • About ALS
  • MERCH
  • DONATE
  • BLOG
  • ADVOCATE
Picture

Quadriplegic

5/1/2023

1 Comment

 
Picture
It has been awhile since I’ve written about anything in my recent life experiences. First off, if you are reading this thank you . It is just a culmination of my experiences in the world since I received my terminal diagnosis.  I recently lost my arm and hand movements, I’ve earned the title quadriplegic.

I have been dreading this moment since my initial diagnosis.  Told myself I would not want to live like that. Can you imagine, paralyzed and unable to talk, hell no I’m not going through that shit. This was the polarizing moment where I had to make a decision.  And I didn’t make a decision, but I pointed mentally towards i will just let the disease take its course.

As time went on I began getting my affairs in order and working a lot to keep my mind busy.  I saw the movies Gleason and Augie, and I saw that it was not all doom and gloom, these guys are living. I said to myself I can do that, but then I learned that insurance doesn’t cover caregiving and I would be paying six figures a year to have the required care. Holy shit, just another huge burden.

​Today I am living with ALS. Yeah it’s fucking hard, I have some horrible experiences that pushed me to the edge. But here I am, and I am happy with my life.
1 Comment
Sue Bassett
2/23/2024 01:10:58 pm

Hi Shaun - I am the Treasurer for ALS United Orange County and I remember you and your son from a golf tournament many years ago. I hope you are having a good day today. I enjoy reading your blog. Take care.

Reply



Leave a Reply.

    Shaun Kalpakoff

    Archives

    May 2023
    November 2022
    July 2022
    March 2022
    February 2022
    December 2021
    November 2021
    October 2021
    July 2021
    June 2021
    May 2021
    April 2021

    Categories

    All

    RSS Feed

[email protected]

  • ABOUT
    • About ALS
  • MERCH
  • DONATE
  • BLOG
  • ADVOCATE