Hi all,Just a glimpse of life in tertiary stages of an ALS...

Hi all,

Just a glimpse of life in tertiary stages of an ALS sufferer.

The testimonial supplied by NZT by an unknown author.

https://www.thestar.com/opinion/contributors/one-in-four-als-patients-opt-for-maid/article_6f2e8926-cc50-11ee-b74e-47841bba8ea1.html

The guilt is killing me

I was diagnosed with ALS in 2019 and i’m absolutely miserable. However, the majority of my sadness comes from guilt. I don’t blame anybody for my disease, nor do I ask myself why this is happening to me because honestly, I have been blessed with an incredible life! I was raised by two of the most loving parents, I married an angel and we have two beautiful children together. I always tell people that my heart is always full.With that said, I read a lot of posts regarding caregivers, and the struggles that they have to go through on a daily basis and I’m desperately trying to avoid that for my family. My progression is slower and I can still walk and speak with no issues but I have lost all function of my arms and hands which makes me rely on my wife for many of my daily activities. I’m just exhausted from having to always ask for help and for people helping me with the littlest of task. I used to be the person that helped others but now I am the one that’s helpless.

The worst part of this all is that my doctors will not approve me for MAID because they feel I am not within six months of dying. It’s so frustrating because I have to live with this immense guilt and sadness. I wish society would let individuals make their own choices when dealing with a terminal illness and they should have the right to choose when they feel it’s time for them to move on. I realize that there’s no right or wrong answer when it comes down to life ending measures and it’s perfectly fine for those individuals that want to extend their life by any means, but that choice should be made by the individual.

It was extremely sad because a close friend of my family who suffered from ALS was also denied her request for MAID but the doctor said she could starve herself as an alternative. How can society approve of someone literally starving themselves to death when there is a more humane and peaceful option ?

My wife is always trying to encourage me to stay strong and that she doesn’t care about the money I saved for her future because she wants to use it for any care that i might need. However, I wish people would realize that I don’t want to spend a single dime for my care. I pinched and saved a nice size nest egg, so she can travel and enjoy a great retirement for her and hopefully our future grandkids.

I told her that I would rather go one year early then one year later, because in that one year, all the money, I saved could be gone.I am not sure why I’m posting this, but sometimes I feel they don’t understand what this disease does to people and I know many people in this group can somewhat understand what a what I am feeling.


Thank you so much for taking the time to read my post and for all the caregivers out there, I want you to know that your selfless sacrifices are truly remarkable, and I pray that you have the strength to continue.-----------------------------

Time to get this drug out there people.
Expedited action from now on.

Kpax