09/23/2023
Last November I was diagnosed with ALS! Also known as Lou Gehrig Disease. It is a very rare disease and has no survivors. Mine started in my Bulbar which controls my breathing, swallowing and ability to talk. 85% of ALS patients have the disease start in their limbs. Eventually working it’s way to the Bulbar! This has shortened my life by two to three years giving me one to two years of suffering. And that to me is a blessing! I can still drive, walk my pup, take a shower and do most things for myself in moderation. What I can’t do is talk! I also feed myself through a tube that has been surgically inserted into my stomach. I have lost 25 pounds of muscle and I get fatigued very quickly from my inability to breathe.
I am so thankful for the strength and support from my wife, my two sons, my friends and my family! Yes this is a heavy load knowing that there’s no light at the end of the tunnel but I am trying to get the most out of every day while I still can!
Trying to stay positive is something that I need to do to keep going! My brain is at 100% while my body is functioning at 40%!
I have been trying to adjust and it is not easy! But I am doing my best!
The last two weeks have been very emotional for me because of all the stories and sentiment that I’ve received from friends! It has been overwhelming!!
Thank you for your support!! 😎❤️👊
Edwin Benet has been a fighter all his life. Now his last battle is wit… Peter Schmitz needs your support for Please help Edwin Benet in his battle with ALS.
