Hi, Russ Newton here. I was diagnosed with Bulbar onset ALS on November 1st, 2019. I retired that day and am sitting here on June 24th, 2021 and I can no longer speak. I have actually increase how much I take by mouth by using a fork to move the food around instead of my tongue which no longer works and is why I can't speak. And my diet is limited to smoothies, Mac and Cheese, Enchiladas, Foie Gras, lamb chops and muscles. I can eat other foods but they are risky and it is painful to me because of how long it takes. No lost of mobility. This is truly amazing to my doctors. And for that I give thanks to God. I am happy now that I got the feeding tube, it has taken much of the pressure off of eating and is god send for when I don't feel like eating the same six things. I just got back from a long car trip which started in Wisconsin, took me to Mechanicsville, MD to see Matt Miller and some old friends from my last hour job at the Army Times. I stayed there for five days, then off to Nashville, TN to see my son and his girlfriend, Julie. Then on to San Antonio to pick up some CBD oil, no THC it helps me sleep. Then on to Phoenix where i spent the night with my sister, Annette. Then on to Southern California to see Chris and Sonia Avetisian. Took a quick trip to San Diego to see Thomas K. Then off to Utah to see Jeff and Melissa Johnson. Then home. Over 6,000 miles. So that is the current state of affairs for me. I have a few visitors coming to see me but will post about those people when they actually get here.
Russ
This is the ALS diet in action a svelte 215lbs!
This is me in 2015 at 300lbs. Russ
Russ - we haven't seen each other since I retired from CIPS Marketing in 2015. Your ALS diagnosis is tough news to swallow but like everything else you do in your life, you are handling it with aplomb. This is such an amazing website! Your resilience is remarkable and instead of being consumed by pity, you are living your life to the fullest, sharing your wisdom & perspective, volunteering your time and being brutally honest about your feelings. I look back fondly on your time on my Board. You pulled no punches and you always found humor in the direst of situations. I knew I would get no mercy but always had the greatest respect for your ability …
Dear Russ,
I follow your posts with large interest and I am happy that you still manage to enjoy your life and spend time with friends, family and former colleagues. Hopefully I can manage that we have a chance to see each other again as you are considered as a good business partner and more important as a friend for myself.
You are no more "dead man talking" than the rest of us. Last I heard you just enjoyed a Bucks playoff game and a 6,000 mile vacation filled with attentive friends and stylists. That on top of about 20 other vacations and numerous visitors bringing you joy and good-will(I'd be the exception - I am more a canker - proudly). I am starting to suspect that this whole thing is put-on. Fess up!! If so, I am going to steal the idea. I am seeing lots of good times!.. with many more to be had!!