Yesterday was an exciting day for me. First, my father in law stopped by. The night before he had guest bartended at The Oaks Club. All of his tips were donations to Team Cornflower for the ALS Walk ! He raised $506. How awesome is that? Secondly, Last night I decided it was time to grow a pair. Lita had gotten a bowl of broccoli and cheese soup from Panera Bread. As usual, she didn’t finish. As she passed by on her way to the kitchen trash can, I stuck my tongue out. She smiled and asked if I wanted to give the soup a try. I said “Yep”. So she sat on the arm of my chair and touched the back of the spoon to my tongue. Wow, that tasted good! I asked for more. So she dipped a half of a spoonful and in my mouth it went. After a few seconds of savoring the flavor, I swallowed, and down it went. Again! And again! I had three spoonfulls of delicious broccoli and cheese soup! Now, I know that you might be a little confused about my excitement. Let me explain. I haven’t taken food by mouth since last November. I had my trach installed in early December along with my PEG feeding tube. There’s a high likelihood that I could choke and/or aspirate. So it’s been a liquid diet for 4 months. And remember, what doesn’t pass over my tongue, I don’t taste. So for me, those three spoonfulls were…. epic! I was taught to celebrate all successes. So I might celebrate tonight with a little bit of meatsauce. I promise you this, now that I have gained a footstep back on ALS, it won’t be easy for it to take it back. Slow and steady, and before you know it…. I’ll be ordering a whole bowl of broccoli and cheese soup! And maybe a corned beef on rye;)
Good or good?
Have an awesome day!
In a previous blog post you may remember me sharing the statement,” The music is the same, it’s the instrument that has changed.” Or something to that effect. In music, it’s not enough to know what notes to play. You have to get the pitch and volume right, and play that note at precisely the right moment. You must balance these things with the other musicians that are playing the other parts of the song. In order for the music to make sense, you must understand how each note fits into the melody and the harmony. As we are about to launch our website, I have been giving quite a bit of thought to our mission, and what will be the best way to accomplish our goals. It is important to me to tell the story of my journey through this disease as completely and as honestly as I can. In doing so ,I fear that I may upset someone along the way. Be assured that this would never be my intention. I hope the melody is one that gets you on the dance floor. I promise you this, We will be keeping it reALS!
Have an awesome day!
Here Ya go, Der, don’ t ya know
I thought you might like to see my smilin’ mug. I’m just hangin’ out today. It’s raining and dank outside. I hope you’re all having as great a day as I am.
The question has been put forth recently,” How is it that you can be so positive?” All things considered, I’m not quite sure that anything is all that different than it was prior to my diagnosis. Well, as far as my overall attitude goes anyway. I mean, life is good. It really is! It’s not the same, but Who am I to complain? Being negative isn’t going to help anything or anyone. I know this from past experience. there was a time when I dwelled on the negatives in my life. That attitude always led to undesirable outcomes. At some point ,I gathered enough maturity and intelligence, to realize that if I wanted a different outcome, then my input needed to change. At first, it was not an easy thing to accomplish. My mom used to tell me that nothing worthwhile ever comes easy. Boy was that the absolute truth. I have discovered, at least from my own experience, therefore my perspective, that positivity and negativity are not polar opposites. They exist alongside of each other, equally powerful, until we give one the energy needed to overcome the other. Think of floating in the surf, just offshore. As a wave reaches you, there is the positive force pushing you towards the shore. Simultaneously there is a negative undercurrent dragging you out to sea. Both positive and negative are there, existing in the same place. Until you kick your legs or stroke the water with your hands to propel yourself in one direction or the other. We have the ability to choose. So I choose to be positive. It’s actually pretty easy to find a positive every day in every situation. All I have to do is look at my wife, my kids, and my family and friends. As for my condition, there are definite positives that come from it. Old friends have returned to my life and I am making new ones daily. I have a new focus that I hope will have a positive impact on others. Impacting others in a positive way has been my passion for many years now. The instrument has changed, but the music is the same. I hope to keep in tune.
Awesome ain’t easy….but it ain’t impossible either!
Have a positively great day!
Had a visit with my daughter, Megan, and my Big Brother Bill today. I think we’re about half way through to solving the worlds problems. Once again I find myself amazed at the giving nature of the folks around me as more donations came in for the ALS Walk for a Cure today. Even from some that had donated before! Megan approached the owner of Sunni Bunni last week about placing a donation jar on her counter. The owner obliged and asked for more info about ALS. After Megan explained to her how the desease had affected her and her family, the owner asked if she could donate coupons for smoothies to the walk participants on the day of the walk. Hows that for increasing awareness? We have since turned the walk organizer on to Sunni Bunni. I’ll just say that the next time I get the hankerin’ for a healthy, organic smoothie, I can guarantee you where I’m gonna get it from! And I think you should too. Sunni Bunni ! By the way, Megan put donation jars at several places. I know that Demetrios on US41 ( Lita and my favorite lunch spot) has one. And Elaine’s on Cattleman Rd south of Bee Ridge,( also our favorite ). Anyways, if you happen to find yourself in one or the other, please say a big “Thank You “.
Have a great night!
We had a great visit from the area ALS Walk for a Cure representative today. We were excited to hear that 90% of the donations received go directly to things outside of admin. The visit was related to the fact that our team has raised over $6500 so far. In fact, we are currently in second place. Not too shabby,eh! I’ve heard folks say ” Second place is first loser “. Not so in this case! Everyone wins! I will admit that it would be special to hit $10,000 our first year as a team.
I learned today that in the state of Florida there are between 1500 and 1600 ALS patients at any given time. The roster is constantly changing. For obvious reasons. I still believe that many of the folks that receive a ALS diagnosis can and should live long and full lives. Even though I cannot do the things that I used to do, and believe me when I say I led a very active life, I have shifted my focus. This certainly doesn’t mean I’ve lost any passion for the things that I loved to do. No Way! Arboriculture, teaching, safety, woodworking, traveling, meeting new people, are still very important to me.
I find my self spending an ever increasing amount of time, educating myself about my desease and it’s complex set of challenges. Ive learned that my progression of symptoms, in their speed as well as their order of occurrence , happens to less than 5% of PALS. I’m just special that way. I’ m not going to waste what I learn purely for my own edification though. I plan to spread the word to whom ever will listen. You see, knowledge is power, and it’s going to take a lot of both to change the disheartening statistics of this desease.
I appreciate all of you that visit here, too read my ramblings. I hope you can glean some small part of what it is I am trying to convey. I love to read your responses each day. Keep them comin’.
Question for the day: “Does this wheelchair make my butt look big”?
Awesome ain’t easy….but it ain’t impossible either. Be Awesome!
Have a great day! I am.
I can’t breath on my own. I haven’t been able too since June of 2013. My diaphragm has been rendered non-functioning by ALS. I am kept alive with the use of a ventilator 24/7. Yet my insurer insists it isn’t necessary !
Who are these people?
I don’t have the words to express my thankfulness to those that have given their hard earned dollars to our Team. We are a few weeks out from the Walk to Cure ALS, and we have raised just shy of $6000. How awesome is that. I can’t say that I’m surprised, because I know the quality of the players.
I was thinking, what if it is one of these $6000 that pays for the research that leads to the absolute cure for ALS! Who knows? It could happen. And when it does happen, wheel me up to the end of the line, because I want to be the last one to receive it. The last ever. So no one ever has to suffer from ALS again!
Much Love to all of my team members.
Remember, it takes an army…. and a bank.
When life gives you lemons… don’t squeeze that shit in your eyes!
Add some Vodka or Tequila and ice and make somethin’ useful