As i lay here in bed I feel so much gratitude to everyone that has been encouraging my journey with ALS. Your support emotionally, spiritually and financially has enabled me to cross the five year mark. I have helped Ashton grow into a 14 year old kid with a compassionate heart. I know now he is on the path to succeed as a human being, and I plan on sticking it out as long as i can. 2022 has been a good year. I was able to road trip to Yellowstone and Colorado, New Mexico and Arizona. This fall i was able to road trip up the California coast and into Oregon. Just recently Ashton attended a camp for children affected by ALS.

You have assisted me to live well with ALS. I want to share some of our videos from this year and I encourage you to read my blog.

​My blog https://www.teamshaunyboy.com/blog#/

And attached is an article from a magazine i was featured in.
2022 is a year i am so very grateful for. In the face of adversity, I'm living well.

I wish you and your families a Happy Thanksgiving.
No white flags baby!

Day 1 Orange County to Cambria - Again we had the van loaded. If we do this again, I need to buy a bigger van. The drive was nice and we got rain, Tracy and I hoped for fall weather on the trip but that was all we got. We arrived at our beautiful destination and the views from the house were amazing. There was an elevator so I Could reach the second floor. I don’t think you can beat Monday Night Football in this environment. Thank you Valovs for letting us stay at your home, simply incredible.

Day 2 - Cambria, San Simeon - We enjoyed coffee by the window and enjoyed the ocean view. In San Simeon we stopped to see the elephant seals.  Across PCH is the famous Hearst Castle, we didn’t go visit but we spent some time watching the zebras grazing. Had lunch at the Main Street Grill in town, and then had a visit from my Aunt Manya and Julie. Again marveled at the sunset and view, Cambria holds such a special place in my heart. So many family memories here.

Day 3 Cambria to San Francisco - We left the house and took the 101 to Santa Cruz and drove along the coast to SF. There were a few fields of pumpkins so we had to stop and get one :). Half moon bay was a beautiful area, hard to believe that the concrete jungle of SF was a few miles away, and here on the coast seemed so spacious between the villages and nature.
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Day 4 San Francisco and Sausalito - We met up with Tracy's sister who lives in sf. I’ve never stopped for a photo at the golden gate bridge so we did that. Had lunch at a brewery in Sausalito, I enjoyed my beer and french fries. Later in the day we had dinner by oracle park, and really enjoyed our company.

Day 5 San Francisco to Eureka - This stretch of 101 was amazing. Coastal Redwoods, Paul Bunya, Bigfoot and unbelievable views. We made it to Eureka, and had dinner with my friend Michelle who moved here. We have been friends since kindergarten, and we never miss a beat when we hang out.

Day 6 Eureka to Azalea Oregon - This part of America is really beautiful. Trees everywhere! On this leg of the trip I began getting sick and knew I needed rest. The original plan was two days at the Cobos Ranch in Azalea, and then two nights in Bandon, Oregon. But we decided to stay 4 days at the Cobos Ranch

Day 7, 8, 9 The Cobos Ranch and Azalea - Tracy and Leigh were in heaven here. From the mountain in the back of the property, along with a stream that had salmon running through it, the ranch was a beautiful setup. There were 4 ranch dogs, 3 horses,24 chickens, wild turkeys and elk. There were plenty of animals to keep the girls happy. Sunday I stayed in the house and watched football in between naps. We really enjoyed our time here, and we were very appreciative of the Cobos opening their house to us. It was an incredible experience enjoying coffee under the mountain which I named Coffee Mountain, visiting the antique store with the barbershop inside. The general store used to be a hotel and the post office, everything here was restored beautifully. Of course they had Umpqua ice cream for sale by the scoop. Southern Oregon was beautiful, I was pleasantly surprised with everything ive seen.

Day 10 Oregon to Redding - This was our stop to rest and break up the monotony of driving. Coming down the 5 freeway was o different than the 101 through Eureka. We did stop at the city of Weed, which was a cool experience. Sidenote: There was no weed there. At our hotel they had a bar inside called the three shastas with live music. Of course I cut the rug on the dance floor.

Day 11 Redding to Fresno - Welcome to the central valley, not much to see. After we arrived in fresno, we went to visit my brother and Aunt Natalie. The girls got to eat, and I enjoyed some blue mountains.

This was a wonderfully perfect trip. Yes we argued and got upset with each other sometimes, but it was all worth it. Traveling for me is so much work and it all falls on Tracy and the caregiver.  It is still possible to roadtrip with a single van , but it would be much easier with a sprinter van or another car following us to help with luggage. Tracy, I wouldn’t want to roadtrip with anyone but you. I love you.

First let me preface this journey with it being something I have been thinking about during the pandemic. I just never had all the pieces to make it a reality.  Fast forward to March of this year, I created a bumble account (dating site) to find someone to connect with and I matched with the lovely Tracy. She seemed very adventurous and I told her I had this wish trip to Yellowstone. She surprised me by saying let’s go, it will be a great time . And the planning began, I was the CEO with the vision, she was COO for the trip. I recruited one of my caregivers to the trip and we had a plan.

Day 1 Orange County to Las Vegas -  We had the van packed with so much stuff it was ridiculous. We had an uneventful drive to Vegas, arrived at the Wynn around 3 and checked in to the ada room that has a ceiling lift installed. We gambled, drank cocktails, ate dinner at Red and stayed up till 1 or 2. Typical Vegas stuff.

Lately I have been thinking about my online interactions, mainly my posts that show me out and about enjoying life. Well I am enjoying life, but there are two sides to every coin. My life is definitely not rainbows, unicorns and sunshine all day. Hear me out…
 
I enjoy sharing my life journey with whoever will listen. Positive affirmation from family and loved ones, friends and people who I have never met invigorates me. It is fuel to keep my fire burning, and that is one reason I share so openly. Another reason is to show others struggling with life that you can overcome your troubles, you just need a positive attitude and mental fortitude to solve problems with grace.
 
My world is a Rollercoaster each day, the highs are amazing and the lows are dark. I struggle to keep going sometimes because I know the lows are coming nonstop, and it sucks. Writing these thoughts leaves me so vulnerable, but admitting my vulnerability publicly strengthens me in an odd way.
 
I will be the first to say don’t worry so much, things will work out the way God intended them to. But I worry everyday about so many things that it is driving me crazy. Life is becoming so difficult, and many times I find myself thinking how in the hell can I keep going on like this. Then I think of my son, my parents and family, my loved ones and friends. I want to be alive, to help my son grow, to enjoy and participate in my family doings. To love and be kind, and hopefully leave a positive impact on every human I have encountered.
 
I think what I am trying to say is I enjoy sharing life with you all. It is definitely different than I imagined, and very difficult. But it’s still awesome.

​When I moved back in with my parents as ALS took away my independence, I found myself constantly looking out my bedroom window. The view is where as a kid I used to help my parents with our vegetable garden. I remember digging troughs for water, planting squash, cucumbers, tomatoes and eggplants. Great memories as a kid back there. I thought to myself, it would be really cool to set up a bird feeder there. I told my parents and they agreed, and so began the creation of our zen garden.
 
First step was obviously getting the bird feeder. Mom and dad picked one along with the pole and set it up where I could see in bed. My window had these wooden shutters that made it hard to see out, so I called my buddy Mike to set me up with automatic blinds I could control with my phone. Next mom went to town with succulents and some plants. We added a bird bath, signs and more decorations and I ordered a huge wind chime for ambience. Then I got weird. I was browsing amazon and came across lighted garden gnomes. I started with two, now I have nine haha.
 
Everyday I would wake up and watch the birds eat, they are crazy and eat a lot. Doves, sparrows, finches, bluejays just to name a few. Two squirrels visit daily, I named them Doc and Virgil. I set up cameras so I could watch more closely, and at night we saw opossums, rats and a cat come through. My zen garden was teeming with life, and growing while changing daily. Until one overcast morning, a hawk staked out on the wall watching my happy world of birds. He didn’t care that I enjoyed my zen garden daily, he was there for an easy meal and was going to mess up my day. So he waited and attacked a sparrow, and literally ate him in my zen garden.

Christmas shopping was easy this year, I got all the adults shoes. The kids got cash to do whatever they want, and I made photo books for my family from Google photos. Totally awesome gifts, they all got teary eyed. Ashton made a list of things he wanted, I picked airpods and let his mom buy the rest. Watching everyone together opening presents made me so happy. Just seeing the joy on everyone’s face made me smile.
 
Christmas eve we had our traditional open house gathering with all the neighbors. Appetizers, sandwiches and lots of booze. Again, I enjoyed listening to everyone’s conversation and jumped in when I had the opportunity. I maybe had half a glass of wine, and just ate some fruit. I stayed up late, maybe till 10:30 in the chair that night just because everyone was having so much fun. The caregivers had the night off so my siblings and mom put me to bed.
 
For whatever reason this year was my favorite i can recall. Just having everyone together, happy and not arguing constantly is honestly the best. Sitting by the fire, football on tv, the family all hanging out and the dogs playing together while presents were opened really did it for me. I was truly happy. I love this life, it’s worth fighting for. 
 
Merry Christmas and happy new years to everyone!   

One thing I absolutely love to do is go out somewhere, whether it be a restaurant, movies, shopping or the beach. But for an ALS patient who is dependent on a ventilator things can be tricky. Let me tell you about what I require when I go somewhere.
 
First and most important i need someone who is trained to suction and provide cough assist for me at a minimum. I need a suction machine, and cough assist machine and obviously a ventilator. I have a new type of ventilator called a VOCSN which has suction and cough assist built in making it easier for the caregivers, less shit to carry around. Then I have my travel backpack which has a ton of stuff. I will list just the important stuff :

• Spare trache and spare mic-key g tube if either fail or fall out
• Suction tubing and mouth yaunkeur
• Nebulizer kit
• Ambu-bag to keep me alive if my ventilator fails
• Urinal and wet wipes

My ventilator has a battery life of around six hours, but I have it hooked to my powerchair batteries so it’s constantly changing. I also have a spare battery set for the vent if needed.
 
You also need a specialized vehicle that will accommodate my chair. I have a dodge caravan with a $20,000+ conversion kit to fit my extremely tall self. Ridiculous right? They chop the floor and drop it enough to fit my giant self, install a motorized ramp and add a body kit so it still looks cool. When inside my chair is strapped to the floor so I don’t bounce around like a pinball. Then wherever we go pray there is handicapped parking that has space for my ramp to deploy.
 
I also take a 60000mah powerbank that will keep my eyegaze computer charged, and power my electric blanket if it’s cold. 
 
I  think that’s all I need. I have ramps in the van too if we need. Sounds like alot right? Well it is, and I always travel with two people, caregiver in the back in case something happens while we are driving. 
 
It’s all worth it, I just want to keep living! It’s much easier having visitors at my house. Seeing friends and family absolutely brightens my day. If you have reservations about visiting me, throw them out. Come have a beer or glass of wine with me, please!

Two weekends ago, Ashton got to attend Hope Loves Company's camp up in northern California, specifically Boulder Creek. Jodi O’Donnell Ames started this nonprofit after she lost her husband to ALS. She saw firsthand the impact ALS had on their children and wanted to create something that specifically supports all children affected by ALS. Her idea has grown into a wonderful nonprofit providing an outlet for the kids.
 
They put on annual camps around the nation that are the most beneficial to Ashton. I asked him to journal this time about his experience, below is his summary and thoughts...

I have 8 Alexas spread throughout the house and I am able to call for help or tell Ashton to come hang with dad. Technology is truly amazing, I can’t imagine how difficult it must have been for disabled folks before technology. From my bed using my eye gaze pc i am able to control my tv, my adjustable bed, my window shades, my lights and my ceiling fan speed. I never bothered with converting our ac thermostat because I figured that would be a constant struggle between my parents and I haha. A well known human with ALS Steve Gleason said, until there is a cure technology can be the cure. He is right.
 
Anyways, one of my favorite times of day is bedtime. Sitting in my power chair all day can become uncomfortable, and lack of mobility makes it difficult to pass gas. When I get transferred to bed in the hoyer I always let one rip, my caregivers love it and we always laugh. Once I’m situated comfortably she will start the massage on my feet and legs. This is the time I will call Ashton via alexa to come hang out. We will either watch tv, YouTube videos, read something on the Internet or just talk. Tonight we read some of my writing, and I suggested he write an entry. He said heck yeah, so stay tuned for that.
 
Moments like these are what fuel me to keep fighting. 
 
Around 9:30 he goes back to his room to watch his own tv before his 10:00 pm bedtime. My caregiver and I sometimes chat, sometimes watch tv together or just enjoy comfortable silence. She will stay with me making sure I’m comfortable and my lungs are clear of mucus. It’s beginning to get cold, so I have switched to my electric blanket. I love the cold air and a warm blanket!  At 11pm she leaves, I turn on a funny movie or documentary on the tv. I always have the tv on when I sleep, white noise i think they call it. Mom will come in and kiss my forehead wishing me good night.
 
Life is difficult for everyone, including myself. Difficult, but not impossible. The juice is worth the squeeze. Don’t give up, find your love for life. I have.

​Someone asked me to write about my typical day, I thought about it and decided to do so with a little twist. I will detail a typical day, but include my thoughts and challenges I experience.
 
My day starts between 1am - 5pm when I wake up needing suction of mucus from my trach. I push my call alarm that shrieks, waking up Wyatt and my mom. This can occur 1-5 times during the night, which sucks for my mom. In the near future I will hire a night nurse so mom can sleep better. I then use an eye gaze computer in bed until I sleep. I usually doze in and out, I also have wild dreams during this period. Fun fact: in my dreams I always have ALS but I am walking and physically unaffected.
 
At 8am my morning caregiver arrives and we start with my morning meds and supplements. It all gets mixed together and given to me through my feeding tube. Next step is Wyatt's favorite, she takes him for a walk and he pees on every bush, literally. If he poops he gets a treat. When they come back, I will do range of motion exercises and stretching. I still can enjoy coffee by mouth, so half a cup goes in by mouth and then the other half goes in the g tube. We then wait for my stomach to say “ I’m ready to poop.” When this exciting time comes we use the hoyer lift to transfer me to commode. If I have a good poop I am happy for the day, small or no poop I am usually irritable for the day. When I’m done and cleaned I get transferred back to bed. 
 
Once situated in bed I will need cough therapy and heavy suctioning to clear the mucus from the evening. I get my teeth brushed, face washed and my skin products applied. I normally let the caregivers choose my clothes and socks, it's fun because I never know what they will choose. Before I get dressed they will clean my g tube and tracheostomy sites, apply a skin barrier cream and put new gauze bandages. Then i get dressed, transferred to my powerchair, ears and nose cleaned and my hair combed. After all this activity i get my pc set up on my chair and I finally can relax. By the way it’s probably 11:30am.
 
At noon I take medicine for neuropathy and muscle spasms, and depending how I feel I may take anxiety meds. I eat lunch at 12:30, sometimes real foods by mouth or prepared formula food through my g tube. Always a crapshoot of how I’m feeling at this time, but typically I will go for a walk outside with wyatt and say hello to neighbors. I take Lexapro daily at 1pm and then my caregiver goes home right after 1pm.
 
From 1pm on I will listen to podcasts, audiobooks, read articles on the Internet, emails, texts etc. I try to get a nap in, and not bother mom too much. It’s basically free time to go or do whatever we need to do. At 6pm the night caregiver arrives. She will prepare my night meds and overnight feeding. I try to eat something by mouth between 6:30-7:00. Then I just hang around with my family, watch sports until after 8pm when I get tired. Then when I’m ready for bed, we start the night time routine.
 
Using the hoyer lift i get transferred to bed, will do cough therapy and heavy suctioning and try to get me comfortable in bed. I am weird, I feel all the wrinkles so my shirt, boxers and sheets have to be tight and perfect. My favorite time of day is next, foot and hand massage. We use a cbd cream for pain and relaxation. It really does help relax me, and reduce the pain in my extremities. I will receive night meds around 9pm, and watch movies until I fall asleep. Around 10pm I have skin products applied to my face, and get my cbd tincture with melatonin, and my Papa & Barkley cbd/thc tincture. I usually stay awake until at least 11pm so I don’t wake up too early.
 
So that’s the outline of a normal day. I have daily caregivers from 8am to 1pm, and 6pm to 11pm. We adjust the routines as needed for doctors visit, going to other appointments etc. My days are very routine, and that’s the way I like it. Visitors always brighten my day, so make plans to visit me :).