It has been awhile since I’ve written about anything in my recent life experiences. First off, if you are reading this thank you . It is just a culmination of my experiences in the world since I received my terminal diagnosis. I recently lost my arm and hand movements, I’ve earned the title quadriplegic.
I have been dreading this moment since my initial diagnosis. Told myself I would not want to live like that. Can you imagine, paralyzed and unable to talk, hell no I’m not going through that shit. This was the polarizing moment where I had to make a decision. And I didn’t make a decision, but I pointed mentally towards i will just let the disease take its course.
As time went on I began getting my affairs in order and working a lot to keep my mind busy. I saw the movies Gleason and Augie, and I saw that it was not all doom and gloom, these guys are living. I said to myself I can do that, but then I learned that insurance doesn’t cover caregiving and I would be paying six figures a year to have the required care. Holy shit, just another huge burden.
Today I am living with ALS. Yeah it’s fucking hard, I have some horrible experiences that pushed me to the edge. But here I am, and I am happy with my life.
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!
Following our May road trip, we thought we became good travel experts with a late stage ALS patient. We learned how to pack and how much, and we all agreed that two night Minimum stays vs over night stops is mandatory. It was too much of a rush. At the end of that trip Tracy asked where next? I said let’s do the Pacific Northwest!
So about a month later we had an itinerary and a plan. This trip would be different from Yellowstone because we would be visiting family and friends at each stop.
Spoiler alert:we overpacked and had two overnight stops. Lol it's like we forgot the last trip.
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.
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.
Day 12 Fresno - I wanted Tracy to try the tri tip from the dog house grill, so that’s where we had lunch. Afterwards we went back to the hotel to rest awhile. Later in the evening we went to visit friends and family at Joe and Wendy’s house . It was so amazing visiting , I love and miss my Fresno family.
Day 13 Fresno to OC - Before we left we went back to my aunt's house to visit with her and my brother. I was exhausted and ready to go home. Tracy and Leigh were probably more tired but they were both troopers.
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.
Day 2 Vegas to Salt Lake City - Beautiful drive. I was pleasantly surprised to see the amount of new homes being built in Utah. The cities we passed through were nice and new. Once we arrived at the hotel we stayed up till 1 trying to get me to have a bowel movement. Not fun.
Day 3 Salt Lake City to Jackson Hole Wyoming - This was a beautiful drive through Idaho along the old Oregon trail. Amazing views, farming and cattle ranching. We saw plenty of deer, and other wildlife. This was my favorite travel day, and the girls got to eat at a burger joint in Soda Springs, Idaho. We drove along the famous snake river and arrived in Jackson Hole. We checked into our hotel, The Rustic Creek Inn which actually was a resort along a creek. Bitchen place to stay. Only problem was my ada room bed was on a platform and the hoyer wouldn’t go under the bed. We contacted the front desk to rectify the situation. It was too late, we would have to wait until the morning. Tracy and Adriana were able to get me in bed MacGyver style.
Day 4 Jackson Hole and Grand Tetons - Management found a bed and needed us to vacate a while so they could replace it. We spent the day exploring the resort, what a picturesque place this was. We visited a waterfowl and bird sanctuary and just kind of admired the natural beauty. Later in the afternoon we drove to see the Grand Teton mountain range. I learned the mountain range was named by french fur trappers. Tetons in French are breasts, so it was named because they resemble grand breasts, haha. Later in the evening while exploring off the beaten path we saw deer, caribou and a fox.
Day 5 Yellowstone National Park - This was the highlight of the trip. From beautiful forest and rivers, the geysers, the wildlife and the views in general were just incredible. Old faithful was cool, but my favorite stop was the Grand Prismatic Springs. I could write a lot about Yellowstone but I won’t. If you haven’t been, you must go.
Day 6 Jackson Hole to Denver - This was the longest travel day and was difficult for us. Tracy had bad news from home, the roads were bumpy and it was pitch black at night. It was just a day we all wanted to be over. We arrived at our hotel in downtown Denver around 11pm.
Day 7 Golden and Boulder - We slept in this day because we needed it. We had a Coors brewery tour at 2:30. The tour was interesting, but my favorite was after the tour in the bar lounge. We got Adriana drunk, her best words were i feel the floor moving haha. After we sobered up we drove to Boulder to hang with Kyle Fulmer in his natural playground Chautauqua park and the flatirons mountains. Such a beautiful site to walk the dogs, hiking etc. Kyle is a great friend and I am so happy we spent time together. We had a great dinner at one of his favorite eateries. We laughed, shared stories and reminisced on the past. Was a great day in Colorado.
Day 8 Denver to Albuquerque - Beautiful drive from Colorado south to New Mexico. Slowly you could see the greenery of Colorado turn into a desert landscape with trees and bushes. Again this was a long drive so we didn’t do anything exciting. We made it to the hotel and then went out for some authentic Mexican food. We ended up at a restaurant called El Paisa.
Day 9 Albuquerque to Sedona, AZ - This was a hot drive through the desert, which had its own beautiful landscape. We stopped at a Native American store to purchase a few Indian artifacts for Ashton. Drove up to the entrance of the petrified national forest but decided to skip as we were all excited for Sedona. We arrived in the early afternoon which gave us time to relax and pick a place for dinner. I wore my cowboy hat from Wyoming and we headed to the Cowboy club. The interesting appetizer of cactus fries sounded intriguing and they were very good. I also ate cedar planked salmon, which was very good . I had a jack and coke with my meal, because why not.
Day 10 Sedona - We had no agenda and just wanted to take it easy. We visited the chapel of the Holy cross and its incredible views. Then we explored the shops in Sedona, did a little souvenir and Indian jewelry shopping. And I had two different ice cream servings from ice cream shops. They claimed that their ice cream was all made on site. We ate dinner in our room and tried to get to sleep early. Oh and I forgot to mention, I had coffee on our patio. This was the first time in about two years I was up in my chair early to enjoy coffee outside. Pretty special moment for me.
Day 11 Sedona to Home - Our final day of travel. Tracy drove this entire trip. She was such a trooper and I am so thankful we found each other. The final drive home was filled with reflection on this incredible adventure. We were all exhausted and just wanted to be home in our beds. The incredible journey filled with adventure was complete.
Tracy and I grew very close to each other during this adventure. We instantly clicked when we first started talking, and it has since turned into a beautiful relationship. We will travel again soon, planning on the Pacific Northwest.
This trip seemed impossible for an ALS patient like me who required so much equipment. All it took was some planning and can do attitude. The trip was very challenging, but not impossible.
If you got a chance, take it, take it while you got a chance
If you got a dream, chase it, 'cause a dream won't chase you back
If you're gonna love somebody
Hold 'em as long and as strong and as close as you can
'Til you can't - Cody Johnson
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.
The hawk resembles ALS, and my zen garden is my life. My life was beautiful before ALS, and the hawk came without warning and attacked my zen garden leaving a mess of feathers and bird remains. All the birds left and were afraid to return to my garden. Some time went by, we filled the feeder up and eventually the birds come back. The plants continued to grow and my zen garden was full and beautiful again.
Just like my life, it is still beautiful after ALS. Keep providing the love for your friends and family (food for birds), take care of your plants and add decorations (care for your body and world around you) and you will see the beauty. Yes the hawk can drop in and screw things up, but he can’t take away the beauty of my zen garden. You just have to want to tend to your garden, and I am thankful for my family and care team who tend to me every day.
I really enjoyed the holidays this year. Watching my mom decorate nonstop was entertaining, how she stores all these decorations blows my mind. The family room turns into the Angel room, and the living room turns into the Santa room. Too many to count, but if it makes her happy then I’m happy.
Not talking this year has made me become very observant of people and my surroundings. Thanksgiving was just the family this year, and I got to listen to the family talk. It’s kind of nice not joining in the crazy conversations anymore, I just listen and smile. I ate some turkey, mashed potatoes and all the fixings. My taste buds are weird, I think because I can’t smell with the trache. I liked the mashed potatoes the best.
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 :
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...
"Today, I flew with my cousin Allie and Auntie Analise and we flew to San Francisco and we went to camp. We got there early so I played tether ball with the other kids that were there. We then had dinner and after dinner, we did shoutouts to everyone. We then went to a camp fire to roast marshmallows and had so much fun.
My family is so thankful for what these wonderful people do. I am so happy that Ashton is able to experience these camps. For more information on Hope Loves Company, to donate or to inquire on getting involved, go to www.hopelovescompany.org
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.