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 :).
When I was diagnosed, communication about my future with friends and family was difficult. Of course we cried, got angry, asked every crazy question you could think of, and researched different treatments. We eventually determined we would walk this path together, and adjust life as needed. It all sounded acceptable to me, and 4 years later we are still walking this path together.
I want to talk about managing relationships. Everything has changed physically, emotionally and mentally. If I was upset, I could go for a drive, a run, go outside for a cigarette and beer or just walk alone. Now I just sit in my chair unable to do any of those things, heck I can’t even yell. If I wanted to show love, a kiss, hug, or well you know, I would do it. Now I just use my eyes and smile, which is fine but it’s obviously not the same. So the way I manage my relationships with other humans had to change drastically from my life pre ALS.
I’m not going to lie, I have turned into an asshole and now I do my best to not be one. I communicate only through my eye gaze computer, which is much slower than talking. Somewhere between 15 - 25 words per minute. I can’t participate in group conversations, even a one on one conversation is tough. And sometimes people don’t even let me finish my sentences. All of these challenges are so taxing on any person in a similar situation, and there is really no way to prepare yourself. You just learn and adapt as you go.
What I don’t want to happen is for myself to slip into isolation, where I can’t experience these emotions. So I have to learn different ways to express myself, and it’s quite a challenge. I truly feel that love is the greatest gift that God gave us. Love for your family, your friends, your significant other and ultimately yourself. Without love, I don’t see life being purposeful.
I guess my main thought here is, I want to be a better person. I will work on being a better human daily. I will become a better human. If I have caused you harm or agony, I apologize. I love you all.
Been a while since I’ve written, I've been depressed and stressed recently and it caused me to lose motivation to write. Tonight I decided to pull my shit together and write about something, anything. So here we go, a summary of my last five months.
Right out of the hospital I was dealing with a blood infection that required a two week course of antibiotics, and the antibiotics caused havoc in me. Tore up my stomach and caused diarrhea, on top of getting used to tracheostomy this period was so difficult for mom and I. Some days I didn’t get out of bed and just kept myself sedated. I asked myself every day, what in the hell did I get myself into? Needless to say, I went into a very dark place. A place I never have been and never want to go back to.
In June we went to Dodgers stadium for Lou Gehrig day with my mom, her first time ever. I was so happy for her. The next day we went to angel stadium and was honored to be a part of this special day for all people living with ALS.
In July we went to the movies a few times, and I was finally getting used to my new normal of life with a trache. My birthday was in August and what a special week that was. I had been scared to eat or drink anything since surgery, and I figured why not try on my 40th. Pasta, meat sauce, salad and wine. I was elated to taste again :). My friends and family threw a kickass surprise 40th for me, what a special day that was.
Lately I have been very involved in fantasy sports, watching and researching all the statistics. I find that if you don’t keep your mind constantly busy, you will think about ALS and that can lead to bad thoughts. I also started meditation daily, it helps calm the mind. I can honestly say I am very happy with my life right now, and am glad I decided to have tracheostomy surgery. My body barely functions anymore and it’s getting scary thinking of the future, but I have an awesome care team so I don’t worry about it too much.
My favorite meal is chopped cucumbers, tomatoes, croutons and Italian dressing. Weird right? Not to this guy, smiling from ear to ear! Life is beautiful. I will get back to writing again, I enjoy jotting my thoughts :).
Fatherhood is a tough, but rewarding job. Men are tasked with guiding their children to be productive humans in society. Absent fathers will force the child to lean on another human they are close to such as the mother, siblings, grandparents or someone outside the family for fatherly guidance. The risks to children growing up without a father vs with a father are seemingly obvious, but there are always exceptions. I am not going to venture down the path of discussing the risks, rather I will focus on my personal experience.
When Ashton was born, I was so happy he was healthy. I knew that was the first challenge we would face that none of us had control over, only God. As the years went by, Ashton would face many challenges, and most of them I wanted him to figure out on his own. I believe in establishing a foundation of good vs bad in him, and allowing him to make his own decisions. Afterwards we can discuss his decision, and he can apply what he learned to his next challenge.
As a father living with a terminal disease, this philosophy of mine became ever more important. One day, much sooner than expected, Ashton will be without a father. That really sucks for him, because I always had my father who I could rely on for help or advice. So how do we move forward with our father -son relationship, knowing it won’t be what we expected? The answer is not so clear, but we choose to continue building on our foundation we started when he was little.
It’s hard not being able to participate in physical activities together. I miss playing catch, riding bikes, swimming etc. But even though we can’t do these things together, we still are father and son, and I still have the responsibility of raising a productive man. I struggle accepting this reality mentally, but I try every day to be the best father I can be. I can still solidify his foundation, and ultimately he will have a more difficult path than I had in my early adult years. My hope is that through these challenges we face together, and the challenges he faces on his own will result in Ashton being resilient, compassionate, intelligent and more successful than I could have imagined.
It is through adversity that successful humans are molded, and Ashton and I have certainly faced adversity in the last five years. I feel confident that I am still molding my son for the world, and for that I am thankful. Although life is different, it still is pretty awesome!
In the ALS community we refer to a person with als as PALS, and the caregiver of the person with als as CALS. Most of the time people in the public are focused on the pals, hearing their story and the courageous fight. While the pals do have a tough battle, I think the immediate family who have become caregivers have it the hardest.
Take my family for example, my parents are in their 60s expected to retire and relax after 40+ years of work. Mom didn’t sign up to be a primary caregiver for her 39 year old son. Dad didn’t sign up to watch his eldest child become more paralyzed day by day, knowing there is not a thing he could do. Same with my brothers and sister, I mean I can’t imagine how helpless they feel watching my physical decline. And my son Ashton, my nephews and niece Billy, Casey and Allie. What do they think? I’ve tried to show them this is what it means to never give up, never lose hope. And my lifelong friends, it must be so hard to see your friend in this physical shape. A lot of them will and have turned a blind eye, and I really don’t blame them. This is a horrible thing to be involved in.
As the pals, yes life is hard and full of adversity but my adversity is no more difficult than my family and friends. ALS hasn’t changed just my life, it’s changed a lot of people’s lives around me. As long as I can see their smiling faces, I will never quit in the face of adversity.
My family’s love is beautiful, I am fortunate to feel it every day.
CALS are the real heroes, they inspire me.
Wow, what an eventful two weeks. Woke up early May 5th, had two caregivers to be sure we didn’t miss anything and then mom and I drove to USC for my surgery. Surgery went fine, I woke up nauseous and a little freaked out. I couldn't breathe or talk through my mouth. I’ll be honest, two weeks later it still does, but everyday becomes less weird and more normal.
I encountered a few trials and tribulations on this journey:
While in the hospital I developed a urinary tract infection, and another blood infection. UTI is simple, pop a few antibiotics and it will clear up. The blood infection is similar, but since I have a port catheter, it became compromised, so I will go under surgery again to remove it from my chest.
The good news:
And most importantly I am still alive to do my best keeping Ashton in line.
My name is Leila Darki. I am a co- director of ALS Center of Excellence at USC.
I see every day how ALS affects those I care for and their dedication, love, and good spirits inspire me. I have learned a lot from my ALS patients and their families through this unrelenting journey.
I came to know Shaun when he saw me for left foot weakness in the summer of 2017. I wish I met Shaun and his mother under different circumstances, however, I am grateful to have the opportunity to be his neurologist.
Shaun is strong, brave, and full of love. He has chosen to have a tracheostomy so that he could live to watch Ashton, his son, grow up. I met Ashton only once, but being a parent, I can feel the strong bond between him and Shaun. Ashton is a kind and caring boy.
Shaun’s mom rose to the challenge. Despite, the devastating news, she handled all arrangements immediately. She has provided constant care and emotional support, while also simultaneously accompanying him all his appointments.
Shaun and his loved ones have truly taught me how to enjoy life purposefully and to cherish every moment with the people around you. I have learned to be proactive and to not put my life on hold.
May is ALS awareness month, which is a chance for us all to come together to advocate for ALS patients and their families. Our ALS team at USC is dedicated to providing only the highest quality care to ALS patients and their caregivers. We are devoted to this cause and will not relent until there is a cure.
Nobody said it better than Justin Timberlake. Now each time May rolls around I always play NSYNC - It’s gonna be me.
Know what else May is? ALS awareness month. There are plenty of ways you can help our cause.
Now I know it might be cliché, oh another month with a special cause. Well yeah, it is. But you know what, myself and 30,000+ Americans will have our lives cut short because of ALS. Through no fault of our own, we just hit the wrong lottery and we appreciate those who use their voices when we can’t.
I am fighting like hell to save my life, will you help?
I will buy you a beer, cheers!
This will serve as my first official blog entry, ever. I have never been a writer so I think this will be a way for me to grow, as well as journaling my thoughts and emotions.
ALS has drastically changed me from a walking, talking , handsome father of Ashton into a nearly paralyzed ventilator dependent handsome father of Ashton. In 2017 when I was diagnosed, I realized I had symptoms back in 2015 of constant muscle twitching but never thought anything of it. July of 2015 I suffered a comminuted calcaneal fracture, also can be described as I did something stupid and shattered my heel. I believe this event triggered the stress that led me down the path of life with ALS. Yes, I have ALS, but ALS doesn’t have me.
This journey has definitely changed me emotionally, spiritually and functionally. I guess I came to realize that life is beautiful if you choose it. Family, friends and love are what fuels my fire today. That’s what I choose, and I will fight like hell to enjoy the beautiful called life.
The pandemic really screwed up my desire to travel before my functional decline rendered travel difficult. As I’ve been stuck at home, I learned to find entertaining ways to keep my mind occupied, as I feel that inner growth will be a driving factor for my fire.
Today I am thankful for my family, friends and my caregivers. Seven days per week, from 8am to1pm and 6pm to 11pm my caregivers enable me to functionally live, and alleviate the stress from my mom. During the hours of 1pm -6pm I am busy on my eye gaze computer discovering new knowledge and communicating with friends. Mom has caregiving duty during this time, and I am fortunate she still loves me because I probably drive her nuts! Every morning around 5am I wake up and hit the call button that summons mom to my room. Sometimes I need water, sometimes I have to pee, sometimes I have mucus, and sometimes I have anxiety over breathing difficulties and I don’t want to be alone. Whatever the reason is, she always comes to my rescue. I am just very thankful for everyone’s help. My siblings keep Ashton in check where I am unable. My dad for being a great grandpa to his grandkids. Friends that check in on me really makes me smile.
The next chapter is beginning, tracheostomy time. May 5th will now be Cinco de Tracheo surgery at USC. I am scared and excited at the same time. Scared of life without speaking from my mouth, and scared of the financial burden I am about to incur. Life with a trache for me will probably require more caregiving hours, and more stress to my family. I am excited to be able to breathe easier, and clear mucus from my lungs without choking on mucus plugs.
I am just excited to live!