This ALS Awareness Month, 

get to know the REAL ALS

ALS Awareness Day 23: Wick Griffin

Hi, my name is Scott Griffin; but, my friends call me Wick Griffin. Wick was my father's nickname and, while in high school, my friends began calling me Wick as well. It's just stuck since then. 

I am 53 and was diagnosed August 2014. I am an only child. My dad passed away in 2013 to Parkinson's and my mom in 2015 to complications from COPD and Congestive Heart Failure. My wife and I have no children. We do, however, have a 24-year-old niece and a 20-year-old nephew. They are my wife's pride and joy. She tends to spoil them. I have always been a workaholic; but, fortunately, my wife and I did travel a good bit prior to my diagnosis.

Moving forward...

I started noticing some twitching in my left arm and my left thumb moved involuntary. I did not give it a lot of thought at first due to my father's illness; but, did go see my family doctor. He tested my reflexes and I was extremely hyper with reflex on left side. I thought at first that I may be developing Parkinson's like my father. I did get evaluated by my father's neurologist and he found nothing to be out of normal. That was in 2011 and 2012.  I just continued with life; but, continued to feel as if something was not right; but, the doctors said it was nothing other than spastic nerves and non-essential tremors. 

A pivotal point came Oct of 2013, my wife bought a sofa table and I fell to my knees twice while attempting to carry it up the steps into our home. The table was very light, and I told my wife something is wrong. I noticed I could not run, jump, stand on my heels or stand on my tip toes. I went back to my family doctor around January of 2014. He referred me to another neurologist whom began to do testing and blood work. He told me in May 2014 that he suspected that it may be ALS after administering an EMG. 

He recommended I go to a specific ALS clinic for further evaluation; however, there was no appointment available for months. My wife took it upon herself and contacted another doctor to secure me an appointment. I was evaluated, and he diagnosed me with ALS in August 2014. The most devastating words were not ALS; but, their telling me I had 2 to 5 years to live. My wife and I cried all the way home. We decided to seek a second opinion and he confirmed the diagnosis of ALS and I have been going to clinic every three months since.

I am extremely thankful that mine has been slow progression thus far. I have my right foot drop and my left foot is week. I wear AFOs to walk some outside; but, I can only go maybe 150 yards and must sit down. My arms get tired; but, still using them with good strength. I use a Trilogy breathing machine at night. I had sleep apnea prior to the onset of ALS and went from a c pap to the Trilogy after diagnosis. 

My eating and swallowing remains okay, but I do feel some tightness in my throat. I am still driving and even went to Atlanta, GA to a golf event fundraiser for a friend with ALS. I drove the whole way there which is about 5 hrs. We have a Toyota van which was modified for my wheelchair. I use the wheelchair for it for distance walking or if I know I'll have to stand for any period. 

I have been very blessed by God in my journey. No, I can't do as I used too; but, I try to keep moving. My wife sometimes says she sees my bad side and everyone else gets my good side. She knows, though, that I love her, and we are a team, which is why I share those things with her. I am a social butterfly and love talking/meeting new folks. 

This is how things have been so far. I do sleep a lot during the day at home by myself. My wife is still working. She plans on retiring next year if I can continue to function as I am now. Things are beginning to change slowly.

In closing, I am not sure what contributed to my onset; however, when I was in high school, I did sustain a traumatic brain injury from an auto accident. I also suffered another blow the head after falling from a ladder in 1997.

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ALS Awareness Day 19: Audrey LeClair

Coaching Third Base to ALS

ALS…the acronym that has changed my life permanently.  I was seven years old when ALS first crept into my family and began to wreak its havoc.  At seven years old, I watched my dad begin the battle for his life, and at twelve years old, I watched it end.  My dad, Keith LeClair, was a collegiate baseball coach at Western Carolina University and East Carolina University.  He was a healthy, young, accomplished man and had so much ahead of him.  In the spring of 2001, ECU lost its super regional game and their chance to go to Omaha for the College World Series.  With his team huddled around, my dad said something along the lines of, “Men if losing this game is the worst thing that happens to you in your life, you’re going to have a good life.”  Within the next few months, he was diagnosed with ALS. 

ALS drastically changes lives, not just for patients, but for families as well.  Families have to accommodate for wheelchairs, eye-gaze computers, suction machines, ventilators, and the list goes on and on.  But, this is just the surface.  Growing up with a dad who had ALS, I could not go to daddy/daughter dances, in college, I missed out on father/daughter tailgates, and one day in the future, I will not have my dad to walk me down the aisle at my wedding.  I did not have my dad at my senior prom, my high school graduation, my first day of college, or my college graduation.  ALS has taken my dad, my Grammy, and my Aunt Sharlene.  It has taken happiness and a lifetime of memories.  But, while ALS has taken these things from me, it has also given me things.  It has given me a “why” in life, a heart to serve others, and it gave me 12 years with an amazing man I got to call dad and hero. 

While it is easy to focus on the negative aspects of what ALS does, I do believe that beauty can be found within the devastation.

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Day 17 on Day 18: Tests

I'm sitting here and it's early in the morning (day 17), haven't slept, and the stress is building. There is sweat pouring down my palms and my heart is racing. Today I screen for a clinical trial. Will I meet criteria, will I get through it, and will I be accepted?

My wife brought up a very insightful question the night before at the hotel and I spent a good part of the night thinking about it. She asked me “what other tests I've had in my life that were this important?”. We went through times like the SATs, your first driving test, and final college exams. None of it matched the stress I have right now or the importance of this.

So, I thought about my situation. I'm literally waiting to see if I qualify at a chance at life. I'm not sure tests and ALS can be related to by most. There is no “test” that can diagnose ALS, there is no test to see your possible longevity, and there is no test to know how longer you will be functional.

With trials though are tests for to risk your life for a cure. The truth is I and other PALS will likely die. We all have hope of a miracle but right now the prognosis is death. So here we sit waiting to breath into a tube, give some blood, and wait. Right now, I am dying but we are holding onto hope that one test, one drug, and one miracle will go our way.

So here we sit in 2018. Cars drive themselves, we can land rockets on a pad in the ocean, and people are testing for a chance at life. In most trials there is a 50% chance of getting drug vs placebo and 99% of ALS trials fail. There are only 3 approved medicines for ALS and none and proven to significantly extend life. Most trials are limited to a certain breathing capacity, within 2 years of onset (symptoms), and most patients will never qualify due to the lengthy diagnosis period and speed of the disease. If they do qualify they will likely get one shot at a trial. If they get in they have all given us a gift.

I had just never thought of how intense this is. In previous studies I was healthier, and the magnitude of the situation wasn't as clear. Now it's all I have to hold onto.

I want you to think about sitting in a room praying to God that your lungs function just enough that day, your blood work comes back ok, and IF all of that happens you might have a 50% chance of getting a drug that can save your life or join the other list of failed drugs. This is my life and others. There is no real treatment for ALS. We are the walking, rolling, and bedridden living dead.

We are test subjects holding onto hope. We are test subjects to hope that future generations never experience this disease. We are test subjects hoping our children don’t live through this trauma.

On a positive I listened to a wonderful research presentation yesterday from ALS TDI and AT-1501 will be making it to clinical trials. None of that would be possible without donations. Every dollar counts, and every bit of compassion gets us closer to a cure. This wasn’t made possible by one person but instead a community. This is change. This is hope. This is a positive result regards of the clinical results. This is one drug that was given a chance because of people like you who are reading this. You have the power to change the world and we are willing to risk our lives to change it with you.

So please take a moment to think and pray for the people who don’t have the chance to participate in a clinical trial. Take a moment to think and pray for the people who literally risk their lives for hope of a better future. Take a moment and thank the people who spend their lives researching and trying to take down this disease! Take a moment to think about having someone give you a drug that a human has never taken.

Being willing to risk your life for a sliver of hope is ALS. Waiting for a magical headline of a treatment is ALS. ALS is hoping, praying, and clawing through every day. ALS is relying on the kindness of others to push us to the finish line. 

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

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Day 16: Glynis Murray

The love of my life is gone. The Love for Life has passed. My best friend is died. My partner in life has left me. My heart is broken and will be empty for a long time. I have kept busy, but, life just feels blurry. The sadness comes and goes, like waves on the ocean. Some days are calm like a lake, while others are like huge swells in a violent storm.

And even though, Vince and I had been spending wonderful times together in the past, we had also been preparing for the next stage. We prepared for things, but one of his main concerns was for what I would be like after he was gone. So, we made a plan.

We purchased the travel trailer we had been talking about getting for us to go to Nascar events, fishing trips, vacations and retirement. Not that this one was the one we wanted, but, we bought the idea of what are future was supposed to be. And then we made more plans. we mapped out the next adventure that we wanted to take, knowing, that it would only be me and Dublin. But we planned. We mapped out places to visit, people to see and even places to re-visit. We had decided that I need to see a lot of beauty after so much sorrow and pain.

So, now I prepare for what this blog has been truly all about… Life After 

ALS: A Caregiver’s Journey.

The Hell On Earth Tour. First stop in Klamath, where we feel in love with fishing together. Then up to see my parents. No matter how old you get, your parents can help heal anything. And then the National Parks will take over the healing process. Olympic, Mt. Ranier, Cascades, Glacier, Yellowstone, Grand Tetons, Dinosaur, Arches, Canyonlands, Capital Reef, Bryce Canyon, Zion, Grand Canyon, Joshua Tree, Channel Islands, Sequoia, Kings Canyon and the mighty Yosemite! And other beautiful places in between. So, my journey has begun. And even though my sweet and wonderful husband is gone, he will always be a part of me and especially this new journey.

I miss holding you hand, but I know you are still holding me up. I love you Vince!

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Day 14: Rob Goldstein

It’s Never Ground Hog Day

Pretty much every day for the last decade I have spoken to someone recently diagnosed with ALS. Like, someone diagnosed that day, that week or that month usually. Sometimes I’m connected to them via email, other times over the phone or through and online forum at ALS.net or Patients Like Me (PLM). Heck, a couple of times through my personal Facebook page too. Many times, its face to face in a conference room at the ALS Therapy Development Institute in Cambridge, Mass.

So, I’ve talked to a couple thousand people with ALS. As you could guess, many times I get the same questions: what can I do to stop the disease? What about stem cells? Why does research take so long? Why did I get this f@#%ked up disease? Why me? Why now?

More often than not during that conversation I’m going to say something that that person hasn't heard before. Just as often I’m going to say something that is followed by tears, an audible gasp or the occasional slamming of a fist. Sometimes directed at me, sometimes at their family member or friend in the conversation with us. Sometimes just because this is ALS after all.

It’s been said way too much now that ALS is a complex disease that affects each person differently. I got to admit I too have been affected by ALS. Not in that I have it, but in that it has taught me to no matter how many times I get the same question to never ever treat it that way. To never get soft or lock up and hide from the emotion that a conversation about ALS causes me or the person I’m speaking to have. I’ve walked out of many of these meetings, especially those with people my age or younger, and gone for a walk outside, which is code for running around the back of the building and crying my eyes out.

It may be the umpteenth time I’ve explained the known reasons why we don't yet have cures for the stupid unfair disease. I may have explained why it takes so long to diagnose ALS or how to get into a clinical trial more than anyone else at ALS TDI ever has. It doesn't make it any easier. And turns out that’s a good thing. It shouldn’t ever be easier. ALS isn’t easy. Every person with ALS I speak with deserves an answer to their questions if I have one for them. Each of them deserves my full attention and the full attention of everyone else that claims to be on team End ALS.

Rob Goldstein of ALS TDI

(for those of you that don’t know what my reference to ground hog day is from, it’s from a 90s comedy about a weatherman who gets trapped in time on ground hog day in Pennsylvania. Here’s the trailer – enjoy!)

https://www.youtube.com/watch?v=tSVeDx9fk60&index=9&list=RDgpNjbSzVoQ4

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Day 10: A family

So today I was blessed to receive a new track lift for our home. This will allow me to get out of bed, get to the bathroom, and move more independently. This was an expensive item given to us by a pals widow.

We are family as members of this disease. We come together to find strength in the midst of a disease that robs you of it. We are one!

We are a family in need of support, care, and compassion. We are a family in hope of a cure. We are a family who needs to survive.

I've never met such strong people who still need the help of others. Be our strength, be our change, be our cure!

~Cory Burell

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Day 8: Larry Falivena

When Cory told me, he wanted to post some stories about the real side of ALS during ALS Awareness Month, I told him I was on board. However, after sitting down and thinking about it, I began to get self-conscious. The progression of the disease has been slow for me. I am still mobile, and my life is still fairly “normal". Most people would look at me and never know anything was wrong. The effects of ALS for me so far are nothing compared to many of those fighting this disease, and I started thinking my story may not reflect the “real” side of ALS. But the reality is that things will not get better than they are right now - although I'm still praying for that miracle!

I have met some amazing people in the ALS community since my diagnosis. People who face this horrible disease with hope, and strength, and an amazingly positive attitude. I've tried to follow their lead and keep a positive outlook. But there are bad days. Days when my thoughts are dark, and I let myself fall into the hole of negativity. It's at those times I reach out to God to lift me back up and get me going back in the right direction - and He always does.

So, what does the real side of ALS look like for me? There are the obvious things, like no longer being able to run, or play tennis or soccer with my boys, and there is the limp that I walk with now because my left leg has lost so much strength. For those of you who saw our pics from Costa Rica, there's one of me hiking with my new trekking poles. I wasn't using them just because they look cool, but because I needed them for what anyone else would have considered an easy hike to the waterfall or a walk down the beach. And that 5k I “ran" last month took me 55 minutes, 30 minutes longer than it would have a year and half ago. I'm happy that I'm still able to do these activities at all, but I know the day is coming when I won't even be able to walk.

The muscles in my body twitch constantly and cramp up on a regular basis. And since I've lost so much muscle in my shoulder and back, my left arm tries to slip out my shoulder socket when I reach too far for something. Even though the progression is slow, it is still a progression, and I am slowly seeing things that I used to take for granted slip away. Even as I describe all these physical effects of ALS, I'm thankful that I'm still in pretty good shape. As I said there are so many other PALS who would be happy to be at the stage I am now. So, I appreciate every day.

The mental aspect is a different story, and the bigger issue for me right now. The guilt I struggle with might be the hardest part - thinking about what I will be putting my family through as the disease progresses. Seeing Shana do things like carry the luggage up the stairs because I can't be hard to watch. And knowing that it's only going to get worse, that someday she will need to help me get dressed, and then help me get out of bed, feed me, and eventually do everything for me is when I have those darkest moments.

Being diagnosed with ALS means you to think about big things like: when are we going to have to sell the house because I won't be able to get to my bedroom on the second floor, and how much longer can I keep doing the job I am now because traveling will continue to get harder. And there are little things, like seeing my shirt size go from large to medium because I'm shrinking due to muscle loss, while at the same time feeling my pants getting tighter because I'm not exercising, and I'm supposed to keep my weight up, that remind me that I'm fighting a losing battle.

When people ask me how I'm doing, I make a point to start with something positive because I truly feel that a positive attitude is one of the best ways I can fight ALS. But the truth is I also don't want to ruin someone's day. I know it’s just my hang up, but I feel like I must show this brave face because people don't want to see the dark side. I know there are a lot of people in my life who care about me and want to help, but I still have a time accepting that help and caring. Thank you to everyone who has been there for me. I know I'll need your help soon enough.

This is the real side of ALS for me. This is the journey that I'm on, and I have accepted it. I know that God is with me and He has a plan. I ask Him every day to show me what He wants me to do with this time I have left. Being diagnosed with ALS has helped me to focus on what's important in life, and now I just don't want to waste any of it.

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Day 7: Equipment

Changes in ALS can happen very quickly. Most people don’t realize that you never know what’s coming the next day, week, or month. Equipment to make your life easier isn’t a click away. There are waiting periods up to a month for insurance approval, weeks to order, and up to months to manufacturer.

As hard as it is to adapt mentally it can take months to adapt physically leaving patients with periods with even harder lives.

I spent upwards of 6 months trying to get a custom manual chair in my hands. By the time I received it I could barely use it and needed a power chair. Until we can receive these items we are often stranded in our homes or put in dangerous situations during the last years or our lives.

The world doesn’t move fast enough for ALS.

Share with me a time that you had a medical need and couldn’t receive what you needed?

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Day 5: Linda Carter

The Journey I Never Saw Coming I fancied myself a “Wonder Woman”- raised 2 boys with the help of a very involved (thank goodness) husband - because these boys were the epitome of “tough”. But we got through it somehow. I turned to tennis for stress relief and my husband turned to golf. As a casual friend said “and Nari the two shall meet“ In other words - Giles and I weren’t very close. I also was one of the first at the gym at 4:45 am every day- always struggling to keep my body youthful. I rode a scooter around town - when not in my convertible Mini Cooper. Lots of material wealth- less spiritual contentment.

I thought a previous fundraising campaign was sort of fun -but didn’t take the time to care about what ALS was-I was about to find out!!! I began losing at tennis- oh my!! Just a “step behind “and why did I sometimes “slip” while running on the treadmill? Finally (but NOT finally) I began to drag my left leg- my friends said “go to doctor “. I said, “it’s nothing”. Wow- was I sooo wrong. I could list the many things I’ve had to give up- one by one. But I want you to “feel” the true losses as well as the gains. My boys grew up and we bought a beach condo, got a Goldendoodle and became much closer- ready to enjoy the fruits of hard labor. Within 3 years’ time - I can only transfer from lift chair to wheelchair. Severely fatigued to the point of rarely being out of pajamas. I feel like there is constantly something stuck in my throat which aside from being extremely irritating- means I soon will no longer be able to swallow. My speech is barely audible, and my butt hurts all the time from sitting. I’m only comfortable when asleep- which is extremely interrupted (every hour I must struggle to turn over- soon will need someone to turn me). My legs feel like heavy tree trunks and get numb sometimes. My sweet husband sits with me night after night watching tv because I haven’t been out at night in 2 years due to fatigue.

But the worst is that I cannot take my grandson to the park. He’s 2.5 and so very precious. I can’t be left alone with him. I can’t surprise him at daycare and take him home early. I can’t walk my precious dog. We sold our beach condo because I’m too tired to go. I can’t sit on the beach with my beautiful sister and enjoy God’s creation. My husband has all the responsibilities around our home. It breaks my heart to see him with so much on his shoulders at age 67. Now the blessings: wow- where to start... with God of course. My faith has increased exponentially to a level that makes me LONG for Heaven. I watch the birds outside my window (my husband keeps the feeders full). I now must refuse the friends that have made me feel completely loved (due to speech issues), I thank God for the little things- like toileting on my own. I truly SEE the suffering of others (but can’t help now-other than through encouragement).

I have so many regrets about not doing MORE for others. I realize my sins and have had the chance to repent. God has shown me grace through the eyes of family and friends- mostly through the eyes of a child who sees me as Mimi and not a crippled grandma. I have a wonderful husband that I never really knew before. My sister is devoted to me and people amaze me daily with kindness. There is nothing I LONG for- although my family and friends would do anything to make me happy (well... except let me have a kitten!!). I truly am content (well... except for not having a kitten!!!) The real cruelty of ALS is within the younger victims - who won’t know the joys of a grandchild. My advice is “slow your life down, pray and seek God daily, help others, and tell your loved ones daily how much they mean to you - be ready every day to leave this world.

Make your life one that God doesn’t NEED to correct. Thank you for letting me tell my story... it’s just a beginning... eternity awaits. but getting there via ALS is one of the worst roads to travel. Pray for a cure please.

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Day 4: Victoria Dunstone

I am so tired. So so tired.

The last night I had a full nights sleep was in August of 2015. I know that because it was the day before we officially moved from Northern California to San Diego. That was the last night I didn’t have to wake up to roll Duane or give him meds. The last night I didn’t have to wake up to check that he was breathing, adjust is pillows or help him to the bathroom.

My husband and best friend, Duane, was “officially” diagnosed with ALS in October 2013. We already knew… but I will never forget that day. I will never forget the words his doctor said, the look on Duane’s face, the feeling of defeat. He was 6’2”, 185 pounds, a fire captain, we water skied and fished everyday. We were healthy and active. How could this be happening?

At first we were lucky, his progression was slow but after tearing up his shoulder on a fire, and being forced to have surgery in June of 2014 the progression became rapid. He never used his right hand again. His speech had already started to go and very quickly it became indistinguishable to most. His balance was affected but he still refused a walker. Within 8 months he had had stitches in he head three times, broken his jaw, broken a toe and was completely unable to use his fingers and or hands.

In January of 2016 he finally agreed to a scooter and a manual wheelchair. He could barely talk and could no longer do anything alone. After a few major falls trying to get on our boat, where we lived, he agreed to move into a house where we could have a real shower, kitchen and could actually live easily. We still had an amazing life. I figured out how to get him into our ski boat alone, and onto our pontoon. I learned how to maneuver him from the toilet to the shower, dress him, feed him, and within in a few months manage his meds.

We started hospice in June 2016. Hospice is a the most amazing thing in the world. We had amazing nurses and care teams. They taught me how to manage meds, dose meds and care for Duane on this high level.

We fought a lot. I never did enough. I didn’t do it fast enough. I didn’t do it efficiently. I didn’t do it his way.

We had a lot of toys over the years and Duane took care of all of them. We kept our toys as he progressed, but they needed to be maintained so it fell to me. I am proud to say I can work on diesel engines, out board motors, inboard motors, wire anything that needs to be wired (that’s my specialty). change pumps in all kinds of boats, change a garbage disposal, a dishwasher, fix a dryer, change a carburetor, and pretty much do all the basic car, boat and household fix it jobs. I am very handy. You definitely want me on your team.

We still had an amazing life. I was still able to maneuver his wheelchair on the edge of the dock and close enough to the boat and time the flow of the tide to get him on the boat alone. We would go out fishing. I would drive the boat (it was 47’ long) and run up and down the stairs all day to make sure he was not too hot, not too cold, feed him, help him pee. I would cast out fishing lines, take us to the fishing “grounds”, reel the fish in, fillet the fish and cod the fish. But he was so happy. We were happy.

Duane very, very adamant that he wanted NO aides. No aide to help with the shower, the toilet or anything. I carried him and leveraged his weight against me to take care of everything he needed. I cared for him, our dog, our home and our “toys”. At the end of the day I would fall into bed exhausted. My alarm was set for every hour to get up and give him his meds, if he didn’t need to be rolled sooner. I never slept.

As he got worse I would sit next to him all night making sure he was breathing. During the day it would take over a hour for me to feed him a small meal. He would choke and I would have to reach in and pull the food out, pound on his back, tip him over to allow gravity to help dislodge the stuck food. It would take over a hour to shower him and sometimes two days to help him go to the bathroom.

He refused all medical assistance. No feeding tube, teach, suction or oxygen. No eye gaze speech machine, I read his lips but I already knew what he wanted, no power chair no hoyer lift. It was me and him… and our dog. We fell. We laid on the floor crying together coming up with a plan to get him up. We fell again and now had a plan. We fell again and again and again.

Hospice visited every week and couldn’t believe we were still doing it alone. That’s what he wanted.

We went on crisis care July 5, 2017. I was taught to change his morphine pumps, give him injections into his ports, swab his mouth, give bed baths and keep him comfortable. On July 7 I finally agreed to a catheter, he was in pain, we think he had an infection and he was completely out of it.

He passed away at exactly 12 noon on July 8, 2017. We were alone, the nurse had run out to get family and with my holding his hands and Buddy laying beneath him he took his last breath. It was honestly the most amazingly peaceful thing I have ever experienced.

ALS sucks. But it taught me so much.

Lessons I never would have learned with out it. It taught me patience and kindness and how to love on a level I didn’t think was possible. It taught me that money doesn’t matter, toys don’t matter and false relationships don’t matter. That when life gets tough and hard and you want to quit there is someone always there to hold your hand. ALS taught me that life is short and precious and you need to live everyday full of love and intention. It taught me that death shows you who your real friends are who your family is and who has your back. It taught me that no matter how great of a person you were you aren’t guaranteed a long, healthy life.

ALS taught me that love always wins.

Now I am almost 10 months out and I am still tired. I still can’t sleep. I am worn out and heart broken. I miss my best friend. But I am so so grateful for the time we had together, the encyclopedia full of things he taught me, even though in the moment I didn’t want to learn them. I am thankful I was able to sit with him and love him through the worst imaginable situation. I am grateful I gave him a life he loved.

ALS taught me what love really is.

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Day 3: Billie Eugene Burell 1950-1997

Today I want to talk about someone who can’t talk about their experience. May has always been hard for me. My father died on May 19th, 1997. 20+ years ago seems like an eternity but it’s not.

I never got to know my dad the way I should have. He was Dad and we hadn’t shared a lot of life experiences yet. I always hear stories and old friends call him Pete and some people called him Billie. I’ve made a goal to talk to my children about life more at early age because of this.

Billie was a veteran, a father, and a loving husband. These are the things I know. He was wild when he was young, and I always hear the stories of barefoot skiing, dirt bike racing, and fast cars. I never really knew that side. The Billie I remember was an avid fisherman who took his son to the lake almost every week in freezing cold weather, a hard worker, loved golfing, and enjoyed sitting out by the pool. I never really knew about his wild days, but it reminds me a lot about my journey in life.

We lived in Dallas for most of my childhood I remember vaguely him being in pain from hurting his back golfing. That’s where it all started. This was in the mid 90’s and medicine specifically surrounding ALS were in the dark ages. I remember constant doctor visits and eventually we moved to Raleigh, so he could be at Duke. No one knew what was going on with him, but he progressed quickly. My father never knew he was illegally adopted so we never knew if there was a family history of ALS. Gene testing was rarer than space travel at that point.

When we moved here he was still able to do a lot of things, but it really went downhill fast. Things go so quickly that you don’t take time to log memories. I remember playing basketball with him and after that he was immobilized. There are a lot of things I could speak on, but I know he was in a lot of pain. I remember him trying to grunt through it enough to talk to me but knowing what I know now I don’t understand how he hid it so well. I remember trying to help him do things but sometimes I wasn’t strong enough. It reminds me of my children since I was the same age.

It wasn’t long after that I remember an ambulance taking him from the house and they didn’t think he was going to make it to the hospital. He made it but not for much longer. He wasn’t told he had ALS until recently before his death. I’m not sure how he made peace with things so quickly or if he ever did. He’d communicate to us through looks and winks.

I remember not understanding what was going on. It wasn’t because no one told me, but it was a different world. We didn’t have the technology then and I just kept thinking he’d be back and cured. He was in the hospital for awhile and I would refuse to go. I was waiting until he was better. I can’t imagine how much that hurt him and I hope he knows now that I just didn’t understand.

In under 2 years a man was cut down from playing golf as a normal person to being gone. No one should have to suffer through that at any age. He was an incredible man who did so many things in life.

Moments stick with you forever if you are truly present in your mind. As a parent its hard to make your children present and that’s a really hard thing to do. I remember fishing a lot. He taught me about patience and doing things the right way. I remember catching my first bass and him making it out to be the biggest fish he’d ever seen. He marveled at this fish that was most likely ½ a lb., anorexic, and may have died of starvation if I hadn’t caught it.

I remember him driving the car into the lake and setting it on fire in the garage trying to rewire it. A black 280z T top he wouldn’t give up on.

I remember him taking me to work and it amazed me. He told me I could do anything in life if I worked hard and focused.

I remember building the Cadillac of doghouses with him and him telling me every step and how important it was to be precise in life.

These are the moments that no one will ever take away from me. The gold standard moments of life that I want to give my children and their children. My dad was never able to teach me how to drive, see me graduate high school or college, never able to see me get my first job, or experience the birthdays of his grandchildren. That’s what ALS steals from you.

I remember the day he passed, and I was with him. I had just turned Fourteen years old, was in middle school, and I had to say goodbye to the man who gave me those memories. Its burned into me just like the good memories. Its always hard to say goodbye but its excruciating to watch someone go when they can’t say goodbye too. That is ALS.

This picture is me with the most amazing man that ALS stole from me. I pray to God every day that my children remember more of me, that I’ve taught them enough, and that maybe just maybe they don’t have to write about memories but instead we can talk about them in 20 years.

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Day 2: Matt & Caitlin Bellina

ALS sucks (sorry Mom). it really really does. We try to put a happy face on it. We are the lucky ones. Matt is a slow progressor. The bodily functions that keep him alive still all work. We are the lucky ones.

Except we aren't. Matt is one of the sporadic cases of ALS. We did not see this one coming at all. We thought it was a pinched nerve in his neck.  Boy were we wrong. we went to doctors upon doctors. We took our 1 year old to the appointments that were hours away to sit in a waiting room that hopefully had a fish tank. Around trip #3 to a doctor 2 hours away we found out we had baby #2 on the way. We moved halfway across the country to be closer to family because Matt knew what diagnosis was coming even if our family did not. Matt accepted this path far ahead of the rest of us. How could a healthy, freakishly strong, handsome, 29-yr-old naval aviator have a debilitating terminal illness? Whelp, he did.

It wasn't bad for the first 2 years. He could still walk, talk, basically do everything. Then he needed a cane, a walker and now he's full time in his wheelchair. (which just today the hydraulic pump that raises the legs broke so that makes things interesting.) He can't do much on his own anymore, except order lots and lots of stuff off Amazon. He's really good at that. We have adjusted. We have our routine and our flow. we make it work.

The worst part, for me, the wife, is with the kids. Matt was so excited we had a boy first. He thought of baseball games and camping and Boy Scouts and teaching him about tying knots and baiting a fishing hook and about all the guy stuff. Then we found out #2 was a boy. Matt has never smiled so big. To say thrilled would be an understatement. Then 3 years post diagnosis we found out we brought home an awesome souvenir from vacation. I was hoping girl. we got boy #3. Matt was 33. Matt has never held our youngest unassisted. He's never thrown him in the air and caught him like all dads do. He hasn't put him to bed or gotten him out of his crib in the morning. Never fed him a bottle. never tickled the fat chubby thighs and gotten a belly laugh. He wasn't allowed to be the dad to our baby that he was to the first 2 boys.

Sometimes I wonder if the older 2 boys will remember Matt before the wheelchair and walker and cane. Maybe the oldest will have vague memories of chasing fireflies with Matt in the backyard or hitting balls off a tee for Matt to catch. Our middle guy probably won't remember Matt "normal" and our youngest definitely won't know Matt as in anything but a wheelchair and that is so not fair to the 4 of them. Matt is a great father as he is, but back to his fighting shape? Forget about it. No other dad would have been able to touch him. He would be beyond perfect.

The boys have to grow up faster, have to understand hardships sooner. They sometimes have to come second to whatever mishap is happening with Matt. They have to help me with the small things to help Matt. They talk about death and heaven. we have explained to them what is going on with Matt. They explain ALS to their friends, and sometimes strangers, when they stare at the guy in a wheelchair. What 6 y.o. needs to know about ALS?! The other day our oldest came home saying some girls were making fun of the boys in class. There was a father-daughter dance at school and they were making fun of all the boys because they weren't allowed to come. Our oldest was upset because of that and because his dad can't dance so he won't ever get to go to a dance together. broke. my. heart.

Now there are amazing things about ALS. It makes the trivial things exactly that, trivial. It gets rid of the clutter in life that doesn't need to be there, but the most amazing thing is the people it brings into your life. Seriously some of THE MOST AWESOME people on the PLANET are in our lives because of this beast and some of the most love we have ever experienced has come from this disease. So yea, we are the lucky ones.

Please consider donating for ALS awareness month through the link below. Every penny helps find a cure so people like Matt & Caitlin can stop suffering.

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Day 1: William "Cory" Burell

So, this month is ALS awareness month. I've made a commitment to myself to share the real side of ALS. I've posted positive things throughout my process and none of what I'm about to write retracts those statements. I've learned more about myself in the last year than the previous 34. I see things in a way I never would have before, and I have peace with my future.

So, my challenge of ALS awareness was to think of the hardest part of my journey. I began thinking about my daily activities. My day begins with having to be lifted out of bed, showering in a wheelchair, and dressed by my wife. Dragging across a chair opens my bedsores to the point I sometimes feel myself bleeding into my pants. My arms aren't strong enough to put on my own socks. When I want to use the bathroom, it takes 20 minutes of work just to sit down and my core is so weak I can't use the restroom for days at a time. I then go to work where I can't reach items on my desk, can't hold up a phone, and my voice grows so tired that I'm gasping for air to talk. I can't be the person I worked so hard to be.

I’ve fallen, hit my head, flipped backwards in chairs, been stuck for hours after slamming my head onto concrete, slammed my legs into walls, and sometimes don't sleep for days due to leg pain. My leg bones are so brittle I haven't stood up since March and the last time I did I fell out of a car. My body is so weak that I worry about suffocating in my own pillow or blankets. I've spent hours on the ground without the power to lift myself off it and pissed myself because I couldn't get to a bathroom fast enough.

All of this is real. All of this is what I call the daily struggle. I take anxiety medicine to hold it together and sleeping pills don't work anymore but that isn't the dark side of ALS. This is just the daily routine of which God empowers me to survive or at least tolerate. You become numb to your own pain.

The real side of ALS that is unbearable is knowing it's not you who is hurt. The peace I've made wasn't easy, but it was my peace. The pain is watching others suffer. It's watching your wife cry, your children worry, and there becomes a point in your life where hope turns to your own prison. The light switches on and you realize all the pain you are that you are numb to is what people watch you suffer through.

When I was first diagnosed I moped for a short bit and then you fight. Some say you can't fight ALS and that’s a lie. You fight until you find peace. You fight until you look in the mirror and you wonder if someone stopped your progression right then would your life be tolerable. The problem is ALS doesn't stop. It destroys you and at some point, you'd rather slip into God's grip than cause your family any more pain. You'd rather leave a positive memory over the shell you have become. You realize that you'll be dead soon, but others will live with those scars forever.

I know this because I've lived it. I watched my father die a painful, undignified, and hopeless death. His progression was fast and I'm not sure he ever found peace with it. I do however know it's been 25 years and I haven't even begun to find peace with the way he suffered.

I'm not suicidal and I'm still here but when someone asks me the flat out hardest part of my day it’s the 8 hours of crying I do when everyone else is sleeping. That is the prison that is ALS. The prison is knowing you can't protect them from what's happening because they love you. That is the truth that no one tells you. There is no commercial that shows how many people die inside when one person dies on the outside of ALS. There's no commercial that shows a child suffering year after their parent’s death.

So, someone may ask why I would post something like this for ALS awareness. I will be posting facts over the month about how many people are affected by ALS, posting stories from other pals, and letting them tell their stories but I wanted to be honest. I wanted to let all the statistics of the people who have this disease know it's ok to be honest. I wanted to dump my soul on the table. My mind maybe stronger, clearer, and I may have been saved in a way others may never understand but others will suffer imaginable trauma because of my disease. Then they will have to fight. So, when someone tells me ALS is rare I ask for who? For every person with ALS there are exponentially more people suffering because of it.

ALS isn't even a disease it's a real-life purgatory. You can't escape it and right now there isn't a single treatment on this planet to stop that. I believe it's coming but the funding ALS receives is a fraction of other diseases. I may be wrong, but I can't imagine a more cruel and painful disease that we just don't care enough about. If the words I just said write me off as crazy or just don't sink in I understand but they are the truth and they are the awareness I want, you to have.

All I ask is that you share. If you have a loved one fighting let it be known, if you are fighting let it be known, and show the world that we aren't a small prevalence of people dying but a community of people suffering beyond what words can describe. Don't be silent and don't hide from it. Voices change the world and understanding what others are going through opens the doors of compassion. The compassion we need is a commitment to make this the last generation of dying parents, broken children, and a world without a cure.

My three words are

“We all suffer”

#inthreewords