I know cALS is a silly moniker, and one you never wanted or expected, but here we are. You are my cALS, my connection to the world at large. If a simple thank you could suffice, I would yell it, were I able to. Alas it is not sufficient, nor am I able to. You are a poorly recognized workforce, operating in the background, often in silence, your compensation…my undying love and admiration. I know I challenge the very love that compels you to my side. Every day exhausting your body, mind and soul. Knowing full well the only resolution to this is a double edge sword that will leave you shattered yet relieved, there is no word that can describe this adequately, other than unconditional love. No longer able to express my gratitude using my own voice, I am left with loving you through my eyes. Expressing all of my emotions with a glance, wishing this had never happened, thankful though that I have you. I could recount the many ways you make it possible to be present, the list would never end. However your greatest gift is your time and touch. Your touch reminds me of better times, of tender moments, our life before ALS. At times I close my eyes and relish those moments and memories. When I open my eyes, you are there, exhausted, stressed, afraid…but present, at my side. Look closely at my eyes, they are screaming…THANK YOU! THANK YOU! THANK YOU!
#sponsored #MTPApartner I’m proud to be partnering with Mitsubishi Tanabe Pharma America, Inc. (MTPA) to help newly diagnosed pALS and cALS navigate their diagnosis.
I’m often asked by family, friends and acquaintances; “what was your state-of-mind when you were diagnosed with ALS?”
I can start by sharing that the day we found out was a beautiful, breezy and sunny Texas day. Even though I had been dealing with symptoms for over a year, my only discernible symptom to others was a slight limp. Waiting in the exam room, my wife and I carried on typical conversation, hiding from one another the fear and anticipation, waiting. Shortly the Doctor came in, questions, document review with a brief exam. All of which I have experienced previously. The Dr. excused himself for a few minutes, once he returned he was very forthright.
To be honest, it all seems a blur after the Dr. uttered those words, you have ALS. I do recall looking at my wife and seeing that look on her face. The look that screams, NO NOT THIS, ANYTHING BUT THIS!
Afterward, my wife and I received the compulsory packet of information prior to leaving the clinic. Along with a few new prescriptions and the contact information for the necessary agencies to engage; which are now a constant in our lives. The rest of the day was consumed with conversations that ran the gamut from telling our children to whispering “I love you”, countless times. I’m sure my wife cried in private, more times that day than I’m aware of, as did I.
Once we dealt with the initial release of emotions and shared the news with our family, we decided to face it head on. We chose to “Embrace Our Now” and live life to the fullest. We soon discovered many other families doing the same. We began our ALS journey by arming ourselves with knowledge, coupled with nuggets of wisdom from those on the same adventure.
Let me be completely honest, it was far from easy. Shortly after our diagnosis, we were invited to attend an ALS support group and other local events. I’m not ashamed to say, I was simply too scared. I was not ready to see myself in others, not ready to witness my future, I was scared so I didn’t attend.
As I began to meet others living with ALS, I quickly decided, fear will not paralyze me, not before ALS does. We decided as a family that we would embrace every opportunity availed to me. Heck – six months after diagnosis I went Skydiving. A little tip if you decide to do the same; they can’t hear you say “I changed my mind” in the air, even if you are screaming it. Yes every adventure requires more prep, planning and forethought, ALS hasn’t stopped us.
Neither has it taken my optimism for life in general. Since diagnosis, our family has “Embraced Our Now” by embracing life, making memories at every opportunity. Big or small, every moment is precious when living with ALS. We have traveled, met other incredible pALS and cALS doing the same. I often share, I see it as a divine invitation to LIVE your life, embrace it with your heart and soul, with your whole being.
As we moved forward, we also discussed ways ahead with my doctor, keenly monitoring developments in ALS. When the prescription drug RADICAVA® (edaravone) came up, we discussed possibly pursuing this course, to include all pertinent data to make an informed decision. When the time came to make this decision, I felt comfortable moving forward. I would highly encourage anyone diagnosed with ALS to actively work closely with your doctor, to create a personal course of action.
RADICAVA is indicated for the treatment of ALS. RADICAVA may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions. See Important Safety Information below.
If you find yourself overwhelmed, not uncommon, take a breath, discuss what is paramount for “your” family to move forward. Plot a course through the sea of information and choose the resources needed to help navigate your way ahead. Remember this: you and your family are not alone, it may feel that you are, but we are a community, here for each other. J. Reyes
To help find your own way to “Embrace Your Now,” visit
This information is intended for U.S. audiences only 18 years of age and older. RADICAVA is available by prescription only. Talk to your doctor.
Indication Radicava® is indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Important Safety Information Before you receive Radicava® (edaravone), tell your healthcare provider about all of your medical conditions, including if you: • have asthma. • are allergic to other medicines. • are pregnant or plan to become pregnant. It is not known if Radicava® will harm your unborn baby. • are breastfeeding or plan to breastfeed. It is not known if Radicava® passes into your breast milk. You and your healthcare provider should decide if you will receive Radicava® or breastfeed.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What are the possible side effects of Radicava®? • Radicava® may cause serious side effects including hypersensitivity (allergic) reactions and sulfite allergic reactions. • Hypersensitivity reactions have happened in people receiving RADICAVA and can happen after your infusion is finished. • Radicava® contains sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma. • Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma). • Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects.
The most common side effects of Radicava® include bruising (contusion), problems walking (gait disturbance), and headache.
These are not all the possible side effects of RADICAVA. Call your healthcare provider for medical advice about side effects. You may report side effects to Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058 or FDA at 1-800-FDA-1088 or http://www.fda.gov/medwatch.
Please see full Prescribing Information and Patient Information.
How many of us with ALS have said these words, I know I have. It’s normal and healthy, once in a while. Yes, I know, there are many who require help moving on from these states of mind, I have; perfectly normal also.
So you have ALS, life just got exponentially difficult, it sucks! Is this an excuse to shortchange yourself and your family from making more memories. Should your family endure isolation and grow resentful, because “you just can’t”? Because, well “what’s the point”?
So you can’t do many physical activities, the ones the entire family used to enjoy. I love camping, guess what, I can’t set up a camp site anymore…but my family can, and they want to. Why because they want to spend time with me, also, they know I miss it.
Our families want to spend time with us, regardless of the logistical effort required. We may not participate in all the activities we used to, but we can relish the joy, smiles and love our families express as they are with us. Even if we are on the perriffery, there is joy in witnessing others “joy”.
I know full well not everyone can break away for many reasons, most of all financial. If so, try and find a way to continue enjoying each other and company. ALS is hard enough already, why feed it your joy.
So consider that outing, vacation or road trip, and make moments; they are the building blocks of memories. If not an outing, sit outside and enjoy a glass of ice tea, or a short walk through the neighborhood.
Light & Dark, Good & Bad, you can’t have one without the other. The key is what you focus on, which one do you feed more.
ALS as you know by now is relentless, regardless of slow or rapid progression ALS takes the life it has latched onto, everyone. There are so many examples of individuals who feed the light altering the face of ALS. What you don’t hear of are the thousands who are devastated beyond reach of the light, they are there, I have met some. My heart breaks for them and I wish they and their loved ones could be spared.
It is inevitable that we as pALS will experience both ends of the spectrum, I do. So how do I keep myself from getting lost in the dark? To be honest it would be very arrogant for me to offer an answer, I simply dont know. However I can tell you what I think it is. The love and support of my family and friends for one. Another is my personal perspective, I don’t have the inclination nor am I willing to offer what limited time I have to the darkness. Even with limited physical capabilities “I Am Here!”
I will, unavoidably, experience and accept those dark moments, but I will not feed them. Don’t get me wrong, it’s damned hard to break away from negative energy. You see it wraps you in false comfort and warmth. Eventually locking you in its true cold embrace.
Don’t lose sight of the light, it’s all around you. Sometimes it looks like a smile, an extended hand or a simple hello. Once you let it in it will envelope you and make it easier to endure moments of darkness.
But you’re still walking and have the use of your arms, whisper~~”I think they are faking it”.
You’ve been tested time and time again and still no diagnosis, are you sure it’s not mental?
I have to admit I can certainly understand scepticism when the professionals we look to can’t label what ails us (Neurologist). BUT! Who in their right fucking mind would want to fake having ALS, let alone actually having it! Yes disabled parking placards are prolific and we are often reminded, “we can never know what invisible disabilities people have”. Why then question someone suffering what not be undiagnosed ALS.
Are you inhabiting our bodies? Are you able to feel what we feel, know our inner thoughts? Can you know how many times we have dropped something, fallen after tripping or choked on water alone. Have you experienced uncontrollable emotional breakdowns that leave you spent, not to mention questioning your own sanity?
Until you personally experience these, please keep your ignorant and insensitive thoughts to yourself. Do you know how many people suffer for years until a neurologist finally utters “you have ALS”. They don’t need anyone belittling them because “a specialist” isn’t 100% positive it’s ALS. Did you know the average Neurologist in the US will encounter 1, one, uno, ALS patient in their careers. Let that sink in.
Sorry folks just had to, I’ve seen too many posts and comments regarding persons suffering neurodegenerative symptoms being persecuted by of all people, loved ones.
So, some with ALS indulge in cocktails/brews and such, while others don’t. And that’s alright, neither is wrong.
However, as ALS progresses the method by which one consumes evolves.
Allow me… Initial- normal drinking. Modest- chin tuck perhaps with a straw. Moderate- with straw, perhaps type of beverage alters, due to throat sensitivity. Advanced- delivered through PEG by brave family or friends. Good friends will help you even in public, lol.
Another aspect that changes is the math. No longer do you indulge in: glasses, cans, bottles or tumblers. Not even in ounces.
You now indulge in cc’s or milliliters (ml). As the typical method requires the use of an irrigation syringe.
The decision to continue enjoying the occasional beverage is entirely personal.
My legs can still support me but not for long, and although I can move them still, they betray me with spasms, cramps and twitches. Now the accessory muscles supporting my right knee are weakening to the point of giving out on me. Making me fearful of walking.
My hands cant hold on to things, a tissue is a workout, I can do two reps and I’m done. When I am able to grasp something my hands won’t let go. I’m screaming at them internally, but they wont budge. My thumbs are the most obstinate, damn thumbs!
My tongue of late cramps! Yeah you heard that right, my tongue, what the hell! This puts a new perspective on the phrase “tongue tied”. Not good for someone who has allot to say… just saying.
My mind is in tact, thank God, at least I think it is? Yet my thoughts often wander to dark places, making me question my existence and the point of trying. I allow myself to meander through this forest of despair, knowing that I can navigate out by focusing on my family. It’s ok to wander, just stay tethered to hope.
Just a few of the oxymoronic aspects of ALS.
Oh yeah, one last thing, I hate ALS, but I love the people it has brought into my life.
In the summer of 2017 our family moved into a rental home as our new ADA accessible home was built. During this time my ALS had taken my ability to drive, so my oldest son became my caregiver. Given that I was home for the summer with all my kids, four, I decided to create a fictional account of that summer. Thus was born the short story, “Domestic Hostage”.
I hope you enjoy it, it was originally posted daily as I wrote it, on Facebook. Follow the link to read it.