A recent exchange I had with a fellow person living with ALS helped me understand a new perspective. The perspective of someone who is inextricably focused on the analytical truth of ALS. What do I mean by this? Well, the hard truth about ALS is; there is no cure. Scientists are not close to discovering a cure. Yes there are treatments that extend life, by miniscule amounts to the average person, but to those living with ALS, we feel different, well some do.
This individual and I had a very civil exchange, no vitriol, no finger pointing, and mutual respect for each others views. He is angry at the false hope perpetuated from every direction, paraphrased of course. I’m not sharing anything not felt by many. Anger can fuel and drive persons to live. This just isn’t my focus, personally.
He shared, very succinctly, his evidence to support his views, and honestly there is no argument. ALS is horrible, devastating, cruel and yes currently incurable. I and so many are acutely aware of this truth, yet we don’t allow the analytics to be our driving force. But, but…neither are wrong; in this climate of intolerance for others beliefs, we both accepted that our views were simply ours.
Ultimately we both hate ALS and the fact that it will take us from our families. The key difference is what drives us.
My focus is hope, although I’m keenly aware of the reality, I’m still hopeful. Hopeful, if not for m, for those to follow. Despite of all the analytical data, I’m extremely hopeful. I don’t refute the data, I am optimistic in spite of it.
Analytical, Hopeful or both…whatever drives you to live. You are living none the less.
The day we introduced you to these three letters, it altered our lives and relationships irrevocably. Regardless of your age at the time, you grasped the gravity, you understood. Your response broke me, not because you cried, but because you didn’t. You responded with a hug and “it’s ok”.
Your strength astounds me, I am blown away by your resilience. I know you cry when alone or with your siblings, asking, why them, why now, why us? I don’t have those answers. All I will say is, let’s make the most of it and create wonderful memories.
I know I’m supposed to take care of you, not the other way around. It was never supposed to be this way. I try not to cry, but I can’t help it when I look at you. My thoughts go back to my feeding you as a baby, now that you feed me. Now that our lives have forced us to switch roles.
Now, instead of talking about your future plans, we have conversations about my wishes; I have to let you know before I lose my voice. Your days now revolve around my needs; instead of spending time with friends, your days are spent caring for me.
Memories flood your mind while tears flow from your heart. My suffering has ended, and yours has just begun. Know this, the pain will never leave, but life will weave into it and soften it’s effect. It wasn’t supposed to be this way.
Once these three letters take hold, they never ever let go… A-L-S.
Yesterday I shared about unintentional or intentional comments that some might say, hurt, when uttered. One being, “you look good”, or “you don’t look sick”, respective our Amyotrophic Lateral Sclerosis (ALS).
So, what exactly do you expect to see, once you are aware that someone has ALS? Someone like Stephen Hawking? Or can you be honest and admit that you have no idea what it is, or what to expect. Don’t get me wrong, we know and understand it’s well intended. You have to realize that outward manifestations, or visible changes caused by ALS can be deceptive. But how, you may wonder.
Allow me to provide some context to the phrase, “looks can be deceiving”, applicable to ALS. Please understand that by the time one is diagnosed with ALS, the damage is already extensive, however barely perceivable. Physical signs could be as benign as a slight cough, or tickle in the throat. In my case, the scuffed toes of my shoes, later identified as foot drop.
ALS is so difficult to diagnose, that it can take up to two years, if you are not miss-diagnosed with MS, MD, Stroke and a slew of other conditions. The experts have to test for everything else and exclude them before settling on ALS. So if we don’t look sick, or decrepit, it’s not us it’s you.
Let’s look beneath the skin to help you understand. ALS as it begins, is imperceptible. Microscopic nerve cells begin to change, what causes this, extensive research has yet to pinpoint this. Eventually those nerve cells die, specifically nerves that control voluntary movements. There are more physiological systems and organs that are affected than you know. We, the afflicted and our families quickly learn this awful truth.
By the time ALS is even considered as a possible diagnosis, thousands or millions of nerve cells have died.
THERE IS NOTHING,TODAY, TO STOP IT!
We will not get better! There are rare exceptions of individuals reversing or halting their ALS. Research is underway to understand why and how.
When we do receive the news, there is a huge mental hurdle to overcome, the first of many more to come. If one is able to come to terms with this new reality, I say if because many simply can’t, to include family members and partners. The physical changes and challenges aren’t far behind.
I may look different, being in a wheelchair. I may sound different, or not be able to speak, but I’m still me, we are all still ourselves. Our minds and feelings are in tact, altered, perhaps frail, but still here.
I, we appreciate your kind words, just realize that how we look is not a reflection of the death that is progressing within us. Our families are keenly and painfully aware. As they see us and the nuanced changes in our bodies. Imagine the pain of a person afflicted with a rapid progression, able bodied one day an gone months later.
This is one of the cruelest diseases, don’t add to the pain by being insensitive, be kind In thought, words and deeds .
(Based on observations of others comments on social media)
ALS takes so much from each of us; those of us living with this disease and our loved ones. At some point, as our eyes are all we have left, they express our desire to be free of this cruelest of afflictions. We each reach this point on our own terms and time. When the time comes our families have to walk the extremely sharp edge of grief and relief, the innate duality that is ALS.
The desire to be present ultimately gives way to the need for rest. It’s not a surrender to ALS. It is in fact our body simply finishing its arduous fight, a fight that took every ounce of our being, every ounce. A battle that our loved ones fought at our side, giving us the strength to endure as long as we do. We must all rest when our time arrives, every single person, regardless of who we are, ALS or not.
Our families don’t ever want us to reach this point, but we do. It’s okay to feel this way; when you feel in your soul that it’s time to rest.
I hope this is not distressing, I only put my thoughts down to help others understand. ALS is a beast, having the strength to endure any of it is a monumental feat. But I (we) and you (loved ones) are so worth the fight!
However you feel, at any point in your journey, that’s OK.
I have ALS, but I am not the disease, nor is it me. My body is in a wheelchair, but my mind and soul are not!
As I reflect on my physical abilities, now dis-abilities, I realized I am still the same irascible, stubborn husband and father. So what has truly changed? My perspective, both physical and mental.
The able bodied world accommodates where it can, most often at our urging. The greatest accommodations though have to come from within. Even from our closest family; those that can accommodate us do stay with us, those that can not, leave us.
Ultimately we have to allow ourselves to accommodate our ALS. Accommodate, not surrender. Because we are not our ALS, we are “Us”, still us, just with ALS.
This is a term that for general purposes we use to describe appropriate interactions/actions with and to others. Modesty is frequently associated with dignity, when discussed. We are all familiar with it’s use under this premise. I would like to share another aspect of this term as it applies to ALS, end of life.
Although this dignity or dignified end of life concept has been present throughout all human history, it continues to be taboo. My question is, Why?
Death is very much an integral aspect of life itself. Yet as a society we shy away from this very real and unavoidable eventuality. Fear, narcissism, ego and many other factors feed and add life to the taboo public perception.
Recently the ALS community experienced the loss of two incredible human beings, who defined their dignity. I am not here to discuss anything other than the strength and courage needed to make such a truly personal and difficult decision.
Take a moment to reflect on the many hours of reflection, conversations with loved ones and the tears shed leading to this. Just imagine.
Given that ALS takes everything, dignity is totally dependent on others. I ask that you also take to heart the amount of love and respect for the individual by the family. That is true and selfless love, which is essential for dignity.
I won’t even venture to say “ I can imagine “ the discussions had. Ultimately each person defines their dignity and we who remain cherish their lives and memories, with DIGNITY.
sponsored#MTPApartner I’m proud to be partnering with Mitsubishi Tanabe Pharma America (MTPA) to help newly diagnosed pALS and cALS navigate their diagnosis.
Imagine having your life turned upside down with the words, “you have ALS”. Imagine losing everything that gave you security, comfort, and support. This, in fact, happens to many people dealt a terminal diagnosis, abandonment. Losing your entire support network, all of it! It’s an insidious occurrence around the world, hidden in plain sight.
What then? Where to turn?
ALS has a tendency to do one of two things; rally your family and friends around you or bring the worst out in them. This is just a simple fact of life. Sadly, there may be many pALS who are abandoned and left to navigate this journey alone. How can these individuals embrace their new challenge as their body and family turn against them?
There simply is no solution. Each case requires a tailored approach for that pALS’ needs. Some resources are available through ALS clinics, various nonprofits and government agencies.
Considering the degree of care needed may be a challenging experience depending on what resources are available. I have found that in these challenging instances, it is the ALS community that must come together and embrace the pALS to show support.
Personally, I am blessed to have a very supportive family. I can’t fathom living with ALS and also being abandoned. My heart goes out to anyone dealing with this very situation.
Having experienced a medical emergency a year ago, I experienced firsthand the sense of helplessness. Unable to move and completely dependent on others. Given the current state of health staff shortages, it took some convincing to allow my family to help me. Without them I would have been miserable.
It’s not just a matter of who you embrace but who embraces you – “Embrace Your Now!”
MTPA offers the JourneyMateTM Support Program featuring a JourneyMateTM Resource Specialist who can help you and your loved ones learn about ALS and RADICAVA ORS® (edaravone) or RADICAVA® (edaravone) IV as a treatment option. Call toll-free 1-855-457-6968 or visit https://www.radicava.com/patient/journeymate/.
Interested in sharing your RADICAVA ORS® or RADICAVA® IV experience with others? MTPA offers the Share Your Story program to allow real people to share real stories. To learn more, and for a chance to share your story, call a JourneyMate Resource Specialist toll free at 1-855-457-6968 sign-up at https://www.ShareYourALSStory.com.
This information is intended for U.S. audiences only 18 years of age and older. RADICAVA ORS and RADICAVA are available by prescription only. Talk to your doctor. IMPORTANT SAFETY INFORMATION Do not receive RADICAVA (edaravone) or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS.
Before you take RADICAVA or RADICAVA ORS, 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 or RADICAVA ORS will harm your unborn baby. • are breastfeeding or plan to breastfeed. It is not known if RADICAVA or RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive RADICAVA or RADICAVA ORS 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 and RADICAVA ORS? RADICAVA and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions. • Hypersensitivity reactions have happened in people receiving RADICAVA or taking RADICAVA ORS and can happen after your medicine has been given. • RADICAVA and RADICAVA ORS contain 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 and allergic reactions. The most common side effects include bruising (contusion), problems walking (gait disturbance), and headache.
These are not all the possible side effects of RADICAVA or RADICAVA ORS. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to http://www.fda.gov/medwatch or Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058.
INDICATION RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
We live surrounded, orbited by those that come into our lives. Most on the periphery, some fly close, even less shift our trajectory. But a few collide with us, forever changing us. Their impact leaving a lasting and enduring impression. When they leave us it hurts, yet we carry on, we must.
Recently we, our ALS family, lost two such persons. Each having left an incredible void in their families lives. Both fierce advocates, more importantly fierce mother’s . Both willing to fight not just for themselves, but for everyone afflicted by ALS.
Sandy, you altered the ALS research landscape by demanding and implementing accountability. Allowing those living with and affected by ALS to contribute directly to the impenetrable research machine. Your voice and presence never diminished by your failing body; when you spoke we hung on to every labored word of yours.
Taya, we met over zoom, and your energy and smile won us over. As we came to know you it soon became glaringly obvious, you were a force of nature. A fierce ALS advocate in your own right in Canada, and an avid fan of the Toronto Blue Jays. We were always in awe of your efforts and your candid perspectives.
I know my life is better for having met both of you. So with broken hearts and broken bodies we keep fighting. Our hearts continue beating with a broken cadence, having lost two resounding notes in our ALS song.
I am waiting for you to practice what you have promised… regulatory flexibility toward ALS treatment’s. I know and understand you have so many priorities, but I hope you understand that it’s very much a priority for me. You see it’s very personal to me, my family and every person afflicted.
I get it, although we are dying, you hold true to your practice of protecting us from potential deadly therapies. I snicker, well because as you know… we are already dying. I’m being polite, obviously.
In the turbulence of delay after delay, the wake takes it’s toll on our hope, bodies and minds. Not to mention our families hearts; so we wait.
However while you deliberate and decide our fate, we will continue to live in spite of ALS. We will continue to encourage, press and help you understand the human price of the science. We, the person with ALS, are the currency; what value do you assign to us? As Lord Farquaad once said… “Some of you may die, but it’s a sacrifice I am willing to make.”
I jest of course, I can because I’m on the inside.
I truly respect the very difficult task you have been charged with, but could you try being a bit more flexible, maybe just a skosh.
affected by or relating to paralysis of all four limbs; tetraplegic. “quadriplegic patients” noun
a person affected by paralysis of all four limbs. “a car accident left him a quadriplegic”
Paralyzed from the neck down. This is what a person living with ALS will experience; if they live long enough to reach this inevitable conclusion. So please forgive us if your well intended wishes are occasionally rebuffed. Or we may simply smile…graciously.
Many paraplegic persons are a result of injury to their spine. ALS on the other hand is a progressive degenerative disease, where by some unknown trigger, motor neurons die. Translation – the nerves that control movement die. The general public believes that arms and legs are the principle muscles that move. Once diagnosed with ALS you learn there are oh so many more. • Diaphragm • Neck • Tongue • Soft palate • Swallowing • Lips • Eyelids
All of the above can be affected in too many variations and sequences. The typical prognosis for us is 2 – 5 years. So if it can take up to two years to be diagnosed, how much time does one actually have. Again you have better odds in Vegas than guessing anyone’s prognosis.
Okay let’s get into some of the odd things that ALS causes to our bodies, again some experience these some don’t. Sialorrhea! What the heck is that!? It’s the medical term for excessive saliva, drooling. The drooling isn’t the major issue, although uncomfortable socially, the real problem is choking. Many persons with ALS often aspirate drainage and end up with life threatening pneumonia. Paralyzed and choking on your own saliva, ALS is simply brutal.
PBA, Pseudobulbar Affect; emotional incontinence, uncontrollable crying or laughing. This is a little side hustle ALS has, although this condition can be triggered by a number of neurological conditions and head trauma. So what does PBA do to the person? It literally makes one think they’re loosing their mind. Total emotional breakdowns for no reason or caused by emotionally charged triggers. PBA also causes laughter or giggling for no reason, most often at inopportune moments. Luckily there are medications that can help suppress or control the intensity and frequency.
ALS, three letters that can be expressed in so many four letter words, expletives just don’t do it justice as to how devastating it is. So if you encounter a person living with ALS and their family, consider what they are enduring and realize how strong they are.