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ALS Worldwide
October 17, 2017

Practical Tips From One Who Has ALS

Barbara Byer, Father Sophronios, Stephen Byer

Here are my suggestions which I hope you find useful as you face the challenges of living with ALS. I wish I had someone who had talked straight with me from the very beginning of my diagnosis. I share with you what I have learned through trial and error. This is by no means medical advice; these are my tips based on personal experiences at the “ALS School of Hard Knocks.”

  • Keepin’ it real: The reality is that there is nothing easy about ALS; it is even hard to diagnose. Most of us lived with our symptoms for a year or two before we were given a definitive diagnosis. And all of us have faced the harsh reality that beyond a sympathetic ear and some general advice, the doctor didn’t have much more to offer us. It feels as though you’ve just been given a death sentence and hung out to dry a bit. True, right now there is no cure for ALS; but that doesn’t mean we give up hope - the cure may very well be on the horizon. More funding is needed. Until then, please don’t waste time, energy, and money on dubious claims of a promised recovery. I’m all for trying things, but there are crazy claims out there – beware of scams and snake oil salesmen who play on your vulnerability. There are no hidden secrets or cures in faraway lands. Trust only an organization like ALSWW; they know what is legit and what is not. There are no short cuts, but there are things out there which will improve the quality of your life. Please get the medical attention you need and learn from the soldiers on the frontlines – PALS (People with ALS) and ALSWW. After you learn and hear from others, try to find your own way. Experiment until you learn what works best for you. My advice is to focus on living as best you can with ALS and don’t let the fear of dying consume you. Live one day at a time and keep your spirits high. You might say, “Easier said than done” and I won’t disagree with you, but it sure beats the alternative.

ALS Worldwide: James Brown was called “The hardest working man in show business.” I call Steve and Barbara Byer “The hardest working couple in the ALS community.” To put it bluntly, there is no greater organization than ALSWW. I trust them 110%. Stick with them. Follow their recommendations. Read their website and Facebook posts regularly. You will not find people more selflessly devoted to helping others than the people behind ALSWW.

  • Diet and nutrition: With ALS you will definitely lose muscle mass and often a great deal of bodyweight. You will increasingly feel weak. Most will tell you to eat everything and anything (even junk food) to maintain bodyweight and muscle mass. My experience tells me just the opposite. In following what is traditionally recommended, I gained weight, felt sluggish, was often constipated, and my blood work was that of an unhealthy man. So I made a switch in my diet and followed my instincts: lots of fruits and vegetables, lean proteins in moderation, legumes, seeds, nut butters, olive oil, and whole grains. I eliminated processed foods, refined sugars, white flour, fried foods, and alcohol, as well as limited my consumption of dairy and caffeine. As a result, I feel much better; maintain a healthy weight and even some muscle tone. My energy level is high and my blood work excellent. I eat moderately, hydrate well, and my intestinal tract is clean. When I chose to get a feeding tube, after my swallowing was compromised, I continued to ingest real foods. I elected not to take formulas or ‘simulated’ food.

This how I continue with real foods: Food (raw or boiled) is put in a jar and my caregiver blends it with water with one of those hand-held soup blenders. We warm it up and add olive oil or tahini, and then with a 60mm syringe it is fed to me directly into the feeding tube - real food, good nutrition, and without fancy equipment.

  • Exercise: All will agree that exercise is beneficial to the ALS patient. Early on swimming, cycling on a recumbent bike, walking, stretching, and light dumbbells/exercise bands really helped me. I always wondered how hard to push myself when exercising. A physical therapist with good experience working with ALS patients told me that on an intensity scale from 1 to 10, not to exceed 7. I found this advice most helpful.

As my disease progressed, I slowly had to give up these exercises; however, to this day I continue with weekly physical therapy. Movement is important for maintaining muscle tone, flexibility, and good blood circulation.

  • Prepare for the future: There is no cookie-cutter path for ALS patients. The disease manifests itself slightly differently in every patient. But with broad strokes we can predict what the future may hold for one who is diagnosed with ALS.

For example: if ALS has affected your legs you can expect to see the disease continue to progress there; falling will not be uncommon – anticipate needing a wheelchair. And so it goes: difficulty swallowing? Anticipate a feeding tube; difficulty breathing? Anticipate a trach or the DPS; difficulty breathing and choking phlegm? A trach; are you confined to a bed? Please consider an air mattress to avoid bed sores. When clear speech becomes a challenge, anticipate needing a computer with voice projection (try Google translate as a no-cost option). If you cannot speak or write, please don’t sit isolated in your silence; consider a computer which can be operated with your eyes (there are many options out there); and if this is not in your budget, use an alphabet card and/or flash cards with frequently used words and phrases.

I know that all of these prospects seem horrible, but I can assure you that they are not nearly as bad as they sound – I have experience with all of these and life continues, differently yes, but it does continue and it is manageable.

  • Peace: Please safeguard your mental and emotional health with the utmost care. Try to let go of anger. Forgive others. Make peace with yourself. Turn to spiritual support if you are so inclined. Get counseling if you need it. Communicate with loved ones. Express your fears. Do not become a prisoner trapped in your thoughts and emotions. Prayer is a source of strength for me and perhaps it is for you. Others may find meditation or practicing mindfulness helpful. Each day find beauty and joy in small and simple things. I think we quickly realize to take nothing for granted. Death and dying is feared by us all. We look at the world around us and see tragedy every day. It puts ALS in some perspective. Not to minimize the tragedy of ALS, but in many ways we are fortunate to have the time to get our personal matters in order; to tell our loved ones the things we always wished we had said; to forgive our enemies; and to ask forgiveness from others. I pray that you may all find peace during this difficult hour.

A final thought: In a short piece such as this, it is impossible to anticipate every question that one may have. I know from my personal experience that ALSWW was and continues to be an invaluable support and resource for me. And until my last breath, I ask God to give me the strength, whether through prayer, conversation, or practical tips, to join you in your battle with ALS: [email protected]

You are not alone.

Monk Sophronios