An evolution in understanding the diversity of ALS progression
Changes I've seen in living with the disease for the 14 years since my diagnosis
Recently, while at my ALS clinic, I had an enlightening discussion with my neurologist about the evolving understanding of the disease mechanisms of ALS.
My doctor told me that for many years, the medical community viewed ALS as a singular condition with similar needs and symptom progression among all patients. Today, that belief has transitioned to thinking of ALS as an umbrella term covering subtypes and the diverse ways the disease can appear.
I’ve seen the same growing understanding among the ALS community, especially those I interact with in the ALS News Today Forums. When I began as a forum moderator, newly diagnosed patients used to share long lists of medical equipment to have on hand while they waited for their symptoms to progress. We discussed the only two treatments available at the time: Rilutek (riluzole) and Radicava (edaravone).
Following my diagnosis of ALS in 2010, I asked staff members at my ALS clinic a common question that all newly diagnosed patients ask: What sort of medical equipment will I need? They responded by handing me a 1-inch-thick, spiral-bound manual containing photos and descriptions of an overwhelming assortment of supplies and equipment.
Inside were lists of medical equipment recommended during each stage of ALS, spanning the expected five years of a patient’s life after diagnosis. I took the manual home, placed it on a shelf, and waited.
That was 14 years ago. Today, I’m still walking — with the help of a wheeled walker. You could say I’m still on page one of my ALS manual.
Changes I’ve seen
I reminded my doctor of that long-ago manual, and she told me I’m a good example of the disease diversity in ALS. I see the same variations among our current forum members. Many have been living with ALS for more than 10 years. Discussions no longer focus on lists, but on sharing positive living tips and experiences with the broader availability of medical treatments.
However, I keep meeting newly diagnosed patients online who ask for an easy list to follow. They’re surprised when I tell them that there is no one-size-fits-all solution to living with ALS. They need to seek guidance from their medical team, who can determine how to manage their unique variation of symptoms.
But I do share a simple formula for living called the “4 Ms.” As I wrote in my column “The 4 Ms: My Formula for Daily Living,” the four points are as follows:
- Medication: Follow your doctor’s advice, and take all prescribed medications. These will help delay and manage your ALS symptoms.
- Mindfulness: Move slowly, pay attention to your movements, and keep your thoughts in the now. Practicing mindfulness has helped me feel that I’m in control, have more awareness, and am moving safely.
- Motion: Moderate exercise can be beneficial for ALS patients. I do short bouts of gentle exercise several times throughout the day.
- Mood: Let go of thinking of how your life was supposed to be. Laugh often and practice gratefulness.
Let’s continue to support each other and live well while living with ALS.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
About the Author
Jeff Lester
I certainly agree with the premise that ALS is an umbrella diagnosis and that each of us takes a different path that causes our ALS. Even after our diagnosis, the progression we have can be impacted by what we do or do not do. I was diagnosed over thirty years ago on October 1, 1993, just before my 27th birthday. I went on a ventilator in December 1997. My progression was pretty typical to that point, but for whatever reason, my progression stopped. Today, I can still eat and drink, although the food needs to be modified in some cases (I swallow a full Omega pill) . I speak, but it is only understood by my immediate family. Also, I can still breathe off the ventilator. Last year, I started taking Nuedexta and have seen slight but perceptible improvement that has been verified by my ALS Clinic. It is not something they have ever heard of happening, especially for someone in my advanced state. They have scheduled me to be seen by an ALS Research Center to investigate further what is occurring. I will emphasize there is no predicting what course your ALS will take even AFTER THIRTY YEARS!
Dagmar Munn
Hello Jeff, Thank you for your comments and sharing your journey living with ALS. I am in awe of your courage and resilience... and your book, blog, and all you do for the ALS community. Thank you! Best wishes to you for a continued long life! Dagmar
Fred Price
I was diagnosed with ALS in 2012. I seem to be similar in progression to you. I now use a walker with wheels, but other than that am mostly normal. I exercise moderately daily and try to maintain a positive attitude. I am lucky to have a very supportive family.
Alyssa
This is absolutely beautiful 😍 thank you for sharing
Andy Melton
Thank you for that well-written perspective. My wife is in month 6 of her diagnosis and now that we're over the initial shock and despair, we're discovering there is a lot of life to live. I think your 4Ms should be made into a wall hanging for our kitchen.
Dagmar Munn
Andy, thank you for your kind words about my 4Ms! Best wishes to you both! Dagmar
Dianne
Dr Stanley Appel of the ALS Clinic in Houston told me about ALS being an umbrella for more than 1 disease over 5 years ago. I just hope they figure this disease (s) sooner rather than later
Dagmar Munn
Dianne, yes - - medical experts are agreeing that ALS is more than just one disease. Best wishes to you to continue to live on, and live well. Dagmar
Debbie Harris
That’s wonderful you’ve made it 14 years and doing so well Our beloved son-in-law just passed May 17th, 2024. He was diagnosed July 17th, 2023. He only lasted ten months! He had twitching in his arms six months prior, but doctors said it was stress. The disease progressed rapidly, unfortunately. He left behind his (our daughter) and four kids. The youngest is eight. He was 50!
Dagmar Munn
Debbie, I am so sorry that you lost your son-in-law to ALS, and so quickly too. ALS is truely a conundrum for the medical experts. We hope they can unravel it soon. My thoughts are with you and your family. Dagmar
Bettye URBAN
I am astounded by the length of time to live somewhat of a quality of life with ALS while others are not. I was diagnosed in November of 2023, but had symptoms at least 3 to 4 years prior. I was negative on every test given, but yet my speaking became worse and worse as did my swallowing. I began to lose my balance, although subtly, I was "coerced" into using a walker with wheels both here at work and some at home after several GOOD falls. I use the stationary walker at home mostly. I feel like since diagnosis in 2023 that the progression is moving faster than I really anticipated. The one thing that I have not taught myself is how to let go of the fact that I keep saying "This is not how I wanted my "golden years" to be, and the sadness it brings with the realization that "I am stuck with it." Yesterday, June 20, 2024, sitting at my computer at work, I had the thought "Thank God that I was well enough to care for my husband, and members of my family, before the ALS hit!" Glory to God, I feel as if I have hit a milestone! I am really saddened when I read about the young persons, even middle aged, who are saddled with this disease! It is not fair I think, but then it's not fair that there are so many other crippling diseases, including childhood cancer, etc. Therefore, I wait and do the best I can. I praise the Lord when I find my mind going elsewhere in my thoughts because at 77 years old, I can still work full time, I can still walk, still eat most foods, still live alone, have a beautiful son and daughter in law and a wonderful grandson. What more could I ask for???
LORRAINE N BERGKVIST
I started having voice symptom 7 years ago; was diagnosed 4 years ago. I still eat normally; I get moderate exercise; gained weight; I take the two R's medication. I was heartened by Jeff's note.