Living With ALS Is a Matter of Letting Go and Keeping On
Newly diagnosed ALS patients often contact me and ask what I eat, what I do, and how I’ve managed to continue living with ALS for the past 12 years. I explain that there isn’t a magic solution; it’s a combination of following our doctor’s guidelines and learning how to emotionally accept the disease. That’s what offers the best scenario for a long life.
Then I share my strategies, like this one.
My pity party
After my doctor told me I had ALS, I knew this would be a permanent life change, but my emotions argued otherwise. I was sad and angry, and I blamed ALS for everything. For example, I went down a deep rabbit hole of sadness, brooding about never being able to participate in or experience certain physical activities again. My thoughts went something like, “I’ll never dance again! Or hike, or ice skate, or snow ski, or dive off a diving board …”
A whole parade of sports and recreational endeavors flashed across my mind. Partway through all the mental whining, I suddenly grasped the ridiculousness of what I was thinking.
Ice skate? Given the chance, would I really ice skate again? No, it’s been years since I last did that! How about snow skiing? Again, no. I tried snow skiing over 40 years ago, and now the very thought of hurtling downhill over the snow, in icy-cold temperatures to boot, didn’t tempt me at all. The present-day me, not my ALS, was saying no to the activities!
I was mixing up happy memories of days gone by with fantasy and a good dose of “someday-itis.” It’s like what we tell ourselves when we refuse to let go of the skinny jeans that have spent years in the closet.
My next step was to write down all these activities in a small spiral notebook. Then, challenge myself as to why something needed to remain or get crossed off. But as each item was addressed and eventually crossed off, my task became easier and easier. A weight was lifted from my brain. All those mental promises I’d been holding on to of making time to try something I probably wouldn’t enjoy anyway, or do something that didn’t hold my interest anymore, slowly disappeared.
I felt gratitude for having learned the sport or activity, but at the same time felt an immense been there, done that sensation.
Patience and progress
It took nearly a whole year to fully accept that many favorite physical activities would never be part of my life again — and to finally be at peace with the thought. Rather than being overwhelmed with what I could no longer do, I focused on what I could accomplish. This gave me hope.
My new list became one of just a few activities, those so important to me that I couldn’t ever, ever give them up. For example, even if I had to use a walker, I wanted to walk with a normal gait and have good posture. I wanted to be able to get down to the floor to practice simple yoga poses and to take a daily bounce on my little rebounder.
As I wrote in a previous column, “The ALS Game Board of Life,” life changes are often outside of our control. We have to move on while making the best of our changed circumstances. I’ve shared with you one strategy that helped me accept that change. Why not give it a try? I’d love to read if it helped you, so please leave your comments below.
But with patience and diligence, I also know I can continue to 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
David Ray Freebury
Dangers comments are entirely appropriate for someone who has a slowly progressive form of the disease. I share that form of the disease and appreciate her recommendations. However for someone with the more rapid form of disease , especially the forms that begin with bulbar palsy, these patients probably need to be advised how modern technological advances can enable them to continue to use the computer, continue to be able to communicate with family etc. it would be great to hear from someone who is managing these symptoms.
Dagmar Munn
Thank you David for your comments. However, don't be so quick to discount my state as a slow progressor. I like to think that the strategies I follow have contributed to my slow progression. What I do is based on published research conducted on actual ALS patients. That is why I write about these and want to share the findings with other patients. If other patients report that these strategies have slowed the progression of their ALS symptoms, then let's pay attention.
For my recommendation of a good resource on how to live with adaptive equipment and tools, this website is excellent: Your ALS Guide https://www.youralsguide.com/
Doulas Frazier
Great thoughts Dagmar. Thanks
What I've come to realize recently is that while I have worked out being ok with dying, I seem to have a greater fear lately of being more disabled than I am now, being a burden on others, etc. My speech is going...how will I handle calling out to someone? How will I handle all the technology involved? I know Stephen Hawking said the key is to ignore what you lose and focus on what you still can do but I have difficulty pulling this off lately.
So, I appreciate your comments.
Doug
Dagmar Munn
Thanks, Douglas. I'm pleased what I write is of help to you. You describe being caught up in "thought loops" worrying about the future. It's easy to get pulled into all those worst-case scenarios. Might I suggest this column I wrote on that very topic: "Banishing Thought Loops and Living One Day at a Time"
As for your speech, why not try to save it? Change how you breathe, adjust to a different pitch, adjust how you pronounce certain sounds... I've saved my speaking ability 5 yrs. beyond when I thought I lost it. I've written about that too. Begin with learning about this online course: The Living Speech Series.
Best wishes to you, Dagmar
Dave Smiglewski
Thank you for your always inspiring messages, and particularly this latest one. Focusing on what we can do and leaving behind that dark rabbit hole that many, if not most, of us with ALS have experienced is so necessary. Every day is a gift and using it for the most good seems to make the sun shine brighter. Do we have a terminal disease? Yes of course. Don't we all? Meanwhile, we are alive and have much to offer.
Dagmar Munn
Thank you Dave. I'm high-fiving with you across the miles! :-)
Kathi B
Hello again,
Been awhile, as I struggle with what was called 'slow progression' in May 2021....limb/lumbar onset sporadic ALS...and I just had a wheelchair seating appointment July 2022 (14 months l;ater). Must say, I have been reading and following all your articles and suggestions Dagmar--very helpful and timely, etc.--and I am a positive, 'can-do' person with 40 years experience as a special education teacher of students with very significant 'differing abilities' (known to most as 'disability labels'). However, I have come to consider that I am not a 'slow progressor'--mostly because I seem to be missing the ability to take/use Riluzole or the infusion alternate. And I DID try for 3-4 months immediately following diagnosis, with excellent cooperation from our ALS Clinic neurologist to try alternate dosing and schedules to acclimate to tolerating it. No luck; no reason why my system will not accept it; and no alternative. So, although I still wear my AFO's and move about slowly with walker 10' at a time as possible, and work hard to maintain my weight & BMI, and balance energy usage, etc., there is a reality check I think between what is possible and what really can happen for each individual with ALS--mostly because there is still SO MUCH unknown (and un-funded) in understanding ALS in the past 80 years--including even the basic differences that may exist between men & women with ALS. I do not intend to sound dismal, I want simply to express a view from an alternative perspective.
Dagmar Munn
Hello Kathi, It is so good of you to check in again and share how you are doing so far. I am sorry to learn that you have to manage your ALS without any medication... you have my admiration and respect. Yes, you are correct that there is no "one-size fits all" approach to ALS or how it affects each individual. It is so frustrating for us all that medical research can't move any faster.
I am appreciative that my writings give you hope and motivation. You sound like you have a good core of "can-do" spirit already. You've made it past your first-year milestone of living with ALS. May you reach many, many more. Best wishes to you my ALS friend. Dagmar
Laura Urbiha
I was diagnosed 3/15/2006 age 45, with only upper motor neuron involvement. My husband was devastated because he hadn’t considered that it might be something so serious. Me not so much because I had been researching my symptoms online and had suspected that ALS might be the cause. From the beginning I was declining rapidly, I had to stop working by 7/07 because my speech was so bad that nobody could understand what I was saying. It seemed like I could do less each week. Needless to say, I spent much of my time focusing on everything that I would miss out on experiencing in my three sons lives…two who were in high school and one in middle school.
Tragically my husband died suddenly in 6/08! Whatever was I going to do? He was supposed to be taking care of me! I made a long list of things that needed to be done starting with his funeral, thank you cards, dealing with his estate, updating my will and trust etc. The list also included another EMG to better understand my current health situation…unfortunately at this time the EMG demonstrated LMN involvement at every level tested…I officially had ALS! My plan was to keep plugging away at the never ending list until I could no longer do anything. Before I knew it 6 months had passed with minimal decline…then a year…and more.
What happened to cause this leveling off? What changed? I did! In trying to help my boys appreciate the financial position that their father had taken steps to provide for us in the event that he should die. I explained that while it really sucks that he had died, we needed to be thankful that he had provided for us financially. We wouldn’t have to move, I wouldn’t have to worry about not being able to work, they would be able to afford to go to college etc. Instead of focusing on what I might miss, I became thankful for what I have.
I chose to focus on the beauty and joy that surrounds each of us. That was nearly 16 years ago and I’m still kicking albeit not quite as high anymore!
My neurologist told me that ALS is considered a linear progression disease, that progression typically occurs at the same rate from beginning to the end. He said that I was atypical lol. I have no doubt that my change of attitude has helped me to survive this long! My “boys” are all in their 30’s, one is married and I have two beautiful granddaughters who live here with me and their parents. Yes, I am BLESSED!
Dagmar Munn
Hello Laura, thank you for sharing your ALS story. We all have a different journey with ALS, and I am sure your experiences will inspire others. Yes, attitude is so intregal to building resilience and coping with ALS symptoms. I wish you continued resilience and many years ahead. Dagmar