Celebrating 3 Years of ‘Living Well with ALS’

Celebrating 3 Years of ‘Living Well with ALS’
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This week, I’m celebrating my third anniversary of writing columns for ALS News Today. This special column expresses my gratitude for having the unique opportunity to share my thoughts and wellness knowledge with the ALS community. It is a thank-you to loyal readers for their support, comments, and friendship.

When I was diagnosed with ALS 10 years ago, blogs and books written by ALS patients were very different from what we have today. Most wrote sad stories about their lives with ALS, chronicling their symptoms and slow demise. I searched but found zero information about improving quality of life or emotional well-being. I found only endless lists of medical equipment and technology that would be needed during the disease.

No one addressed the emotional trauma of having one’s life upended by ALS. Or how to climb out of the well of anger, sadness, or numbness that I refer to as the “ALS waiting room.” Emotional well-being and ALS just weren’t found in the same sentence.

In time, I began to build my resilience and practice healthy coping strategies. I stopped asking, “Why me?” Instead, I asked, “How can I share my wellness knowledge and be of value to the ALS community?

I started up my “ALS and Wellness Blog” with the goal of providing motivation, joy, and helpful tips and information. Soon, I received an email from the late Serena Lawrence at BioNews Services inviting me to write this “Living Well with ALS” column.

In fact, you’re reading my 120th column! Whew!

What made it all possible is BioNews Services, the parent company of ALS News Today. BioNews is a unique organization representing more than 50 rare disease communities. It’s virtual, with patient columnists, news writers, editors, and support staff scattered across many countries and throughout the U.S. We’ve been perfecting the art of working remotely way before the pandemic forced the rest of the world to work from home.

A big thank-you to BioNews editors for turning what I write into a polished product. And thank you, too, to my loyal readers — the patients, family, friends, and caregivers — for your continuing support and helpful comments.

Do I think I can write about 120 more ALS topics? You bet I can!

I believe the future for ALS patients is always improving. Although we don’t have a cure yet, studies have uncovered the simple things we can do to slow down the progression of our symptoms.

Paradigms for ALS are shifting, attitudes are changing, and ALS patients are living longer with quality lives. I want to write all about these and more.

So, Happy Three Years to Me!

Heck, when you have ALS, three years of doing anything is cause for celebration!

Does my future include more celebrations? I hope so. And I hope yours does as well. Remember, I believe that we can 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 Services, and are intended to spark discussion about issues pertaining to ALS.

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23 comments

  1. Diana Belland says:

    Congratulations, Dagmar! I look forward to reading you every week and often go back and re-read your previous columns for advice and inspiration. I wish you many more years of writing your wonderful column!

  2. John Russell says:

    Wish I could remember exactly when I discovered Bio News. It was at least 2 yrs ago & it was a research article that caught my eye. I soon discovered you along with Amanda Sifford and Rick Jobus.
    As you know I am in lock step with your philosophy of handling this challenge and have found your work useful, informative, and inspiring along with much appreciated levity. I’m looking forward to many more articles. So stop absorbing all this praise & get to work😊

    • Dagmar says:

      HA! Thank you John 🙂 I, in turn, have valued your many comments and insight… plus your humor. BioNews is a gem in our ALS community. I am proud to be affiliated with them and my fellow writers.

      And, John, as you always say, “Let’s keep on, keepin’ on!”

  3. Wendy Meehan says:

    Congratulations Dagmar, please celebrate this milestone well 🎉🥂🍾🍾. I love your work , your positivity, inspiration and great writing. I too hang out for all new articles and reread some of your earlier blogs and articles for answers when some days are tougher and need answers. A huge thank you from the bottom of my heart for being behind the only positive articles writtten about ALS / MND . I have been strongly recommending your work to everyone connected to MND I that l come in contact with.Take care and keep up the great work. xxxx

  4. Alex says:

    The sad truth is that while some als patients manage to survive for 10 years or even more due to slow progression, most als patients with medium\fast progression die in 3-5 years after first symptoms and it wont change untill some real cure will be found. So the moto “Living Well with ALS” sounds as a bad joke now but if it helps you and somebody else here – let it be.

    • Dagmar says:

      I’m sorry you feel that way Alex. You are correct that the prognosis for ALS patients has not changed over the years – – and that it is mainly due to not having a cure, yet. However, great strides have been made in discovering how to slow down the progression of symptoms; thus extending life to go beyond the often sited 2-3 year prediction. (For example, medication, mindfulness, exercise, and emotional well-being are all supported by research to help slow down symptoms)

      We can choose to live passively, in anger and self-pity, or to take an active role in the management of our health and life. We can see the glass as half-empty. I choose to see the glass as half-full.

  5. Louise Cort says:

    I see I’m just one of many many readers who have delighted in and benefitted from your optimism, humor, and solid advice. Along the way I often find myself asking, “How would Dagmar handle this?” Thank you for your inspiration!

  6. annie stein says:

    A number of years ago, I watched in amazement as a woman performed the most complicated, graceful yoga poses I have ever seen on the deck of the pool where I exercised daily. I eventually met that woman and was charmed by her grace, humor, and talent in all things crafty (is there such a word?)That woman was you
    When you informed me and our friends you had been diagnosed with ALS, I knew you would exibit the same grace and will that I had first seen in you and your yoga.
    Dagmar, I have moved away from where we met. I think of you often and know that my belief in how you would progress with this disease is a function of your specialness(again, is that a word?
    You are a special lady and serve as a role model for those of us that live with the uncertainty of any disease.

    • Dagmar says:

      Oh Annie! How good to hear from you – – and thank you for sharing your wonderful memories of our days at the GVR pool 🙂 We miss you! Stay well, my friend! Hugs to you across the miles.

  7. steve fishman says:

    I am fairly new to the ALS community…and even newer to your articles. I find them very informative and inspiring.
    Even though my symptoms started about 4 years ago I was not “diagnosed” with ALS until a year ago. Since that time I have found that there is a big difference between what I call the clinical side vs. the functional side of this disease. Clinically my doctor says I have a relatively slow progressing form, but I do not see this from a functional perspective. My ability to use my arms and legs has diminished considerably over the past year +. This makes me very frustrated…to see what I can no longer do. So…your articles are helping me cope with these frustrations.

  8. Denise Hagen says:

    There is so much negativity around an ALS diagnosis. Sometimes I just can’t read another discouraging article. I was so happy to discover your column after my husband was diagnosed in 2019. I truly appreciate and look forward to your columns because they bring a bright spot into an otherwise tough situation. Thanks for your positive attitude and sense of humor. Keep ’em coming!

  9. Susan Gray says:

    Congratulations, Dagmar on your three year anniversary!! I discovered you within weeks of my diagnosis and your positive articles have made all the difference in my world. You have definitely helped me to see the “glass half full” and I am so thankful. I look forward to another 120 articles. Thank you, thank you, thank you!!!

  10. Susan Gray says:

    Congratulations on your three year anniversary, Dagmar! I discovered you within weeks of my diagnosis, and it made all the difference in my world. You definitely helped me see the “glass half full” during a time when all the unknowns felt so bleak. Your positive articles have been so very appreciated. I look forward to 120 more!!

  11. Blane Ebersold says:

    Thank you so much for being so willing to share your experiences for the benefit of others. Every ALS Case is different and everyone must face a difficult path that was not of their own choosing. I am grateful that rather than hoarding your remaining time you are doing your best to help others in a similar situation cope and even occasionally find silver linings and humor along the way. My wife’s path turned out to be much shorter than yours but you gave us much inspiration. In spite of the difficulty, especially of her last year, we also shared some of the most beautiful moments of our entire marriage in that year. I had to constantly come up with solutions to situations you haven’t had to deal with yet. Please know that you can count on me as a resource if you need help coming up with solutions later on.

    • Dagmar says:

      Thank you so very much for your kind words Blane. I, and we all, send our heartfelt sympathies at the loss of your wife to ALS. And thank you for reaching out to share your solutions for living with ALS. Hugs to you across the miles.

  12. Angela Seitz says:

    Dagmar, you have helped me numerous ways: From the tip on getting a microphone headset to just seeing the humor in otherwise frustrating situations. Thank you for focusing on positive well-being no matter if we have ALS. Keep writing!

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