Reframing Our Approach with a New Kind of ALS Diagnosis

Reframing Our Approach with a New Kind of ALS Diagnosis

Although each patient faces a different journey with ALS, we all share the memory of the moment when we received our diagnosis. When I was told I had ALS, I expected to be assured not to worry and that I’d be back to normal life in no time.

Rather than mentioning rehabilitation, my plan of care included tracking my disease progression, promises of pain relief, and what seemed like a lot of durable medical equipment. It struck me that everyone was in a hospice mindset or had what felt like a deterioration management approach.

That’s when my 30 years of teaching wellness kicked in. I knew that to avoid falling into a mind funk, I’d have to mentally reframe my situation.

Aren’t we all slowly deteriorating due to aging? I pondered. Shouldn’t we be encouraged to age well?

Aging well is generally described as accepting your age and abilities while adopting a wellness lifestyle and maintaining a positive attitude. So why not apply the same approach to living with ALS?

Instead of being in a state of deterioration management, I decided to think of it as “maintenance management.”

Creating a positive memory at diagnosis

Rather than remember the words my doctor had spoken: “terminal illness, no cure, and only two to five years to live,” I reframed them into a new, more positive memory.

The following wellness-oriented approach to diagnosis from ALS Worldwide became my new memory:

“You have a serious neurological disease called Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease and Motor Neuron Disease. We don’t yet know the cause of this disease, but it affects the voluntary muscles of the body. Your voice is slurry and your legs are not as strong as they once were. But we can give you medications and supports that can help minimize the symptoms. There’s a lot you can do to help yourself. Exercise and nutrition help maintain muscle strength. Some new medications will help your speech and mood. With our excellent support staff and therapists to assist you, there is reason to be encouraged. Together we can help you live a full, productive life and maintain a sense of hope for your future.”

I shared the new me

My medical team at the ALS Clinic quickly learned that I didn’t have a victim mentality. While I accepted my illness, I was clear that I wanted to remain engaged with my life.

I brought a positive attitude to each visit, asking, “What do you suggest I do to maintain where I am at right now?” My doctor and medical team knew that I wanted them to be partners in my care.

My new mindset meant that my having to rely on a rollator or electric scooter or wear an ankle-foot orthosis weren’t signs of failure — instead, they were positive solutions that helped me to stay mobile and active.

Like-minded ALS patients

I began to meet other ALS patients online who, like me, were focused on creating positive, meaningful lives for themselves while living with ALS. Many of us are members of the ALS News Today Forums. We give each other support and hope and share solutions.

It’s a new and positive approach. And it’s one that I believe should be adopted by all of those who are involved in ALS care.

The moment of diagnosis can become an opportunity to create hope and explore potential.

Let’s age well 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 Services, and are intended to spark discussion about issues pertaining to ALS.

23 comments

  1. Pam Hunter says:

    Now this is my kind of article. Not the victim mentality. It is an upbeat article that about ALS. I am a fighter, I have ALS and this article was one of comfort for me. We have to be more positive about ALS. Thank you for such an upbeat article.

  2. Diana Belland says:

    What a great column post! It is just what I needed to read. I have been focusing a bit too much lately on what I’m not able to do rather than on what I can still do. I love this idea: “Aging well is generally described as accepting your age and abilities while adopting a wellness lifestyle and maintaining a positive attitude. So why not apply the same approach to living with ALS?”

    Thank you, Dagmar!

    • Jason says:

      When I was diagnosed dr. didn’t sugar coat a word. He said their is always a light at the end of the tunnel. In my case though the light happens to be a freight train charging towards me. Hell of a bed side manor huh.

  3. Debra says:

    Dagmar, I always find your articles so uplifting and I look forward to them. I was diagnosed last August and in the fast few months have noticed a more rapid decline, which has naturally upset me. I find the ALS clinic where I live very depressing and more interested in charting my decline than focussing on what I should still be celebrating. Wonderful articles like your’s make me determined to not give up and to make the best of every day and focus on my many blessings. Thank you so much!

  4. Dale Dalessandro says:

    My wife was diagnosed on April 3rd 2019. She, too is a fighter but this disease is her biggest battle in her 65 years. She and I are trying to remain positive, but as all of you know, it can be difficult. My wife’s most difficult symptoms are breathing and swallowing. Any suggestions on eating without chocking and gagging? We have learned that breathing can be a very difficult symptom to deal with. Again, any suggestions?

    • Fred Schreiber says:

      My son was diagnosed in January 2017 when he was 38. He has difficulty eating, swallowing, and he gags. He has to move his food portions to the left side of his mouth to handle them. My wife and I feed him small portions (half a teaspoon) at a time, although he can eat soft foods (like oatmeal and soggy foods) in larger quantities. Foods with flat sides like sliced things (cucumber slices, meat slices, lettuce, etc) get stuck to the roof of his mouth and make him gag. Sharp-edged foods (crackers, leaving the skin on cucumber slices, etc) are gagging triggers. He has a lot of saliva running down the back of his throat, which interferes with swallowing, but he doesn’t have the muscles left to expel the saliva. Some foods (like tomato sauce) make him very phlegmy. Eating is very slow because we have to watch out for gagging, so his food is usually cold before he finishes, so he gets disgusted because it got cold.
      My son just started going to a physical therapist in Morristown, NJ who specializes in head and throat. During the very first visit, my son was able to stick his tongue out for the first time in months. I hope the PT person can help him with the eating, speaking and breathing.

  5. Clare Crawley says:

    Great article – I found the words expressed at my diagnosis were disempowering and like being consigned to no future . I have taken the view that I will try all I can to be the best I can – doesn’t mean I have not had some down times but one has to live with hope in ones heart – I am a solo mother with a 16 year old daughter whom I love hugely and being able to support her and make her feel the future holds good as well as the not so good is so important . I find your articles so often hit the mark – thank you for sharing

  6. Alex says:

    Sorry to say it but I feel sick reading articles like this. I mean we all know that als will kill us quite soon in quite an awfull way and being positive about it is something beyond my understanding. I am not the one who surrender easily, I was diagnosed a year ago and still
    go to office everyday and try to live full life but I know it wont last long as als progressing (sure it is progressing). I am just 38 now and not really sure whether I will reach 40 or not – being positive about it? No way. I look at it as on the fight that I cannot win… I will fight though.

  7. Bill says:

    I am a huge advocate for positive thinking and attitude. It is very difficult to try to fit us all in one path for “coping”. With me my progression is very slow and although I know that could change easily, a positive attitude and focus on what I can do is easy. Seeing others go so quickly, I can understand their journey is a lot different from mine today. I can understand their difficulty with positive attitude. Each of our own fundamental coping abilities are a lot different. There is probably no right way, but hopefully we are each getting some guidance to ease our path. Hopefully, our Dr and clinic providers are in tune to our personal needs.

  8. Jeff says:

    Given the option of dying from ALS and living with ALS, I choose living. No one knows how long we’ve got, so I am making the most of every day. My bucket list took the front row, and we are checking things off left & right. Do what’s right for you. No one can tell you what that is. YOU decide!

  9. Richard Carraher says:

    No one mentions God. I know the only way I will be healed ( totally) from ALS is God’s mercy and grace. I know one day I will be whole n healthy.

    • Dagmar Munn says:

      Sally Ann – – it depends on what particular symptoms the person is having. For example, excess saliva, dry mouth, breath control, etc., can have possible medications to assist. I refer you to your physician for specifics. Sometimes speech issues can be alleviated by change in posture, tongue placement for consonants and vocal pitch.

  10. Nicola says:

    Thank you for this positive article. These have been exactly my feelings since diagnosis. Onwards and upwards!

  11. Terry says:

    Fantastic article, thank you for sharing your ALS approach. My wife was diagnosed 6 months ago, with symptom onset (bulbar) 13 months prior. The news was devastating, but my wife and I believe that it’s not what you get in life, but rather what you do with it – I can tell you her positive outlook is inspirational and her personal game-changer. Our approach these days is quite simple, the end is not today and since tomorrow is guaranteed for no one, let’s live as many tomorrows as we can today!

    I am only a caregiver in this situation, but I feel for all who have responded to your beautiful post. You are all in my prayers!

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