Stuck in the Past? Here’s How to Reframe Your Future
Before ALS, whenever I thought about the future, I assumed my life would continue in a state of health and happiness, filled with lots of interesting activities. But in 2010, when I learned I had ALS, thinking about my future became very dismal and frightening. My mind would imagine all the worst-case scenarios of ALS, and I’d try to predict which one would happen to me.
I was ignoring one of life’s basic truths: No one can predict the future.
ALS brings us many challenges, from symptom progression to changes in daily routines and responsibilities. ALS also challenges emotional well-being and coping ability.
Many ways to cope
At first, I “coped” by worrying all the time. That led to anxiety, stress, and lost sleep. My energy was low, which caused me to worry even more about what ALS might be doing to my body.
Next, I tried to avoid thinking about the future altogether. I created mental walls and got stuck in what I call the ALS waiting room. But living day to day and resisting change only made life harder on both my caregiver and me.
I needed to restore balance to my emotional well-being. I needed to get rid of worry and avoidance and learn a healthier way to think about my future. I needed a plan.
Create a plan
A quote helped me stay on course: “You can’t go back and change the beginning, but you can start where you are and change the ending.”
My approach was to reframe how I thought about my future; to believe that I could be of influence and use available resources to improve the story in my head.
I asked myself, “What can I do today that will help my future self?”
- Practice living with wellness: Eat healthy foods, exercise daily, get quality sleep, manage stress, and take recommended medications.
- Attend my ALS clinic: Ask questions and follow advice offered by the medical team.
- Use assistive devices when needed: Look ahead to what I might need shortly.
- Stay informed: Learn about medical advances by keeping in touch with online ALS groups, and attend an ALS support group.
- Discuss concerns and options with my caregiver, family, and friends: Be open to their advice and suggestions.
Healthy coping skills include optimism, goal-setting, and confidence in adapting abilities. Although we can’t change an ALS diagnosis, we can change how we think about it. We can live well while living with ALS.
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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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Comments
Eileen Coyne
YEAH - go Dagmar. Your brain is so powerful and I am so blessed to have you in my life! What a wonderful role model you are to me.
Dagmar Munn
Thank you Eileen :-)
Dr. D. N. Yadav
No headway in ALS cure/treatment, how long research will go on experimenting with rat/mise? ALS community is asking researcher and related professsionals. I find it pathetic. Even without regulator permission some are charging excessive fees for medicines and treatments. We are being cheated everywhere now and then.
Dagmar Munn
I agree and understand your frustration Dr. Yadav. We are all waiting. Current treatments help alleviate symptoms, while the cause of ALS remains a mystery. I applaud the many institutions who persevere despite so many potentials that only lead to dead-ends. Hopefully the cause and then treatment and prevention will come to us soon.
Kathryn Juby
My mother passed from ALS in 2010. We also had 2 friends that grew up in the same neighborhood pass away from ALS. One lived across the street, one lived one block away. And this is just who we know about... In Casper, Wy.
Dagmar Munn
Kathryn - - I am so sorry you lost your mother to ALS. It seems that nowadays we learn about more people having ALS. Is it due to better diagnostics or increased prevalence? Either way, we need a cure and prevention!
Nancy Semon
I thought that ALS was relatively rare, but after my sister was diagnosed with it last January, I've heard from so many friends who either had a relative or knew someone with it. Also, I believe in my gut after many months of reading articles about ALS, that there is an environmental link. How else can one explain your mother and friends who lived in your neighborhood and had ALS? I wish that researchers would look more closely at pockets where there are clusters of ALS cases.
Dave Reckonin
"Current treatments help alleviate symptoms,"
There are NO effective treatments.
Riluzole is a Carpet-Dust Placebo.
More research = more cell information = more bafflement.
Dagmar Munn
Dave - - we all join you in our anger and frustration at the slow progress of research. However, I believe that there are good symptom (pain, spasms, saliva, etc.) treatments available for ALS patients. These help .... although yes, we are still waiting for the cure. (and prevention)
Darryl Ferges
Love reading your strategies and coping with ALS Dagmar. I have heard you refer to and wonder more what you think of Original Strength. I keep finding valuable knowledge and practices with their story. How and why we can move, continues to be foundational in the neuroscience I keep trying to uncover.
Dagmar Munn
Thank you Darryl. Original Strength? I love their program! I have been following them and doing their RESETS since the first year of my diagnosis (8 yrs now). I attribute my continued mobility and energy to doing their fundamental movement patterns.(www.originalstrength.net) There should be more research and explorations regarding neuroplasicity and neuroscience of the body-brain. In fact, I keep in contact with Tim from OS and keep him updated on my progress. Thanks for asking! ...and keep moving!
Carolyn Vaudrey
Hi. My husband was diagnosed in 2011 and is still going though he is worsening. We always made sure we had things like Wheelchairs commodes handles etc in place before we needed them. We also take one day at a time. There is a granddaughter getting married in March and a new great grandchild to be born in June. So we have some things to keep aiming for. So far it's been quite a journey.
Valerie Hays Klein
As the spouse of a loving, brilliant, creative & witty man, once afflicted by ALS, it became apparent to me that I had to be faithful to the truth of who he was and not the notable changes appearing each day.
It brought new meaning for “to have & to hold.” We had to reevaluate what in Truth we “had” to give & what we could “hold” for each other.
One year Niel wrote an unfolding Christmas Card... each layer asked a new question.
“What if the only gift you could give for Christmas was something you made? What would you make?
What if the only gift you could give for Christmas was something you said? What would you say?
What if the only gift you could give for Christmas was something you did? What would you do?
What if the only gift you could give for Christmas was you? What would you be?”
ALS is a journey about learning to understand what in Truth is meaningful, putting one’s faith in Its expression & then being what It is that increases the value of living....for everyone involved.
Merry Christmas, from Niel & Valerie