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<a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> for the past 14 years has taught me an important lesson on adapting to a new way of life. Before <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, my life was filled with carefree movement. I spoke with ease and enjoyed endless physical energy. Now, even though my <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a> include weak legs and feet, plus speaking and swallowing difficulties, I still haven’t given up on participating in life. So I depend on the strategies and tips I’ve picked up along the way.
I’m happy to share a few of those with you. Before I do, because ALS affects patients in different ways, there’s no one-size-fits-all process to living with the condition. I wish there were. We all do. I suggest you read through my various examples and think about how you can adapt them to your situation.
<h3 class="p2">Predictable days</h3>
I’m a believer in <a href="https://alsnewstoday.com/columns/how-my-daily-routine-helps-me-live-with-als/">having a daily routine</a>. Knowing what lies ahead helps me feel relaxed and enjoy whatever activity I do. However, if my calendar has an out-of-ordinary day scheduled, then I set about preparing and planning as if it’s a trek up Mount Everest.
But ALS can be unpredictable. To help me answer the question, “What if?” As in, “What if my symptoms get worse?” I made a <a href="https://alsnewstoday.com/columns/prepare-prevent-strategy-living-with-als/">list of questions and possible solutions</a>. Having the list at the ready has been an emotional relief.
[recommended-reading id=86766]
<h3 class="p2">Banking my energy</h3>
Most ALS patients are told to conserve their energy. When I heard this advice, I felt I was being told to sit and do nothing. I decided to change the phrase to don’t waste your energy, because I knew I needed to use it somewhere else.
For example, we <a href="https://alsandwellness.blogspot.com/2020/10/how-i-made-my-shower-safer.html">remodeled the shower area</a> in the bathroom to accommodate a roll-in chair. That way I don’t have to waste energy standing with a death grip on the grab bar and wash my hair with the other hand. 
Next, I added a chair to the area where I dress and moved all the clothing I wear most often to within easy reach. I now choose clothes for their comfort and the <a href="https://alsnewstoday.com/columns/how-manage-als-clothing-problems/">ease of getting myself dressed</a> over struggling with zippers and fiddly buttons.
What do I do with my so-called extra energy? I use it for my favorite activities such as adding in exercise movements throughout my day, knitting scarves, and typing on my computer.
<h3 class="p2">Rolling with ALS</h3>
Not wasting my physical energy also involves intentional trade-offs. I used to feel embarrassed at having to use a rollator to help me walk. But it’s a safe and energy-saving alternative compared to lurching through the house grabbing onto furniture. When I’m out and about, I’ve learned that pushing a rollator across parking lots or through the grocery store leaves me whooped. But <a href="https://alsnewstoday.com/columns/adventures-mobility-scooter/">riding a mobility scooter</a> gets me where I need to go and saves my leg strength. These helpful adaptive devices don’t label me as &#8220;old&#8221; or &#8220;less than.&#8221; They keep me participating in life.
I hope my tips and strategies spark ideas for your creative solutions. I’d love to know what you do. Please share yours in the comments below. Together we can help each other learn to live well while <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

The tips and strategies that help me participate in life

Is anyone else bombarded by social media messages to set goals, make New Year’s resolutions, or create a bucket list for 2024? I sure have been. In my pre-<a href="https://alsnewstoday.com/what-is-als/">ALS</a> days, I heeded the reminders. I looked forward to breaking in a brand-new desk calendar and filling it with my activities and goals for the coming year. Heck, I even had three- and five-year goals. But now, like most other ALS patients, I plan my life one month at a time.
However, I have found success with a unique twist on goal-setting, a practice I began at the beginning of 2022. <a href="https://alsnewstoday.com/columns/my-2022-new-years-intention-simply-be/">I challenged myself to simply be</a>. To be in the present moment, to be aware of myself and the people and things around me. And to not get pulled into the distractions or negative vibes I might encounter.
A simple intention, and one that I soon discovered to be a darn difficult thing to accomplish.
[recommended-reading id=86132]
<h3>What happened?</h3>
Lest you think I spent the year of my personal challenge leisurely swinging in a hammock, or that my face held a perpetual Zen monk’s grin, distractions were constant and everywhere. But I was determined to keep at it another year, so I created several small strategies to help me get through 2023.
Recalling my days as a former yoga instructor, I incorporated the <a href="https://alsnewstoday.com/columns/life-with-als-is-about-balance-effort-ease/">concept of effort and ease</a>. If I felt frustrated by how much effort was needed to do even simple things, I’d find solutions to make them easy again. An electric toothbrush and Velcro closures on my shoes conserved the energy in my hands. This meant I could use my hands for my favorite activities, like knitting or typing <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">this column</a>. The time spent doing enjoyable things was time I didn’t spend distracted thinking about my ALS.
When I began worrying that time was slipping away and I wasn’t keeping up with productive projects, I <a href="https://alsnewstoday.com/columns/how-ive-benefited-from-finding-flow-with-my-als/">explored the mental state of flow</a>. Whenever I noticed that I&#8217;d lost focus or wasn’t paying attention, I used personal flow awareness practices to bring my mind into the present moment.
Finally, because so many who <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a> expect things to go wrong and so focus on the negative, I decided to begin noticing <a href="https://alsnewstoday.com/columns/when-things-go-right-my-week-living-with-als/">when things went well</a>. In between the usual daily calamities and near calamities, I looked for moments of calm. There were so many more than I&#8217;d anticipated. What a gift not to miss these gems hiding all around me. 
<h3>End-of-year results</h3>
Was it worth it? You bet it was. I credit these strategies with helping me achieve more time being mindful and in the present moment. I felt less stressed, stopped unnecessary worry, and maintained a positive attitude about my life.
The funny thing was that I realized my simple intention transformed itself into a full-fledged goal and is now a permanent part of my day. That’s how just one small change, one small step of daily progress, can become a habit.
Try setting an intention to &#8220;simply be.&#8221; It’s one more strategy that will help you learn how to live well with ALS.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

How setting an intention to ‘simply be’ became an ALS goal

Every once in a while, a common question circulates on <a href="https://alsnewstoday.com/what-is-als/">ALS</a> social media sites: “What would you do differently if you were diagnosed today?” The replies are interesting and often filled with regrets, such as trips not taken or home modifications made too late.
I’ve participated in these discussions and even wrote a column about my own <a href="https://alsnewstoday.com/columns/3-mistakes-i-made-after-my-als-diagnosis/">first-year mistakes</a>. But now that I’m in my 13th year of <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, I believe there’s more value in studying the things I think I did right, rather than those I did wrong.
When I was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, I felt like the rug had been pulled out from under me. But instinctively, I knew I had to get up and keep going. What helped me rebalance my shattered emotions was relying on the wellness principles I&#8217;d taught to others during my professional years. These included the <a href="https://nationalwellness.org/resources/six-dimensions-of-wellness/">Six Dimensions of Wellness</a>, a change in perspective, and a simple strategy to combat daily stress speed bumps.
<h3>Balancing my life dimensions</h3>
Developed in the 1970s by Dr. Bill Hettler, co-founder of the National Wellness Institute, the Six Dimensions of Wellness model represents elements and behaviors that anyone can use to create their own path to optimal living. The six dimensions are occupational, physical, social, intellectual, spiritual, and emotional.
Because ALS brings so much focus to our physical needs, often consuming the majority of our energy and time, the physical dimension can overtake the other five. Our life can feel unbalanced, and we may lose our sense of self.
Figuring out how to stay engaged in all six dimensions was a challenge, but I’m glad I did it. As a matter of fact, my experiences in this endeavor make up the bulk of my &#8220;<a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">Living Well With ALS</a>&#8221; columns. I encourage you to explore them all.
[recommended-reading id=83619]
<h3>Learning to pivot</h3>
Another challenge for me was finding a new purpose, or simply something meaningful to fill my days. I noticed many ALS patients had a warrior mindset. For them, each day was a battle, and accepting change was a defeat. Then there were the standout patients who accepted their diagnosis and moved on with their lives. They found a way to continue participating in life, remaining noticeably positive, optimistic, and hopeful. I wanted to have that attitude, too.
So I worked hard to mentally embrace the changes happening to me and <a href="https://alsnewstoday.com/columns/pivoting-positivity-after-diagnosis-adjusting/">gave my goals a pivot</a>. Rather than being overwhelmed with what I could no longer do, I considered what I could accomplish. The groups and clubs I belonged to still needed help; my new limitations just meant I’d be helping in different ways. Writing online newsletters, helping track memberships, and even learning to build a website were all <a href="https://alsnewstoday.com/2019/02/12/living-purpose-projects/">projects that helped me find purpose</a>.
<h3>Snuffing out daily stressors</h3>
Despite my lofty goals and mental focus, those pesky little speed bumps continued to pop up, often at the worst of times. Dead batteries, Velcro that sticks to things it shouldn’t, a printer running out of ink, and more. I think you’ve had these, too.
The <a href="https://alsandwellness.blogspot.com/2015/08/how-what-who-als-stress-management.html">simple technique</a> I use is called “checking in.” It’s basically asking yourself three questions: How do I feel? What do I need? Who can help me?
I ask them when speed bumps happen to help diffuse my growing anger. I ask myself those same three questions 10, sometimes 20 times a day. And every time I answer, I have more patience when things get muddled. And I’m calmer when they don’t happen at all.
Looking back, I’m proud I followed these strategies early on with my ALS, and I hope they can be of help to you, too. Let’s continue to help each other learn to live well while living with ALS.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Tag: strategies

The tips and strategies that help me participate in life

How setting an intention to ‘simply be’ became an ALS goal

Reflecting on what I did right after I was diagnosed with ALS