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“So tell us, Dagmar, what’s your latest project?”
The question came from my neurologist as we chatted during my recent <a href="https://www.als.org/local-support/certified-centers-clinics">ALS clinic</a> visit. She asked not only for herself, but for the medical student who was also in the room.
As I prattled on, part of my brain reflected on how after 12 years of clinic visits, I&#8217;ve become comfortable helping my doctor educate the many students who shadow her. The way I see it, sharing my perspective with medical students early in their education is a valuable way to help raise awareness of <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
Since at this visit, like previous ones, I didn’t have <a href="https://alsnewstoday.com/symptoms-of-als/">symptom changes</a> or questions for my doctor, we were able to spend the time in relaxed conversation.
[recommended-reading id=23378]
<h3>Fielding the queries</h3>
What type of questions do medical students typically ask me? Simple ones, like how my <a href="https://mobilitysaves.org/docs/orthotic-devices.pdf">ankle-foot orthoses</a> (AFOs) and rollator help me stay physically mobile, and not-so-simple ones, like how I keep my positive attitude after 12 years of <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
But even when discussing my AFOs and rollator, I feel it’s important to add that maintaining my physical fitness when not using them contributes to my ability to use them better. This opens the door to talking about how ALS changes the way I exercise. Instead of long, tiring periods of daily exercise, I do <a href="https://alsnewstoday.com/columns/movement-exercise-daily/">several preplanned sequences</a> throughout the day.
Plus, when the clinic physical therapist gives me exercises to help improve my gait or maintain my strength, I go home and do them. I don’t do them for three days and quit. I add the recommended exercises to my daily to-do list and check them off when completed.
“So many patients just give up and quit,” my neurologist added. “I know our clinic staff appreciates knowing that patients follow through with our recommendations.”
<h3>Creating reasons to live</h3>
This segues into the second question, involving my ability to keep a positive attitude. I point out that AFOs and rollators are wonderful, but unless I can find meaning or <a href="https://alsnewstoday.com/columns/living-purpose-projects/">purpose in my life</a> — giving me things to do, people to see, and places to go — these adaptive tools are of little benefit to me.
My motivation comes from having projects and events on my calendar, things that I can spend time planning and look forward to completing.
I turned to my neurologist and said, “You asked me what my latest project was. Well, this clinic visit is it! Because as you know, <a href="https://alsnewstoday.com/columns/i-treat-my-als-clinic-like-olympic-challenge/">I treat my ALS clinic like an Olympic challenge</a>!”
“And then,” I added, “when I go home, I’ll give myself a <a href="https://alsnewstoday.com/columns/als-obstacles-revive-daily-life-routines/">few days to recover</a>, look at my to-do list, and get to work.”
<h3>A few more reflections</h3>
I know I’m only one of the many ALS patients the medical students are able to meet during their clinic visits. We each have a unique journey with ALS, a different story to tell, and varied <a href="https://alsnewstoday.com/social-clips/six-coping-strategies-for-als/">coping strategies</a>.
But I believe that while we&#8217;re learning to live well living with ALS, we should also take advantage of every opportunity to raise awareness along the way.
<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, <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 I raise ALS awareness, even at my ALS clinic

On the ski trail the other afternoon, I was feeling discouraged. I hadn’t slept well the previous couple of nights and had a low-grade headache, but I willed myself to keep going. Exercise is good for my body, and <a href="https://alsnewstoday.com/columns/how-daily-nature-therapy-helps-relieve-my-stress/">being in nature usually soothes my mind</a>. They&#8217;re two of my biggest coping mechanisms in dealing with <a href="https://alsnewstoday.com/columns/breathe-stress-relax/">the stress</a> of living with my husband’s <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
I skied my favorite path through birch trees, but the forest didn’t work its magic on me that day.
But then my phone dinged. I opened a message from a member of an ALS Facebook group. On occasion, people reach out to me because we&#8217;ve been at this for so long.
[recommended-reading id=80134]
It’s been almost 13 years since Todd’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a>. I remember those early days when our life had derailed. Todd was 39 years old. I was 32. We had a 4-year-old and a 9-month-old. The diagnosis was devastating, and I couldn’t imagine how we&#8217;d ever be OK. It was helpful for me to talk with another spouse caregiver who&#8217;d been at this for years.
Now, I&#8217;m the veteran spouse caregiver. I feel like we’ve navigated the last decade well, considering the circumstances. Life with paralysis is hard, and it only gets harder with a progressive disease.
Over the past year, Todd has needed <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">breathing support</a>, and he&#8217;s since become homebound and sometimes counts the hours until bedtime. We&#8217;re often bored day to day, interrupted with occasional frenzied activity to clear his lungs. Life increasingly feels like a slog for both of us.
What could I offer this other caregiving spouse in my discouraged state? I came up with a few things that rang true, even in my funk:
<ul>
<li>Give yourself time to process and grieve. It took both of us at least a year to come to some sort of acceptance.</li>
<li>If your spouse still has functionality, take a special trip if you can. Make memories and take a lot of pictures. <a href="https://teamgleason.org/adventure/">Team Gleason</a> helps people with ALS fund trips.</li>
<li>It’s hard to live with a disease that gets progressively worse, but there have been good moments in our years <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>. And for those of us who have <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">children</a> (or grandchildren, nieces, or nephews), we can find vicarious joy in watching our kids experience new things and grow up.</li>
</ul>
Sometimes it’s easier to find perspective for others than for oneself — and after sending my reply, I felt my spirits lift a bit.
<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: experience

How I raise ALS awareness, even at my ALS clinic

Supporting those new to ALS with lessons from my experience