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On Feb. 17, a <a href="https://www.facebook.com/FACTRelief/">party</a> was thrown in Atlanta, Georgia, in celebration of <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patients and their caregivers. It was a chance to promote awareness about the ongoing needs of the victims of this treacherous and unrelenting disease.
A party for ALS? Why not?
Like the <a href="https://alsnewstoday.com/news/ice-bucket-challenge-dramatically-affected-als-fight/">Ice Bucket Challenge</a>, the ninth annual <a href="http://www.quietheroparty.com/the-cause">Quiet Hero Party</a> displayed both sides of the ALS journey: the tragedies and the triumphs; the victims and the victories; the burdens and the blessings.
Upon hearing about the $200 million or so raised by the Ice Bucket Challenge, I called for <a href="https://alsnewstoday.com/columns/urgent-call-funding-als-research-patient-support/">some of that money to be given to affected families</a>. Care for an ALS patient can cost as much as $150,000 per year, an unthinkable amount for most people to accommodate.
Little did I know that, in partnership with the Quiet Hero Party, the organization <a href="https://factrelief.org/">FACT Relief</a> does just that. FACT Relief, which stands for Families and Communities Together Relief, gives direct grants to ALS patients and others facing injury or disability to help with their medical expenses. Please watch the informative video at the organization’s website to learn more about their work.
[recommended-reading id=89678]
<h3>A delicate balance</h3>
Our family was one of two recognized at this year’s Quiet Hero Party, and even though I couldn&#8217;t attend, <a href="https://alsnewstoday.com/columns/who-cares-for-als-caregiver/">my wife, Sylvia</a>, spoke on our behalf. My daughter and other family members were there as well.
It is comforting to know that organizations understand the importance of raising funds for individuals in addition to cures. Oftentimes the victims get lost in the hoopla of fundraising events. When the excitement ends for the participants, ALS sufferers go back to the harsh reality of physical, psychological, and <a href="https://alsnewstoday.com/news/als-costs-reach-1-02-billion-each-year-us-study-finds/">financial struggle</a>.
Something is disconcerting about the delicate balance between finding a cure and <a href="https://alsnewstoday.com/columns/placing-nasal-pillows-mask-efforts-improve-husbands-comfort/">providing comfort</a> to the victims. I know it&#8217;s a difficult task, and I truly appreciate all of the organizations and people who support families and search for answers.
Getting back to the Quiet Hero Party, it was a fantastic affair. My wife showed me a video of portions of it and I await more from my daughter and others.
I was impressed by the organizers and the professionalism in how they produced the event. The warmth and sincerity in that room were palpable. I know it was a relaxing occasion because of how easily my wife took to the stage.
Despite being unsure if she could do it — public speaking is not her forte — she did an outstanding job. I am so proud of her for stepping out of her comfort zone. Maybe being an ALS spokesperson is in her future.
Kudos to FACT Relief for throwing a great party and thanks for inviting us. Here&#8217;s to next year&#8217;s party, and more importantly, the valuable work you do throughout the year.
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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.

FACT Relief, Quiet Hero Party bring needed ALS awareness, support

As I&#8217;ve pointed out several times in <a href="https://alsnewstoday.com/outspoken-james-clingman/">this column</a>, <a href="https://alsnewstoday.com/columns/lets-step-up-advocacy-efforts-als-research/">public awareness of ALS</a> is vital to obtaining and sustaining progress in finding solutions to the myriad issues associated with the disease.
Have you ever heard of <a href="https://alsnewstoday.com/news/fda-final-approval-decision-brainstorms-nurown-als-due-december/">NurOwn</a>? It&#8217;s a stem cell therapy that is being considered for approval for <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patients by the U.S. Food and Drug Administration. <a href="https://iamals.org/updates/guide-to-submitting-written-testimony-to-the-fda-about-nurown/?emci=eebcc87f-5f40-ee11-a3f1-00224832eb73&amp;emdi=17a2b61f-0941-ee11-a3f1-00224832eb73&amp;ceid=26148685">Public comments are being solicited</a> prior to Sept. 20 from victims and others regarding our experiences with ALS.
I&#8217;m sure most patients and their families know about stem cell therapy and the hope it brings. But there are many in the general public who do not. It is critical that as many people as possible have all the information available, because anyone at anytime can contract ALS. With that stark reality in mind, I encourage everyone to send in comments on this important next step.
[recommended-reading id=86121]
<h3>Calling in the cavalry</h3>
Speaking of comments, because of this column and its publisher, <a href="https://bionews.com/">BioNews</a>, I was invited to participate as a panelist in an ALS Zoom workshop about ways to <a href="https://alsnewstoday.com/living-with-als-2/">live well with ALS</a>. It was a three-hour session sponsored by the <a href="https://www.nationalacademies.org/">National Academies of Sciences, Engineering, and Medicine</a> via its ad hoc committee on ALS, called <a href="https://www.nationalacademies.org/our-work/amyotrophic-lateral-sclerosis-accelerating-treatments-and-improving-quality-of-life">Accelerating Treatments and Improving Quality of Life</a>.
My fellow columnists and I never know exactly who reads what we write, but we are grateful to have the opportunity to share information through BioNews and <a href="https://alsnewstoday.com/">ALS News Today</a>. Ideally, this offers us a chance to be involved in solution-based initiatives.
In the workshop, my wife and I spoke about &#8220;Understanding Living with ALS,&#8221; along with three other patients. It was both inspiring and informative for us and my daughter, who watched the discussion. The main topics of our session were accessibility to services, clinical trials, <a href="https://alsnewstoday.com/columns/who-cares-for-als-caregiver/">caregiving</a>, and maximizing patients&#8217; capabilities prior to and during the <a href="https://alsnewstoday.com/stages-of-als/">latter stage of ALS</a>.
My panel included two women in their 20s and 30s and one other man in his early 60s. Of course, we had different issues, which helped us look at ALS from different angles. Especially refreshing for me was hearing the young ladies speak about their positive outlook on life. Extensive traveling by one and caring for a baby by the other were awe-inspiring.
On the other hand, I was saddened by the situation voiced by the male patient. He is facing the possibility of his children getting ALS because he has the <a href="https://alsnewstoday.com/forms-of-als-familial-als/">familial type</a>. Knowing that ALS has a 100% fatality rate is one thing for us to endure as patients, but passing it on to our children is a heavy burden to bear.
On a positive note, while there is much room for encouragement among those affected by the ravages of ALS, the public at large can be hopeful and helpful in this fight for victory. Help is surely on the way, and I look forward to the day when we can say, &#8220;The cavalry has arrived.&#8221;
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Note: ALS News Today 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.

Why I’m fully committed to promoting ALS awareness

A few months after I learned I had <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, I was invited to participate in a walkathon to help raise funds for the <a href="https://www.als.org/about-us">ALS Association</a>. I’m sure my curt reply of “No, thank you” came as a shock to the person inviting me.
At the time, I had just begun using a rollator to help me walk, and couldn’t imagine myself trekking around the high school track where the event was being held. Never mind the suggestion that I could just show up and cheer from the sidelines. Nope! I could barely pronounce the full name of the disease, let alone be expected to fundraise for it. Little did I know how involved I’d be in raising awareness and funds — and in very creative ways — in the following years.
Let me share a few examples, along with the lessons I learned along the way.
<h3>Sharing my ALS story</h3>
One afternoon I was surprised by a phone call from my neurologist inviting me to speak at a local ALS fundraising event. The thought of sharing my personal ALS story with total strangers was intimidating. My mind raced as I wondered exactly what my ALS story was. And if I told it, would I break down in a puddle of tears? Nevertheless, I agreed to do it.
At the event’s conclusion, I felt so happy I was there. That evening, I spoke from the heart, and in return, I felt the compassion in the room and the support surrounding me. My husband and I had a great time and joined in the cheers when the announcement came at the end of the evening that the event had reached its monetary goal.
I learned that, yes, it takes gumption to tell your story. It’s hard to talk about a disease you’re living with and the changes it causes to your life. But people are interested. I’ve learned that opportunities to speak up are everywhere, and it doesn’t have to be a formal event. Simple conversations happen all the time.
[recommended-reading id=84196]
<h3>Entering a contest</h3>
My personal blog, &#8220;<a href="https://alsandwellness.blogspot.com/search/label/About%20Me">ALS and Wellness</a>,&#8221; was only two years old when May rolled around and it was <a href="https://alsnewstoday.com/als-awareness-month/">ALS Awareness Month</a> once again. Still uncertain about how I could participate, I discovered a unique opportunity: <a href="https://alsnewstoday.com/columns/spread-awareness-taking-first-step/">I entered a Best Health Blog Contest</a>. If I won the $1,000 prize, I decided I’d donate it to my local ALS Association.
The contest began with over 100 health blogs representing all kinds of health conditions. Every day for two weeks, I sent short, cheery daily messages to my friends with a quick fact about ALS and the link to vote. At the bottom of the email, I suggested they share my daily messages with their friends. To my surprise, they did!
By the last few days of the contest, mine was among the top three blogs. It was a close race, but with a last push of votes from ALS patients, friends, and friends of friends, my &#8220;ALS and Wellness Blog&#8221; won!
Not only did it feel good to present a $1,000 donation to the ALS Association, but I had also become comfortable talking and writing about ALS. The experience helped me accept the disease and shift my focus to finding ways to successfully live with it.
<h3>When things came to a standstill</h3>
Then there was the year 2020, when, due to the pandemic, ALS Awareness Month faced its biggest challenge. In-person events were shelved as everyone sheltered in place. But ALS doesn’t stop, and neither do resourceful event organizers. I felt pride in their creative solutions.
Keynote speakers presented online, and walking teams went online as well to log their points. Businesses donated a portion of their sales to ALS-related organizations. I had fun discovering their unique campaigns, such as <a href="https://www.dutchbros.com/drink-one-for-dane">Drink One for Dane</a>, <a href="https://a4a.als.net/">Ales for ALS</a>, and <a href="https://inkedforals.com/">Inked for ALS</a>, and encouraging my readers to support them.
Maybe you’re not quite ready to jump into one of the traditional ALS awareness events popping up this month, but we need you. The perfect time to begin is now, and there are lots of easy ways to participate.
Together we can raise awareness. Together we can create a world where we can live well without having to <a href="https://alsnewstoday.com/living-with-als-2/">live 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.

Lessons learned from my ALS awareness experiences

I love inspirational quotes and sayings. Throughout my life, I’ve stumbled upon passages from books or snippets of speeches from public figures and recognized them as a helpful way for me to understand or think about a current challenge in life. In some cases, they’ve served as mantras — easy to recall, and empowering to think about when I need to draw on inner strength.
Before my late husband, Jeff, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, I had a framed quote in my kitchen that read, “Do one thing every day that scares you.” <a href="https://alsnewstoday.com/columns/facing-fears-als-show-us-whats-important/">Facing fears</a> made me feel strong, vigorous, and healthy until Jeff’s diagnosis, when I discovered that strength is internal, and emotional health can be just as important as physical health — if not more. I retired that quote and haven’t displayed it since.
After Jeff died in May 2020, my first instinct was to put as much distance between me and <a href="https://alsnewstoday.com/what-is-als/">ALS</a> as possible. ALS wasn’t Jeff; it didn’t define him, and I didn’t want this cruel disease to define the memories of our life together. What I quickly realized was that I missed the ALS community that had so fiercely supported us, our hopes, and our quest for <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatments</a> and cures. And so, I returned.
[recommended-reading id=84255]
Today, my favorite mantra is one you’ve likely seen or heard before: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” This quote by the late American anthropologist <a href="https://anthropologyreview.org/influential-anthropologists/margaret-mead-anthropologist/">Margaret Mead</a> inspires and drives many of us in the tightknit ALS community.
While some might view us as relatively few compared with other disease communities, we are mighty. The ALS community comes together to celebrate wins like the passage of <a href="https://www.fda.gov/news-events/public-health-focus/accelerating-access-critical-therapies-als-act-act-als">new legislation</a> and <a href="https://www.fda.gov/news-events/press-announcements/fda-approves-new-treatment-option-patients-als">approval of drugs</a>, share sorrows when we lose a member of our group, support those newly diagnosed and their families, and provide love and support however we best can.
There are many worthy ALS organizations with which to align; I volunteer with <a href="https://iamals.org/">I Am ALS</a>, a grassroots advocacy organization. Due to our geographic distance from one another and the challenges of travel with ALS, most of our encounters take place virtually, via video call. I Am ALS has, among others, <a href="https://iamals.org/action/">teams</a> for veterans, legislative affairs, community outreach, and even a writers’ group, and we meet weekly via Zoom. Occasionally, though, we&#8217;re able to connect in person.
Last week was one such week.
<h3>A rare and special gathering</h3>
For several days, many members of the <a href="https://alsnewstoday.com/columns/i-am-als-community-provide-vital-support/">ALS community</a> gathered on the National Mall in Washington, D.C., for advocacy, awareness, and fellowship. <a href="https://weartv.com/news/local/northwest-florida-woman-travels-to-washington-dc-to-raise-awareness-for-als">Volunteers planted 6,000 small blue flags</a> on a grassy spot of land in the shadow of the Washington Monument. There, we held a rally featuring numerous speakers, mostly friends and loved ones <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, their families, and caregivers.
<figure id="attachment_84489" aria-describedby="caption-attachment-84489" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84489 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/Flags-10-380x285.jpg" alt="A grassy lawn in front of the Washington Monument features 6,000 small blue flags planted in rows, representing people with ALS." width="380" height="285" data-wp-pid="84489" /><figcaption id="caption-attachment-84489" class="wp-caption-text">Six thousand flags on the National Mall in Washington, D.C., represent people diagnosed with ALS each year. (Photo by Juliet Taylor)</figcaption></figure>
Each talk was moving. Speakers shared their hopes, their tears and laughter and resolve, their feelings about our collective progress in seeking treatments and cures, and what greater access to <a href="https://alsnewstoday.com/experimental-treatments-for-als/">new drugs and trials</a> has meant to them. And to be sure, we reaffirmed that we have much more work to do, and much more progress to make. In fact, immediately following the rally, most attendees headed directly to <a href="https://www.als.org/advocacy/als-caucus">Congress</a>, where they’d set up meetings with legislators.
Amid the blue flags, there was so much hugging and genuine joy at seeing one another. There were selfies and inside jokes about <a href="https://twitter.com/boaflouncer">feather boas</a> and grammar. There were impromptu social gatherings and celebrations. There also were quiet, somber walks through the thousands of blue flags, each one representing someone loved who is living with, or has passed from, ALS.
Perhaps most hopeful of all, new connections were made. New connections can invigorate us and help us to help others.
I find this is how the ALS community works. We make a single phone call, or hug, or email, or social media outreach, and before long, we&#8217;re surrounded and buoyed by compassion, understanding, and support. As someone who hadn&#8217;t previously been involved in volunteerism and advocacy, I am each day deeply moved by my friends in what we call “ALS Land.” We agree that none of us asked or wanted to be in this club, yet the love we’ve found here is sustaining and irreplaceable. Last week on the National Mall, that love was on full display.
If you or a loved one are living with ALS and would like greater support and community, please reach out to any <a href="https://www.cdc.gov/als/OrganizationsthatSupportPALS.html">ALS organization</a> until you find one that feels like home. We are here to welcome you, and we hope to see you in Washington, D.C., next May.
<figure id="attachment_84438" aria-describedby="caption-attachment-84438" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84438 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/als-restaurant-380x380.jpg" alt="Seven people stand in a row with their arms around each other's shoulders. They're all wearing a T-shirt that says &quot;I Am ALS&quot; on the front in orange lettering, and they appear to be standing inside a restaurant." width="380" height="380" data-wp-pid="84438" /><figcaption id="caption-attachment-84438" class="wp-caption-text">Friends in the ALS community meet for lunch during a day of advocacy. (Courtesy of Juliet Taylor)</figcaption></figure>
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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, 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, and are intended to spark discussion about issues pertaining to ALS.

Why last week was special in the ALS community

May has always been my favorite month of the year. Here in Maryland, the trees have filled in with lush green leaves, commercial crabbing boats have begun to quietly travel my small creek in the early dawn hours, and mallard ducks have returned to my yard. The evenings stay lighter longer, allowing for peaceful time to sit in my backyard and appreciate the calm that nature brings. May is the time of year when I feel most optimistic.
When I met my late husband, Jeff, I wasn’t at all surprised to learn that his birthday was in the middle of May. We always celebrated it with an event to welcome the warmer weather, most often a concert, bike ride, or boat trip.
<figure id="attachment_84198" aria-describedby="caption-attachment-84198" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84198 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/boating-michigan-380x280.jpg" alt="A couple enjoys a boat trip on a lake in Michigan. The woman is leaning over for the photo and smiling, while her husband smiles at her. He's wearing a brimmed hat, glasses, and a life jacket over a pink shirt. We can't see what his wife is wearing, but she has long blondish-brown hair and hoop earrings." width="380" height="280" data-wp-pid="84198" /><figcaption id="caption-attachment-84198" class="wp-caption-text">Jeff and Juliet enjoy a boat trip in Michigan before Jeff&#8217;s ALS diagnosis. (Courtesy of Juliet Taylor)</figcaption></figure>
May is also <a href="https://www.als.org/awareness">ALS Awareness Month</a>, a time when many whose lives have been touched by <a href="https://alsnewstoday.com/what-is-als/">ALS</a> share stories and messages to raise the public profile of the disease. We do this to bring greater visibility to a condition that desperately requires additional research, funding, and advocacy so that we may continue our quest for effective <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatments</a> and cures.
It’s also a time when many in the tightknit and welcoming <a href="https://alsnewstoday.com/forums">ALS community</a> choose to come together, both virtually and in person as our circumstances allow, to shine a light on the disease and ideally inspire others to join in our fight.
[recommended-reading id=83835]
Every day, I wish that ALS hadn’t entered our family’s life. Every life has rhythms and seasons of joy and sadness, and Jeff’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> came at a time when our life was idyllic. We loved our home and our family and our life together, and Jeff was optimistically launching a new security consulting venture. We had so much to look forward to. His ALS diagnosis devastated us, our family, and our friends.
At the same time, I recognize that our time living with Jeff’s disease — not the disease itself — brought us some unexpected gifts. Our shared attitude of embracing every day, of finding joy in moments small and large, instilled in me a sense of permanent gratitude and wonder. Witnessing Jeff’s bravery in the face of fear taught me life lessons about strength, hope, and resiliency. And having Jeff trust me with his <a href="https://iamals.org/get-help/caregivers-start-here/">caregiving</a> was an honor that left me with a new appreciation for that role. Caregiving is a feat of herculean proportions that&#8217;s impossible to understand until you’re living it.
An equally important gift has been the ALS community and the people in it. Many choose to leave ALS behind them after their loved one has passed, and I respect this understandable choice. ALS is painful and devastating. In my case, staying connected with the ALS community has been healing and rewarding. Through these people, I’ve found, and given, empathy, support, compassion, and kindness.
On Wednesday, many of us in the ALS community <a href="https://iamals.org/alsindc-2023/">gathered at the National Mall in Washington, D.C.</a>, to plant more than 6,000 blue flags bearing the names of loved ones living with, or who have died from, this disease. Yesterday, we gathered amid those flags to speak publicly about our loved ones. The flags will remain at the Mall through Saturday to raise awareness of ALS among those visiting the city&#8217;s monuments. My next column will share details and photographs from the event.
Next week will mark three years since Jeff died here at home after a beautiful, warm, and sunny May weekend. We had celebrated his birthday the week before, and days earlier I&#8217;d begun a planned <a href="https://www.dol.gov/agencies/whd/fmla">family medical leave</a> from work so that Jeff and I could enjoy a long, peaceful summer together. When he took a turn for the worse the day after his birthday, our friends and family gathered that weekend to sit at his bedside, play classic rock music, and share stories.
After his death, we learned that he’d found time that weekend, even without a voice, to summon and talk with each of us privately and share his love, hopes, and wishes for us. I still marvel that he made this happen. Jeff died as he lived — resolute, strong, loving, reassuring, and always thinking of others first. He was in many ways a contradiction — stern yet soft, serious yet hilarious, quiet yet deeply powerful.
May is still my favorite month of the year, but for different reasons now. I still love the natural beauty of the month, and the optimism and joy that come with it. But May now also reminds me of Jeff, the month of both his birth and his far-too-soon death. May reminds me of the grace and love and connection within the ALS community and our collective desire to shine a light on it, to let those <a href="https://alsnewstoday.com/living-with-als-2/">living with the disease</a>, their families, and those grieving know they’re not alone.
<figure id="attachment_84197" aria-describedby="caption-attachment-84197" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84197 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/national-mall-1-380x285.jpg" alt="Two men and two women stand together with their arms around each other's shoulders. They're all wearing the same dark gray T-shirt with the orange &quot;I Am ALS&quot; logo on the front. In the background, thousands of blue flags representing people with ALS are planted on a sprawling lawn." width="380" height="285" data-wp-pid="84197" /><figcaption id="caption-attachment-84197" class="wp-caption-text">Members of the ALS community gather in Washington, D.C., in May 2022. (Photo by Juliet Taylor)</figcaption></figure>
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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, 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, and are intended to spark discussion about issues pertaining to ALS.

What the month of May now means to me

“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.
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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 I raise ALS awareness, even at my ALS clinic

Growing up, I always associated the month of February with Valentine’s Day, a holiday filled with hearts and flowers. But now that I <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>, the holiday is nowhere near as important to me as <a href="https://www.rarediseaseday.org/">Rare Disease Day</a> on Feb. 28.
<a href="https://alsnewstoday.com/what-is-als/">ALS</a> is among the many serious conditions in the rare disease community, and although our diseases differ in terms of <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> and <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatments</a>, when we come together, we are a powerful voice demanding global awareness.
Along with living with a serious health condition, we in the rare disease community also have in common the need to accept our <a href="https://alsnewstoday.com/als-diagnosis/">diagnoses</a>, adjust to our new normal, and maintain a positive attitude despite our individual health challenges.
[recommended-reading id=40954]
<h3>Am I rare?</h3>
Having lived with ALS for 13 years, I used to be considered rare, but I’m not so rare anymore. Why?
At the time of my diagnosis in 2010, the typical progression of ALS symptoms was predicted to happen pretty fast. Within two to five years from diagnosis, patients experienced weak arms and legs, followed by trouble swallowing, and finally, their breathing became restricted to the point of causing their death.
But now more ALS patients are living longer — in fact, <a href="https://alsnewstoday.com/prognosis-of-als/">up to 10% can live 10 years or longer</a>. I believe this is due to several reasons. We’ve seen advances in treatment and a focus on improving patients’ quality of life, and the internet has enabled patients to communicate and learn from one another.
The growth of <a href="https://www.als.org/local-support/certified-centers-clinics">ALS clinics</a>, support groups, online forums, and social media helped to speed along discussions about a variety of quality-of-life topics, including everything from mobility scooters to improving sleep, home modifications, and more.
I’ll admit that when I reached the five-year milestone of living with ALS and could still walk with a rollator and had no trouble breathing, I knew I was rare. But then I began to meet other patients online who, like me, were living longer. We shared the mindset of a positive attitude and following healthy lifestyles. That spurred me to start my <a href="https://alsandwellness.blogspot.com/2015/01/welcome.html">ALS and Wellness Blog</a> and begin writing <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">this column</a> for <a href="https://alsnewstoday.com/">ALS News Today</a>.
By the time I hit my 10-year milestone, again I felt rare. But I also felt proud to have established a positive presence in the ALS community.
<h3>Can we work together?</h3>
<a href="https://alsnewstoday.com/2019/06/18/changing-perspective-rare-disease/">In a previous column</a>, I shared my jealousy at the media attention other diseases have received and felt we were competing against one another for limited funding and support. I’ve since come to recognize that as a larger community of rare diseases, we are a powerful voice.
During the month of February, <a href="https://bionews.com/">BioNews</a>, the parent company of this website, is highlighting rare disease awareness. To learn more, just type the hashtag #WhyRare on LinkedIn, Facebook, and Instagram.
And remember, no matter what our rare disease is, together we can help each other learn to live well. 
<hr />
Note: ALS News Today 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 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, and are intended to spark discussion about issues pertaining to ALS.

Tag: ALS awareness