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<a href="https://alsnewstoday.com/what-is-als/">ALS</a> was <a href="https://www.als.org/understanding-als">first identified</a> in 1869, though its <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> were <a href="https://www.pharmaceutical-technology.com/features/history-of-als/?cf-view">documented</a> in medical literature as early as 1824. It&#8217;s intriguing that the sequence of the disease today is often similar, with initial symptoms followed by an actual diagnosis.
It took four years to receive my <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis of ALS</a>, during which time I went through <a href="https://alsnewstoday.com/columns/physical-occupational-therapy-improve-quality-life-als/">physical therapy</a>, chiropractic manipulation, myriad tests for <a href="https://parkinsonsnewstoday.com/what-is-parkinsons-disease/">Parkinson&#8217;s</a> and other illnesses, and back surgery. The <a href="https://alsnewstoday.com/living-with-als-2/">reality of ALS</a> is fraught with issues that relate to its onset typically occurring months or years before a diagnosis. In other words, there&#8217;s <a href="https://www.als.org/understanding-als/symptoms-diagnosis">no definitive way</a> to &#8220;catch it early.&#8221;
Some conditions, such as certain types of cancer, can be headed off if caught early. But many rare, degenerative diseases cannot be detected early, and even if they could, the prognosis is always the same. No remission and no dormancy. So what can we do?
[recommended-reading id=90697]
<h3>Bringing ALS to the forefront</h3>
I understand the economics of medical research and drug development aren&#8217;t conducive to dedicating much time to finding a cure for ALS. But I also understand and believe in the squeaky-wheel concept. Thus, we have to squeak much louder.
There&#8217;s a relatively small cadre of dedicated persons, medical, legal, and political, who work tirelessly to find and advocate for solutions to ease the burdens borne by ALS victims and their families. But they need help.
The way things are in our slow-paced world of drug approvals and research initiatives, those who contract ALS today have little hope they&#8217;ll see a cure or a cessation of symptoms.
As I&#8217;ve said before, <a href="https://alsnewstoday.com/columns/living-my-life-key-d-minor/">miracles do exist</a>. But I also believe we need more miracle makers and miracle assistants. One such person is Michelle Lorenz, whom I met online a few years ago and worked with to get senators to support the fast-tracking of an <a href="https://www.congress.gov/bill/117th-congress/house-bill/3537">initiative</a> to help suppress ALS.
Michelle is indefatigable and relentless when it comes to lobbying for the rights and <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a> of ALS patients. Check her out on <a href="https://www.facebook.com/michelle.lorenz.395">Facebook</a>.
It&#8217;s unimaginable that diagnosis — and thus, treatment — for one of the worst diseases known to man can take four years, as it did for me. This is not 1824 or 1869. Surely we can do better.
One of the most disquieting things for me is hearing about a younger person or a friend being diagnosed with ALS. It truly makes me sad, and recently I received news of both. I wish I had that proverbial magic wand to make it all go away or make it better.
It&#8217;s also very disheartening to hear about <a href="https://alsnewstoday.com/forms-of-als-familial-als/">familial ALS</a> cases. <a href="https://alsnewstoday.com/columns/how-familial-als-shaped-friends-journey/">I wrote about one family in a previous column</a>, and a reader shared that her family has also lost several members to ALS.
On a positive note, I just received some news of progress on the familial type. Last month, the <a href="https://www.msn.com/en-us/health/other/accumulation-of-junk-proteins-identified-as-one-cause-of-aging-and-possible-source-of-als/ar-BB1kmg6q">Spanish National Cancer Research Center</a> noted that a paper published in Molecular Cell &#8220;provides the first evidence that a possible cause of the hereditary type of ALS — familial ALS — is the accumulation in motor neurons of &#8216;junk proteins,&#8217; proteins with no function that wrongly accumulate and prevent the cell from functioning properly.&#8221; According to researchers, this finding could help them explore new treatment pathways.
We who have suffered for years — and know how hard ALS is — are deeply hurt by new cases, especially when a young person gets our disease. And knowing that anyone can get it, we encourage all who can to do all they can to put an end to this heinous condition.
Simply because a disease is rare doesn&#8217;t justify putting it on the back burner. We must give more of our time, talent, and treasure to the diagnosis, treatment, and cure for ALS. We owe it to our society.
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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.

We must do more to accelerate the diagnosis and treatment of ALS

While <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, I have days when I&#8217;m low in spirit and need something to <a href="https://alsnewstoday.com/columns/combat-february-blahs-living-with-als/">lift me out of the doldrums</a>. When this happens, two things help me: a visit from my daughter and some great music. Recently, I got both at the same time. What a treat!
My daughter introduced me to a musical gem that I now consider to be my all-time favorite, despite six decades of collecting music. The arrangement, the rich a cappella harmonies, and the beautiful vocals overall make this piece a blessing.
Before the big reveal, allow me to offer a few more thoughts about the importance of relaxation for ALS patients and others with similar illnesses.
[recommended-reading id=84621]
<h3>The power of music</h3>
When I was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a>, I read Timothy Keller&#8217;s book &#8220;Walking with God through Pain and Suffering,&#8221; followed by &#8220;Tuesdays with Morrie&#8221; by Mitch Albom. Both gave me a big boost. I also continually listened to soothing and uplifting music.
I know that others have their own go-to solutions to help them move beyond personal pity parties. Through my own experimentation over the years, I now know what works for me and what doesn&#8217;t.
<a href="https://alsnewstoday.com/what-is-als/">ALS</a> is constant and relentless, and it often dominates the mind as much as the body. We also worry about our family&#8217;s wellness and financial stability. So it&#8217;s important that we have hobbies, habits, and routines to provide us respite from our angst.
I invite you to consider adding <a href="https://alsnewstoday.com/columns/ways-music-has-comforted-us-while-living-with-als/">music</a> to your sensory first-aid kit. Use it to take you to a better place with positive thoughts and soulful vibrations. Let it wash over you like a warm summer rain or a fragrant massage oil.
Now for the reveal. The song I&#8217;m referring to is one you&#8217;ve probably heard many times. Introduced to the world by Simon and Garfunkel in 1970, it has since been performed by numerous other entertainers.
Drumroll, please! The song is &#8220;<a href="https://youtu.be/AheurAZ-4kQ?si=X35EzbLACDoST1l7" rel="nofollow">Bridge Over Troubled Water</a>.&#8221;
That&#8217;s all I&#8217;m going to tell you, but if you love music, you&#8217;ll do some research on the various artists who perform this song, particularly Jacob Collier. You can see how he created this masterpiece <a href="https://www.youtube.com/watch?v=I8DWlis-MEY" rel="nofollow">here</a>, and watch reactions to it by other artists <a href="https://www.youtube.com/watch?v=AILNfo_1f5k" rel="nofollow">here</a>.
Enjoy!
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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 <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.

On tough days when ALS tests my spirit, I turn to music

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

After a great deal of introspection, I decided for this month&#8217;s column to reflect on my life as it stands now. I wanted to write about it without being too ominous and dreadful, but I don&#8217;t think that&#8217;s possible.
My <a href="https://alsnewstoday.com/columns/ways-music-has-comforted-us-while-living-with-als/">love for music</a> prompted the headline, because within the music lexicon, some keys make us happy, some make us sad, some bring relaxation, and others make us want to move our bodies. The <a href="https://www.piano-keyboard-guide.com/d-minor-scale.html" rel="nofollow">key of D minor</a> is one of the darkest sounds. <a href="https://www.rollingstone.com/pro/features/music-d-minor-saddest-key-1210591/">It&#8217;s been described</a> as tragic, sorrowful, somber, and melancholic, which best describes my current feelings.
Like music, life comprises a broad spectrum of emotions, pitfalls and high places, success and failure, victory and defeat. <a href="https://alsnewstoday.com/what-is-als/">ALS</a> brings up those same realities, but with a different twist.
[recommended-reading id=81087]
Our bodies face constant and <a href="https://alsnewstoday.com/columns/living-with-als-side-frequent-frustration/">relentlessly degenerative</a> physical abilities. As of today, nothing short of a miracle (I do believe in miracles) can cure us, which wouldn&#8217;t be as bad if the degenerative activity would cease. (Many people live for decades with permanent disabilities and diseases.)
I&#8217;ve just gotten to the &#8220;What&#8217;s the point?&#8221; <a href="https://alsnewstoday.com/columns/als-paralysis-devastating-patients-caregivers-trap/">stage of my disability</a>. For the past few years, I&#8217;ve been living for my family and trying to get us on the right track regarding my absence. I believe that goal has been reached.
I&#8217;ve been affirmed and encouraged by friends who tell me how I&#8217;ve helped so many others through my example of continuing to be productive. It&#8217;s great to have supporters who make deposits in my life while I can enjoy them.
Despite all the positive comments that have come my way, I&#8217;m very tired of the life I&#8217;m living, a life in which nearly every song is in the key of D minor. I wouldn&#8217;t end my life unnaturally, but I&#8217;ve lost a sense of purpose, so I won&#8217;t take every measure available to extend my time.
You could ask 100 ALS patients how they get through this disease, and you&#8217;d probably get 100 different answers. As for me, I&#8217;ve had a long and blessed life, and my balance sheet shows a significant net worth. I&#8217;m so grateful to know that I&#8217;ve had more highs than lows, and that&#8217;s good enough for me.
<h3>Acceptance is hard</h3>
The hardest thing about writing this particular column are the feelings it will conjure up in those who care about me. Let me share a lesson l learned from my mother&#8217;s death.
She was feeling pretty bad one day when I was visiting her. Bedridden and in constant pain, she wouldn&#8217;t eat her favorite ice cream that I&#8217;d brought her. I became frustrated, and during our limited conversation that day asked, &#8220;Do you want to give up?&#8221;
Without hesitation, she said, &#8220;Yes.&#8221;
I was hurt. How could she want to leave me? She died a short while afterward. The lesson learned was that I was placing my selfishness over her suffering. She had just as many reasons for letting go as I had for her to hold on. Now I stand in the same place she stood and feel the same way she felt.
As I continue to live in the key of D minor, although I can&#8217;t decide when it will be, I hope that those I leave behind, those who want me to stay here, will only want what&#8217;s best for me.
I&#8217;m sorry for the candor of this submission. But my moniker, after all, is &#8220;<a href="https://alsnewstoday.com/columns/doc-wheres-instruction-manual-living-als/">Outspoken</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.

Living my life in the key of D minor 

Accidents can and will happen. Do you have a plan for when they do?
The two accidents I&#8217;ve feared the most since being debilitated with <a href="https://alsnewstoday.com/what-is-als/">ALS</a> are getting scalded in the shower and smashing my toes against the wall or any other object when I&#8217;m in my wheelchair.
I saw a YouTube video about a young ALS patient whose feet were immersed in water that was too hot, but he couldn&#8217;t get the caregiver&#8217;s attention to remove his feet from the water. He suffered serious burns from that accident.
I&#8217;ve had a couple of minor hot water issues, and smashed toe accidents, too; fortunately, I had no long-term effects. Still, one emotion that accompanies being totally vulnerable is <a href="https://alsnewstoday.com/columns/choosing-home-health-agencies-fear-double-edged-sword/">fear</a>. It&#8217;s always there, lurking in the shadows and ready to jump out anytime.
[recommended-reading id=81111]
My recent thoughts on accidents and incidents have turned to other possibilities — namely, that something could happen to our <a href="https://alsnewstoday.com/columns/who-cares-for-als-caregiver/">caregivers</a>. While leaning back in the shower one day, I thought about my attendant slipping and hitting her head. What would I do if she were unconscious? How would I right myself? I can&#8217;t lean back for too long because of my shallow breathing and weak diaphragm. I need my <a href="https://www.patientcare.shop.philips.com/Philips-Global-Category/hospital-respiratory-care/hospital-respiratory-ventilation/respironics/trilogy-ev300-hospital-ventilator/p/989805661881?salesOrg=US90&amp;_ga=2.39322531.1482519603.1674764567-137826464.1641591043&amp;gclid=CjwKCAiA-P-rBhBEEiwAQEXhHztGgC7fhucSx_7N_Uf7DcGYW_g0CyZ80Vf78ig1cTiqE2tPzwVN1hoCaCYQAvD_BwE&amp;gclsrc=aw.ds">Trilogy breathing equipment</a> during extended periods of being on my back.
A myriad of accidents can happen to patients and caregivers. How can we reasonably <a href="https://alsnewstoday.com/news/disaster-preparedness-inadequate-als-patients-caregivers-japan/">prepare for those contingencies</a>? During the few times most ALS patients are alone, any number of life-changing events can occur.
I saw a video of a man whose wife takes care of him. After attending to him, she left him alone in his wheelchair for what she thought would be a relatively short period of time. When she returned, he was slumped forward with his head leaning down, which made it <a href="https://alsnewstoday.com/als-symptoms/difficulty-swallowing/">hard for him to breathe</a>. His wife said he would&#8217;ve died had she not come back when she did.
One of my constant thoughts and concerns is about my wife having an accident either when she&#8217;s home or away. She&#8217;s been my primary caregiver. If she were unable to do that any longer, it&#8217;d be catastrophic. I have no other family members or friends who could step in to fill the void, so I&#8217;d thus be relegated to <a href="https://alsnewstoday.com/columns/tips-als-caregivers-outpost-respite-care/">a nursing facility</a>, in which I&#8217;d spend my last days.
<h3>Readiness with awareness</h3>
So accidents, although they can&#8217;t all be stopped, must figure in to our plans for what we&#8217;ll do in an emergency. Some questions we could face:
How will we contact someone to help us if we find ourselves in an untenable position?
How much can we prepare for the unknown? Is there a way for the fire department to know that you have ALS and require priority response? Is there a neighbor who can check on you regularly? Do you have a backup plan for power outages?
What would we do if our lifelines malfunction — meaning our cellphones and eye-gaze computers? Is there some hands-free, voice-activated device available in our area? Some of us have no or few emergency resources, especially proactive resources, that we can depend on.
Here&#8217;s some advice that may help you prepare.
You should do a situational analysis of your environment to identify your weaknesses and then address each one. For instance, should caregivers have an accident and be immobile but conscious, a push-button emergency device would be a good tool for them.
Second, you should have a visible note in your car to the police or fire department, advising them that you&#8217;re at home with ALS and need help. How about an alarm in the house that sounds every 10 minutes or so to alert the caregiver that you&#8217;re alone and should be checked? Last one: If it&#8217;s allowed in your community, install an outside alarm or an LED light that flashes to alert passersby.
This issue is a serious one for all ALS patients. When we&#8217;re aware that accidents can and will happen, the least we can do is look for ways to ameliorate or mitigate them.
Please share your suggestions below on how to prepare for accidents. And have a safe holiday season.
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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.

Preparing for accidents that will happen, guaranteed

I must use the privilege of this column to acknowledge the passing of one of our <a href="https://alsnewstoday.com/what-is-als/">ALS</a> heroes, <a href="https://alsnewstoday.com/news/ady-barkan-universal-healthcare-featured-not-going-quietly-documentary/">Ady Barkan</a>. A young, stalwart, and dedicated husband and father, Ady spent the final few years of his life fighting for those without adequate healthcare in this country. Ady <a href="https://www.nytimes.com/2023/11/02/us/politics/ady-barkan-dead.html">died</a> on Nov. 1.
Although he knew his own life was nearly over, and while his body was progressively being ravaged by an <a href="https://alsnewstoday.com/symptoms-of-als/">all-out ALS assault</a>, Ady gave all he and his family had for the benefit of others. Their sacrifices will go down in the annals of <a href="https://alsnewstoday.com/columns/lets-step-up-advocacy-efforts-als-research/">public health advocacy</a> and will always be an example for us to emulate. He showed the world how to confront political power without sheepishness and fear.
Ady displayed what those of us with ALS know all too well when it comes to the critical and tenuous efforts of speaking and breathing. And he did it unashamedly. I am so proud of what this man did to illuminate the need for Medicare for all, not for selfish or political reasons, but because you don&#8217;t have to reach the age of 65 to need it.
<blockquote class="twitter-tweet" data-width="500" data-dnt="true">
Hi all, this is Ady’s wife, Rachael. I’m devastated to share the news that Ady has died from complications of ALS. You probably knew Ady as a healthcare activist. But more importantly he was a wonderful dad and my life partner for 18 years. [1/4] <a href="https://t.co/KZ8k73Gujp">pic.twitter.com/KZ8k73Gujp</a>
&mdash; Ady Barkan (@AdyBarkan) <a href="https://twitter.com/AdyBarkan/status/1719895098954322210?ref_src=twsrc%5Etfw">November 2, 2023</a></blockquote>
<script async src="https://platform.twitter.com/widgets.js" charset="utf-8"></script>
<h3>Those who light our way</h3>
There have been many men and women who have <a href="https://alsnewstoday.com/living-with-als-2/">lived with</a> and <a href="https://alsnewstoday.com/notes-from-the-als-front-rick-jobus/">passed away from ALS</a>, and I acknowledge them all, especially the young ones. Two have had a profound impact on my ALS advocacy: <a href="https://alsnewstoday.com/news/als-patient-who-created-ice-bucket-challenge-is-honored/">Peter Frates</a>, founder of the Ice Bucket Challenge, which raised hundreds of millions of dollars in contributions to ALS research, and Ady Barkan. They did what more of us should do: advocate, raise funds, and confront the power structure.
Don&#8217;t get me wrong, there are other great models of excellence out there doing good things as well. <a href="https://www.cnn.com/2019/05/31/health/turning-points-lauren-lolo-spencer-als-disability-lifestyle-influencer/index.html">Lauren &#8220;Lolo&#8221; Spencer</a>, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> at 14, is actively using her ALS lemons to make lemon pie, lemon pudding, lemon cookies, and lemonade to wash it all down. I was on a panel with her, and her enthusiasm was off the chart.
Another one is an amazing young lady who doesn&#8217;t let ALS stand in the way of what she wants to accomplish. <a href="https://iamals.org/stories/mayuri-saxena/">Mayuri Saxena</a> has a heartbreaking story about her life before and after her diagnosis. Go to her <a href="https://www.facebook.com/groups/156722665270133/user/5307349/">Facebook</a> page and read her story about how the negative and unhealthy spirit within her was defeated by an indomitable spirit to live and grow despite having ALS. My daughter loves her.
[recommended-reading id=85557]
Then there is a young lady who does not have ALS, <a href="https://www.wkbw.com/news/local-news/diagnosed-at-37-the-fight-for-access-to-als-treatments">Michelle Lorenz</a>, but is an indefatigable and staunch fighter for ALS patients. I have worked with Michelle on phone and Zoom calls to urge senators in Congress to push for U.S. Food and Drug Administration approval of <a href="https://alsnewstoday.com/experimental-treatments-for-als/">medicines</a> that extend our lives. She works so hard and refuses to take no for an answer. She also has a <a href="https://www.facebook.com/groups/156722665270133/user/1374970069/">Facebook</a> page where you can keep up with her current and past accomplishments.
Now, back to Ady Barkan. The first time I saw him on TV, he was speaking before Congress in a physically normal manner. I was very impressed by his advocacy and knowledge of the subject matter.
The next time I saw him, he was walking down the street while being interviewed by reporters. His gait and speech had obviously deteriorated. He struggled to answer every question. I was impressed then, and I remain inspired to this day. I have no excuse for inaction, and Ady played a major role in that.
I encourage you to watch his many <a href="https://www.youtube.com/watch?v=Eehh_NVqiyg">interviews</a>, appearances before Congress, confrontations with individual representatives and senators, and the documentary &#8220;<a href="https://www.pbs.org/pov/films/notgoingquietly/?gclid=CjwKCAiA3aeqBhBzEiwAxFiOBii5pjObnI6ptqJq9yca4enJDw8Qmg4hh6-hLHuTAxJjX_lwisvfXhoCzTIQAvD_BwE">Not Going Quietly</a>.&#8221; You will see sacrifice, commitment, dogged <a href="https://alsnewstoday.com/columns/als-affects-my-hand-strength-its-no-match-my-determination/">determination</a>, and unbounded love. You will see the man Ady Barkan.
I appreciate Ady&#8217;s work. You should, too.
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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 <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.

Ady Barkan leaves an indelible legacy of tenacity and advocacy

Have you ever really thought about time? What it is and what it means? When you take a deep dive into time, you&#8217;ll find there are two dominant stages: memories of the past and <a href="https://alsnewstoday.com/columns/trying-prepare-future-its-worth-thought-now/">aspirations for the future</a>. The present is the stage of doing, but it is divided between past and future.
Yes, time is an interesting phenomenon. It is also an integral part of our lives. While it may not be the most important thing in life, it ranks right up there with oxygen.
For patients with <a href="https://alsnewstoday.com/what-is-als/">ALS</a> or other time-centered terminal illnesses, who are given prognoses of months or years, time plays a major role in our lives and the lives of our loved ones. Jim Croce was onto something <a href="https://www.youtube.com/watch?v=Q29sOLG8xGE" rel="nofollow">when he sang</a>, &#8220;If I could save time in a bottle/ The first thing that I&#8217;d like to do/ Is to save every day till eternity passes away/ Just to spend them with you.&#8221;
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<h3>Making the most of whatever time we have</h3>
<a href="https://alsnewstoday.com/columns/living-with-als-means-unraveling-my-concept-time/">The thought of time</a> running out obviously creates a sense of urgency. It also leads to impatience among those of us who are unable to physically do things for ourselves. On the other hand, running out of time prompts us to do positive things like getting our affairs in order and initiating more genuine experiences with our friends and family.
Winston Churchill coined <a href="https://wordhistories.net/2019/07/28/riddle-wrapped-mystery-enigma/">the phrase</a> &#8220;a riddle wrapped in mystery inside an enigma.&#8221; I will humbly take the liberty to add to this great man&#8217;s words by saying &#8220;covered by a paradox.&#8221; That Churchill phrase was not in reference to time, but it certainly applies in this case.
<a href="https://alsnewstoday.com/columns/doc-wheres-instruction-manual-living-als/">When I was diagnosed</a> and given information on ALS, I thought I would only live for about six months. The doctor explained the disease in such a way that made me believe that the prognosis was a foregone conclusion. He said all I could do to add two or three months before my ultimate demise was to take <a href="https://alsnewstoday.com/rilutek-riluzole-for-als/">Rilutek</a> (riluzole), a therapy that can slow <a href="https://alsnewstoday.com/stages-of-als/">ALS progression</a>.
I decided not to take it because that short period of time was hardly worth risking a liver problem, which he said was a side effect. After I finally saw a new doctor, who took the time to fully explain my prognosis, I started taking Rilutek. That was nine years ago.
I had no idea how long I would live, but I knew I had to be judicious with my time. I continued to write my newspaper column, wrote five books, and had many public speaking engagements until I could do it no longer, all because I used my time.
One of the responses that make me uneasy is &#8220;I don&#8217;t have time.&#8221; Truth is, we all have the same 24 hours each day. It&#8217;s just a matter of priorities. We cannot save time, we cannot stop time, we cannot slow it down, we cannot speed it up, we cannot make it up, and we cannot control it. What we can control is our use of time.
To my fellow travelers on the ALS road, don&#8217;t give in to the urge to say, &#8220;What&#8217;s the point of living with this miserable condition?&#8221; Don&#8217;t give up on yourself. You still have time to do something for yourself and for others.
I will end with another quote by comedy writer Robert Orben: &#8220;Time flies. It&#8217;s up to you to be the navigator.&#8221;
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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.

ALS or not, we must learn how to use our time wisely

Back in middle school, I was taught that sound comprises three components: something to make the sound, something to transport the sound, and something to receive the sound. It&#8217;s been a while since I learned that, but I assume it&#8217;s still true.
The principle reminds me of a related statement that most people have heard: If a tree falls in the woods and there&#8217;s no one there to hear it, did it make a sound?
So where am I going with this? I&#8217;ve screamed inside without making an external sound. Certainly other <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patients have experienced the same thing. We scream out from being tired, stressed, and <a href="https://alsnewstoday.com/columns/living-with-als-side-frequent-frustration/">frustrated</a>. In response to an array of things that bother us, we sometimes display a demeanor that indicates our displeasure, but on the inside we&#8217;re exploding. We have our pet peeves just as most people do, and when they arise, we cry out on the inside only.
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<h3>Taking a risk</h3>
Our screams reside where no one can hear them for a variety of reasons, including not wanting a <a href="https://alsnewstoday.com/perspective-what-i-learned-in-13-years-of-als-caregiving/">caregiver</a> to feel bad, not wanting to be characterized as a complainer, and not wanting to appear ungrateful. So we end up suffering in silence. It&#8217;s the proverbial rock and a hard place.
Screams, like falling trees in the woods, permeate my inner being every day. Things that hurt, things that irritate, things that agitate, and little things like getting <a href="https://alsnewstoday.com/als-diet-and-supplements/">food</a> on the outside of my mouth and someone using a spoon or fork to scrape it off: All cause me to scream inside. But no one hears me.
Silly? Petty? Nitpicky? Yes, to those who are able to resolve their own idiosyncrasies. But for those who cannot, otherwise petty things are magnified tremendously. Everything becomes urgent, and everything that&#8217;s out of order morphs into a perceived crisis. Believe me, for people who cannot physically move, <a href="https://alsnewstoday.com/columns/als-diagnosis-changes-perception-life/">perception</a> is indeed reality.
At the risk of butchering the tree or the metaphor, my attempt is <a href="https://alsnewstoday.com/columns/why-im-fully-committed-promoting-als-awareness/">to inform</a> family members, caregivers, and the general population about the hidden dilemmas confronted by ALS victims. We scream on a daily basis, but our cries go unheard.
All this begs the question, why aren&#8217;t we heard? Well, to me it&#8217;s both a transmitter and a receptor problem. We patients don&#8217;t share our feelings, and caregivers don&#8217;t study us enough to be able to spot or anticipate an issue. It boils down to simple <a href="https://alsnewstoday.com/columns/listening-tips-better-communication/">communication</a>, doesn&#8217;t it?
In this particular situation, the solution lies with the transmitter, the patient. We must trust our caregivers enough to tell them exactly how we feel. We must trust that they&#8217;ll understand and stop doing what we don&#8217;t like, and that they&#8217;ll begin doing what pleases us and makes us feel better.
Many years ago, one of my students gave me a small plaque that read, &#8220;To teach is to learn.&#8221; Writing this particular column has taught me that I have to be more open about things that bother me, even the silly things. I just have to take the risk of quietly disclosing my feelings and stop screaming so much.
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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.

For people with ALS suffering in silence, it’s time to speak up

Remember &#8220;<a href="https://www.imdb.com/title/tt0088559/" rel="nofollow">MacGyver</a>&#8220;? In this TV series from the 1980s and early &#8217;90s, the titular secret agent always found himself in an untenable predicament and used whatever was around him to devise a solution. Whether it was a paper clip, a thumbtack, or a toothpick, MacGyver was able to employ any device to bring about a positive outcome.
He didn&#8217;t just make lemonade from the lemons of life — he made lemon pie, lemon pudding, and lemon tarts. No predicament was so daunting that he couldn&#8217;t conquer it by using the simple and often taken-for-granted resources available to him.
He would look around and find an item, pull something out of his pocket, hook it together, and make gadgets to escape danger or help someone else get out of a particular situation. The name MacGyver eventually <a href="https://www.bbc.com/news/magazine-34075407">became an iconic verb</a> used to describe innovative fixes to difficult problems, all because he used what he had.
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<h3>Attitude is key</h3>
Sometimes the answer to our dilemma is closer to us than we realize. Many of us with <a href="https://alsnewstoday.com/what-is-als/">ALS</a> concentrate on <a href="https://alsnewstoday.com/columns/als-paralysis-devastating-patients-caregivers-trap/">what we&#8217;ve lost</a> rather than what we have left. Self-esteem and value to society are critical traits for everyone. It&#8217;s a matter of continuous reinforcement, though.
I know I&#8217;m oversimplifying because MacGyver also possessed a great deal of aptitude. My point, however, is <a href="https://alsnewstoday.com/columns/fighting-predictable-unpredictability-rare-disease/">based on attitude</a>. Do we ALS patients have the right attitudes to use the abilities we have to do whatever we can to help us and others get through life&#8217;s predicaments?
Having seen and heard patients describe how they are traversing the <a href="https://alsnewstoday.com/columns/bittersweet-family-life-games/">ALS mountains and valleys</a>, I know many need Sherpa to carry the load sometimes. And that includes me.
Using what we have left in our bodies and minds is vital to our very survival. If we think we are useless and have nothing to offer the world, we will waste away, often taking our innate resources with us. Using our thumbtacks and toothpicks to help others is a laudable endeavor, the results of which we may not ever see. But it&#8217;s worth it.
No matter how lacking, depleted, and empty we may feel, we still have knowledge and aptitude. The question is: Do we have the proper attitude? I know how hard it is to keep moving forward, but just when I get to the point of quitting, something causes me to stay with it.
It&#8217;s not what we drive, <a href="https://alsnewstoday.com/columns/power-hope-those-affected-als/">it&#8217;s what drives us</a>. It&#8217;s not what we live in, it&#8217;s what lives inside of us. In the final analysis, our lives will be measured by our ability to look into a mirror and like what we see. We will be defined not by what we had but by what we did with what we had. And that includes having ALS.
If you haven&#8217;t done so already, take an inventory of your resources. Do they include knowledge of family history, spiritual encouragement, a book inside you that you should write, the equipment you no longer need that another patient can use, or a beautiful smile you can share with someone? Use what you have to help others and to make yourself feel better.
Hey, MacGyver, do you happen to have a paper clip I can borrow?
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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.

Category: OutSpoken - a Column by James Clingman