All of These People Found Life After ALS

All of These People Found Life After ALS

“You can either celebrate what you can do, or mourn what you can’t. Every day I wake up and create a new normal. I don’t dwell on what has changed, but instead, I focus on keeping busy achieving my goals.” –Augie Nieto II, fitness pioneer

Nieto and I, independently, arrived at a very similar conclusion. However fractionally small, there are still goals to pursue post-diagnosis, talents to apply, and achievements to celebrate.

Nieto became chairman of the board of the ALS Therapy Development Institute, the world’s first and largest nonprofit biotech focused solely on ALS research. He is further noted for creating “Augie’s Quest,” which has raised over $45 million in funds for research into the disease. All of this occurred after his diagnosis of ALS.

Similarly:

Stephen Hillenburg, creator of the animated TV series “SpongeBob SquarePants,” is committed to working on the show “for as long as [he is] able.”

O.J. Brigance continues to serve as senior adviser for player engagement for the Baltimore Ravens. For his ALS activism, Brigance was one of two recipients of the 2016 NCAA Inspiration Award.

Steve Gleason founded the Gleason Initiative Foundation with the mission of providing folks with neuromuscular diseases or injuries the latest technology and equipment. He also inspired the Steve Gleason Act, which permanently provides funding for communications devices that help patients with degenerative diseases.

Pete Frates inspired the “Ice Bucket Challenge.”

Of course, Stephen Hawking may be the profound societal contributor from diagnosis until death.

Following is a sampling of other ALS patients’ impact prior to their passing:

Zeca Afonso, a musician, resumed teaching after a 15-year hiatus, performed three concerts, and released three albums.

Economist and politician Luca Coscioni went back to political life and denounced the lack of public funding for embryonic stem cell research in Italy.

Tony Judt, historian, essayist, and university professor, wrote “Ill Fares The Land,” challenging readers to debate “what comes next?”

Jenifer Estess, a theatrical producer, wrote her memoir, “Tales from the Bed: On Living, Dying and Having It All.”

Catherine Gody Wolf, a psychologist and expert in human-computer interaction, published research into the fine-scale abilities of advanced ALS patients.

Entrepreneur Chris Rosati grabbed headlines with the “Krispy Kreme Heist,” in which he “hijacked” a delivery truck and then dispensed doughnuts from the “stolen” vehicle. After the doughnut caper, Rosati began handing out “Butterfly Grants,” giving school kids $50 each and telling them to start changing the world.

Pastor Ed Dobson authored a terminal illness devotional and spent 12 months emulating Christ while writing “The Year of Living Like Jesus.”

Jazz bassist and composer Charles Mingus continued composing and supervised a number of recordings.

Philosopher Franz Rosenzweig continued writing with the help of his wife, who would recite letters of the alphabet until he indicated the correct one. This continued until she could guess the word or phrase he intended.

These people obviously did not retreat into themselves. Nor do the many people with ALS who find rewarding, perhaps unpublicized, endeavors to assuage personal tragedy. The key is to find a passion and figure out how to pursue it. Within the ALS community, myriad examples exist of individuals doing exactly that.

My long-held, though oft-dormant, passion is writing. The fact that it may be pursued deep into ALS’s tortuous path is fortuitous. Two close friends of mine, before succumbing to ALS, suggested that I find a platform to share my thoughts, experiences, and perspective in dealing with ALS. For over two years, we were often in daily contact. We formed an effective, ad hoc, three-person support group that brought each of us great comfort as we listened and related to what each other was going through.

After they died (within six months of each other), their primary caregivers shared with me how much my friends benefitted from our dialogue. It is, partially, with them in mind that I now scratch my writing itch.

Paradoxically, ALS has narrowed my life significantly and deepened it immensely. This black hole-like effect is confoundingly wicked, yet tantalizing rich. My noteworthy daily highlights are, admittedly, microscopic on the normally functioning human scale. However, whereas I once was prone to lamenting the most trivial ache or pain, I now celebrate the fractional residual function that I have left.

Joni Mitchell may have been correct that “you don’t know what you’ve got till it’s gone,” in the context of paradise and parking lots. But these days, I find that the things I treasure most are those that are threatened to be stolen, like my next breath; for each respiration is a gift and signifies there is more to be done.

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

15 comments

  1. Jeannette Elliot says:

    If ALS was contagious there would have been a cure or a better management of this horrific disease. Why don’t we have commercials or any media coverage of this painful and dreadful disease. Stop telling us of so many trials that is not helping anyone. Put the money to get the public and Congress attention instead of all these disappointing news.
    So many people don’t even know about ALS. Let the public know. We ALS patients and family already know how horrible this disease is. Put your advertisements to make the public aware.

    • Bill says:

      Jeannette
      I myself very much like to hear of the trials and am just finishing up one myself. Although I won’t know if the drug helped or if I even had a placebo, I hope my volunteering somehow helped research. Hopefully, I am about to begin another study. Without studies there is no hope for future sufferers. I think the PALS community does suffer in that we are a small patient group so don’t get the attention as more common diseases.
      I am lucky that so far I am slow onset. My frustrations are very small
      at this time compared to others I’ve met.

  2. Ryan says:

    I was diagnosed on February 6th, 2018 and I too look forward to weekly emails from your site. I have to say recently the tone of some of these emails have taken a darker tone and it’s been a bit depressing to me. Even in this article of inspiration you still have to reference death, the article would have been great without reference to people dying. We look to this site for hope as the world closes in on a way to stop the progression of this awful disease. We are all blatantly aware of the crippling/degenerative parts of our lives so please refrain from the death and disability references in your posts. In closing though I would like to thank you for all the time and effort you put into this site, it’s the best source of information I’ve found since I joined the PALS community.

    Sincerely,
    Ryan

    • Pat says:

      Ryan
      I am with you about not wanting to think of sad references. It is very painful to think about death for all of us but it is reality. There is a time for everything.I don’t think I will be ever used to having ALS but as the time passes after you are diagnosed the more you come to grips that we are ALL going to die, we just happen to know what is going to take us at the end.

  3. ALS has allowed me to focus my energy on writing, something I was always interested in, but never made time for. I write with my eyes, thanks to technology from Team Gleason. So far I have written two books. The first is ‘My Guide to Living with ALS’, and the second is ‘Life Without Regrets. Have Fun While You Can!’I am now working on my third. The first two are available for free on my website http://www.JasonRolls.com
    Attitude is Everything!

  4. Patricia says:

    Very interesting article today Rick, sometimes we give up. I give up every day. Then as the day progresses I try
    to enjoy what makes me happy, painting specially.

    It was particularly uplifting to read about all the famous people that found the way to let go of the blues…

  5. @storiesofpals says:

    That was such an interesting perspective about narrowing your focus and appreciating what you have while you have it. Thank you so much for sharing it. I am really enjoying your writing. If you’d like to share a story on our Instagram page, @StoriesofPALS, which is dedicated to raising ALS awareness we’d be honored to feature you.

  6. HOWELL says:

    BEST HEALTH

    I was diagnosed with ALS in April 2017 and I decided to fight this naturally by better diet, natural herbs, organic food, and eliminating all toxins in my life. I can gladly say my fight is over, after using ALS herbal remedy I purchased from Best Health Herbal Centre, the herbal remedy drastically slowed my progression the first week of usage and reversed my ALS the last week of usage. I used the ALS herbal remedy for only six weeks.

    I am a man of faith and I believe that when HOPE is lost ALS wins. Believe you can beat this disease naturally and have faith that nothing is bigger than God.

  7. Terri Metz says:

    I have just been diagnosed a few days ago. I am in shock. As someone else here said – I am seldom sick and was in good health. I am 75 and I feel like I life is over. I know I have to get over this sense of doom. I am planning a bucket list of some few things that I want to do -nothing sensational. Just time with family and a few trips to the coast. I will be going on Riluzole and an infusions of Radicava. Has anyone done this.Not a cure but slows down the nerve damage.

    • Pupper says:

      I was diagnosed March 2017 with Bulbar onset ALS.I was 70 years young and had not been to the Doctor in 5 years. After looking back I believe I had symtoms before my diagnoses and didn’t know the cause. My Son (stepson I raised from the age of 3) had Duchenne MD and passed at the age of 22. You can only imagine my reaction when they told me I had ALS…I knew I would become a “burden” to a Family that had suffered already for 15 years from MD. I have lost my ability to speak and swallow and eat (I have a feeding tube) Since my diagnoses I have lost over 80 pounds. I am still able to walk on my own and so grateful to God for that fact! I was able to get the Radicava and am currently in my 8th cycle. I believe it has slowed down the symtoms. My newest thing is swelling of my hands and feet….this caused from the muscles not working to pump the blood back to my heart. “IF” you have a bucket list I would say DO IT NOW! My Son was extreamly intelligent and caring.He won the regional Spelling Bee and when he completed HS the other students gave him standing ovation.When people stared at him (as they often did) he said “They just get it”….and he was right May God Bless your efforts on your journey…remember “You are not alone!”

Leave a Comment

Your email address will not be published. Required fields are marked *