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Commentary by Patti Rasmussen
| Thursday, Aug 21, 2014

mug_pattirasmussenMention ALS today and you think “Ice Bucket Challenge.” That wasn’t the case 25 years ago when the disease first entered my world.

In 1988 my father-in-law, Carl Rasmussen, was retired and living on a small ranch in Sand Canyon. Born and raised on a farm in Fort Collins, Colo., he had come full circle after years in the construction business and was now enjoying life, raising Appaloosa horses, enjoying his many grandchildren and dating a nice lady. He was 68 years old.

That summer of ’88, Carl noticed he was having difficulty holding onto the reins of the horses he exercised each morning. Thinking it was arthritis, he would take pain meds and knead his hands to help ease the suffering. But the pain got worse, and he eventually went to the doctor who performed a series of tests.

After ruling out several possibilities, the doctors informed Carl that he was in the early stages of amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease. The prognosis was not good. The cause of ALS was unknown, the doctor explained, but it was painless, non-contagious and cruel. The motor function of the central nervous system is destroyed, but the mind remains fully aware to the end – or as my husband likes to say, “A front row seat to your own demise.”

All we, the family, really knew about ALS was that Lou Gehrig, at 38 years of age, was forced to retire from baseball because he couldn’t run anymore. But that was 1941.

Our journey into ALS became one of seeking information. As Carl progressed through the symptoms – not being able to walk or talk, eat or swallow – we kept asking questions and seeking relief for this man who was so kind and gentle and needed our help.

My husband Charlie, sister-in-law Susan and nephew Tony deserve a lot of credit during this period. There were there by Carl’s side as he slowly declined. Whether reading stories to him from his favorite author, Louis L’Amour, or massaging his hands and legs so they wouldn’t atrophy, Charlie, Susan and Tony never left his side.

Carl died in May 1988, just eight months after receiving his initial diagnosis. As sad as it was to say goodbye, I was happy he didn’t suffer long.

But I have some great memories of that period, also. One in particular involved Game 1 of the World Series with the Dodgers playing the Oakland Athletics. Yup, we were there that night when the sick and injured Kirk Gibson stepped up to the plate at the bottom of the ninth as the Dodgers were trailing 4-3.

It is well known that many Dodger fans leave around the seventh inning. We were still there because it wasn’t easy for Carl to get around. When Gibson hit that home run, we watched the folks in the parking lot head back into the stadium to see why we were all screaming. The Dodgers ending up winning that game and a World Series title.

Through the years following Carl’s death, my husband’s family has spent a lot of time and money working with the ALS Association as it tries to find a cure. It is a strange, horrible and unknown disease.

Ice Bucket Challenges have been around for years, and usually it is to raise money for one charity or another. Social media put the face of ALS on the ice bucket when the Golf Channel Morning show televised and performed a live, on-air challenge in June. Golfer Chris Kennedy challenged his cousin, whose husband had ALS. The cousin, Jeanette Senerchia of Pelham, N.Y., put her video on Facebook, and the connection and challenges began.

I do worry that the seriousness of the disease is being overshadowed by the silliness of the bucket challenge – but I’m happy to hear the ALS Association has received millions for research because of this Ice Bucket Challenge.

If ALS is to have a face, we now have millions.

 

Patti Rasmussen is a freelance writer in Santa Clarita and a member of the city Arts Commission.

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12 Comments

  1. Gerry Sauer says:

    Great article Patti. I’m glad your father-in-law did not suffer too long with ALS. I’m not surprised that Charlie, Susan and Tony spent so much time with Carl and helped to make his last days as comfortable as possible.

  2. Great story Patti !! Thanks for sharing :)

  3. This is a wonderful tribute to your father-in-law. It is so sad how ALS destroys people’s lives. The Ice Bucket Challenge is a great way to gain exposure for this disease. However, much of the funding goes to flawed animal experimentation. My uncle was diagnosed with ALS. As the disease progressed, he was given about 6 weeks to live. My sister is an acupuncturist. Her instructor, at the school she had attended, started treating my uncle with Chinese herbs. He lived to see the birth of his grandson and 1 1/2 years later died of pneumonia. Did the ALS Foundation help him? I don’t think so. It was a combination of his will to live and the Chinese herbs. There are alternatives to many diseases. Remember that Traditional Chinese Medicine is thousands of years old. ALS is a uniquely human disease. In animal research, “Researchers have artificially created animals who show some symptoms that resemble ALS. But as in so many disease areas, the animal “models” only mimic some of the symptoms of ALS and they differ in what symptoms they produce and the causes behind those symptoms. Thus these animal models are extremely poor substitutes for studying uniquely human diseases.”, Dr. Aysha Akhtar. We need to look in different directions at cleansing, detox, herbs, nutrition, etc. for the cure.

    “Insanity: doing the same thing over and over again and expecting different results.”
    Albert Einstein quote.

  4. Veronica McKall says:

    My grandma has Lou Gehrig’s disease, she is about 75 years old it was diagnosed 2 years ago. Right now it’s getting more difficult to live for her, because of stiff muscles she can’t even move. Riluzole and Edaravone medicines are given, but won”t give much relief. She can”t eat food without choking. I thought this might be the last stage and the medications she was given did not help at all, so I started to do alot of research on natural treatments, I was introduced to Health Natural Centre and their ALS Herbal Protocol. She started on the ALS/MND Treatment last year, her symptoms gradually diminished including her vocal cord spasm, Body Weakness and Difficulty with swallowing. Reach them at healthnaturalcentre.org , She is getting active again since starting this treatment, she is able to walk again ( down the street and back )she have also resumed exercising to strengthen muscles!! God Bless all ALS Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for these remedy but you would probably need to decide what works best for you.

  5. Meyer Odette says:

    Last year, my 68-year-old partner was diagnosed with Lou Gehrig’s disease also known as ALS. Speaking and swallowing were two of his challenges. His collapse was swift and catastrophic, and neither the riluzole nor the medical staff did much to aid him. He would not have survived if our primary care physician hadn’t given him attentive care and attention, as the hospital center didn’t provide any psychological support. His fall was abrupt and catastrophic. His hands and legs gave way to weakness in his arms. This year our family physician suggested using vine health centre ALS/MND treatment, which my husband has been receiving for a few months now. I’m delighted to say that the treatment greatly reduced and reversed his symptoms of ALS, he no longer requires a feeding tube, sleeps soundly, works out frequently, and is now very active. In the hopes that it could be useful, I thought I would relate my husband’s tale; in the end, you have to do what suits you the best.

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