Reblog: 3 ALS News Items to Note: Exercise, a Documentary, and a Love Story

 

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I don’t know about your email inbox, but mine often overflows with news alerts. I can usually buzz through them fairly quickly, but last week, three items caught my eye and had me clicking through to learn more.

Exercise is safe for ALS patients

Until my ALS diagnosis in 2010, regular daily exercise was an integral part of my wellness program. So, it surprised me to learn that researchers debated the role of exercise for ALS patients. Imagine my disappointment to read that some medical professionals even advised against exercise altogether.

Nevertheless, I put my trust in my years of fitness training, followed my gut instincts, and continued to perform a modified version of my previous workout. Exercising made me feel better and sleep better, plus it helped me adjust to my body’s new limited way of moving.

Meanwhile, I kept a watchful eye on emerging research. Initially, studies looked at and confirmed the benefits of simple range-of-motion exercises. Then studies examined the intensity of exercise, recommending ALS patients work out at a moderate level.

Recently, the results of a six-month study comparing three different types of exercise or modalities shared more. I’ll admit to being a little more than pleased to read that resistance, endurance, and stretching/range-of-motion exercises are all well-tolerated by ALS patients. Furthermore, there was a trend toward fewer falls in the resistance and endurance exercise groups.

In a webinar scheduled for April 3, the physicians and staff at Johns Hopkins University will discuss the research results in more detail. You can bet I’ll be listening!

The Augie movie

Another interesting item in last week’s news was the March 20 release of the documentary movie “Augie” — the life story of Augie Nieto.

Back in 2005, while working as a wellness director, I came across the announcement in a fitness journal that Augie, the man behind Life Fitness and the Lifecyclewas diagnosed with ALS. In fact, that was the very first time I had even heard of ALS. I remember wondering briefly what exactly ALS was. Little did I know that only five years later, I would receive the very same diagnosis!

Since then, I’ve tracked Augie’s life journey with ALS. As his symptoms progressed, he embraced technology and various augmentative devices to continue his quest to create foundationsfundraising campaigns, and research institutes to find a cure for ALS.

And now, he has managed to bring ALS awareness to a whole new platform: mainstream motion pictures! Congratulations, Augie! I will certainly add your film to my “must see” list.

‘Rachel’s love story: Living with ALS’

Finally, another type of film made its way through the ALS community, this one a beautiful and moving video profile of my co-writer right here at ALS News Today — Rachel Lynn Doboga.

At the age of only 28, a little over two years ago, Rachel’s life took an abrupt turn when she was diagnosed with ALS. But thanks to her inner strength and positive attitude, she has persevered. A loving husband, family members, and many friends are certainly keys to her ability to adapt and live with her ALS symptoms.

Readers of Rachel’s The Mighty Mind column on ALS News Today should appreciate the fact that Rachel uses rapid eye movement software to compose and type her many articles and blog posts. Each word is painstakingly created by her eyes picking out letters on a computer screen.

It is an honor to write alongside Rachel and share our individual patient perspectives. I encourage you to watch “Rachel’s love story: Living with ALS.

It’s often been said, “With ALS, we are in it together.” But we also know that, together, we can raise awareness and, together, we can find the cure.

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