This is What ALS Looks Like

For the general public, ALS might bring some specific images to mind. Many might think of grainy black and white newsreel footage of Lou Gehrig standing in Yankee Stadium. Others might picture the same scene but replace the actual Gehrig with Gary Cooper from the movie Pride of the Yankees. Still others might picture—and hear—Stephen Hawking and his computer-generated voice. More recently, Steve Gleason has become what many think of when they think “this is what ALS looks like.”

But for those living with ALS and those caring for them, the disease isn’t embodied by a famous person, present or past. ALS looks like a kitchen reconfigured to allow for a power wheelchair at the table. It sounds like a ventilator or the hum of other medical devices. It feels like grips on silverware or textured plastic cups.

As we begin May and ALS Awareness Month, we want to explore what ALS looks, feels and sounds like for those with ALS and their families. As these families know, the progression of the disease means near constant change—some that can be planned for, and some that can’t.

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Walking Together: Walk to Defeat ALS Committee Members Walk for Many Reasons

As the days grow longer and warmer, we in the Midwest turn out thoughts to summer. And with summer comes the ALS Association St. Louis Regional Chapter Walks to Defeat ALS®. The Springfield, Illinois, Walk is June 15 in in Southwind Park. The St. Louis Walk is June 22 in Forest Park.

These walks would be not be possible without the work of the Walk Committees. Committee members are involved as participants and behind the scenes, playing an integral role in the success of the events. The committees assist in booking vendors, securing in-kind donations, supporting team captains, recruiting volunteers and assisting with the planning of the events.

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Having the Conversations None of Us Want to Have

Conversations about end-of-life care and advance care planning are difficult in the best of circumstances. For those with ALS and their families, these conversations present their own challenges, and the challenges of these conversation are often unique. It can be hard to think about planning for the future while the present has so many complications of its own. It can also be upsetting to think about declining abilities and the inevitable outcome of the disease. But having these important conversations about the future at a time and place that you decide can provide piece of mind for everyone involved.

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Walk a Crooked Path: The Big Bad Wolf and the Three Bears

By Saundra Stewart

Not so long ago in a land not so far away lived a brave, strong man and his white-haired wife.  They loved their little blue cottage on the hill.  They loved playing with their grandchildren, going for long bicycle rides, and camping – especially camping!

One day, life was going along much as normal, when there came a knock on the door.  When the brave, strong man went to answer, there on the porch stood a big, ugly, horrible wolf.  On the front of his sweatshirt were the letters “ALS.”  The man didn’t know what that meant, but he knew the creature was one of the ugliest things he had ever seen!  Right behind the wolf were three bears.  Big bears.  Scary bears.

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Care Services FAQ

The care services team at the St. Louis Regional Chapter are the forefront of knowledge and information on ALS and what it looks like to live with the disease in our region. They answer questions from people with ALS and their families on a regular basis as they meet with families at clinics or during home visits. Here are the answers to some of the most common questions they receive.

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Making Your Voice Heard on Capitol Hill

On March 13 and 14, ALS advocates went to Capitol Hill to speak with representatives about legislation and policies intended to improve the lives of people with ALS. ALS advocates Mark Calmes and Tara Klucker had preliminary meetings with key legislators that are pertinent to our legislative priorities.

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Reflections from our Director of Programs and Services for Patient Care

Anna Zelinske, M.A., CRC, CCM joined our staff in the role of Director of Programs and Services for Patient Care last month. Anna has 19 years of experience in the disability field, with a Bachelor’s Degree in Psychology and a minor in Human Service Agency Management from Missouri Valley College, and a Master’s Degree in Rehabilitation Counseling from Maryville University. She has a niche for developing and overseeing quality programs with a solid understanding of addressing the needs in the community and working with a team to making a positive impact for those served. In today’s post, Anna shares her story of how she got her start in the disability field and her work at the Chapter so far.

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