A Husband and Caregiver’s ‘ALS Experience’

Ronnie selflessly cared for Linda, his wife of 20 years, throughout her fight with ALS.

“The hardest thing anyone can experience is watching a loved one slowly die [when you] can’t do anything about it,” he said. “It doesn’t matter what disease they have.”

He added, “ALS is [an] ugly disease. It slowly takes away the person we saw being able to take care of themselves and enjoy life. The sad thing is…there is no cure. The person who has ALS just slowly wastes away.”

Linda was diagnosed with ALS on April 16, 2012. She passed away less than 14 months later – on June 8, 2013.

“If it wasn’t for God, I couldn’t have made it through,” Ronnie said. “I pray every day for all the caregivers and have the utmost respect for them.”

He wrote “ALS Experience” after Linda’s death.

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Guest Post: ‘I Would Still Serve My Country’

By Russell Mikunda

Before being diagnosed with ALS, I had no idea that veterans are twice as likely to be diagnosed with the disease. Even knowing what I know now, I would still serve my country.

I was in the Navy for eight years, reporting for duty on three different ships during my time in the service. During my second deployment, we were off the coast of Beirut when things started to heat up during the early 1980s.

I’m very proud to be a veteran. The VA (Department of Veterans Affairs) takes good care of me. But sometimes I worry that everybody with ALS doesn’t get that same high level of treatment I do.

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Guest Post: ‘Those With the Most to Lose Should Be Speaking the Loudest’

By Stan Williams

Last year, I sat in the Washington, D.C., offices of my four elected Indiana representatives and saw in their eyes how my words, and the words from my wife, pierced their hearts.

Attending the National ALS Advocacy Conference left me with the unmistakable conclusion that those with the most to lose should be speaking the loudest. We must explain to our elected officials how their inaction affects people living with ALS.

Our real-life experiences of my own battle with ALS, including my wife’s challenges as my caregiver, had an impact on the Congressmen. They listened intently. Some even shed a tear or two.

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Guest Post: ‘I’m Really Fighting for My Family’

By Stacy Crowder

There’s no sugarcoating it. ALS is terrible.

Unlike many fathers this Halloween, I couldn’t carve a pumpkin with my kids. I also couldn’t help them put on their costumes or take them trick-or-treating.

I didn’t know much about ALS before my diagnosis, but I became an expert pretty quick. I also got to work fighting – and not just for me but to bring hope to everyone living with ALS.

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Team Challenge ALS Climbs to Defeat ALS

An amazing group of people came together for Climb to Defeat ALS earlier this month. The first Team Challenge ALS team summited Mt. Elbert in Colorado on September 7 and has raised over $65,000 for The ALS Association, so far.

We asked a few team members to tell us about their experiences.

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Guest Post: We Don’t Have Five Months to Wait

By Mary Johnson, Caregiver – Western Pennsylvania

Note: Under current law, people disabled with ALS who qualify for Social Security Disability Insurance (SSDI) must wait five months before receiving SSDI benefits. Every person must wait, regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.

The ALS Disability Insurance Access Act (S.379/H.R.1171) would eliminate that five-month waiting period for people with ALS to receive SSDI. People with ALS would receive their SSDI benefits immediately after being approved by the SSA.

The five-month waiting period for Social Security Disability Insurance (SSDI) after an ALS diagnosis has severely impacted my family and I’m mad as hell about it. There’s absolutely no reason people with ALS shouldn’t be getting both SSDI and Medicare benefits immediately.

I can tell you from my own experience – we don’t have five months to wait.

My family has the genetic form of ALS (familial ALS). As of June 2018, I’ve lost 14 family members — siblings, aunts and uncles, nieces and nephews, and cousins – to this horrific disease.

My 25-year-old niece, Amanda, died four months after her ALS diagnosis – before the SSDI waiting period was met. The same situation occurred for my niece, Shannon, who died at age 34. She was diagnosed in January 2013 and died just two months later.

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ALS Takes Away a Person’s Livelihood

In New Video, People With ALS Talk About Losing Jobs to the Disease

This weekend, people across the country will pause to reflect on and celebrate the economic and social value of American workers. And on Monday, many of them will enjoy a paid holiday off from work.

As we light the grills to enjoy a long Labor Day weekend and enjoy a break from some of the doldrums of work – the long commutes, the looming deadlines, and the stress and monotony – there are many people who want to work but are unable to do so.

One of the first things ALS often takes away is a person’s ability earn a living. In this new video, people living with ALS, along with their caregivers and friends, talk about the impact ALS has on the ability to work.

Please watch and share this video with your friends and family and encourage them to join the fight for a world without ALS.

Continue reading ALS Takes Away a Person’s Livelihood