They Told This Man With ALS to Quit The Race. Here’s Why He Didn’t.

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Two months after his Amyotrophic lateral sclerosis (ALS) diagnosis in May 2013, Derek Hogg ran the Strike Out ALS 5k in Chicago. His time? Twenty-two minutes. Fast for a fit firefighter, and especially fast for a man with ALS, a disease that affects the nerve cells in the brain and the spinal cord, according to the ALS Association.

“When I first got diagnosed, I didn’t even know what ALS was,” Hogg told The Mighty. Jump forward two years, Hogg knows all about the condition, especially how it affects his body. His disease’s progression has made it difficult for him to walk without assistance or even hold his cellphone. Despite this, he wanted to continue the tradition of running a 5k in July that weaves through the Chicago White Sox parking lot and baseball field for the third year in a row. The Strike Out ALS 5k benefits the Les Turner ALS Foundation.

Hogg’s wife Holly and his doctors advised him against participating this year, worried he’d fall on the course. His loved ones suggested he use his motorized scooter to complete the 3.1 mile race.

But Hogg’s oldest son Paxton, 3, saw past his disease and encouraged him to continue the tradition by running the race. “If you think I can do it, I can do it,” Hogg recalls telling his son.

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Via Les Turner ALS Foundation

He started out the race pushing Paxton in a stroller, using it as support. A quarter of a mile through the race, Hogg realized he was the only one left at that point on the course. Even the people walking the route were long gone. “It was pretty barren. Just me and my son in the stroller,” Hogg told The Mighty. “He wanted to know… where did everybody go?”

Half a mile in, Hogg apologized to a race volunteer for his lack of speed. The volunteer assured him they would wait to take down the course until he finished. After an hour and one mile in, Hogg saw his dad and mother-in-law. They urged him to quit or at least sit down and rest.

“I kept my head down and said ‘Nope, I gotta finish,'” Hogg told The Mighty. “At this point my legs started to give out. I knew if I sat down I wasn’t getting back up.”

Hogg was confident he could finish the entire race, but a medic along the route urged him to make a turn to cut the distance and finish in the next half mile instead. Hogg knew he’d be on the course well into the night if he didn’t follow the medic’s advice.

As Hogg trudged onward, he felt his body was past its limit.

“I didnt look up. I was concentrated on one step at a time,” he told The Mighty. His concentration was so deep, he didn’t even notice the friends, family and strangers loudly cheering him on until he crossed the finish line.

Hogg knows he didn’t break any records running the 5k; it took him two hours to complete his course, but he hopes his determination will inspire other people to give their 110 percent.

“If you really put your best foot forward, you never know what the end result will be,” he said.

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Via Les Turner ALS Foundation
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Via Les Turner ALS Foundation
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Why It Took 10 Months to Name My Mental Illness

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I’m 34 years old. I have a husband, a dog and a Master’s degree in teaching special and elementary education. I also have Bipolar I disorder. Last February, I had suicidal depression and thoughts of harming myself. I called my therapist, who called my psychiatrist, and I was admitted to the psych ward for the first time in 10 years. The psychiatrist at the hospital rapidly changed my meds. I was soon discharged, but suddenly, something strange started happening.

My legs and feet shook constantly. It exhausted me. I could no longer teach school. The tremors were so debilitating I was unable to drive, use stairs, read or stand up to take a shower. I was dizzy most of the time so I tripped a lot and ran into things. I had to use a walker for awhile. Writing by hand was nearly impossible. Eating and sleeping took great effort. Even speaking was a trying task; my jaw clenched, my temples ached and I had neck spasms. Eventually I started having severe migraines and went to the ER once for treatment. My primary physician was able to help out with the migraines, but the shaking continued. I just couldn’t sit still.

I ended up applying for disability. When I did get out of the house, people would stop me on the street and ask if I had Parkinson’s disease or restless leg syndrome. Those were the least offensive questions from the public. Others asked me if I was anxious, impatient, dancing, had “ants in my pants” or badly needed to urinate.

What I was experiencing was severe dystoniaa disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features. But although I knew what was happening, it didn’t seem to have a cause. 

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First, my psychiatrist thought I had akathisia, which is stress and restlessness due to antipsychotic medications. She treated me with medication for it with no results. Then I was put on at least 10 different medications for Parkinson’s disorder. All that did was made me fall asleep as early as 5 in the evening. When my psychiatrist recommended a neurologist who performed an MRI, the results came back normal, seemingly to his disappointment. He rudely said, “There’s nothing wrong with you,” as I shook violently in front of him. My therapist was with me every step of the way, but after the MRI I was at the end of my rope and started feeling suicidal again.

My husband and I found a new psychiatrist. He immediately sent me to a different neurologist. The neurologist did a few tests on my reflexes and had me walk across the room. She was very kind when she told me I had psychogenic movement disorder, a somatoform disorder, or a mental illness that causes bodily symptoms with no apparent physical cause. 

After 10 months, my illness finally had a name. My new psychiatrist prescribed me anti-anxiety medication and I started feeling better within the week. I continued therapy and my stress level dropped significantly. But I was lucky.

Psychogenic movement disorder is rare and obviously difficult to diagnose. Some people with the disorder are in wheelchairs. Some never see their symptoms improve. An accurate diagnosis is imperative, but it can take a long time to get there. Never underestimate the value of a second, third or fourth opinion when it comes to your health. You deserve to have answers.

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A Prayer for Special Needs Moms at the Start of the School Year

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Although I wrote this prayer seven years ago, I find myself returning to it every year when approaching fall and so many unknowns.

As a mom of two sons with widely diverse needs and school programs, it is always a challenge to adjust to new school routines, expectations and individuals in our lives we must answer to and learn about, just as they have to learn about us. How will communication work this year? Who will be my “go to” person in the school? How will I know how my kids are really doing?

My 11-year old son who has autism will need much more support than my 13-year old son who has autism but is high-functioning and independent. They both will need compassion, patience, kindness and understanding. As will I.

Whether it be to a higher power or a school administrator, it’s a prayer I feel we all can relate to.

A Prayer for Special Needs Moms at the Start of the School Year:

Please, oh please let this be a good year for him.

Please let his teacher’s classroom be structured, but not rigidly so.

Please let her have patience and humor, but be firm enough to set boundaries.

Please let her have some smidgen of knowledge that different is not wrong.

That behaviors are not meant to be disrespectful.

That hints and subtleties are not ignored, but rather missed.

And that she has a little boy with a very tender heart who wants to please.

Please help her communicate with me in ways that are constructive.

That are helpful and kind.

That are seeking answers, and not blame.

And that are open to our support and adaptations.

Please let the other kids realize that awkwardness is not rude, and a loyal friend lies inside.

And please, don’t let others sell him short, for he is truly intelligent and a valuable teacher himself.

Please let my son have a good year, and learn the best he can.

Amen.

The author’s sons

Follow this journey on Everybody Stims.

 Lead photo source: Thinkstock Images

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When a Troop Leader Asked My Son With Special Needs to Join the Scouts

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When I answered a phone call four years ago, I had no idea the stranger on the line would eventually become one of the most important people in my son’s life.

I didn’t know Mrs. B, but I did know we both lived in the same small town and that she was a special education teacher at a local school. I saw her occasionally walking her dog down the road but never really ever spoke with her.

I was shocked when I heard the reason for her call.

She had called to ask if my son could possibly become part of the town’s Cub Scout troop.

I was floored.

No one had ever asked for my son to be part of anything.

I honestly can’t remember some of the details of the conversation because I was in too much shock. But I do recall stammering about his disability, trying to explain why she might not want him there.

Mrs. B kindly reassured me she knew about his diagnosis, and that she and the other boys in the troop wanted him there because my son was a “good boy.”

That simple phrase, kindly delivered, gave me hope my son would be able to experience the joy of being part of a group of other children around his age.

So with great trepidation, I gave my permission for my son to join the troop.

As the troop leader, Mrs. B proved to be incredibly patient and calmly addressed my son’s socially unacceptable outbursts and actions in a way he was able to process. But she also genuinely seemed to like him and made him feel like he was “one of the guys.”

She found humor in many situations that would have caused almost everyone else to choose to not interact with him and related his activities and interactions with the other boys and leaders to me in a consistently positive manner.

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To ensure my son would be properly supervised, she actively participated in every activity along with the boys, weathering sub-zero temperatures so my son could compete in the mid-winter Klondike Derby, handling the fish and worms for my son who wanted no part of that aspect of fishing and allowing herself to be carried through the woods on a travois pulled by my son as part of a first aid badge activity.

She also personally bought my son Gatorade and pizza countless times as a reward for his hard work, pulled strings so he could attend Boy Scout camp under the safe oversight of her co-worker and spent countless hours helping my son complete his badge paperwork.

She also became one of my best friends, providing information, advice and suggestions, which have helped me to ensure my son’s academic success. She encouraged me to allow my son experience some “normal” activities, telling me that he might surprise me. She also asked me to walk with her several times a week so I would experience a few minutes of respite.

I wish there were more people like Mrs. B in this world. Her obvious compassion and care has made all of the difference for my son, giving him the gift of being treated just like everyone else and giving me the gift of seeing that someone else truly cares for my son.

My son is only a few months away from earning his Eagle Scout rank, an achievement which is due to the sacrificial work and care of Mrs. B, a former stranger who is now one of my son’s greatest advocates.

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Jon Stewart’s Final Episode Raised More Than $2.2 Million for Autism

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On Thursday night, the world watched as Jon Stewart, host of “The Daily Show,” took his post behind the anchor desk for the last time. The comedian left more than a mark on comedy history, though. With charity fundraising company Omaze, he helped raise more than $2.2 million for New York Collaborates With Autism (NYCA), Business Insider reported. NYCA is a nonprofit organization that creates programs to improve the lives of people with autism spectrum disorder.

Stewart reached the tremendous amount by giving fans the chance to win two tickets to his show’s final taping. To enter, a person had to donate $10 or more to the cause. More than 47,000 people entered, with an average donation of $45.50, according to BI. The winner, below, and his guest also got to meet Stewart.

In February, Stewart hosted the sixth biennialNight of Too Many Stars: America Comes Together for Autism Programs” in New York City, an event that featured performances and sketches from comedians like Steve Carell, Paul Rudd and Louis C.K. Since 2006, the event has raised more than $18 million for autism schools, programs and services, according to its website.

We’ll miss you, Jon. Thanks for doing some good.

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To the Friends, Family and Classmates Who Don’t Invite My Child With Autism

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It’s a scenario I hear time and time again: our autistic kids getting left out from birthday parties.

Whether it be from classmates, friends or family. It stings.

Some of our kids may not care. They don’t like to be around a bunch of loud people. But asking is still the right thing to do. Don’t assume they, or we, won’t want to take part. Include us! Let us make that decision for ourselves.

If we decline, understand. It’s not you. We may be having a rough day. Our kids may need a break from sensory stimulation. We may have therapy engagements. There could be a million reason we can’t come, but you won’t know unless you invite us.

Recently, it happened to my son. He doesn’t know yet. I assure you when he does, he will be hurt. He’s sensitive. He constantly worries people don’t like him or think he’s weird.

I hid the pictures of this party from my Facebook timeline when I let him play a pool game on my account. He also has a generic account, that his father and I control, to play games. I logged into that and hid the pictures from that timeline too.

It’s just a matter of when his friend says something about the party. He will know. He will know he wasn’t asked. He will then ask us why.

How do we answer that?

Maybe it was an oversight? It happens. Or maybe it wasn’t. We’ll never know because I won’t ask. I don’t like confrontation like that.

All I know is, it hurt. When those pictures of his friend and the other kids having fun came through my feed, my heart sank.

It’s hard when your kid isn’t included. We know how amazing our children are. Sadly, others can’t see that. Judgment clouds their minds. They assume our children are bad or a problem or a handful.

Get to know them. I promise you won’t be disappointed.

You will see life from a perspective you never expected. You may even learn a few things. Like tolerance, acceptance and perseverance.

Our kids deserve that and more.

So please, from one mother to another, don’t forget us! We matter!

This post appeared as a guest blog on Kelly’s Thoughts on Things.

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