family life

ALS Awareness

I’ve recently added this little sunflower logo to my sidebar:
Defeat ALS

After being diagnosed with Amyotrophic Lateral Sclerosis, a woman named Shirley noticed that there was no symbol for ALS awareness; nothing like the pink ribbon for breast cancer awareness. So she proposed the sunflower as a symbol of hope, grace, and dignity.

Shirley explains: “The sunflower stands tall and strong, ever hopeful and ever reaching higher.  Sunflowers grow in clusters and support each other as they grow, just as family, friends and community offer support to those who live with ALS.”

Most people don’t seem to know much about ALS unless they have personally known someone affected by the disease. In fact, most people have a rather blank look when they hear the term “ALS” until I tell them it’s also called Lou Gehrig’s disease.

I didn’t know much about it either. Years and years ago, I remember watching an old black and white movie about Lou Gehrig. This award-winning movie, made in 1942, was called Pride of the Yankees, and starred Gary Cooper as the famous pro baseball player. It was the only reason I’d ever heard of this disease — until my dad started having some odd medical issues that caused him to have a bit of difficulty swallowing, and friends and family began to notice that his speech was slurred. ALS was mentioned as one of the possible causes, but it seemed more likely to have been something like a mild stroke. None of us, not even the doctors, it seemed, wanted to think of ALS as a real possibility.

Now, it’s two years later. After multiple specialists and countless tests, my dad has recently been given the diagnosis of ALS.

In reality, nothing has changed with this diagnosis. It’s still just a matter of dealing with whatever issues come up. There is no way to know how this may progress. Right now, my dad still lives in the mountain, splits wood for the stove that heats the house he built by himself, hikes several miles up his mountain nearly every morning, and rides his Harley-Davidson whenever the weather is good. Last Sunday, he spent the entire day skinning a 250-pound black bear (shot by a friend) to make himself a bear skin rug.

But he can’t talk anymore. I never thought about it until all of this happened, but it makes me very sad to think that I won’t hear him call me silly nicknames or make the funny noises he always used to make.

And he can’t eat anymore. He got a feeding tube a few weeks ago because he was having so much trouble working his lips to be able to drink, but he was still able to eat a bit of pureed food. Now he can’t swallow at all.

Humor me for just a moment, and try to wrap your mind around all the implications of no longer being able to speak or eat or drink.

The harsh reality is that if this is indeed ALS (and there really is no reason to believe it is not), then at some point the disease will begin to affect the muscles in his extremities. Not an easy thing for anyone, but particularly not for a man as stubbornly independent and physically active as my dad.

Walk to Defeat ALS is coming up later this month but I’ve decided not to participate in it this year; my dad has not come to terms with this diagnosis, so I don’t want to make a big deal of fund-raising and such right now. I’m only writing about this because he doesn’t have internet, and doesn’t read my blog. When I do write more about this in the future, I will do my best to find a balance of being real, but respecting his dignity in regards to what I share.

If you’d like to find out more about ALS, or if you’d care to make a donation that will go towards research and awareness, you can do that at the ALS Association website.

And if you’d remember my dad in your prayers, I’d appreciate that greatly.

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Melissa Howard

I’ve known two people from our church who have succumbed to this terrible disease. My friend Jane was able to speak until the end – what a gift for her.

My uncle is dying of a disease with a similar progression as ALS but which does not move nearly as rapidly as ALS typically does.

So you have my sympathy and prayers. Your Dad sounds amazing to continue with doing so much even with the loss of voice and ability to eat.


It sounds as if the the sunflower is an accurate symbol for those like your dad who are faced with ALS. He sounds both strong and proud. We will be praying for him! And you too:)


Jamie, I can’t imagine what it must be like for you not to be able to hear your dad’s voice anymore and to know that this fiercely independent, strong man will someday not be able to do all that he is now. By documenting what you have even today…by writing out the story of him skinning a bear and splitting his own wood, you are creating something that your daughters will be proud to read. I know the difficulty of finding the balance of how much to share, but you have done so beautifully in this post and I know… Read more »

Barb-Harmony Art Mom

Sending you great big HUGS Jamie. You are such a great support to your Dad right now and talking about it helps. I know when my boys were diagnosed with a lesser known disorder that it was the best therapy in the world to talk about it. Also, it is encouraging to others to know that just being diagnosed doesn’t mean that you roll over and wait for the worst. It sounds like your Dad is really trying to have as full a life as possible and you are honoring that.

Kris @ Weird, Unsocialized Homeschoolers

Praying for you all, Jamie.


((hugs))) my friend and lots of prayer heading your way!


I have been following you on twitter and seeing the status on your dad. I was kind of wondering what was going on with him needing a feeding tube, but still being able to skin a bear.

Thanks for sharing this. He sounds like an amazing man and I’m sure this disease is very frustrating for him.

I will definitely pray for him and you.


How difficult to see those changes in your dad. I will be praying for him and your family. Thank you for sharing about it. I had no idea what ALS was until I read your post. I agree, the best therapy is to share and to educate others. You never know who you might help.

Kara @ The Chuppies

I’m so sorry Jamie…I will pray.
I notice the button 2 days ago and meant to ask.
We have a friend who had ALS and so I’ve researched it quite a bit…so I could understand as much as possible.
I’m so sorry…does your dad know the Lord?


Oh, Jamie, what a hard providence. I’m so sorry. I know I can’t begin to imagine the difficulties and heartaches. I’m praying for you and for your Dad.


hi jamie!i understand how you feel and i understand what it is like to be diagnosed with a disease that people never heard of and look at you with confusion.two yrs ago i was diagnosed with Ankylosing Spondylitis.this is a genetic autimmune brittle bone form of arthritis.if you look up this disease it will tell you it is found mostley in men but this is untrue.i have found [me included]just as many also says excersise will some cases this is true but like me it is not always the yes i will incluse him in my prayers… Read more »


thanks for posting. i sent your link to a girl who lost her mom to als a couple of years ago…maybe you guys can encourage one another!

Tony Scott

“In reality, nothing has changed with this diagnosis. It’s still just a matter of dealing with whatever issues come up.” This is such a courageous point of view and I admire you for this. Take care of your dad and of yourself.

Pamela Price

I watched a friend support his father through this diagnosis. I’m sorry. I’m also walking alongside my mother on her journey with rheumatoid arthritis. Having an ailing parent is so difficult, especially when you’ve got young kids and see the contrasts between robust youth and illness/pain. Much love to you and yours.


Hi Jamie, I was sent your link and I just want you to know that you and your dad will be in my thoughts and prayers. I lost my mom with ALS in April of 2009, so I understand what you are going through right now. My mom also was a vibrant and independent woman. It was so difficult watching her lose the abilities that we to often take for granted. Again, please know that I will be praying for ya’ll and take care. God Bless! Brandi


Praying for your father and for your family.


I ran across your blog when I searched “homeschool and caring for ALS”. My husband was diagnosed Just barely 12 months ago with ALS and the disease has progressed VERY rapidly. He has the most aggressive type, unfortunately. We have three children, one of which I am considering homeschooling due to a combination of school and Common Core curriculum issues. My attempt was to gather research on how feasible this might be while caring for my husband. Our daughter is only in first grade at this time, we have two high school students and my husband is total care. Any… Read more »