Thank you for doing this interview Herbert and bringing attention to these men and their fight with ALS.

It is sad & makes me angry that insurance & medicare has been denied when they need it most.

thanks for doing this..... very sad and very frustrating to see the fight they have to put up with the system. They deserve to live there life with dignity and support...

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Jonathan Caron / Professional Coach / ironman champions / age group world champions
Jonnyo Coaching
Instargram

Brutal. I've got some friends in the PALS community and it's just a heart-wrenching thing.

Thanks for sharing Herbert.

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Eliot
blog thing - strava thing

Very moving interview. So glad they shared their story. Very sad how disgusting insurance companies/ Medicare behave- shame on them.

Yes that is heart breaking. I am not sure what is the worst but the fact that they are getting no help from insurance is pathetic. Life can really kick you in the balls sometimes. Two weeks ago my aunt and uncle were both killed instantly by drunk driver. At about the same time a surgeon friend had a stroke while doing an operation. I don't think he will ever work as a surgeon again. But health care system here is taking care of everything for him.

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They constantly try to escape from the darkness outside and within
Dreaming of systems so perfect that no one will need to be good T.S. Eliot

Agree totally.

Can someone explain possible reason(s) why medical insurance or Medicare will not assist (I'm not American). It just seems so wrong, What's medical insurance for then...

It is sad on so many levels. John has only very limited time but he has a loving wife. Mike however is watching his brother die, and sees what is to come for him soon. But he has no spouse, partner as far as I know.

Very frightening

Yeah this makes no sense to me. I know they are strict with it, but ALS seems clear cut to me. Thank god i live in a "communist country".

Anyway to the actual story, hard read! So sad to hear, and i hope their last time will be well spent with family and friends.

Herbert,

I struggled to read it. My brother was diagnosed much the same way. His progressed rapidly. He died in October 3 years ago. I was on Palani watching the athletes charge up the hill when I got the call. Reading your article made me relive what my brother went through. I’m glad you wrote it. We need to find the cure to this cruel disease.

My heart goes out to the brothers and their families.

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Dave Jewell
Free Run Speed

I am a twin. This hits too close to home. Prayers!

Thank you and sorry to hear about your brother.

The sadness of this story is profound. Almost equally profound and overwhelming is John's positive and helpful mindset, when he and his brother are staring death, and insurance hell to boot, directly in the face. Donating parts of their bodies to science to try and help others through the search for a cure, not being overtaken by sadness or anger...truly, deeply inspiring.

Wow, stops you in your tracks. Prayers for Mike and John, their family and caregivers. Very informative and appalling to learn how they are treated by private insurance and medicare.

Holy smokes, this was a heartbreaker. Thank you for sharing.

I used to see ALS patients frequently. It seems only the nicest people have the disease. I try to be mean or rude at least once a day to make sure I cannot be considered a nice person.

Since my Mom died of ALS 2 years ago, I know first hand about this illness. This is why I just smile when so many get so upset about the dumbest stuff!!
Life is SO short. I never really understood it until I watched my Mom die day by day. Until one has had to help deal with a dead parent and put their body in a body bag to be taken out of the house, folks have NO idea what pain is like. This is why I 100% believe in right to die laws. I would NEVER let my family go though what we have had to deal with ALS!!

I try to smell the roses as much as I can. I try to keep this sport a hobby.
I am spending as much time, and money on my family to leave memories!! We elected to not do the testing to see if we have genetic ALS in our family.
What good would it do if I knew.

So folks can beat on me as much as they want. Compared to what I have had to deal with, sticks and stones may break my bones, but words can never hurt me.

What is important in life is NOT what you take, but what you give and leave behind!!!!!

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Dave Campbell | Facebook | @DaveECampbell | h2ofun@h2ofun.net

Boom Nutrition code 19F4Y3 $5 off 24 pack box | Bionic Runner | PowerCranks | Velotron | Spruzzamist

Lions don't lose sleep worrying about the sheep

Just no reason to get all directed in the negative area. Since there is nothing that can be done for the disease, there are plenty of places that help.

The ALS organizations can loan all the equipment needed.

But the other key component that does not like to be talked about is getting Hospice involved EARLY!! They were the most amazing people. And boy did they
get in quickly, once engaged, all the best equipment we needed. And when we really needed them the most, which was at the very end, thank god they were there.
Folks who have been there know what I mean.

Again, most wait WAY too long to get hospice involved. I sure know my parents did even though I pushed and pushed. We are all going to die!! Hospice does not have to be brought in the last days!!

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Dave Campbell | Facebook | @DaveECampbell | h2ofun@h2ofun.net

Boom Nutrition code 19F4Y3 $5 off 24 pack box | Bionic Runner | PowerCranks | Velotron | Spruzzamist

Lions don't lose sleep worrying about the sheep

I hear you. :-(

Tragic.

My biggest fear is to live what those brothers are living. Or worse yet to see someone close with it. They have the double whammy.

It would be fantastic if someone in the ST community knows how to fight insurance coverage and/or get on Medicare faster that could help these men.

Herbert;

Great up-fromt interview that pulls no punches: ALS sucks and there are no two ways around it.

I know that everyone is different, ALS affects everyone differently, and everyone has different outlooks, but please let both John and Mile know that yes, they got dealt a raw deal and a proverbial death sentence, but that doesn't mean that life necessarily has to end immediately. Let me explain...

Up here in NH we have a program I am involved with called Adaptive Sports Partners of the North Country. We take disabled people out for pretty much any adventure that they can envision, and one of our driving forces behind that is a participant that has had ALS for well over a decade now. Sure, it isn't an easy life, as he cannot move, has been on a respirator for most of that decade, and the only way he can communicate is with his eyes. But damn... the emotion he conveys with his eyes!

We take him skiing every year, multiple hikes throughout the warm(ish) months - including Mt. Washington x and he even came to my buddy's wedding this past weekend... where he was chugging down beers!! (Yeah, they go in the feeding tube, but he was having fun, so who cares if he couldn't taste 'em! He got to experience Switchback!!)

Life will change, but it doesn't have to end without at least going out having some fun! Like I said, everyone is different: my aunt died in less than two years from ALS, while our participant has had it well over 10 (I *think* its 13).

Please let them both know that we will have them in our thoughts and prayers, and if they would like more information (or wanna go do something epically cool) let me know and I can put them in touch with the correct people. (I'm just a lackey, but I know the right people...)

Thank you again for writing this article, and thank the Madzin brothers for being so frank and upfront about this disease. Bless them, and bless you.

- Jeff

In addition to wildly varying durations (<1yr all the way to decades like Hawking), another weird case is bulbar onset ALS...top-down instead of bottom-up. I know a guy with this version, and he can run around his house and type with his toes, but his arms hang limp at his sides and he can't talk.

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Eliot
blog thing - strava thing

It's a terrible story.

I'm curious about the healthcare issue. I thought the ACA (Obamacare) would change how coverage was extended and denied. If it is a no exclusion policy what happened?