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Old 12-18-2019, 08:31 PM   #21
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Best wishes!

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Old 12-18-2019, 08:38 PM   #22
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Rich would be a strong word. Paying your dues as an analytics guy in the NHL on a single income with two kids is not a quick rich scheme by any means. I’m sure he could use some help from the whole hockey community to expedite expensive ground breaking research.


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Derp, my mind went directly to Garth Snow. My bad.
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Old 12-18-2019, 08:41 PM   #23
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I've worked in palliative units and home care, and I've seen many different types of horrible diseases. ALS could possibly be one of the worst of them all. How horrible for Chris and his family. Thoughts and prayers.
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Old 12-18-2019, 09:22 PM   #24
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Such a devastating disease, my father lost his best friend to it about 15 years ago - a painful process to watch from a short distance.

Go get it Mr. Snow, sounds like you have a tonne of support.
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Old 12-18-2019, 09:24 PM   #25
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ALS has got to be the worst way to die
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Old 12-18-2019, 10:12 PM   #26
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This is incredibly saddening news. For many parents of toddlers in NW Calgary, "Miss Kelsey" taught infant / toddler development classes and was/is quite well known. From this I met her and can say that she is an absolute gem and wonderful person.

Kelsey has had her own health issues, notably an ischemic stroke at age 35 - 4 cm tear in her vertebral artery. So what does she do afterwards? She raises money to make "personal care" pouches for future patients. Here's the AHC article on this

https://www.albertahealthservices.ca...Page14721.aspx

The family has gone through so much - her accounts on her blog are incredibly saddening. Puts what you think are problems in your life into perspective.

While I haven't met Chris, by all accounts he's the same. With both of them being journalists by trade, rich isn't applicable to them. While the on ice Flames are hardly perfect, from the character of people I do know on the business side I can only assume the organization as a whole will find ways to help this family, in all respects.

Give em hell and stay strong. Both of you.

Last edited by I-Hate-Hulse; 12-18-2019 at 10:25 PM.
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Old 12-18-2019, 10:33 PM   #27
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Others might live for a couple of decades and those seem to be more the ones who remain able to speak, but confined to a wheelchair.
Unfortunately the average life expectancy (prognosis) after an ALS diagnosis is made is only two to four years.

The ice bucket challenge did a lot to raise money and awareness for research (https://en.wikipedia.org/wiki/NIMA-related_kinase_1) but it's a pretty brutal disease.
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Old 12-18-2019, 11:25 PM   #28
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I can't imagine losing my father and two uncles to the disease, knowing that it was likely coming for me next. That is unbelievably terrible for Chris and their family.
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Old 12-18-2019, 11:45 PM   #29
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Everyone should read Mitch Albom's book Tuesdays with Morrie.

https://study.com/academy/lesson/tue...-timeline.html
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Old 12-19-2019, 12:13 AM   #30
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Sorry to ask but what is ALS, I have never heard of it before. I tried google but was getting strange answers.

Thank you.
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Old 12-19-2019, 12:19 AM   #31
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Sorry to ask but what is ALS, I have never heard of it before. I tried google but was getting strange answers.

Thank you.
Amyotrophic lateral sclerosis. It is awful

Also known as Lou Gehrig’s disease. Try googling that.
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Old 12-19-2019, 01:45 AM   #32
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Amazing how Stephen Hawking lived to 76 years old after being diagnosed with ALS at 21, hopefully this new treatment can keep Chris healthy for many many years.
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Old 12-19-2019, 05:26 AM   #33
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Amazing how Stephen Hawking lived to 76 years old after being diagnosed with ALS at 21, hopefully this new treatment can keep Chris healthy for many many years.
He had a rare slow progressing variant.
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Old 12-19-2019, 08:48 AM   #34
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I lost my father to ALS.

We kept him at home and cared for him as he needed round the clock care - something that most long-term palliative care facilities couldn't offer.

It was the hardest thing I've ever had to do.

To see someone gradually decline to the point where they are completely "mentally with it" but unable to do anything for themselves was literally heart breaking.

I hope science makes advancements in this area.

Prayers to all that are fighting this horrible disease.
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Old 12-19-2019, 09:44 AM   #35
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Sorry to ask but what is ALS, I have never heard of it before. I tried google but was getting strange answers.

Thank you.
You will probably be more familiar with the term Motor Neurone Disease in the UK. ALS / Lou Gehrig's is the name give to MND is North America.

It's the disease that ex Rangers player Fernando Ricksen passed away from this year.
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Old 12-19-2019, 09:52 AM   #36
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Lost my Aunt to ALS. Wish he and his family all the best in this fight.

His wife is right. Someone has to be the first to live with this rather than die from it.
That quote is hella-inspiring. If I'm ever unfortunate enough to be this ill I hope I have a shred of the courage they are showing.
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Old 12-19-2019, 10:40 AM   #37
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Horrible and sickening news. ALS is a completely torturous disease - for both the people afflicted with it as well as their families. Don't know what it is or how it affects people? Here is a very condensed version of it from my own experience - I lost my mother to it.


Your body has motor neurons and sensory neurons (neurons = nerve cells). Whenever something touches your skin - like an insect crawling across your skin - you can feel it. That's the job of the sensory neuron. It can sense if something is too hot, too cold, itchy, scratchy, painful, etc.



Motor neurons are the nerves that make it possible to control your muscles. A signal from your brain is sent down these motor neurons through an electrical signal, and then your muscles contract - happens when you walk, point at something, eat, swallow, breathe and even controls the beating of your heart. They differ in the types themselves - as breathing and heart beating is an automatic response that you don't have to 'think about' in order to accomplish the task.


So what happens in this disease? The nerve cells are covered in a myelin sheath - this is like the insulation in your home's electrical wiring (somewhat). It allows for the electrical signal that your brain generates when you want to move something like your arm to grab your coffee mug. ALS starts destroying this sheath, and that signal start to degrade over time. You will get 'clumsy' at times - tripping, or spilling things on yourself, etc. Eventually it progresses and it starts to paralyze you - you will not be able to send the signal for you to move your arms and legs, and then stuff like swallowing. You will start choking on food regularly.



Unfortunately, your sensory neurons pretty much stay intact - at the very least, they don't seem to degrade at the same rate if at all. You will be able to feel everything, but you won't be able to move. Suddenly get a cramp in your leg? You will suffer through it until someone can move it for you. Bed sores? Maybe have a bug crawling on you? You feel every little thing, but you can't move your leg out of the way, or swat that insect away, or do anything about it. Your mind will stay completely lucid through this whole disease. You will be 100% completely aware as you lose more and more control over your body. At the end of this torturous journey, eventually your breathing ends up stopping.


This is a horrible thing that Chris Snow is going to have to endure. Make no mistake - there is probably 5 diseases that I can think of that can be more torturous. Being completely lucid throughout makes it even more difficult in certain ways. Seeing this disease unfold on my mom actually made me stop believing in a God, to be honest.



I absolutely feel horrible for Chris Snow. I also feel horrible for his family. People may not realize how much his family is going to endure with him. We had to carry our mother to and from the wash room. We had to do everything that she was unable to do. On top of this, we were always at heightened stress levels as we needed to make sure that she wasn't choking (this starts happening more and more as you lose control of your ability to swallow). She needed 24/7 care, and we made sure to give this to her. I remember this time well, and my heart goes out to Chris Snow and his entire family. Treatments and the resultant prognosis doesn't seem to have improved much since my mom went through this, but at least I hope that the support system has grown much more robust. This absolutely sucks in the worst way possible for Chris and his family. My thoughts are with them.
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Old 12-19-2019, 02:17 PM   #38
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My Dad was diagnosed with Bulbar ALS last year and it primarily affects his ability to breath. In the course of a year before diagnosis he lost most of his muscle mass and is not unable to climb stairs without needing to take a break and sit down for a while.

It has been slow progressing, he is on a new drug called Edaravone, He was getting it from Japan but it is available in North America now. It is helping to slow down the symptoms, but they are progressing. Lately he has been unable to button his shirts, or open a container. He is 65 and was very fit right up until a year before his diagnosis.

The cost of his medication is $180,000/year. He is fortunate because he is retired RCMP, so has benefits (sunlife) that covers 80% or the prescription and Veteran affairs covers the rest. We have met plenty of people that are simply not able to get the medicine because they don't have enough coverage to pay for the medicine.

Taking this medicine means daily trips to the hospital everyday for 2 weeks to get a transfusion, then 2 weeks off, repeat.

This isn't like Cancer, there is no coming back from a diagnosis. For the past year knowing that everything we do might be the last (Birthdays, Christmas,Vacations, etc) has been difficult

The ice bucket challenge raised a ton of awareness and money, but like every social media campaign, it fizzled out as fast as it caught on, and left a lot of research hanging in the balance as they ran out of funding after the fad passed..
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Old 12-19-2019, 05:24 PM   #39
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this thread has made me so thankful for health
and also just appreciative of all the posters on this site who deal with difficulties every day.

Wishing all the best to everyone who has shared on here and to Mr Snow
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Old 12-19-2019, 06:32 PM   #40
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Jason Becker has survived with ALS for over 20 years now and his story is amazing as he still composes music using a computer and eye movements.

I hope this disease can be defeated once and for all. God bless Chris and I wish only the best for you.
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