Why the ALS #IceBucketChallenge is so important to me

You are probably getting sick and tired of seeing yet another ALS Ice Bucket Challenge video, but I am not.

I never knew what ALS was until my brother acquired the disease some 5 years ago.  ALS is also known as Lou Gehrig’s Disease and is a progressive neuromuscular disease in which nerve cells die gradually leaving voluntary muscles paralyzed. It usually hits the hands and feet first with numbness as first signs. Eventually the person cannot walk, or move their body without aid, and gradually the person needs to be tube fed and the worst is losing the inability to talk.

When I learned my older brother Dean had ALS, I was shocked… when I sat down at the computer to do research, I then became devastated.  I cried off and on for 3 days trying to come to grips with it.   Bold words jumped out off the screen at me, “Fatal,”  “2 – 5 years to live,”  “Every day two or three Canadians die from ALS,” and “No cure” left me feeling hopeless.

How could something so awful affect my family is all I thought. A family that has been  generally very healthy and free from disease. There is no cure yet for ALS and the cause is still unknown, so I may never know the ‘why’.

My brother Dean with his only child Curt; and Dean and our family angel, Elaine.
My brother Dean with his only child Curt; and Dean and our family angel, Elaine. PHOTO AT VERY TOP is Dean with two home care workers out on a walk in his wheel chair in 2013 when he still living on his own. (Thank you Fluent Light Media)

In a world where most ‘finding  a cure’ information usually only relates to Cancer (one of the world’s most funded diseases) I was shocked, but so excited to find out about the ALS Ice Bucket Challenge  started by Pete Frates.  “Finally my friends would understand what our family has been going through,” I thought.  Each and every ice bucket challenge brings great pleasure to me, and I am certain it is a voice for so many ALS sufferers and their families.  I ‘Like’ them all.

Of course with any ‘good thing’ there is always those that poo-poo ideas, in particular through social media, and the latest is the image of that little African boy who can’t believe we are dumping water when they don’t have water to drink… Okay, pleeeeeaaase!  How on earth does this relate?  And the article about how much the ALS Organization members make a year.  Now that one has me a bit stirred up, but I have to go back to the victims in the beds like my brother, the many actually suffering with the dreaded disease. I KNOW this challenge has, and is, lifting their spirits… money aside, the public awareness alone has MOVED MOUNTAINS of grief!

Finding a cure?  All the influx of millions of dollars of course holds no guarantee, and in a recent National Post article it said,  “ALS is a tough nut to crack, however: After 30 years of work, we don’t seem to be any closer to finding a cure. And there’s no particular reason to believe that we’re $100 million away from finally getting somewhere. Even if a million Americans donate $100 each to ALS, the net positive effect on the world might well be very small indeed.”

With the help of so many wonderful family friends, and an abundance of prayer, my brother Dean is a living miracle and fighting ALS.  He’s lost the use of his arms and hands, can still move his legs and feet a bit, but must use a wheelchair.  Last month his lung gave out after an infection and he had to undergo an emergency tracheotomy to survive, which means he is now tube fed.  He continues to amaze me with his courage, and strength, wit and humour.

Like any adversity, there is always a silver lining. My brother is finding his, and we are finding ours through the challenges our family faces together. Sometimes life throws you things you’d never expect, and when you first get hit with it, you feel your life is over, or you can’t go on… then you gather your strength, you regroup, hug your family, move on with your faith (prayers do help), and breath in the love that you always owned, and keep steady at the helm.

A miracle happened when someone told my sister about a relatively unheard of treatment called The Deanna Protocol, which was developed by Dr. Vincent Tedone five years ago, for his daughter Deanna Tedone-Gage who at the time was a new bride and a young attorney.  The products can be ordered online and have since helped reverse many of my brother’s symptom which we know have helped lengthen his life.  Research is now underway on The Deanna Protocol by scientists at the University of South Florida, led by Dr. Dominic D’Agostino. They are studying its effects on mice with ALS.

I encourage anyone with ALS to check out The Deanna Protocol! You have nothing to lose by trying it, and it seems to be far more affordable than much of the other treatments I’ve heard about being prescribed today.   You do not need a doctor’s permission to do so, unless you are in hospital care that is. Sound nutrition also helps. My brother is trying to get as many super foods in his body as he can, coconut oil and moringa are among those. Thankfully the hospital he is in seems to be cooperating and open to it, which we are so grateful for.

So  I hope I’ve been able to help you understand why I feel  the Ice Bucket Challenge is so important. If you need more proof, please watch this video which Upworthy deemed ‘The last Ice Bucket Challenge you need to see‘ by 26 year old photographer, Anthony Carbajal who was just diagnosed with ALS this year. Anthony’s mother has ALS, and his grandmother died of ALS.

I am off to now create my own Ice Bucket video from a challenge that came in from my daughter Jackie.  It’s great timing as my brother Dean will be back online today, as he’s scheduled to be using the new software where he can control his computer with his eyes.  My brother lives in another province, so our internet connection has become somewhat of a lifeline for us.

Please donate or take on the challenge if your name comes up. The more we know, the more that can be done.

(I would be remiss to not mention and link to this Facebook page, Hope for Steve, as they have been huge sources of inspiration for me personally as I watch how ‘Hope’ stays by her husband Steve’s side as he battles ALS. They are a living testament to the power of love.)

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