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  • Writer's pictureGarth Steele

Garth's First Post on ALS

Updated: Jun 30, 2021

It's been four weeks since I received the news that I have ALS. When you have ALS, your brain stops speaking to the nerves that control your muscles. So your muscles don't know what to do and eventually they stop working. I first experienced this with a loss of pinching strength in my right hand. In January when Cathy and I were enjoying beautiful ski mornings at Camp Fortune, I found that I didn't have the ability to unclip the strap on my helmet ... and when we got in the car to come home, I couldn't turn the key in the ignition to start the car. This lead me to see my doctor who referred me to a specialist in neurology. Primarily because of Covid, it took months before the appointment could happen. During that waiting period, I found it was getting difficult to go for a "power walk" down our flat street at the end of the work day. When the gyms were allowed to be open, I definitely noticed the amount of weight I could lift was diminishing by a significant amount. By the end of May I had lost 35 pounds of body weight and my clothes were hanging on me! It was on Thursday May 27th that I received the diagnosis from a doctor at the Civic Campus of the Ottawa Hospital that he was quite certain I had ALS. The interesting thing is that there really aren't any tests to prove you have ALS. Instead, I have gone through five different tests to prove it isn't something other than ALS. My lumbar puncture / spinal tap results came back normal. An MRI on my neck/spine indicated that any degeneration I had there was typical for a 60 year old. Various blood testing looked at 29 different things in my blood and every reading was in the "normal" range. I've been for three 6-hour IV Immune Globulin treatments to see if it might cure some other disease, but it doesn't appear to be making a difference. Everything seems to be pointing back to ALS.

Hard news to absorb. Not just for me, but for Cathy, and Hannah and Deagan and Connor and Brianne and my brothers and sisters too. Every day I spend several hours telling clients at work, and friends and neighbours and people I volunteer with in various organizations and ministries. It can be tough...

And through it all, I'm trying to figure out what God's plan is for my remaining days on this planet -- whether that be two months, or three years, or through a healing miracle another 30 years! Some times God's will remains a mystery and we don't find out until years later what He was up to. I'm not saying that God gave me this disease. God would never will sickness on us. He loves us! He created us in His image to enjoy this amazing earth that He created and he wants us to mutually benefit from the fellowship with friends, family, neighbours and co-workers that we interact with each day. I am relying on my faith in God to get me through this illness. I am asking God to remove any fear that exists in my soul and to remind me each day to be thankful for the good things that I've been blessed with in that moment.

I intend to post an update weekly to keep you informed about how things are moving in my life. Sign up for an automatic email that will link you to this blog.

" I have told you these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33

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8 comentarios

16 jul 2021

Hi Garth

Just got this devastating news, both of your blogs are beautiful, your faith, fortitude and strength are incredible. God bless you, Cathy and your children and extended family.

Suzanne and I were shocked, our thoughts and prayers are with you.

John DiLabio

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Valerie Chiasson
Valerie Chiasson
15 jul 2021

May God bless your journey.

Thinking of you during this path and knowing that some days will be dark and many will be happy.

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08 jul 2021

You are in my heart and thought, will be by your side. xo

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06 jul 2021

Hi Garth: Ian and I were so sad to hear about your diagnosis but so grateful that we know you have a deep faith. May God sustain you as you witness for Him through this. We would be honoured to pray with and for you. Leslie

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Nigel Sloane
Nigel Sloane
01 jul 2021

Hi Garth....this is devastating news! How does this happen? There are no answers obviously. Just know my thoughts are with you and your family on this journey Garth, and I know the Man of Steele will fight this awful disease. With love, Nigel.

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