It’s been almost six months since my last post. I can’t type these days on a computer (but I can still slowly type on my Ipad) so my lovely daughter Hannah is typing this post for me.
My lung capacity is below 20% and the major impact from that lately is on my ability to speak. I can say a few words at a time before needing to take a few breaths from my breathing machine, but full sentences are difficult.
My mobility has decreased as well. In March I was walking using the walker from the bedroom to the living room and felt my legs giving out. Fortunately Hannah and her husband, Connor, were right there, and grabbed me and put me into the closest seat to us, which happened to be my electric wheel chair that had been delivered a few weeks prior, but had yet to be used. Since that evening I have been using the electric wheel chair all day and not doing any walking anymore.
I sit in the chair all the time as it is very comfortable and padded. I can move around using a joy stick. It can also recline fully, get me into a standing position fully, and has foot rests that can elevate my legs. The only time I use the walker is during transfers from the electric chair to the washroom or to the bed for a few steps.
Family members or PSW’s feed me breakfast lunch and dinner because my hands and arms are very weak. I can still bring a glass of milk up to my mouth using both hands. I am still able to eat most solid foods, but avoid things like breads and steaks as they tire me out too much to chew. Trying to finish a full meal is as exhausting for me as it would be for you to run a marathon. If I start feeling too tired mid-way through a meal I will switch over to a protein drink to fill up. After every mouth full that is fed to me I have to pause and breath for a minute, so meal times can take me 40-50 minutes.
I had one fall in the last six months with no injuries, so I am very thankful for that.
PSW’s come once in the morning and once in the evening to help with various things like eating, showering, changing clothes, managing my feeding tube, etc. Once a week a PSW stays for 4 hours with me at home so that Cathy can get out of the house, knowing that I am in good hands.
We have also hired a retired nurse, who also lives in Manotick, four mornings a week for 3 hours each day. She has nursed ALS patients in the past. Turns out that she went to high school with Cathy!
In April I had a chest infection and ended up in the hospital for 4 days in the ICU department. They gave me some antibiotics that cleared it up, and luckily I have had no issues since then. Although they don’t usually have ALS patients in the ICU, the nurses were all very helpful, and the respiratory therapists were able to give us some helpful tips and advice for the use of my breathing machines. Cathy, Hannah, and Deagan were able to visit at any time of the day to keep me company and help feed me my meals, although I was very weak for the first two days in the hospital and didn’t eat much of anything.
Support from Friends and Family
A former co-worker of mine, Kyle Turk, created and produced a song called Legendary to raise money for the ALS Society. You can listen to it on Spotify here. If you want to support the ALS Society here is a link to Kyle Turk’s fundraising page.
Another co-worker of mine, Stephan May, planned a trip to Mount Everest as he has always wanted to climb to base camp. Through this, he did a fundraiser for the ALS Society as well.
Lots of my former colleagues come over for lunch dates every few weeks. Here is a picture of the biggest group we had yet, a few weeks ago.
Through a Leader Impact group in Manotick that I had been a part of for 4 years, another member Jeff Ritskes, who is a former church organ player, has organized and hosted a hymn singing time at his house for the last few months, which we have now been able to move to my living room so I can still join. Thanks to Jeff for being so mobile with your organ playing.
ALS is tough for me to handle, but the management of it is even tougher for Cathy. I am so thankful for Cathy’s support and the support by Hannah and Connor who come over to our place and stay a couple nights a week to help Cathy. And I’m thankful for my son, Deagan, who helps a lot with chores around the house. My siblings (Shaun, Kim, Bart, Kyle, and Jill) come over throughout each week to help with food preparation, shaving my face, yard work, and to spend time together. My long-time friend from University, Steve Kirk, comes over every week for a visit and calls me every single day on his lunch break.
We love spending time with our 18-month-old grandson, Mason. Here is a picture of Mason with me in the electric chair. He still enjoys sitting on my lap and playing with his toys, reading books, or I take him for a spin.
Faith Over Fear
Faith over Fear is a common phrase – I’ve even had two friends buy me T–shirts that they found with this quote on them. Welch LLP also included the pictured green T-shirt in their latest clothing apparel drop this Spring. Welch created a Faith over Fear Fund in my name where each employee who accomplishes something that has been on their bucket list, or something they have wanted to do, Welch will put money into this fund. They will also publish a story about this individual's undertaking to encourage others to face their fears and not wait until they are retired to chase their dreams. The money from the fund will be donated to various charities in Ottawa.
So, what exactly is faith? Hebrews 11:1 says that faith is confidence in what we hope for and assurance about what we do not see. So, my faith is in my hope for God‘s healing and a peaceful future while I remain on this Earth. To have a positive life, as it says in 2 Corinthians 5:7, you need to live by faith, not by sight.
We also celebrated Easter since my last post, in April. Easter is about the death of Jesus on the cross and his resurrection three days later. Interesting that in the book of Isaiah, which was written 700 years before Jesus was born, Isaiah predicted the death of Jesus and how he bore our sins on the cross, in this passage here:
4 Surely he took up our pain and bore our suffering, yet we considered him punished by God, stricken by him, and afflicted. 5 But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed. 6 We all, like sheep, have gone astray, each of us has turned to our own way; and the Lord has laid on him the iniquity of us all.
7 He was oppressed and afflicted, yet he did not open his mouth; he was led like a lamb to the slaughter, and as a sheep before its shearers is silent, so he did not open his mouth.
Although I cannot get in the truck anymore, my church is just down the road so now that the snow is gone, I am able to drive my electric chair to church which takes around 15 minutes. Church happens on the second floor of the building but there is a (very old) service elevator that I have been using. One Sunday in May, the pastor and I were taking the elevator up and it got stuck. We were in there for 45 minutes, but luckily since the door is so thin, we were still able to communicate with other members of the church who were giving us updates (see picture below). They called the fire department, who showed up with two trucks, and 8 firefighters. The fire fighters had a key to the elevator door, and because of the spot we got stuck in, they were able to carry the 350 pound electric chair and me out safely!
Many friends and family that we have recounted this story over the last month have asked if I was scared. Scared that we would be stuck in there for hours, or scared that my breathing machine battery would die while we were in there. But I wasn't fearful - I had faith in the God that I was going to church for in the first place.
I am so thankful for all of the visits I have from friends and family! Also for the meals that you bring to relieve the burden from Cathy. The meals are fantastic and much appreciated. Thanks for following my blog and for the love you show for me. I've updated the prayer points which you can find on the home page of the website or using this link https://www.faith-over-fear.ca/blank-page
May God, the source of hope, fill you with joy and peace through your faith in him. Then you will overflow with hope by the power of the Holy Spirit. Romans 15:13