My hands and arms are getting a lot weaker. I need someone to help me move my hand to the control module of my electric chair. Fortunately, I still have the strength to drive it! In the summer I would drive my chair up the street to church. With the cold weather setting in, I'm now taking ParaTranspo or a wheelchair accessible taxi to church. Costs $20 to $40 return which is a lot cheaper than buying our own van which could cost over $90k!
For the last few months I've stopped eating orally and am being fed through a feeding tube directly to my stomach. I'll eat a protein supplement called Resource four times a day. I stopped eating orally because I would often choke or get fluid in my chest /throat that could take eight hours to clear it out.
I had my quarterly check-in with the ALS clinic earlier this month. The only thing they can measure is my lung capacity. Using my own strength, my air volume is down to 16% of normal. The doctor calls me an enigma, though, because with an air bag, my lungs can expand to normal capacity. I credit this to my years as a tuba player! This means that if my strength weakens to zero, I can still breathe perfectly fine with the use of the bipap machine which I use 24 hours a day at present.
People ask if I have any pain. If I'm sitting in my chair I feel perfectly fine and I think I can get up and make dinner for Cathy or go rake the leaves. Then I go to move my hand and nothing happens! The only pain I have is two or three nights a week in my hip from sleeping on my right side. My feet are quite swollen from lack of use. My weight is stable at around 130lbs.
I can still talk, which is a major blessing, but it is hard for people to interpret me when I have my mask on!
My morning routine is tiring for both Cathy and I. I get out of bed at 8:00 and use the sling lift to move me to the commode. I'll sit in that uncomfortable chair for two hours for a bowel movement and a sponge bath or a shower. Then I move back to the bed to get dressed for the day. Then I move to the electric chair by the sling lift. I then roll out to the living room to get my teeth brushed; use the cough-assist machine to clear phlegm from my throat; then use the air bag to pump up my lungs to keep them working well. By the time all this is finished it is 11:00! Below you can see a photo of Jane and Cathy helping me do the air bag exercise.
So that's the health update. My children were concerned I might have been dead before their children were born - but I made it and am blessed to be living with my loving wife, Cathy, and the rest of my family almost three years since I started to feel the weakness in my muscles.
Joyful Life Experiences
Wow! Within seven weeks of each other I've got two new grandchildren!! Hannah and Connor gave birth to a baby boy on October 10. He weighed 7. 3 and is growing healthily. His name is Roman Henry Schmitt. The middle name Henry was Connor's grandfather's name. Roman's older brother, Mason, loves him! And Deagan and Brianne gave birth to a baby girl on November 19! She weighed 8.4 and looks very healthy. Her name is Elizabeth Ray Bond. They will call her Betty, though, as that is what Brianne's grandmother was known as. The middle name Ray is my wife, Cathy's, maiden name. We are so excited and blessed to be adding to our family. We now have four natural grandchildren and two "adopted" grandchildren, so six in total! Proverbs 17:6 says "Grandchildren are the crown of the aged". So Cathy and I are wearing multiple crowns! Praise God!!
Giving Up Responsibilities
Over the years I have served on several Boards of Directors as Treasurer and Board Chair. Because of the advancement of ALS, I have just stepped down from the Board of CHRI, our local Christian radio station. What a joy it was to share my accounting and tax knowledge with them. Their leadership team and staff are so focused on building the Christian faith in our city and I love them for their dedication to Christ Jesus. Here is a token of their appreciation I received this week.
God has been so good in my life...
Here are the words from one of my favorite songs these days "The Goodness of God "...
I love you Lord
For your mercy never fails me
All my days, I've been held in your hands
From the moment that I wake up Until I lay my head
Oh, I will sing of the goodness of God
'Cause all my life You have been faithful, oh yes You have
All my life You have been so, so good
With every breath that I am able
Oh, I will sing of the goodness of God
Faith Over Fear
I stumbled across a passage in the Bible last week that really resonated with me. Philippians 1:19-26. In this passage, Paul talks about which he would prefer: to leave this world and be with Christ in Heaven, or to continue to live on earth and help others to grow and be joyful in their faith. I struggle with the same thoughts. Should I be counting on a complete healing by Jesus so that I can share with everyone that God is real and by the blood of Jesus Christ every believer has been saved (all sins forgiven) so that you can live with Christ for eternity in Heaven? Or should I be more "earthly practical" and be planning for my death to make things easier for my family? I pray that my blog is spreading the good news of Jesus, but I'd love to have 30 more years on this Earth to spend loving and memorable moments with Cathy, my children, grandchildren, friends and family - and to speak to nonbelievers in Jesus to convince them of the Gospel and the truth of God's Word.
We all die one day but scripture says in multiple places that Jesus has cured our illnesses. Psalm 103: 1-5 says:
1 Praise the LORD, O my soul; all my inmost being, praise his holy name. 2 Praise the LORD, O my soul, and forget not all his benefits- 3 who forgives all your sins and heals all your diseases, 4 who redeems your life from the pit and crowns you with love and compassion, 5 who satisfies your desires with good things so that your youth is renewed like the eagle's.
Be praying for God's will to be done in my life!
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