July 11, 2013

Condition Update

I think it is time to give my blog readers an update on my physical condition. At no time has the disease remained static, although it has slowed down in the last year. At present, I am paralysed from the neck to my toes. I cannot move my arms or legs without help. If my hand slips off my leg, then it stays there, until Lena moves it back. I am drooling and have a tissue tucked into my shirt to absorb it. I sweat a lot from my arms and forehead and need regular wipedowns with a towel, especially in the hot summer weather.

I can still swallow pureed food, but it takes a lot of time and patience from my care givers, mainly being Lena. I can still turn my head using neck muscles, but my head tends to lean to my right. This allows me to control the cursor on my computer, and be able to write this blog post. The control is slowly getting weaker, and I have good days and bad days for being able to write.

My body has the tendency to curl up into a tight fetal position and to stay that way in a cramp. That is why I need daily range of motion or stretching exercises. I also take several medications to prevent muscle cramps. This is a part of my daily struggle with this dreadful disease.

The Lord has been good to me throughout this journey, hour by hour, and day by day. I often think of the well known hymn: I Need Thee Every Hour. I have never felt abandoned by God, despite the feelings of being trapped in my body, like a cage. My Father hears my cries for help, and leads me through it with His rod and staff (Psalm 23).



  1. Thinking of you and praying for you (and Lena)in this very difficult journey. The Lord your God is with you, wherever you go and in whatever circumstances you find yourself. May He continue to uphold you.
    I saw a picture the other day of someone with ALS who was using a travel pillow to support his head. It was not the kind you blow up but one that is filled with ? and it goes around your neck. Would something like that be helpful for you?
    Mary VanDoodewaard

  2. For we know that if our earthly house of this tabernacle were dissolved, we have a building of God, an house not made with hands, eternal in the heavens. 2 Cor. 5:1
    For this God is our God for ever and ever: he will be our guide even unto death! Ps. 48:14

  3. Thank you for updating us Uncle Jack. Praying that your cramps ease and that you have much comfort from Christ. We love you very much!

  4. Thanks for the update, Uncle Jack. Praying for continually-- especially that the Lord would ease any physical pain and cramping that you experience. Bought some summer sausage at the St. Jacob's market today and thought of you :). Wondering if it can be pureed?!?!

  5. Jack
    I just recently heard about this blog from my dad.
    Too many years have passed since the old days of Timothy and I am sorry to come into this so late.
    But looking through the entries in this blog it's a blessing to see what a wonderful legacy of love and support there is from your friends and family, even the students that came out for your birthday.
    I just wanted to drop a note to let you know that you are in our thoughts and prayers.
    God keep you and your family.
    Rob and Mary Beintema