October 29, 2012

Progress Report

As you know, ALS is an incurable disease with no known successful treatments. Some people experience periods where the disease plateaus for periods of time, but I have only known a steady decline. We are approaching a date two years ago when I started feeling tired, and we decided to sell our home where we lived for 27 years, 22 of them with my parents in the in-law suite. It was time to downsize to a smaller property, with less maintenance, and no stairs. It was a stressful time for us, and for my parents. I didn't know that I had ALS at the time, but God knew, and He directed us to a very suitable bungalow with all the living space on one level.

I am beginning to have problems with eating and drinking, with the risk of choking and aspirating. I like eating and tasting food, especially meat, so that is going to be another big loss for me.

I am still able to bear weight on my legs when my care givers stand me up. But my legs are beginning to buckle under in the morning and after taking my evening medications. That will be another loss.

I use my thumb to click a button which works as a mouse for my computer. By the end of the day, my thumb is fatigued, and I can hardly use it. The day is approaching when we need to use another way of clicking, called the hover method, which is much slower.

The good news is that I was privileged to hold our 11th grandchild today, Lucas George. 
I cried when my daughter told me she was expecting, because I didn't expect to live long enough to see him. Today I cried again, that God has been so good to allow me to hold Lucas in my arms.

Another name to add to my prayer list. Another covenant child privileged to have a Christian upbringing and a Christian education.


  1. How special to be able to hold your newest grandson! We continue to lift you and your family up in our prayers daily.

  2. What a beautiful little boy! Congratulations to both of you. (Great-Opa Westerink must be quite pleased with that name!) I'm so happy for you to have the joy of seeing and holding this precious child, although it must be a bittersweet experience.

  3. Thank you for your blog! I have been reading it almost since you started it. I was a student at ORCS and was directed to your blog by an RCS student. I check nearly every day to read an update, your blog is such an encouragement and a reminder of what is really important in life! Thank you for that!

    Congratulations to you and your wife with Lucas!


  4. Dear Jack and Lena....what a beautiful blessing - the photos are special - to see you with such a sweet new addition....Sad to read that you are losing more 'strengths' from your body. Praying the Lord to uphold you and give you His grace in all areas needed....may your lives be filled with His strength - most especially in your Christian walk, and may you be kept high in His peace. John and Jennifer Jongerden - Chilliwack 'Underneath are the Everlasting Arms - Deut 33:27a'

  5. Congratulations on your new grandson! The pictures brought tears to my eyes.
    Have you considered getting an Eye Gaze computer? Chris got one through the Rehab clinic in Toronto upon referral by our occupational therapist at the ALS clinic in London. We went to Toronto a couple of times for training and later someone came to our house to iron out a few things. Chris had to push for one those computers because they had never provided one for any of their clients. They are very expensive but ADP paid for 75% and the ALS Society of Ontario paid the rest. We had to pay a small lease fee, I believe it was $200 or $250 per year. After Chris passed away it went back to Toronto. Hovering over an on screen keyboard helps a lot for typing but you still have to use you mouse a bit.

    Remembering you and Lena and your family in my prayers.
    Mary VanDoodewaard

  6. thanks for the update. Praying for you

  7. Thanks for sharing difficult moments as well as enjoyable ones.
    There are always lessons in it for us too.
    We wish you strength, grace and peace from God