I’ve lost ability to speak

One of the first muscles to be impacted by ALS was my tongue.

I never realized how important to chewing food the tongue is.

During the first year at one point I lost my taste and lost my appetite. I lost ten pounds.

And it seemed that my tongue didn’t know what to do with food in my mouth. The food would ball up in the sides of my mouth or stick to my teeth.

So in the second year I switched to 20 oz. smoothies that Ruth would mix. I drank them through a big straw. But by the end of the year I dreaded even the sight of another smoothie!

In the third year we switched to a commercially produced liquid nutritional food prescribed by the nutritionist at the USF ALS clinic. Ruth feeds me three times a day through the stomach tube that I had inserted four months after my original diagnosis. Ruth uses whooper-sized syringes to feed me three times a day. I no longer drink anything, even water. It all goes through the feeding tube.

I have gained back the weight I initially lost and even have a fledgling spare tire!

The other tongue-related function is speech. It has gradually diminished.

The first stage was slurring. When I began using the ventilator during the day clarity of speech further diminished.. The ventilator only pumps in air (no oxygen) and helps me to exhale CO2. Now it is hilarious as people attempt to understand what I am saying!

At home I simply type it out on my computer for Ruth and others to read.

When traversing the nearby fish camp in my wheelchair, or when the computer is not handy I spell out words with a finger on my thigh or arm. I’m amazed at how people cannot fathom words written out that way. Others do fine.

I  just purchased an adjustable arm to hold my iPad that I can attach to my wheelchair or a table. And all Apple devises have the ability to have a preselected voice read aloud what I type or write.

In the past every thing I did relied on my tongue. When preaching at Coral Ridge Church when i was an associate minister it was usual to have 4,000 people in two services. I taught Sunday School classes with up to 200 people in attendance. As a classroom teacher speaking clearly was crucial.

But it doesn’t upset or trouble me. The chapter of public speaking is simply closed. I still have my intellect intact.

I’m like Moses who said of himself, “Pardon your servant, Lord. I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue.” (Exodus 4:10)

But a great day is coming when my tongue will be restored!

Philippians 2:9 Therefore God has highly exalted him and bestowed on him the name that is above every name, 10 so that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, 11 and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.

3 Replies to “I’ve lost ability to speak”

  1. Ken: I am so glad to hear from you! I have been praying for you since I heard of your ALS. As with so many, many others, you and Ruth have been among the most significant people in my life. I so miss you both and our time at Coral Ridge. The baby you encouraged me to adopt is 15 years old. He accepted Christ at 6. He plays piano beautifully. If I can get past my technological challenges, I will try to send you a recording of him playing. He is thinking he may want to go to Moody Bible Institute and get a bachelors in music and worship ministry. We have not had an easy time in many ways, and many comments you made to me before and after Sunday school just before Jonathan was born have been played over and over in my mind a thousand times. Those words have been such encouragement and a source strength. If there is anything I can do for you and Ruth, please tell me. I love you both, and know that we shall run together in Paradise! Robin


    1. Thanks for your email, Robin. It has been a long time since you traded warm Florida for the icy climes. Thanks also for the update re your son. I was an undergrad music student at Nyack College in New York. That’s where I met Ruth, who majoring in pipe organ.

      The Lord be with you. Ken


      1. I remembered your music backgrounds. The Lord’s continuity and connected story is amazing. I have such a sense of handing off the baton to Jonathan. Thank you for sharing your story! It gives us courage. You both are on our prayer cards. Remember: we know in whom we have believed, and are persuaded that He is able to keep what we’ve entrusted unto Him until that day! Anything you or Ruth need, tell me. I mean it now! (See, being a mom has made me a bit bossy!). Love you both, In Him, Robin


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