The Tale of the Four Neurologists

When I began to tire after teaching and had to lay down in bed to rest, I knew something was wrong. I had never rested during the daytime in my entire life! That was for wimps and wussies. But I had a hunch something was wrong. In addition to fatigue, there was the slurring in speech and the inability to hold my head up while biking.

That began what I call the “Tale of the Four Neurologists.”

Neurologist #1 prescribed an MRI to test for dementia. What a nut cake! Sorry, bud, I’ll look for another doctor.

Neurologist #2 had me tested for ALS. Verdict? Not ALS. Diagnosis? Two damaged vertebra, #5 and #7, plus possible asthma. Referral to a pulmonary doctor resulted in breathing tests, a diagnosis of asthma, and prescription for an inhaler, from which I developed thrush.

Neurologist #3, a specialist in ALS at a university hospital, diagnosed me with ALS. Prescription? “Come back and see me in three months and I’ll be able to tell you how fast ALS will develop in your body. And stay away from a ventilator as long as you can.”

Neurologist #4 at Mayo Clinic for a second (or was for a fourth?) opinion. “Yes, you have ALS.” Prescription? “I’m going to put you right away on a ventilator for night time use. It will help to take the stress off your breathing muscles. And I will also prescribe a cough assist machine to help evacuate the phlegm which will increasingly develop.” Within one week a respiratory therapist came to the house, bringing both machines and beginning a once per month visit. That was three years ago.

Where would I be today if I followed the diagnosis and prescriptions of the first three neurologists? But to be fair, many neurologists go a lifetime without ever seeing someone with ALS.

Currently I am a patient of an ALS specialist at the University of South Florida in Tampa, upon referral from the doctor at Mayo. Mayo was a 6-hour roundtrip. Tampa is a 3-hour roundtrip. The neurologist at USF and his team prescribed an electric wheelchair, a second ventilator which I use during the day, and a condensed liquid diet.

The ventilator is hitched to the back of my electric wheelchair. The image below is of my “all-terrain” wheelchair, the Quickie QM 710, and attached ventilator, the Trilogy, made by Phillips Electronics.

.trilogy-on-wheelchair

Both the neurologist at Mayo and the neurologist at USF are strong proponents of noninvasive ventilation as opposed to the more conventional invasive ventilation (via a tracheostomy). Both strongly advise against a trach, even in latter stages of the disease. As the doctor at USF said, “If you get a trach you will not die from ALS. You could live another 10-20 years, but you would be trapped inside a body over which you would increasingly have no control, not even to blink an eye. The Trilogy ventilator that you are using will extend your life well into the time when conventional therapy would have had you on a trach.”

The advances in technology, although still falling short so far as a cure is concerned,  have greatly improved the treatment of ALS, even in the past 5-6 years.

As for pulmonary doctors who deal with lung disease, usually the first doctors to see you in the hospital in cases of emergency, they know very little about ALS and other neurological disorders. The tools they automatically reach for in their tool kit are oxygen, which ALS patients do not need, and the tracheostomy.

I was admitted to a local hospital in June 2015. My problem, which I learned later, was panic breathing. The USF neurologist prescribed a mild dosage of morphine should the problem reoccur. But in the local hospital I was immediately administered oxygen, and, yep,  the pulmonary doctor assigned to me 1) told me I’d eventually need a trach, and 2) kept me in the hospital for five days “for observation.” And my wife, Ruth, brought my ventilator to the hospital! I knew what BYO was for computers, tablets, and smartphones. This was BYO for ventilators!

Thus, I have written instructions in case of any emergency, “No trach! I have a noninvasive ventilator.”

(Featured image, “Hear no evil, See no evil, Speak no evil,” is used by permission via license from ShutterStock)

 

 

 

 

9 Replies to “The Tale of the Four Neurologists”

  1. Hey Dr. Wackes, so good to get the “Wackes Family Gazette” that Ruth sent to us after Christmas. Words will never be able to tell you how much you, WA, the teachers there, CRPC, the ministers there, people we know and have know from there have been to Rick and I. We talk about it alot and what the Lord did for us and our family through all the teachings we had. We grew so much in our Lord and Savior and we marvel still at how the Lord has and is still using us. We always enjoyed your Father’s day sermons and the message you gave. Our kids Rick and Paula have been blessed by WA and the teachings they received there, their faith and guidance from that. Proud to say they have Christian mates and families that are still growing with their children as well. We pray for you and Ruth and your families. We had a dear friend here in Lawrenceville who had ALS and we spend nights with Mary so Rick could help her with Wayne if needed. He has passed and is with our Lord but it made us aware of things we never knew and learned that life is so fragile but knowing that God is in control and it is His timing in all of these things. Mary has since moved closer to her children in Augusta but we keep in touch. What a Godly family they are and it was a blessing to us to see her walk with Wayne and ALS. Please take care and know you and Ruth are in our thoughts and prayers. God has so many plans for each of us and we just need to look up, stretch our hand to His and know we are His. Thank you for your love and support for our families. God bless and keep. Rick and Barb Jarvis

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  2. Hey Ken, Dr. Wackes, I have read your bloggings! Thank you for them; so inspiring. I must say you have always been one of those top five or is it three people in my life that I love and admire although you wouldn’t know it since you are just now hearing from me! I see Ms. Karen has left a comment and she is one (child) I adored way back when. Please know that I pray for you a bunch and have thanked the Lord for you. These blogs are going forward to my own adult children and others. Also, when we were living in south Florida for about 3 yrs., left in 2003, I purchased your Marriage course with tapes! for my college age children. Now, we are in Huntsville, Al., attending Westminster Pres. Church and Stephen Hooks goes there. He is now head of the Westminster School which is located on the same property. When I spoke with him lately, I gave him the books and tapes and told him I had heard that you developed and taught the course in a senior high class. So, probably we can get the DVDs now if he decides to use it.

    Just so you know; David and I are in Huntsviile because our son and 4 children are living here. Nathan said we ought to come in case we needed him!! Then, we were going to snowbird to Phoenix, Az. as our daughter lives there and we have 3 Lovelies we need to see. For us, the snowbird thing didn’t work? It takes time to build that community of friends. Top on my list for the past 10 or 11 yrs. has been taking Precept courses with Kay Arthur. Her inductive studies help me think and learn for myself. God has been faithful to provide my desire to know Him. I completed a 2 yr. study of Revelation and know that there are different thoughts on the book for sure but I came away thinking that if I do a time line of history with my Lovelies or Sunday School class, I need to include some of the basics of Revelation and end times………sure would love to talk with you about all this. I would wait for you to write it out!!

    Much love to you, Ruth and your Lovelies

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    1. Karin: It was great to hear from you! And thanks for the info about your family! You’re too young to have grandchildren! Karen lives near us and teaches K5.

      Re Revelation, my interpretation is perhaps different than Kay Arthur. I view it primarily as an account of history prior to 70AD. That’s why the destruction of Jerusalem is not mentioned or alluded to.

      My greetings to David.

      Love, Ken

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  3. Neurologist #4…another cairn? God is so involved in every step of your journey! It comforts me to know that you are being held by the Everlasting Arms. Love you

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