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.
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)