‘White Matter Disease’ – Does It Matter?

Wrestling with a new term for a disease of the brain and what it meant

Written in the two page report was a notation that I had “white matter disease.” Not only did I not know what that was or know that I had it but it sounded ominous. Or, it could just be an old age thing like your gray matter is now turning white. However, the word disease bothered me; bothered me a lot. I made an appointment with a neurologist.

 

When we moved from Dunnellon, Florida to Palm City, Florida, some of the important papers I needed were my medical records to go to my new doctor. The records were sent directly to our house and I looked through them before the doctor’s appointment. I found the results of my last brain C-scan in the many pages of my health reports. It was my last C-scan after a fall down a flight of stairs in Alabama. I had emergency brain surgery that saved my life.

Written in the two page report was a notation that I had “white matter disease.” Not only did I not know what that was or know that I had it but it sounded ominous. Or, it could just be an old age thing like your gray matter is now turning white. However, the word disease bothered me; bothered me a lot. I made an appointment with a neurologist. I showed him the C-scan report where it read, “white matter disease.”  The doctor asked a few questions and then stepped out of the room. He returned and said, “I’ve ordered an EEG for you. I want to make sure you are not having silent seizures. That sometimes happens with a brain injury.” He said that the EEG will measure and record the electrical activity of my brain. Okay, I said to myself, maybe brain seizures cause white matter disease.

The EEG

The technician for the EEG was a really nice person and he helped calm me by explaining what he was doing as he attached the “Frankenstein” wires to my head one by one. The hard part came after the wires were fully attached. You cannot move for twenty minutes. You cannot cough. You cannot hiccup. This is very difficult when your mind says, “don’t cough” and your body says, “Yeah, right!” So I coughed one time and got it over with. I prayed without ceasing and God carried me through the 20 minutes of stillness. The results were to be explained to me after the neurologist looked at the report.

The EEG Results

The neurologist read the report and let me know that I passed the EEG with flying colors. No hidden seizures. That was good news. “But, what about the White Matter Disease?” I asked. “Oh,” he replied casually, “Those are dead brain cells. The good news is that you have millions of brain cells.” As he was leaving the office he turned to me and said, “I want you to take a memory test. Someone will be right in to give it to you.”

The Memory Test

I’m not keen on any type of testing but this one scares me. Does the white matter disease eat up my memory? The door opened and a young woman in a green nurse outfit walked in with a folder in her hand. She introduced herself as Leah.  “I’m going to be giving you a memory test,” she said.  “First, I’m going to tell you three words and sometime during this test I will ask you to tell me what those words were and then she said the test words; “apple, tree, penny.”  Okay, those are simple enough words easy to remember. I thought the three words would be more like equilibrium, concave, and spiral. Then the nurse gave me an 8 1/2 x 11 piece of paper and instructed me to fold it in half and throw it on the floor. I couldn’t believe my ears. Why would she want me to do that? But I was obedient to her command and took the paper, folded it in half, stood up and threw it on the floor. However, I felt like I was misbehaving in kindergarten.

She picked up the paper and gave it back to me and told me to write a sentence on the paper. The sentence that immediately popped into my head was, “For by grace you are saved through faith,” and that’s what I wrote and handed to my memory tester. She read it and smiled, “This is the most unusual sentence I have ever received while giving this test.” That was a God sentence for her and for me. For me because He was letting me know that He is with me, even in this testing. For her because His word does not return void.

The test went on; what day is it? What season is it? Who is the President? Who is the vice president? What month is it?  Who lives in Grant’s tomb? (actually she didn’t ask the Grant’s tomb question, which I would have gotten right).

And then the big question of the day – what are the three words I gave you at the beginning of the test? Rats! I looked at her trying to read her mind because obviously my mind did not have the three words available for me. “Um,” I stammered. “Apple…pause, brain search…tree…another pause. The third word was gone obviously drowned in my white matter disease. I felt frustrated. “I don’t remember the third word,” I exclaimed. She said, “Penny” as she picked up her folder and headed towards the door. Now I remember but it’s too late to ace the question.

Almost out the door she turned to me and asked, “What is my name?” “Penny” was my first thought but that couldn’t be it. My brain was totally white! I wish she had asked me the Grant’s tomb question.  She must have recognized my brain freeze because she said, “Leah,” as she walked through the open door. I felt like the scarecrow in the Wizard of Oz, “If I only had a brain.”

After a few minutes the neurologist returned and sat with me to give me the results of my “Memory Test.” Out of 30 questions I answered 28 correctly. Whew, that was better than I expected. I’m not totally like the scarecrow.  I do have a working brain! He told me to challenge my brain more to open up new brain cells. He said, “Live an active life, exercise, see and talk to people, work on picture puzzles and crossword puzzles.” He added that he would be checking me periodically to see if there are any changes in my brain’s white matter and my memory.

Epilogue

“What is White Matter Disease?” From an Internet article: “Some white matter disease is degenerative, leading to increasing damage over time. In other cases, the damage is the result of a single event and the degeneration will not progress any further. Follow up scans can be used to monitor the progress of the disease and to identify any worrying or sudden changes that might require a change in the course of treatment.”

Perhaps mine is in the “single event” category, from the fall down the flight of stairs. But, if that is not the case, I will hold on to the promise in God’s Word: “He will have no fear of bad news; his heart is steadfast, trusting in the Lord” (Psalm 112:7).

Miriam Gautier is a member of Treasure Coast Presbyterian Church (PCA) in Stuart, Fla.

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