Three Little Words That Will Change My Life

Three Little Words That Will Change My Life

On a recent morning, I was lying in bed checking my emails. There was one from the hospital with test results from my last visit.

A few days earlier, I had tried a new medication and landed in the emergency room. It turned out to be a bad reaction to the medication and it wore off in a few hours. When I started walking and talking normally, I was released and told never to take that medicine again.

While I was at the hospital, tests were run to rule out all possibilities. One was a CT scan to see if I’d had a stroke. It was the results of that scan that landed in my inbox in the wee hours.

I knew that I hadn’t had a stroke, so I wasn’t too worried about the report. It noted a small venous angioma that hasn’t changed since my first brain MRI in 2016. No surprise there.

But the next three words rocked my world: moderate cerebral atrophy. I understood the words individually, but I couldn’t absorb the meaning of the phrase. And because I am an expert Google-er, I searched for answers to the questions swirling through my head.

My first stop was the National Institute of Neurological Disorders and Stroke website. It describes brain atrophy as “a loss of neurons and the connections between them.” Listed are several serious diseases and disorders associated with brain atrophy, including stroke and traumatic brain injury, Alzheimer’s disease, Huntington’s disease, multiple sclerosis, and encephalitis. I am not aware that I have any of these, but my list of diseases changes frequently.

Next, it lists symptoms. Dementia, no. Seizures, no. Aphasia — yes. This one hits the nail on the head. Aphasias are disturbances in speaking and understanding. Expressive aphasia results in choosing the wrong word or using partial phrases and incomplete sentences. This describes me perfectly.

I have always been a stickler for using the correct words. Now I stop halfway through a sentence and can’t remember how to finish it. This happens mostly when I am tired and have worked too long. I can take a break or take a nap and it isn’t as noticeable. But it worries me.

There is no cure and no treatment. The best I can hope for is to manage my symptoms by eating a healthy diet, controlling my blood pressure, and staying mentally and physically active.

Progression depends on what caused it in the first place. Diseases such as Alzheimer’s and multiple sclerosis are progressive and will continue to worsen.

For now, I will do what I can to slow it down. I have an appointment to discuss this with my doctor and I’m sure she will have ideas of steps I can take.

No matter what comes next, I’m not going to quit. I will keep fighting. Because that’s what lupus is, a fight against your own body.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

6 comments

  1. Lana says:

    Darla,
    I too have lupus and in the past few years I’ve been dealing with aphasia.

    What frustrates me are the people in my life who are well intentioned yet irritating when they tell me that “everyone has that, it is no big deal, just a normal part of getting older.” However I know it is not the same thing. I always had an excellent memory and vocabulary and then what seemed like overnight I started struggling to find words. Unlike you I have had a mini stroke and suffer from periodic bouts of seizures so in addition to lupus they may be contributing factors in my case.

    I too will never give up. I will keep fighting as new symptoms emerge. There are apps and games aimed at helping to improve your memory, my Physician suggested I check them out in addition to making sure to stay active mentally.

    Good Luck with the aphasia and your health as a whole.

    • Darla Gay says:

      Thanks for posting Lana. I talked to my nurse sister-in-law this afternoon. The first words out of her mouth were “it’s a normal part of aging” but then she said “but you’re not old enough for that”. And I thought thank goodness someone understands that this isn’t normal!

  2. Regina says:

    Darla,
    It makes a difference when someone really listens and acknowledges your concerns. Keep strong and continue to take care of yourself.

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