The Spoon Theory for Adrenoleukodystrophy Patients

The Spoon Theory for Adrenoleukodystrophy Patients
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Adrenoleukodystrophy (ALD), a disease associated with neurologic dysfunction and adrenal insufficiency, often may cause you to be tired and stressed. Trying to explain to family and friends, many of whom may have never heard of this rare genetic disorder, and make them understand what you’re going through may be an added challenge.

The spoon theory may help you explain things.

What is the spoon theory?

A lupus patient, Christine Miserandino, conceived the spoon theory to explain metaphorically to inquiring friends what it is like to live with a chronic disease.

According to the theory, you start each day with 12 spoons. You have to give up one spoon for each task you perform: brushing your teeth, dressing, visiting the doctor, making dinner, etc. When you’ve gone through all your spoons, that’s it for the day.

Healthy people usually have all the energy necessary to do whatever they need to do in a day. In other words, they have a seemingly infinite spoon supply.

The spoon theory underscores that those with a chronic disease such as ALD have a finite amount of energy that they must ration carefully. Opting to perform an errand or task limits what you can do for the rest of your day.

How does the spoon theory apply to ALD?

Mutations in the ABCD1 gene cause ALD. The disease is characterized by the accumulation of a compound known as saturated very-long-chain fatty acids (VLCFAs). This accumulation destroys the protective sheath that insulates nerve cells. It also may damage the adrenal glands.

Damage to the adrenal glands causes a shortage of steroid hormones, a phenomenon known as adrenal insufficiency. The body needs these hormones for various functions, such as metabolism and stress regulation, reduced inflammation, and blood pressure regulation.

Neurologic abnormalities include changes in behavior, learning, and motor skills. Adrenal insufficiency symptoms are vomiting, weakness, weight loss, coma, and increased skin pigmentation.

However, because symptom management may allow you to be somewhat active, those around you may sometimes discount or overlook ALD’s toll on your life.

Putting the theory into practice

Understanding that you have only so much energy renders daily prioritizing and planning crucial. Show yourself compassion if you don’t complete everything you set out to do. Remember: when you’ve spent all your energy, you are done with your day.

It’s vital that you practice self-care. If part of that means “using a spoon” for, say, a rejuvenating walk around a park instead of a small — but potentially tiring — get-together with friends, then so be it. You know your body best.

Once you’ve explained the spoon theory, your friends and family should be able to better understand your needs. And, when you exhaust your spoon set, don’t be shy about asking for help.

 

Last updated: Sept. 16, 2020

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Adrenoleukodystrophy News 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.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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