Spoon Theory for AADC Deficiency Caregivers

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by Mary Chapman |

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lumbar puncture and AADC deficiency

Caring for a loved one with a chronic illness such as aromatic l-amino acid decarboxylase (AADC) deficiency can be stressful and exhausting. Many people may not really understand this, even some closest to you, and it’s not always easy to explain yourself.

An analogy called the spoon theory can help family and friends “get” what you regularly go through. 

What is the spoon theory?

The spoon theory is an analogy conceived by a lupus patient, Christine Miserandino. She used it to explain to an inquiring friend what living with a chronic disease is like.

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, getting dressed, visiting the doctor, making dinner, etc.  When the spoons are gone, that’s it.

Healthy people, or those not caring for a child with AADC deficiency or another chronic illness, have all the energy necessary to do whatever they need to do on a given day. They, unlike you, have an infinite spoon supply.

The spoon theory underscores that those with a chronic disease — as well as their caregivers — have a finite amount of energy that must be carefully rationed. 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 AADC deficiency?

AADC deficiency is a genetic metabolic disease that affects the nervous system.

Because the disorder usually manifests in early infancy, caregivers can — or already have — spend years helping their child deal with symptoms that can include developmental delays, movement disorders, seizures, autonomic dysfunction, vision problems, fatigue, anxiety, and depression.

How to put the spoon theory into use?

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. When you’ve spent all your energy, your day is done.

It’s also important to not feel that all of your energy must go toward caring for others. It’s vital that you also practice self-care. If part of that means “using a spoon” for, say, a rejuvenating walk around a park, then so be it. The better you feel mentally and physically, the better you can care for your loved one.

When your spoon set is exhausted, don’t shy from asking for help. After all, once you’ve explained the spoon theory, your friends will better understand your needs.

Tips for stress management

There are many ways to handle the mental challenges of caring for someone with AADC deficiency:

  • Find a support group. Resources include the AADC Research Trust and the Pediatric Neurotransmitter Disease Association.
  • Maintain connections with family and friends.
  • Get sufficient sleep. Because AADC deficiency patients often have trouble sleeping, it can be hard for parents and caregivers to get enough rest themselves. If you can, create a staggered sleep schedule with a family member, so that you can each get proper rest.
  • Exercise. Every little bit of physical exertion can help lower stress levels.
  • Lower alcohol, nicotine, and caffeine intake. Such substances can increase stress. Reducing them can help with relaxation.


Last updated: April 8, 2020

