Independent Living for Adults With Adrenoleukodystrophy

Independent Living for Adults With Adrenoleukodystrophy
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Having a chronic condition such as adrenoleukodystrophy (ALD) can be particularly concerning if you are living alone. But there are steps you can take to help you live well and independently.

Learn about ALD

When you are living with a chronic disease, the first step to success is to learn everything you can about your disease, and what to expect. It’s important to know the ins-and-outs of your symptoms and their treatment.

In adults, the severity and onset of symptoms depend on whether you have adrenomyeloneuropathy (AMN) or Addison’s disease. Neurologic abnormalities in ALD include changes in behavior, learning, and motor skills. Symptoms related to adrenal insufficiency include vomiting, weakness, weight loss, and increased skin pigmentation.

If symptoms are well-managed, people with ALD can live full, productive, and independent lives, particularly when there’s no cerebral involvement.

Control stress

Having a chronic illness adds stress to everyday life, especially if you are living alone. Sources of stress can include symptom discomfort, feelings of isolation, financial pressure, and uncertainty about the future.

Assessing your situation and developing a path forward can go a long way toward reducing stress. Encourage your family members to be involved, if possible, and develop open communication with your healthcare team. A financial adviser also may be of help.

Having someone legally in place who, if necessary, can make health and financial decisions on your behalf can also bring greater peace of mind.

Re-evaluate your location

If you wish to continue living on your own, it might make sense to move closer to family members who can help support you.

You also may want to consider residing in an area that offers reliable public transportation, particularly since adults with ALD can have fatigue, a stiff gait, or leg weakness. Such problems may affect your ability to walk more than a short distance.

Make sure your residence can easily accommodate adaptive devices such as a wheelchair or braces, which many patients may need at some point.

Take advantage of community resources

With its wide-ranging symptoms, ALD can be stressful and wear you down.

Tapping into local resources can help in addressing issues like transportation to a doctor’s appointment or getting groceries. There are local government programs and services that can help with daily life. Your local library may also have information about community resources.

Stay socially involved

Even healthy people who live alone sometimes don’t thrive as well as others because of a tendency, with advancing age, toward social isolation. If you’re living independently and with a chronic condition, it’s important to your overall health and quality of life to stay socially engaged.

Particularly if close family is not nearby, it’s important that you have friends or neighbors who know about your condition and its symptoms, and can help you in case of an emergency. Such knowledge will also help your friends and colleagues be more understanding of disease-related absences from work, school, or social events.

Finally, find a support group in your local area or online for people with ALD. Your healthcare provider may be able to help you locate one. Here, you can share experiences and connect with others who understand what you’re going through. In addition to physical disabilities, emotional and psychological factors play an important role in the lives of patients with ALD. Getting connected can help you stay socially involved.

Get help with daily tasks

Because of your disease, you will likely sometimes need help with self-care tasks, household chores, or getting to appointments. Maintain a list of people you can ask for help.

If you don’t have someone to turn to, ask your health provider or social worker about services that may be available in your area. You may be eligible for meal delivery to your home, for example, or a home health aide. If you have AMN, problems with bowel and bladder control may limit your ability to travel about.

You should also work with a physiotherapist to develop a safe exercise program to help you maintain mobility for as long as possible. An occupational therapist can also help with finding easier ways to go about daily tasks, helping you to maintain your independence.

 

Last updated: Oct. 14, 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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