What It's Like to Live With Multiple System Atrophy

Multiple System Atrophy is an uncommon neurodegenerative disorder characterized in its initial stages by symptoms similar to those of Parkinson's disease. Today, we'll look at what it's like to live with Multiple System Atrophy.
What It's Like to Live With Multiple System Atrophy
María Vijande

Reviewed and approved by the pharmacist María Vijande.

Written by María Vijande

Last update: 27 May, 2022

Today, we want to take a look at what it’s like to live with Multiple System Atrophy. This neurodegenerative disorder is uncommon and affects the autonomic nervous system and movement.

The symptoms that characterize this disorder include episodes of fainting and problems with an individual’s heart rate and bladder control. In the initial stages, the symptoms of Multiple System Atrophy are similar to those of Parkinson’s disease.

Multiple System Atrophy evolves quickly. Patients, in time, will have to depend on a wheelchair. They experience other degenerative processes including intermittent catheterization and executive dysfunction.

The evolution of this disorder is evaluated using a unified scale of the classification of Multiple System Atrophy. It catalogs everyday activities, vegetative nervous motor disability, and disability in general.

Unfortunately, for those who live with Multiple System Atrophy, the degenerative process is inevitable. In fact, the average life expectancy is between 6 and 9 years, as there is currently no cure for this disorder. However, there are a series of measures and medications that help to relieve symptoms.

What is multiple system atrophy?

Currently, experts are unaware of what causes Multiple System Atrophy to occur. However, professionals in the field have studied the possibility of it having to do with a specific hereditary component. In the same way, they’ve researched environmental toxins as a possible factor in this disease.

However, they found no evidence to support their theories. The disorder produces the deterioration and atrophy of certain parts of the brain. To be more specific, it affects the cerebellum, basal nuclei, and the brain stem. These parts are responsible for internal body functions, digestion, and motor control.

Multisystemic atrophy and the brain.
Behind the loss of cognitive and motor functions lies a degenerative process that affects neurons.

The most typical symptoms, among many others, are the following:

  • Loss of fine motor skills. This implies difficulty performing basic activities like closing the mouth and chewing.
  • Interrupted sleep patterns. Those who live with Multiple System Atrophy have a hard time falling asleep and experience fatigue during the day.
  • Frequent falls. This is the result of the loss of control over their own bodies, vertigo, and fainting.
  • Loss of intestinal and bladder control.
  • Absence of sweating which can affect any part of the body.
  • Vision and speech problems.

The way in which Multiple System Atrophy develops may vary, but the illness never goes into remission. Depending on how the degenerative process advances, daily activities can become harder and harder for patients to perform.

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Treatment for those who live with Multiple System Atrophy

As we stated above, no cure for Multiple System Atrophy currently exists. Nor are there any treatments to slow down the degenerative process in the brain. However, there are studies underway that are evaluating medication that could delay the evolution of the disorder.

Certain patients who suffer some of the most serious symptoms of this disease can benefit from medications or treatments that are specific to these symptoms. For example, they can add salt to their diets and avoid heavy meals and alcohol in order to decrease fainting and dizziness.

In this case, for patients who follow a low-sodium diet, doctors also prescribe fludrocortisone. At the same time, they often prescribe midodrine in order to increase the volume of blood and narrow blood vessels. Furthermore, drinking one or two glasses of water before getting out of bed can also help to raise blood pressure.

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The process of Multiple System Atrophy

Family therapy for patients with multisystemic atrophy.
Given the degenerative changes that appear with time, therapy and family support play a key role in caring for patients.

Multiple System Atrophy affects approximately 5 out of every 100,000 people.

Those who live with Multiple System Atrophy often feel a sense of urgency and a desire to live their lives once they receive a diagnosis. However, in the meantime, the degenerative process advances. As a result, patients may experience personal powerlessness, depression, and moments of crisis .

Therefore, it’s fundamental for these individuals to seek therapy, which can be very helpful in coping with the illness as well as possible. At the same time, the support of family members and close friends is also indispensable.
Patients that suffer from Multiple System Atrophy, in general, live for 7 to 10 years after the first symptoms appear. However, this number can vary. On occasions, people can live with Multiple System Atrophy for more than 15 years.

Death, at the end of the illness, generally occurs as a result of respiratory problems given the inability of the nervous system to self-regulate.

This text is provided for informational purposes only and does not replace consultation with a professional. If in doubt, consult your specialist.