Understanding The Research And Finding Support For Multiple System Atrophy
Multiple system atrophy can be described as a progressive neurodegenerative disorder that causes changes to multiple body systems, including the central nervous system and autonomic nervous system. These changes typically progress over time, eventually leading to autonomic failure, and are ultimately fatal. People living with multiple system atrophy may face mental and physical health challenges as they cope with their symptoms and physical decline. Various support systems are available to help these individuals, including therapy with a licensed mental health professional.
What is multiple system atrophy? ICD-10 code
- Progressive changes in movement, including a loss of movement in certain limbs or parts of the body
- Slowness, tremors, and stiffness in the body
- Clumsiness
- Differences in one’s voice
- Dizziness
- Lack of bladder control
- Spinal degeneration
- Anxiety
- Depression
- Supine hypertension (high blood pressure when lying down)
- Sleep disorders, such as rapid eye movement (REM) sleep behavior disorder
- Low blood pressure
- Nerve cell degeneration
- Changes in head positioning, posture, and facial expressions
The symptoms of MSA, cerebellar type, can mimic those of Parkinson’s disease, so a doctor will typically conduct a differential diagnosis to determine which condition a person has. Both conditions are degenerative, meaning they tend to progressively worsen. However, symptoms can be treated, and there are ways to cope with the mental and physical effects of either disorder.
Signs you or a loved one might be developing MSA
The development of MSA can be slow, and signs might not appear immediately. Symptoms can also mimic other conditions, such as Shy Drager syndrome and Parkinson’s disease. Some people might initially believe they are developing cognitive challenges like dementia, which can lead to late diagnosis and treatment.
Early intervention can be crucial for slowing the progression of MSA and helping people cope with the changes to come. Below are some early signs of MSA:
- Sexual dysfunction, such as erectile dysfunction
- Incontinence
- Constipation
- Loss of muscle coordination
- Clumsiness
- Postural lightheadedness
- Fatigue following exercise
- REM sleep behavior disorder
- Orthostatic hypertension (a sudden, significant increase in blood pressure upon standing)
If you notice any of the above signs, talk to your doctor about them, as they can be symptoms of many conditions. Multiple system atrophy tends to be most common in one’s 50s and 60s, and those at this age may already experience some of the above symptoms due to aging. Regardless of whether the symptoms are caused by aging or a medical condition, talking to your doctor is often the best course of action.
How to cope with bodily and cognitive changes
Accepting that one is living with a nervous system disorder can be challenging and may negatively impact mental health. Below are a few ways to cope with these changes.
Exercise
Exercise cannot cure or reverse symptoms of MSA but may improve gait in people with the condition. Exercises can be done at home and don’t have to be intensive, but physiotherapy with a professional can also be helpful.
Practice radical acceptance
Radical acceptance is a skill from dialectical behavior therapy (DBT) that teaches acceptance in the face of scenarios that cannot be changed, such as a terminal diagnosis. Using this skill may help people accept their condition and make choices to improve their health as best they can. Below are the steps:
- Observe the ways in which you might be questioning or fighting your reality.
- Remind yourself that you cannot change the current situation.
- Try to note any causes for your current reality. Acknowledge that many people do not have control over illness, but you can control how you proceed.
- Practice acceptance and tell yourself you are willing to accept this situation, even if it is difficult.
- List all the behaviors in which you'd partake if you had already accepted this situation. Then, act this way until you do accept the situation.
- Think of ways to accept the situation if it worsens.
- Connect with yourself using mindfulness or meditation and attend to any bodily sensations.
- Allow emotions like disappointment, sadness, grief, and anger to arise, noting them but not acting on them.
- Acknowledge that life can be worth living, even when pain and illness exist.
- Create a pros and cons list if you continue to resist acceptance.
A therapist can help an individual through this process and serve as a guide during this time.
Talk to a therapist
When managing the mental health impacts of MSA, you might benefit from talking to a therapist. Loved ones and caregivers can also meet with a mental health professional for support. A therapist can provide coping skills, emotional support, validation, and guidance.
Use mindfulness
Mindfulness is a skill that can be used alongside radical acceptance. This skill generally helps individuals observe their emotions, thoughts, and experiences without assigning judgment. Consider downloading a guided mindfulness or meditation app to support this process.
Attending support groups
Support groups can be a way to connect with other people experiencing MSA or terminal illness. When you can talk to those who understand, you may gain a sense of being accepted and comforted. You may also be able to express difficult emotions without judgment or the fear that others won’t understand.
Educating yourself on your condition
Education can be a way to reduce the fear often associated with difficult diagnoses. If you’re aware of the symptoms you might experience, your prognosis, and recommended treatments, you may be better able to cope. You can also prepare yourself for the progression of the disease, potentially planning for end-of-life care as well.
How is multiple system atrophy diagnosed, and is it treatable?
Multiple system atrophy is a terminal condition. It’s usually diagnosed with tests like magnetic resonance imaging (MRI) scans and an examination by a medical doctor. After diagnosis, people usually live for six to nine years.
There is currently no cure for this condition, and the progression can’t be slowed, although symptoms can be addressed. Working with a doctor, physical therapist, and mental health professional can help you manage your symptoms and make yourself more comfortable.
Mental health statistics
Mental health conditions like depression and anxiety can be associated with an MSA diagnosis. Below are a few statistics on how this condition might impact mental health and wellness:
- Fatigue caused by MSA might incite low mood, depression, and anxiety.
- More than 50% of people with MSA are thought to have depression.
- After receiving an MSA, people may experience dread, anger, frustration, and other challenging emotions. Mental health professionals can be helpful in supporting people through these difficult feelings.
- People with MSA often experience excessive daytime sleepiness (EDS), REM sleep behavior disorder (RBD), breathing challenges, and sleep fragmentation. Some may experience nightmares and night terrors. Medication might be helpful in reducing these symptoms.
How to support a loved one with MSA
You can take a few steps to offer support to loved ones with MSA:
- Validate their emotions and experiences instead of telling them what they could do to make it better
- Offer support in any way the person might need, such as helping them make dinner or letting them know they can reach out anytime
- Help them seek medical and mental health support
- Express how much you love them
- Educate yourself on the impacts of MSA and how they can differ from person to person
- Recommend resources in your area to help your loved one through this time
- Help them with end-of-life planning and their will
Mental health support
If you or a loved one has been diagnosed with MSA, accessing in-person mental health support may be challenging. You might consider trying an online therapy platform like BetterHelp, which can typically match you with a therapist within 48 hours. Online therapy can also offer access to group sessions and journaling prompts, which can be helpful when processing your diagnosis or the diagnosis of someone you love.
Studies suggest that online therapy may be helpful for people coping with their own mortality. According to a 2022 study, “Participants’ MiL (meaning in life) and life satisfaction significantly improved between before and after TDT (telehealth dignity therapy), and MiL gains were maintained at three-month follow-up. The program was found to be a feasible, timely, and potentially efficacious positive psychology intervention.”
Takeaway
- Previous Article
- Next Article