This article was published in the Dystonia Dialogue.
Whether someone has lived with dystonia for months or decades, the disorder often requires adjustments across many areas of daily life. The advantages of experience and aging can help ease certain aspects of the dystonia journey, while evolving realities may create new challenges.Martha Murphy, DMRF Support Leader, Information Coordinator, & Brain Bank Liaison
"I’m 69 years old and have had cervical dystonia for 46 years. Dystonia has become a part of my life, but I don’t consider that a negative. I have accepted it and acknowledge that it can create some limitations. I forgive myself for not being able to do as much as I used to do and realize that I tire more easily. I am grateful that my dystonia did not spread to other areas of my body and that my botulinum toxin treatments provide me with enough relief to lead a somewhat normal life. I think that those of us with dystonia need to remember to be ‘kind’ to ourselves. Having dystonia has also made me cognizant of the fact that almost everyone is dealing with something in their lives. We don’t get to pick and choose what life hands us, so we make the best of the hand that we’re dealt and keep a positive attitude as much as possible."
As people age they may become less responsive to drugs or more likely to experience side effects. Changes in the body’s physiology may reduce the benefits of some drugs but create a potential for benefit in another, even if that drug has been tried before. For example, an individual who could not tolerate a drug at an average dose in their 40s may experience a benefit from the same drug a decade later at a fraction of the dose. Some individuals find that after trying many prescription medications, adequate relief with the least side effects can be achieved through over-the-counter analgesics and practices to support overall wellness such as regular relaxation practices and gentle exercise.
Although bones and joints are not directly targeted by dystonia, the disorder may accelerate the onset of certain orthopedic or bone-related conditions. At the same time, the development of expected orthopedic conditions such as osteoporosis (a loss of bone mass resulting in fragile bones) and arthritis (inflammation of the joints—namely the cartilage and protective cushion structures of the joints) may aggravate dystonia symptoms. Both osteoporosis and arthritis can cause pain and restrict movement. Controlling the dystonia as much as possible may help delay the onset of these conditions, and addressing the bone and joint conditions will help avoid aggravating the dystonia.
Dystonia may cause long-term effects in bones, joints, and muscles. Individuals with cervical dystonia may be at risk for chronic arthritis of the neck with compression of the spinal cord, inflammation or dislocation of discs in the upper spine, pain from pinched nerves, and chronic neck pain with secondary head pain and headache. Truncal dystonia symptoms (affecting the torso) may create inflammation or dislocation of discs in the spine and pain from pinched nerves. Arthritis of the spine may also be present. Individuals with dystonia in the legs may develop hip pain and arthritis. Severe dystonia in the legs may cause joint fusion in the ankle and/or muscle contracture. Focal hand dystonia may cause shoulder pain and arthritis in the shoulder, wrist, elbow, hand, and fingers.
Dystonia may cause painful muscle inflammation caused by excessive muscle contractions. This condition is called myofascial pain syndrome. The effects of degenerative bone and joint conditions and myofascial pain syndrome may be prevented and treated through medications, non-drug approaches to pain such as gentle massage and/or meditation, physical therapy to preserve range of motion and strengthen weakened muscles, and occupational therapy to address everyday challenges at home, in the workplace, and general mobility.
A number of factors associated with natural aging—including conditions such as osteoporosis and arthritis mentioned above—can affect a person’s mobility and balance. One of the most serious dangers that these factors create is risk of injury due to trips and falls. Developing lower body strength and engaging in exercises focused on balance and smooth movement can help prevent falls. The potential side effects of certain medications may also contribute to mobility and balance problems.
The same factors that increase the risk of falling may also diminish a person’s ability to recuperate as quickly from falls or other injuries. You may need to give yourself added time to recover from demanding activities such as traveling or rigorous household projects. Taking care of your joints and maintaining physical flexibility may help your body withstand these stresses. Small changes to your home may make the environment safer by addressing poor lighting or tripping hazards.
Adequate sleep is an important component of good health and daily coping. Sleep challenges are common among individuals with dystonia. As people age, sleep patterns change, and it may become more even difficult to sleep soundly. You may need to spend more time in bed to acquire the same amount of sleep. It may become more challenging to stay physically comfortable in bed. Relaxation practices like self-hypnosis, breathing techniques, and meditation can help the body achieve rest and rejuvenation if you have trouble sleeping.
Gentle exercise and maintaining physical fitness is important at every age to improve strength, balance, flexibility, and endurance. Each of these can help the body withstand the impact of dystonia. Exercise also helps promote a healthy emotional outlook, which has a profound effect on quality of life. Consider speaking with your doctor about the exercise options that are right for you. Consultation with a physical therapist or fitness trainer can provide direction regarding suitable types of exercise, an appropriate routine, and activities to modify or avoid. Consider cardiovascular exercise, strengthening techniques, flexibility exercises, water exercise, and inclusive fitness instruction classes and programs that prioritize accessibility for all body types and abilities.
Living with dystonia often involves constant problem-solving and overcoming challenges. Alternating feelings of empowerment and frustration are common. Because dystonia can be exhausting both physically and emotionally, some individuals feel worn out by years of coping with a chronic illness. Changes in employment, activities, living arrangements, finances, and relationships may lead to feelings of sadness, regret, denial, and frustration. Depression and anxiety are common among individuals with dystonia of all ages. It is normal to react to loss. Negative feelings that persist for more than two weeks may signify a need for professional support. Left untreated, mood disorders and anxiety can have serious health consequences. Treatment is available and may involve counseling, medications, and/or self-help practices.
Tips for Maintaining Emotional Health:
- If you feel overwhelmed by sadness, anger, fatigue, or worry, reach out for help. Consider speaking to your doctor about being evaluated for depression and anxiety.
- Remain as socially active as possible. Accept invitations from friends and family, and cultivate new friendships with people of all ages
- Find activities that are meaningful to you, particularly those that connect you to a greater community.
- Revisit activities that you enjoyed in the past.
- Develop and explore your spirituality.
- Physical exercise may help you feel better emotionally.
- Cultivate your curiosity and intellect. Learn about subjects that interest you.
- Participate in a dystonia support group, locally and/or online. Support groups provide the opportunity to simultaneously give and get support.
Normal age-related vision changes typically begin around age 40. Individuals may begin to notice slight changes in vision that tend to progress over time. Blepharospasm (dystonia of the eyelid muscles) is a focal dystonia that can affect eyesight directly by causing excessive blinking or involuntary, and typically begins late in life. Additional forms of dystonia may also affect vision. Involuntary postures of the neck may make it challenging to face forward while walking or doing other tasks. Tremors and movements may make it difficult to insert contact lenses or wear glasses. Executive or progressive lenses may be more practical than traditional bifocal lenses. You may need to help inform your eye doctor about dystonia and how this affects your vision needs.
If you are consulting multiple doctors for various conditions, it is vital to keep each physician’s office informed about the services and prescriptions provided by the others. Keeping all of your doctors informed of your total care will reduce the risk of undergoing procedures or receiving medications in combinations that are ineffective or unsafe.
Special thanks to Neal Hermanowicz, MD, FAAN for reviewing this content.
The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.