So, you got the fated tremor? After various trips to the doctor’s clinic, your worst fears have been confirmed. You never thought it would be you.
But here it is and now you don’t know what to do. Everything is misty, dark, and uncertain. Living with Parkinson’s is like floating in an ocean of uncertainty; Seeking a ray of hope in an impenetrable tunnel of darkness. But there is always light at the end. Lisette Ackerberg shared her experience with Parkinson’s disease in an interview with Michael J Fox Foundation, “ I don’t stop living because of Parkinson’s, I don’t let it define me.” Hard as it may seem it is possible to not just live but also live well with Parkinson’s.
What is Parkinson’s?
Parkinson’s is a neurodegenerative disorder occurring in late adulthood. It is a progressive disorder with five stages. The first stage involves mild non-interfering symptoms which become prominent in the second stage. The third stage involves impairments like loss of balance, falls, etc. The fourth stage impairs autonomous movement and performance of activities of daily living. Patients are usually bedridden in the final stage and can also have hallucinations and delusions.
What causes Parkinson’s?
Loss of nerve cells
Nerve cells in the substantia nigra are responsible for the production of dopamine which operates the basal ganglia. They control and coordinate movements. The loss of nerve cells in this area can occur due to genetic factors or environmental factors like toxins, medications, or other disorders. The degeneration of nerve cells is a slow process and symptoms appear only after 80% of cells have degenerated.
Non-epinephrine
Non-epinephrine is a neurotransmitter required for the proper functioning of our sympathetic nervous system and functions digestion, breathing, blood pressure, etc. Reduction in non-epinephrine is associated with non-motor symptoms like dementia, depression, anxiety, orthostatic hypotension, etc.
Lewy Bodies
Clumps of specific substances in the brain cells are called Lewy bodies. Various substances can be found in Lewy bodies, however, alpha-synuclein has been linked with Parkinson’s.
Other risk factors
Older age, male sex, and family history of Parkinson’s are related to increased risk for the disease. Traumatic brain injuries and exposure to toxins are also known risk factors.
Signs that it is Parkinson’s disease
Parkinson’s disorder can involve both motor and non-motor symptoms like–
Tremors
Slowed movement
Muscle stiffness
Posture and balance problems
Unsteady walk or shuffling gait
Reduced ability to make unconscious movements like smiling, blinking, or swinging the arm while walking
Spasms and twists in muscle or painful cramps (dystonia)
Decrease in facial expression
Blurred or fast speech and monotony in tone
Writing difficulties and small handwriting (micrographia)
Chewing and swallowing problems
Urinary problems
Thinking and memory problems
Depression and anxiety
Hallucinations and delusions
Constipation
Loss of smell
Sleep disturbances and restless leg syndrome
Apathy
Weight and vision changes
Low blood pressure
Decreased sexual desire or performance
What can my doctor do?
Although there is no cure for Parkinson’s, your doctor may recommend some treatments for symptom management-
Medications
Medicines are prescribed based on the severity, side effects, and success in symptom control.
Levodopa: Levodopa is used for tremors, bradykinesia, and muscle rigidity. It is taken with carbidopa to combat side effects and allow more amounts of medicine to reach the brain. Dyskinesia is one of its side-effects.
Dopamine agonists: They imitate the effects of dopamine, but are not as effective as levodopa.
Catechol O-methyltransferase (COMT) inhibitors: They are usually used to increase levodopa’s effectiveness by blocking enzymes that break dopamine.
Amantadine: This is mainly used for dyskinesias.
Surgical options
The effects of medicines wear off over time. Usually, this is managed by changing medications or recommending surgical treatments.
Deep brain stimulation (DBS): Electrodes are implanted to deliver electrical impulses that change brain abnormalities that cause symptoms. It is effective with motor symptoms but not with non-motor symptoms.
Carbidopa-Levodopa infusion: A feeding tube is placed in the patient's small intestine through which a continuous dosage of levodopa-carbidopa is delivered.
Pallidotomy: The globus pallidus, a small portion that controls movements, is destroyed to reduce motor symptoms.
Thalamotomy: A small part of the thalamus is destroyed to control severe arm and hand tremors.
How to live well with Parkinson’s?
Let it seep in
The first step of coping is acknowledging the problem. Take time to process the change. Address your feelings and take charge of what you can do.
Know your goals
Living well can mean different things. To get what you want, you need to know how you want to live. Set small definable goals and work on them one at a time. Reward yourself for commitment.
Communication is the key to well-being
Talking about one’s condition can be hard, however, it is important for allaying anxiety, forging bonds, and building a community. Opening up to others can help you get the support needed. Support groups are also useful.
Trust the experts
Working with experts improves treatment. A neurologist who specializes in the brain and nervous system can be helpful. Movement disorder specialists are neurologists with specialized training in Parkinson’s. They help personalize the treatment to individuals' needs. Other PD specialists like social workers, occupational therapists, physical therapists, and speech-language pathologists can also be consulted. Palliative care is another effective approach wherein a team of specialists is created to cater to the physical, emotional, social, and spiritual needs of the patient. Counselors can help deal with depression and anxiety.
Eat right
A balanced diet can improve health and relieve non-motor symptoms like constipation. Fibrous food and a Mediterranean diet with plant-based staples, healthy fats, and less meat are especially effective.
Tackle that insomnia
Adequate rest is important. Sleep disturbances can be ameliorated by making some simple changes. The bedroom should be kept cool, dark, and quiet and heavy meals, alcohol and other fluids should be avoided before bedtime. Using satin sheets that allow you to move around easily can help reduce pain and stiffness. Insomnia can be tackled by calming routines like meditation, warm baths, etc. In case of severe trouble, consulting a sleep specialist is effective.
Ready, set, exercise
Exercise can be a valuable remedy for motor, cognitive and emotional difficulties. At least 2.5 hours of exercise per week is recommended. Resistance training, stretching exercises, aerobics, etc can be used.
Prevent falls
Loss of balance and falls are common in Parkinson’s. They can be prevented by consulting a doctor or a physical therapist. The house can also be proofed by minimizing clutter, installing grab bars and rails, using non-skid mats and rugs.
Learn to relax
Stress can worsen symptoms. Deep breathing exercises, yoga or tai chi programs can help in relaxation. Listening to music is also an effective stress buster.
Concluding note
Living with Parkinson’s is stormy. It often seems like you are seeking a lost thread in the chaos. But there is harmony in every chaos and light in every darkness. You just need to find it. To have or to not have Parkinson’s is not a choice. But whether the disease defines you or you define it depends on yourself!
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