In our society, acute or chronic illness is often managed through medication. Many of us have come to rely on the idea “there’s a pill for that.” I recently took a survey on self-efficacy and chronic disease. The last question really struck home. “Medications aside, how confident are you that you can do things to reduce how much your chronic disease affects your everyday life?”
With Parkinson’s, medications typically just mask the symptoms, and the symptoms are still progressing to the point where we may need more meds. Almost everything else, including exercise, is based on the patient actively doing something mentally and physically.
Positive thinking and quality of life
Studies have demonstrated that positive thinking improves quality of life and has a therapeutic role in managing chronic disease. In Parkinson’s, positive thinking can be a key element in the patient going beyond just depending on medication.1,2
Creating and maintaining a positive attitude is an initial first step. You can’t wish yourself into a positive attitude. Unlike taking a pill, work is required.
Examples of negative thinking
Negative thinking, however, is a barrier to having a positive attitude. Therefore, eliminating or minimizing negative or unhelpful thinking is a key element in having a positive attitude. Negative thinking is a also major element in depression and apathy. During the course of a day, how many of us have had thoughts like:
“If I’m not perfect, I’ve failed. Either I do it right or I won’t do it at all.” (All or nothing thinking)
“That doesn’t count.” (Discounting good things that have happened)
“This is my fault or this is your fault.” Blaming yourself or someone else when it’s a gray matter. (Personalization)
“I’m a loser … I’m a Parkie … They are useless.” (Labeling)
“Nothing good ever happens … everything is crap.” (Over-generalizing)
Other negative behaviors
In addition to the thoughts above, how many of us have done things like:
Magnify situations by blowing them out of proportion
Use critical words, like “should,” “ought,” or “must,” causing feelings of guilt or failure
Jump to conclusions, imagine we know what others think, or that we can predict the future
Notice our failures but cannot see our successes.
My process to eliminate unhelpful thoughts
Through research and therapy, I’ve found a process that helps me minimize or eliminate my negativity or unhelpful thinking.
First, I keep a log of the types of negative thinking I use in a day. For example, today I used labeling and all or nothing.
Next, I take those examples and restate them. For example, “I’m a Parkie,” becomes “I have Parkinson’s.” Clearly, you are more than a person with Parkinson’s. “I can’t do exercise because I can’t do it perfectly,” becomes “I haven’t exercised in a while so improvements come with repetition and time.”
In real time or immediately after, I rephrase my negative thoughts in a positive way. Finally, I repeat and repeat.
My result
Over the span of several weeks, I noticed a marked decrease in my negative thinking. Less negative thinking, over the course of a month or more, made me feel more positive. There have been slip ups and reversion into old habits. When they occur, I get out the log sheet and get back to the basics for a few days.
Find the method that works for you. You can feel better about your situation or yourself by becoming a more positive person.
One of my clients has an issue with dizziness so I decided to research dizziness and Parkinson’s. This has been going on for some time and is a real non-motor symptom that we have to deal with as it usually triggers other non-motor symptoms, the most common is anxiety. We have a good overall exercise routine to manage the motor symptoms of PD. Exercise is the best counter-stress activity, but anxiety is a by-product of dizziness.
We talk about dizziness as a symptom and have ruled out orthostatic hypotension which is caused by a dip in blood pressure. OH is feeling dizzy upon standing which is a common symptom of Parkinson’s disease. If you are experiencing dizziness when standing up this may be the cause so make sure your Dr. Is aware.
However, another cause of dizziness can be due to Parkinson’s itself or a side effect of medications, talk to your doctor about adjusting your medications. Recently, my client, had his medications adjusted and the dizziness has lessened, so it may be Parkinson’s or the side effects of medications. So there are many possible causes of dizziness in people with Parkinson’s disease, including the side effect of medications. The medications that can cause side effects of dizziness are antidepressants and pain relief medications.
“In real clinical settings, we frequently observe that patients with Parkinson’s disease complain of dizziness.” ” “Feelings of dizziness may include faintness, lightheadedness, vertigo, and imbalance, and this is prevalent among 48%-68% of patients with Parkinson’s. Dizziness is a well-known side effect of dopaminergic medications used for Parkinson’s such as levodopa and dopamine agonists (substances that mimic the action of dopamine in the brain). These medications can lead to a type of low blood pressure when a person stands up (orthostatic hypotension), causing lightheadedness,” the researchers wrote.
One thing to consider is Meniere’s disease, which is an inner ear problem that can cause dizzy spells, also called vertigo, and hearing loss. Most of the time, Meniere’s disease affects only one ear. Meniere’s disease is an inner ear problem that can cause dizzy spells, also called vertigo, and hearing loss. Most of the time, Meniere’s disease affects only one ear. Meniere’s disease can happen at any age.
What is the difference between dizziness and vertigo? People often use these words interchangeably, but they are different. Dizziness is the feeling of being lightheaded, foggy, or unsteady. Vertigo which is less common than dizziness is an overall spinning sensation.
What is the takeaway, my client is probably having side effects from medications. Which is good, OH would be another issue to address. For you, if you are having bouts of dizziness start with the blood pressure, look at your medications, you may find it says “causes dizziness.” And drink water, being dehydrated is a major cause of dizziness.
Vitamins play an essential role in everyone’s everyday lives. They are critical for each of us to develop and function. You can get vitamins from food and supplements, as well as from the sun, as with vitamin D.
When any one of us is deficient in vitamins, our normal functioning can be disrupted and the side effects can be dramatic. There is even evidence to suggest that some vitamin deficiencies can increase your risk of developing Parkinson’s disease.
While many vitamins are good for your health, here we discuss the two that have been shown most strongly to be connected to Parkinson’s: vitamin D and vitamin B12.
Vitamin D Deficiency and Your Risk for Parkinson’s Disease
Vitamin D is an essential nutrient that you get from the foods you eat, such as milk. When the sun shines on your skin, it stimulates the production of vitamin D within your body.
Vitamin D is essential for:
Regulating calcium absorption in your gut
Maintaining calcium concentrations (this enables bone mineralization, which leads to strong bones)
Preventing involuntary muscle contraction (cramps and spasms)
Vitamin D deficiencies are frequently linked to rickets in children and osteomalacia in adults. Both of these conditions are related to the softening of bones. However, vitamin D deficiency has also been linked to Parkinson’s disease. One 29-year-long study of more than 3,000 Finnish men and women (ages 50 to 79) showed just such a connection. At the start of the study, no participants had Parkinson’s. But by the study’s end in 2007, participants with higher vitamin D concentrations in their blood serum were less likely to have developed Parkinson’s disease.
Scientists have thought that the long-term loss of dopamine-producing neurons in a particular area of our brains (the substantia nigra) may lead to Parkinson’s. That area is rich in vitamin D receptors (special proteins that only vitamin D will activate), which are located on the very neurons that produce dopamine. When your body doesn’t produce enough dopamine, your motor skills are affected. In people with Parkinson’s disease, that can show up as tremors, general incoordination, and more.
Another factor that might connect your level of vitamin D with your risk for developing Parkinson’s disease is the sun. That’s because your level of sun exposure is directly related to your body’s production of vitamin D. Scientists have made the correlation with Parkinson’s by showing how prevalent the disease is in populations based on their distance from the equator — where the Earth gets the most intense and direct exposure to the sun.
More research is needed to establish if low vitamin D levels actually cause Parkinson’s disease. But there is a clear correlation between vitamin D and Parkinson’s risk that deserves further exploration.
Vitamin B12 Deficiency and Parkinson’s Disease Risk
Vitamin B12 is a critical nutrient you get mostly from foods such as fish, meat, and eggs. It is important for healthy red blood cell formation and in the creation of new genetic materials. It also plays an important role in your nervous system — it is critical for how your brain and spinal cord develop and function. Vitamin B12 also plays a role in the creation of the fatty layer (myelin) on brain cells, a layer that, when healthy, increases how quickly your impulses flow through your nerves.
In one report that looked at the findings of 10 other studies, vitamin B12 levels in people with Parkinson’s were noted to be lower than the levels in people who didn’t have the disease. Many researchers now believe that targeting vitamin B12 may be a potential therapeutic option for Parkinson’s.
While vitamin D may be linked (via dopamine) to motor skill-related symptoms in people with Parkinson’s, vitamin B12 could have its own impact on the disease. According to some researchers, deficiencies in vitamin B12 may be related to both motor and nonmotor symptoms in people with Parkinson’s. That’s because acetylcholine, which depends on vitamin B12 to work, affects how your cells contract, and that contraction plays a role in both your cognitive and physical processes. If you are deficient in vitamin B12, therefore, you could be deficient in acetylcholine, too.
There are still more connections between vitamin B12 and Parkinson’s disease. One is via a particular mutated gene that’s known to cause the majority of inherited (and some sporadic) forms of Parkinson’s. Called leucine-rich repeat kinase 2 (LRRK2), it, too, is regulated by vitamin B12. In one important study, scientists reported that the relationship between vitamin B12 and the gene can be used to develop new LRRK2-based Parkinon’s drugs.
Increasing Your Daily Intake of Vitamins
Although more research is still needed to determine if bulking up on vitamins D and B12 can help prevent or treat Parkinson’s disease, there are several ways you can make sure you are consuming these essential nutrients. The main ways to get them are through food and supplements.
Vitamins in Foods
Most of our essential nutrients — vitamins D and B12 included — can be obtained from the foods we eat.
Some foods — like some cereals — are fortified with vitamin D to increase their nutritional value. You can also get vitamin D by consuming:
Milk
Fish (particularly fish liver oil)
Soy, almond, and oat milks
Mushrooms
Eggs
Cheese
Vitamin B12 is an important part of a healthy diet and may also help with Parkinson’s. Foods can also be fortified with vitamin B12. Foods naturally rich in vitamin B12 include:
Fish
Meat
Poultry
Eggs
Dairy products
Vitamin Supplements
Over-the-counter supplements are another option for getting more nutrients into your daily routine, and that includes people with Parkinson’s disease. Two caveats: Some supplements can interfere with your medications. So before you take any supplement, consult your heath care team. Secondly, the U.S. Food and Drug Administration (FDA) does not strictly regulate supplements, so know that the quality of your vitamins is not guaranteed.
Building a Community
On MyParkinsonsTeam, the social network for people with Parkinson’s disease and their loved ones, more than 90,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease.
Parkinson’s disease can sometimes prompt changes in behavior, which may include impulsivity, apathy, and irritability.
Behavioral changes can be treated with a combination of lifestyle changes and interventions from your health care provider.
Cognitive impairment and dementia may also affect people living with Parkinson’s.
People often think of Parkinson’s disease as simply a movement disorder, but it also has nonmotor symptoms. Many people living with Parkinson’s display behaviors that are troubling to the person and their family. These behavioral changes can be a symptom of Parkinson’s, or they may be a side effect of medication.
Members of MyParkinsonsTeam have described an array of experiences with behavioral changes. Some people with Parkinson’s disease struggle with anger or impulsive behavior that can impact their friends and family members. Others have hallucinations that cause them to act in ways that don’t make sense to their caregivers. In addition, attention and motivation problems are common and make everyday tasks harder. These behavioral changes can sometimes impact quality of life and put people with Parkinson’s in danger.
Fortunately, there are treatments that can help. With careful monitoring and support from loved ones, people living with Parkinson’s disease can manage these behavior symptoms and sometimes even use the symptoms to their advantage.
Impulsivity and Obsessive Behaviors in Parkinson’s Disease
Among the most startling changes for people with Parkinson’s are impulse control disorders and obsessive behaviors. Some people start gambling or overspending, for example. One MyParkinsonsTeam member stayed up all night shopping and bought 10 surfboards in a short amount of time.
Many members of MyParkinsonsTeam have also found that their sex drive skyrocketed. One member said their increasing sexual needs were too much for their partner and strained their marriage. Another member, however, was happy with their “wonderful postmenopausal sexual awakening.”
Some behavioral changes are similar to obsessive-compulsive disorder (OCD) symptoms and can cause real problems for people living with Parkinson’s. For example, a member said their partner started taking things apart and putting them back together, which became a problem when it led to $3,500 in repair bills. Other times, the obsessive behaviors can be productive, like renewed artistic creativity. One member began making wooden flags to sell and donated some earnings to organizations for veterans.
How Common Are Impulsivity and Obsessive Behaviors in Parkinson’s?
About 14 percent of people living with Parkinson’s experience obsessive and impulsive behaviors.Impulse control disorders and symptoms of OCD tend to show up after a person begins treatment with dopamine agonist medications such as ropinirole (Requip), apomorphine (Apokyn), and pramipexole dihydrochloride (Mirapex). Impulsive behaviors are especially common in people who are taking both a dopamine agonist and levodopa/carbidopa.
What Causes Impulsivity and Obsessive Behaviors in Parkinson’s?
These side effects likely develop because of how Parkinson’s medications affect dopamine in the brain. Parkinson’s disease damages dopaminergic neurons — cells that produce dopamine. Sometimes called the “pleasure chemical,” dopamine is a neurotransmitter produced in the brain. It is important for movement and the reward system that helps control motivation.
Dopamine agonist drugs act like dopamine in the brain, and the body turns levodopa into dopamine. The increased activity of dopamine in the brain helps with motor dysfunction. However, it also boosts the reward system, which may cause obsessive symptoms and impulsive behaviors in Parkinson’s. The use of dopamine agonists such as ropinirole has been linked to increased risk-taking behavior and gambling.
How Are Impulsivity and Obsessive Behaviors in Parkinson’s Treated?
Decreasing or removing treatment with the dopamine agonist and switching to levodopa extended-release often helps to alleviate these symptoms. Support groups for impulsive behaviors such as gambling may also help.
Apathy in Parkinson’s
People experiencing feelings of apathy lose interest in things they previously enjoyed and may have blunted reactions to what would otherwise be moments of joy, sadness, or anger. Experiencing apathy can be distressing for the person living with Parkinson’s and their loved ones.
MyParkinsonsTeam members have shared some of their experiences with Parkinson’s-related apathy. One member said, “I find myself to be apathetic these last few months. Not in the sense of unmotivated or bored. It’s more like feeling numb. Little do I care if things go wrong. Likewise, I fail to muster happiness when wonderful things happen, like the birth of a baby. I used to feel both joy and sorrow quite intensely.” Another member responded saying that they could barely muster enthusiasm when their daughter announced that they were pregnant.
How Common Is Apathy in Parkinson’s Disease?
About 40 percent of people living with Parkinson’s disease will experience apathy at some point in the course of disease progression. Some people with Parkinson’s begin losing interest in activities early in progression before they are initially diagnosed with the disease.
What Causes Apathy in Parkinson’s?
The root cause of apathy in Parkinson’s is unclear. Apathy is a common symptom of depression, and 35 percent of people with Parkinson’s experience depression or depressionlike symptoms. However, many people with Parkinson’s who don’t have depression do experience apathy, so there isn’t a clear cause-and-effect relationship. Apathy may be due to changes in reward centers in the brain.
How Is Apathy in Parkinson’s Treated?
One small study showed that treatment with the dopamine agonist piribedil may help apathy. If a person is experiencing other depressive symptoms, treating their depression with psychotherapy and medication may help.
Panic Attacks and Irritability in Parkinson’s Disease
Anxiety during Parkinson’s can contribute to irritability and outbursts that can hurt people with Parkinson’s and their loved ones. A MyParkinsonsTeam member said they developed new intense jealousy and panic attacks when they couldn’t reach their partner by phone. Another member who is caring for a partner with Parkinson’s said their partner’s irritability has led them to fight nearly every day. The increased irritability compounds the stress that people with Parkinson’s are feeling, and it can exacerbate other behavioral symptoms and interpersonal conflict.
How Common Are Panic Attacks and Irritability in Parkinson’s?
Between 20 percent and 50 percent of people with Parkinson’s disease develop issues with anxiety. Anxiety issues tend to begin early in disease progression and may worsen over time. Scientists aren’t sure whether panic and irritability are caused directly by Parkinson’s disease or by comorbid mood disorders like depression and anxiety disorder.
How Are Panic Attacks and Irritability in Parkinson’s Treated?
Some MyParkinsonsTeam members recommended lifestyle changes like living separately or stepping away when an argument escalates. For some people, antianxiety medication like benzodiazepines can help with these symptoms, as can cognitive behavioral therapy.
Hallucinations and Psychosis in Parkinson’s Disease
Among the most troubling neuropsychiatric symptoms in Parkinson’s disease are hallucinations and psychosis. People experiencing these hallucinations may see things that aren’t there, hear voices, or feel an unseen presence. One MyParkinsonsTeam member said that “shadows become demons and spirits.” Another member’s husband began having delusions that the couple had invited people over when they had not even spoken to them.
How Common Are Hallucinations and Psychosis in Parkinson’s?
The prevalence of hallucinations depends on the type. Visual hallucinations occur in 22 percent to 38 percent of people with Parkinson’s, according to findings in the Journal of Korean Medical Science. Meanwhile, auditory hallucinations occur in up to 22 percent of cases.
When Can Hallucinations and Psychosis Begin in Parkinson’s?
Hallucinations can begin in the early or later stages of the disease and may increase with severity over time. People experiencing hallucinations prior to 5.5 years in the course of disease typically have more pronounced early motor disturbances and are on high doses of medications. Hallucinations and psychosis that develop in the later phases tend to be associated with cognitive decline.
What Causes Hallucinations and Psychosis in Parkinson’s?
The source of psychosis isn’t entirely understood. However, changes to important brain structures could be partially responsible. Some cases of psychosis may be caused by long-term treatment with dopaminergic medication. Deep brain stimulation surgery may also worsen existing psychotic symptoms in some people.
How Are Hallucinations and Psychosis in Parkinson’s Treated?
Treatment for Parkinson’s-related psychosis can involve adding antipsychotic medication or reducing the dose of dopaminergic drugs. Regardless, people experiencing these symptoms need careful attention and support from their loved ones and health care providers to prevent them from harming themselves.
Cognitive Impairment in Parkinson’s Disease
Cognitive impairment and dementia are common in progressive neurological conditions such as Parkinson’s and Alzheimer’s disease. Unlike cognitive decline in Alzheimer’s disease, however, people living with Parkinson’s experience issues with planning, attention, and motivation earlier than problems with memory.
A few MyParkinsonsTeam members have talked about forgetting the day of the week and how surprised they were when they checked the calendar. Others have mentioned losing important items like keys and phones.
How Common Is Cognitive Impairment in Parkinson’s?
Between 18 percent and 41 percent of people with Parkinson’s develop dementia or some form of cognitive decline, according to a study in Dialogues in Clinical Neuroscience. In another study, researchers reported that up to 19 percent of people living with Parkinson’s already had mild cognitive impairment at the time of diagnosis. However, it can take as long as 20 years for this impairment to advance to dementia.
What Causes Cognitive Impairment in Parkinson’s?
The root cause of impaired cognition in Parkinson’s is unclear. It may be caused by the neurology of the disease. Scientists have found that sleep issues are common in Parkinson’s and are associated with cognitive decline.
Your doctor may recommend regular neuropsychiatric evaluations to see if cognitive symptoms are worsening.
Tips for Managing Behavioral Changes in Parkinson’s
Guidance from medical professionals is crucial, but advice from other people with Parkinson’s can make the difference between living and thriving. Following are suggestions from MyParkinsonsTeam members to manage the behavioral changes in Parkinson’s disease.
Find healthy outlets to channel obsessive behaviors, such as art, woodworking, music, or video games.
Educate yourself and your loved ones so that others can help you identify and manage behavioral symptoms and mood changes.
Take your medications on time and with a meal or snack if advised. Make sure you take your medication as prescribed, and tell your medical team if you have any side effects.
If you’re a caregiver or loved one of a person with Parkinson’s, be patient and pick your battles. Step away, if possible, to clear your head before engaging.
If behavioral or personality changes make living arrangements with your spouse too tricky, consider separate living arrangements.
If you have Parkinson’s, be kind to yourself. If your loved one has it, give them grace while also taking care of your needs and well-being.
It’s tough to go it alone, so find in-person and online support groups. MyParkinsonsTeam is an excellent place to start.
MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 89,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s disease
In 1817 James Parkinson witnessed individuals with Parkinson’s fall. It is predictable that if you have Parkinson’s you are most likely going to fall. The concern is falling will change the quality of life. Falls affect mobility and cause minor cuts, bruises, fractures, head trauma, or even death. The fear of falling is the major fear of all my Parkinson’s clients.
The motor symptoms, rigidity (stiffness) bradykinesia (slowness of movement) stooping posture all are contributors to falls and are part of Parkinson’s. As the disease progresses the posture can deteriorate with a pronounced forward lean and shuffling gate. This projects the center of gravity (located just below the navel) outside the base of support. If you place the feet parallel apart, standing straight and the shoulders square this is your base of support. Now if the center of balance is outside this base of support, simple movements like standing, walking, and bending now can cause a balance issue with the probability of falling increasing. Therefore it is imperative that an exercise program be developed to strengthen muscles and work on balance for fall prevention.
Every day before I begin with my clients I ask two questions: How many glasses of water have you drunk and how much sleep did you get? These two factors are the major issues with having a productive day as fatigue and exhaustion are most common in PD. Then I’ll ask is there are any things I need to know that would cause you to stress or be out of your normal routine. These emotional swings and reactions to life are factors that have a major impact on the physical abilities of one with PD and affect their balance.
The other thing I do is on-going monitoring/asking my clients or care partner about the medications. This is especially important when prescriptions are changed, medications added or dosage is increased or decreased. This can cause drug interactions, dizziness, and confusion increasing the probability of falls. I’ve had this happen on more than one occasion with my clients. Your Doctor is trying to find the right combination to give maximum mobility and stability. When these medications provide the base foundation for mobility/stability then an exercise program on balance to reduce the risk of falls is maximized. Remember your Parkinson’s disease medication regimen is an ongoing process of assessment and adjustment. It is very important to give the Doctor specific feedback on the reaction to medications and the exercise programs you are participating in.
An additional element to take into account, which we have a tendency to overlook, as a danger to falls is infections. Bloodstream, urinary and respiratory infections are the most frequent contributors associated with infection-related falls. These tend to be typical occurrences within PD. We don’t acknowledge these as risks with regard to falls however infection may cause reduced blood pressure making an individual light-headed or even confused. So be aware.
It is important for you to be as healthy as possible to participate in life as well as day-to-day activities. Exercise has to be a vital part of your everyday routine.
The exercise program must have four components: strength, flexibility/stretching, balance, and forced aerobics (walking, bicycling, and swimming) these will lessen the actual danger associated with falls. Research on exercise and PD is actually demonstrating that an exercise regime might be beneficial to neuroprotective or delaying or even reversing the progression of PD.
Understanding the Difference Between Dyskinesia, OFF time, and Tremor in Parkinson’s Disease
Although both dyskinesia and OFF episodes are common aspects of living with Parkinson’s disease and become more prevalent later in the disease course. Levodopa-induced dyskinesia often involves involuntary muscle movements such as twitches, jerks, twisting and writhing. While “OFF” time occurs when Levodopa is wearing off and the patient has less control of their movements. These are referred to mDYSotor fluctuations.
While differentiating between dyskinesia and OFF episodes can be challenging, this article aims to highlight the distinguishing factors of each and discuss the different methods in which they can be managed.
Dyskinesia is an involuntary muscle movement and irregular in motion. Patients may experience writhing or wriggling in their arms or feet, rocking or head bobbing, or swaying. Dyskinesia ranges in severity and may affect only part of the body, such as one leg or arm, or the whole body. Dyskinesia can also affect the mouth and face (lip pursing movements). For some patients it is a minor annoyance. For others it causes embarrassment and may interfere with daily activities such as feeding, dressing, writing, walking, and balance. Dyskinesia usually occurs when the level of levodopa is highest in a patient. A patient may experience kicking leg dyskinesia when their medications start to kick-in and wear-off, but this is very uncommon. Dyskinesia often increases while a patient is anxious or stressed.
Unlike dyskinesia, OFF time refers to when the level of levodopa is lowest in a patient and a PD medications are not working well. For patients, OFF symptoms may include an increase in tremor (rhythmic, regular motion of hands, feet, or jaw), increase in clumsiness or slowness of movement, more shuffling when walking, and muscle cramping or stiffness.
Patients also may experience a number of other non-motor OFF symptoms such as anxiety, depression, apathy, sweating, urinary urgency, or pain. Similar to dyskinesia, OFF episodes range in severity. For some patients, these episodes are a minor annoyance. For others, OFF time can cause embarrassment, interfere with daily activities, or cause walking and balance issues. Like dyskinesia, OFF episodes may be more frequent and more severe when a patient is stressed or anxious
A tremor in Parkinson’s disease can appear in two ways: Resting and Action tremor. Restring Tremor refers to when your body is still and relaxed, for example when lying in bed. The most common manifestation of this type of tremor is called “pill-rolling” tremor, which typically looks like you are trying to roll a pill between the thumb and index finger. An action tremor usually occurs when the patient is in action, like trying to hold an object or drink from a cup. Typically, a tremor starts in the hand before expanding through the rest of the arm. Occasionally, tremor may start in the foot, before spreading throughout that same leg. After many years, tremor may spread and start to affect the other side of the body. For some patients, tremor may be the first noticeable symptom to manifest, but of course this varies from person to person and it is not possible to predict who will develop tremor.
Like dyskinesia and OFF time, tremor can worsen with an increased level of stress and anxiety. There is no cure for tremor; however, there are ways to manage it through Parkinson’s medications, stress relief and device aided therapies
Finding the right doctor to manage Parkinson’s disease (PD) can take time. Each person’s Parkinson’s experience is unique and what they look for in a healthcare provider relationship can vary.
To understand more about what people with PD seek in these relationships, we asked our patient leaders, “What are some of the best qualities or traits to look for in a doctor or specialist?” Here is what they shared.
Someone who is straightforward
“I want a straight-shooting professional who is encouraging, knowledgeable, and relatable. My doctor and I have been together since day one. … I really like that he listens and cares. I also like that he spent his life working to be the best neurologist he can be.” – Dan Glass
Clear communication
“Communication and a good listener are at the top of my list. I ask how they share information. Will all visit outcomes be shared in writing? How do they prefer being contacted? How do they determine what medications to prescribe? If I have a question about side effects or adverse reactions how will they be addressed?
Compassion and a good rapport are an absolute must. Will there be adequate time to have a thorough examination and time for discussion? How will they stay in communication with my many other medical specialists?” – Thea DeStephano
Takes an integrated approach
“I look for someone who is knowledgeable, active in the field, and is up to date with new medications and nonmedication treatment options. They have been acknowledged as well-versed in Parkinson’s, whether that is by other patients, studies the doctor published, or neurological groups with which they work.
… Another good quality is the willingness to look at an integrated approach to the patient’s care. It is expected that a doctor will discuss and probably prescribe medications. I think it is also important for the doctor to discuss the roles of exercise, nutrition, and emotional health.” – Lorraine Wilson
Specialized in Parkinson’s
“My number one criteria would be a neurologist who specializes in treating Parkinson’s, or better yet, a movement disorder specialist in one of the Parkinson’s Centers of Excellence. … I would add someone who is willing to spend the time necessary to answer all your questions. Parkinson’s is not a disease that can be handled in a 15-minute appointment.
Next would be empathy followed by the ability to explain diagnoses and courses of treatment in language you can understand. Parkinson’s treatment often involves other medical specialists, and your doctor should be a team leader in your treatment.” – Phil Horton
Mutual respect
“If you and your neurologist can’t communicate and agree upon a plan to address how to navigate your current symptoms, then you both need to have a heart-to-heart talk or part ways.
Communication goes both ways. Make sure that you really listen to your doctor’s comments and that they are hearing what you want to express. The more knowledgeable you prove to be about your condition, the greater your bond with your doctor should be. Mutual respect makes doctor visits much less stressful.” – Karl Robb
They see me as a person
“I look for a doctor who looks at me not as a Parkinson’s patient, but a person with Parkinson’s. I look for a doctor who stays up to date on the most recent research and procedures. I want a doctor who is listening to my concerns even when he’s typing my info into my chart.
I am pleased when a doctor takes a holistic approach. One who considers the impact of my other debilitating physical conditions on Parkinson’s and vice versa. Finally, they must not be rushed during my appointment. It is most uncomfortable to feel like one is ‘cattle’ being herded through the examining room.” – Pat LaPointe
Someone who is competent
“Passion, competence, compassion, and the ability to communicate are what I look for in a physician. Passion means the doctor loves helping others and focuses on improving every aspect of the profession from patient care to medical and scientific knowledge.
By competence I mean mastery of the knowledge or seeking out the knowledge needed for treating the condition. For Parkinson’s disease, that means a neurologist who is a movement disorder specialist. … Compassion for the patient and those the patient cares about.
Finally, I think communication skills are necessary for a doctor to truly converse with and understand the patient.” – Robert Hunt
Demonstrates compassion
“Someone who shows compassion for their patients along with a genuine desire to provide the best possible care they can.
This can be demonstrated in any number of ways, from how I am greeted in the doctor’s office (I once had a doctor that saw it as his responsibility to go to the waiting room to get their patient as opposed to letting the nurse do it as is the norm), to how much time is spent during the visit getting to know me and my health concerns. When I visit a doctor, I don’t want to feel rushed or made to feel like I’ve asked too many questions.” – John Bennett
They are empathetic
“My dad has been vetting doctors for long enough to know how to find the right specialists all by himself. But if I were looking for the best possible options for him, I’d want to know that his doctor is honest, smart, and that they have a good bedside manner. … My dad benefits from the kind of bluntness that can’t be overlooked. But he’s also sensitive, and needs empathy.
At one point, I went to a neurology appointment with my dad. His doctor gave him the blunt advice that he needs. But she delivered it with a coldness that felt rather insensitive to me. In the future, I wish his doctors would use questions to address some of the issues at hand instead of accusations or claims.” – Mary Beth
Meets your specific criteria
“Ask for a referral from others that already have gone to local neurology practices. Ask them why or why not they would recommend the doctor or group. Make sure this doctor is under your insurance plan or takes Medicare (whichever applies to your situation).
Location makes a difference. Is this doctor close by for your convenience? Are they affiliated with the same hospital as other specialists that you use? Does this group offer other benefits to your loved one? … Look for a doctor that has both the medical knowledge you are seeking as well as compassionate communication skills.
My father has been going to the same neurology group for several years. … The doctor is the not the best choice, in my opinion, but she has the history with my father and is in a group that meets most of the criteria I listed above. We have added another neurologist from the group who specializes in dementia. The combined efforts of the two doctors best fit my father’s current needs.” – Suzanne Troy
I am sure that all of us who live with this illness have experienced times of extreme hardship. These experiences in turn have made us wonder how and if it was still possible to enjoy life, especially when even the simplest of tasks seem daunting.
Find an anchor
I must say that as a person used to being always in control of living with an illness, which appears to be as whimsical as the breeze, can be maddening at times. If we’re not careful, it can lead us to abandon all hope and let ourselves be dragged to and from without will or purpose.
Trust me when I say, there have been times I questioned everything. On the flip side, after devoting my life to the care of others with same illness, I also know that there is a better life for each of us if we learn to anchor ourselves in our friends, family, and our believes… so we are not blown away by the breeze.
Easier said than done
Of course, this is easier said than done. Sometimes we just don’t have enough strength to even brush our teeth much less deal with the barrage of never-ending troubles like spilling shampoo all over the shower because our hands are too shaky or dystonic; so you find yourself slipping and sliding in the suds.
If it were milk, all the churning would surely produce some sweet creamy butter! Alas, all we get is a split second of joy when we think we mastered our balance right before we fall.
Mornings are tough
I, too, hate those days when I wake up staggering like a tin man in desperate need of oil to be able to take one step forward much less do any movement with any semblance of grace like opening the medicine bottles to feel well again.
Only to watch said pills go flying in all directions as you give thanks that no toddlers are around. Although, there was this one time while visiting the Grand Canyon that my pills went flying out of my hands and rolled down the hill.
As I tried to pick them up, I was outrun by a moose which happened to be strolling by… I watched in disbelief as he swallowed a few, hoping he would not plunge himself down the cliff thinking he could fly from wild hallucinations caused by my dopamine.
Try different gadgets
Now when traveling I keep all my medications in a large zip bag so if they fall they will stay contained in one place. If need, I use gadgets to help put on clothes, wipe my backside, crack eggs, and cook.
Of course there is always a chance to have food prepared and delivered or get a loving hand from significant other.
As for my early am stiffness, I take larger dose at night before bed to avoid making a mess in the am with pills and shampoo.
Prioritize yourself
According to second law of thermodynamics everything tends towards entropy (natural disorder), a word which has come to exemplify my life more often than I care to I am afraid since living with PD, I don’t particularly enjoy picking up broken dishes, mopping egg whites from the floor, or fishing for eggshells when making scrambled eggs.
Neither do you, I’m sure. So in order to maintain order and balance in our lives, we must assess our daily capabilities to minimize the internal energy needed to accomplish our tasks.
If tired, allow yourself time to rest and sleep. Listen to your body. Rest this one thing that maximizes my energy and minimizes my daily distress of battling to put on my underwear or remove my pjs to get the morning started.
Adjusting medications
Plus, I make sure I don’t skip any doses and take my medicines on a regular schedule. I make sure I get at least eight hours of sleep a day by taking sleeping pills if needed and avoiding mind activation activities, like being on social media, in the middle of the night.
So go ahead cry if you must, till there are no more tears left inside. Then call on a friend, pick yourself up, dust yourself off, and start loving yourself. The future belongs to those who persevere.Sign up for emails from ParkinsonsDisease.net:Subscribe
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The neat thing about being a part of a community is that members can react to one another’s ideas to expand or personalize on the truths that we share. For instance, Mary Beth Skylis recently wrote an article entitled, “I Don’t Identify as Disabled,” where she found it difficult to accept her “label” as relegating her to “disabled.” I immediately felt drawn to share my own ideas.
Looking at this as a former English teacher, we see the prefix “dis” means not or none. Frankly, they’re a lot of things that Parkinson’s Dan is still able to do. In fact, I bet I can kick most people’s butts at the New York Times Spelling Bee game. In fact, I’m probably better at it at 5 AM when I come back from going to the bathroom in the middle of the night than the average person is when they are wide awake.
Can I paint like Van Gogh, do home improvement like Bob Villa, or juggle bowling pins like a circus clown? Uh, no. Then again, can people who are “abled” do these things?
Caught up in perfection
The phrase “differently-abled” may sound politically correct, but there’s a lot to be said for it. If you’ve never watched the video “Animal School,” this is a good introduction to accessibility and abilities.
For instance, if we judge my dog Sparky for his ability to fly, he comes up far short of an eagle’s ability to soar majestically. However, if we judge an eagle based on its ability to fixate intently on playing with squeaky toys, then Sparky gets to do the celebration dance.
People are so caught up doing everything perfectly that they lose sight of what they can do well. Maybe we can’t still do everything with Parkinson’s, but we can still do a lot well, too.
Leveling the playing field
At my college, we changed the name of “Disability Services” to “Accessibility Services.” To a person who is functioning “normally” (whatever that means), this might sound PC, but to a person with dyslexia, ADHD, or deafness, it shows that we recognize these people can do the same things as others if we tweak the environment.
In life, we all have different learning styles. Be this listening, watching, or performing skills to “get” how to learn – we’re all unique in how we learn. In education, this is covered under Universal Design for Learning.
For instance, maybe you like reading a textbook to learn while I like watching YouTube videos before I try to build a website. If we can both do the task, what difference does it make how we got there? If we eliminate one option and only certain people have grasped the lesson when it is over, then we’ve created a false sense of “disability.”
In leveling the playing field, a person with a wheelchair is able to travel a sidewalk since there is a ramp present. One small change negates the obstacle and provides the access. Maybe accepting our Parkinson’s condition means taking the help to stay steady.
The connection to Parkinson’s
Having Parkinson’s isn’t the same as struggling with polynomials in algebra. But, in the basic sense, both cases involve our brains trying to process a problem that is thrown at it.
For example, I may be trying to think of the word that conveys my response. If I can’t approximate this, I might get something close instead. For instance, “plant life” might come out “plantation.” Sometimes, just like I saw in the case of an English Language Learner, there is a logical connection to try to express the idea, but the chosen words are not precise.
Understanding the nature of the error helps a teacher to redirect not having the ability yet to mastering the skill in the future. Thus, the more people know about our lives and Parkinson’s, the better we all function together.
Re-teaching ourselves
With Parkinson’s, we may draw a blank or “freeze” up when our body is trying to get our brain to do something. Maybe this will come out like a hiccup or a pause. Maybe it will come out in silence that might unfortunately cause embarrassment. However, by being empathetic to people’s challenges, we can ease their concerns of how they will be perceived. Yes, sometimes we have to abandon the right to be a selfish jerk to respect other people’s circumstances.
In these cases, it might be like when Pennsylvania Senator John Fetterman provided a disclaimer for his post-stroke speaking ability. Addressing the elephant in the room, he told his audience that he may slur words, but that he was getting better. He and his doctors felt he was getting better, but that he was still recovering. Does this make him disabled? A majority of Pennsylvania voters don’t believe so.1
My physical abilities have changed
As for the physical abilities that Parkinson’s disease takes from us, we face the decision of how we will look at ourselves. I have a National Parks pass, which is issued to people with disabilities for free.
The first time I used it in 2018, I was given a disability placard for the car. When we used it, I didn’t feel comfortable with the psychological baggage that went with it. To this day, I have never requested another placard. Some days, when my knees and legs give me grief, I think about when I will need one. It’s a scary feeling.
For now, I think about the last mountain that I climbed. I think about the hiking gear I’ll never use again. I think about the hiking club meetings that I don’t go to because it sucks to know it’s not worth the risk to go out on rocky trails. Does that make me disabled? The hand-over-hand rock climbing I once did that most people won’t attempt is now gone; does this make me disabled?
Some people choose not to be emphathetic
I think about the jerkish comment someone left on a post where I expressed the difference between being labeled a “disabled person” versus a “person with a disability.” The battle for understanding semantics is difficult. Frankly, for too many people, it’s easier to just simplify people with disabilities so that they shut up and go back into the closet with their awkward existences.
Here, I wonder what the word is for someone who consciously chooses to not be empathetic. Does this word have a “dis” prefix? Can we DIS the disser
Medicine for PD! PARKINSON’S LIFESTYLE MANAGEMENT:
When a Doctor says “It is Parkinson’s,” circumstances change. These 3 words have a profound effect on everyone involved, spouse, family members, and also friends. This life-changing diagnosis can be stunning for whoever the primary care partner is going to be. The emotions begin running the gauntlet from anger to fear for both the patient and the caregiver. Because this is a chronic progressive disease, presently there is simply no method for anyone to chart a progression course as it advances at its own speed; therefore it is very important to value happiness. Happiness is a choice that one can make no matter what the circumstances are.It is now very important that you live for today, not dwelling on the past. Having Parkinson’s disease is the now and not thinking about what might have been. Live for the now, be happy, and have a positive mindset. Here is an interesting thought; if you are not happy today- tomorrow is another opportunity to choose to be happy. Life just dealt you a hand of cards different from what you had expected so don’t be afraid to stop, take a deep breath and re-evaluate your goals. Now just imagine your life as a movie that you can edit, revise and rewrite as the movie plays! Be flexible in approaching life, have an open mind, and accept the changes you will have to make. You can make the changes on your terms and make them a positive experience. Take a proactive approach to be happy. Parkinson’s doesn’t dictate to you, you have the freedom to make the decision about how you see life. Although you don’t have control over how the disease progresses, you do have control of how you manage your care, attitude, and your quality of life. Parkinson’s impacts everyone in the family and you can experience happiness with other people as well as the support of those people in your life. Remember creating an atmosphere of positivity is infectious just like a happy smile. So cherish people who are important to you. This is a journey that you, your care companion, friends, and family are taking collectively and is unique to you and them. Active, busy, social people can be the healthiest and happiest in society. Get involved: make your motto ‘use it or lose it.’ Think exercise is something you don’t have time for? Think again. Exercise has such a profound effect on our happiness and well-being that it is an effective strategy for overcoming depression. If possible do some exercise outdoors in the fresh air and sunshine, this will improve your happiness as well as the vitamin D from the sun. I think you will find you have boosted a positive mood, broadened your thinking, and improved your memory. This is good stuff. Find a new habit that helps you to feel healthier and happy. Accept yourself as you are, this means accepting that you have Parkinson’s. Your perception of how you and how you imagine your body can be a big stumbling block. So love yourself and try to be the best person you can be in the body that you have.