Why Do Motor Fluctuations Happen
As Parkinsons disease progresses, it is common for more dopamine-producing brain cells to die, causing the benefits from Parkinsons medications to not last as long as they did before. The brain eventually reaches a point where it stops producing dopamine in large amounts and therefore must rely on medicine to replace dopamine. Researchers think this happens for two reasons:
- As Parkinsons progresses, cells become less able to store dopamine. When this occurs, the cells are unable to release dopamine without medications, such as levodopa. When the dose fades, 60-90 minutes after taking it, there is no more levodopa for the cells to use, resulting in lower dopamine levels and a worsening of symptoms .
- The cells in your brain become more sensitive to both higher and lower concentrations of levodopa. There is a higher likelihood of experiencing off times when levodopa levels are too low and a higher likelihood of experiencing dyskinesis when levodopa levels are too high.
As a result, your doctor may advise you increase your medication doses to achieve optimal control of motor symptoms, such as tremor, slowness and rigidity. The goal is to maximize symptom control without increasing side effects.
How Many People Living With Parkinsons Experience Off Periods
It has been reported that within one to two years of beginning levodopa therapy, almost 50% of peoplewith Parkinsons notice that their medication lasts for shorter periods of time. Initially, this was why some doctors choose to delay prescribing Levodopa, a still unresolved debate.
The debate in itself is not the problem at hand, however. The problem is that half of the people living with Parkinsons are experiencing OFF periods and many of them are not getting the relief they need.
Here are five ways you might be able to change that in order to get the best care for you.
How Is Parkinsons Disease Treated
There is no cure for Parkinsons disease. However, medications and other treatments can help relieve some of your symptoms. Exercise can help your Parkinsons symptoms significantly. In addition, physical therapy, occupational therapy and speech-language therapy can help with walking and balance problems, eating and swallowing challenges and speech problems. Surgery is an option for some patients.
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Do You Have An Off Story To Share
This post is the first in a series about what it means to be OFF. If you have a story about OFF and what youve done on your own and with your doctor that has helped you to minimize or navigate these periods, and youd like to share it with us, please send us an email at .
This post was written by the Davis Phinney Foundation.
This blog series is sponsored by Sunovion Pharmaceuticals Inc.
What Is The On/off Phenomenon In Parkinsons
The ON/OFF phenomenon in PD happens when someone experiences flares of symptoms between regularly scheduled doses of levodopa.
During an ON episode, the levodopa is working well and symptoms improve. During an OFF episode, the levodopa isnt working and symptoms return or get worse.
A 2018 review found that 25 to 50 percent of people with PD developed OFF episodes within 2 years of beginning treatment with levodopa. Within 10 years of starting treatment, most people with PD had OFF episodes.
OFF episodes can affect different people in different ways. They may follow a predictable pattern or occur unpredictably. They may set in suddenly or gradually.
The researchers behind a
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New Therapies For The Acute Treatment Of Off Episodes In Parkinsons Disease
Fabrizio StocchiDepartment of Neurology, IRCCS San Raffaele Pisana, Rome, Italy
The symptoms of OFF episodes can be caused by various factors including abnormal lingual control of swallowing and lingual festination. Patients with PD can also have a delayed swallowing reflex, which increases the risk of swallowing during inspiration, causing aspiration. Patients can also have a repetitive and involuntary reflux from the vallecula and piriform sinuses into the oral cavity.51 More importantly, many patients with PD have gastroparesis, which appears as postprandial bloating, early satiety, nausea, and vomiting.52,53 Delays in gastric emptying can cause slow delivery of levodopa to intestinal absorption sites, which, in turn, delays peaks in plasma levels leading to erratic drug responses, slow onset of action or dose failure.53â55 These issues were emphasized by gastroscopic examination of a patient, which found an intact levodopa/carbidopa tablet in the stomach 1.5 hours after it was swallowed.56 Furthermore, daytime gastroscopy has found food from the previous evening remaining in the stomachs of many patients with PD.
These developments in rescue therapies have the potential to substantially improve quality of life and help patients deal with the otherwise untreatable symptoms of OFF episodes, which are a serious burden and involve both motor and non-motor symptoms.
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What Can People With Parkinsons Do To Help Themselves
Documenting On and Off time in a 24-hour diary, where they can indicate the times and frequency of their symptoms and fluctuations, along with the times and frequency of their dosage, can be useful, it may begin to show a pattern which will allow the doctor or PDNS to devise a new regime. The 24 hour diaries are available from the Parkinsons Association and the website www.wearingoff.com.
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Symptoms Of Parkinsons In Women
Premenstrual symptoms of depression, bloating, weight gain and breast tenderness also appear to increase in intensity in women who note a variation in their symptom control with menstruation. Usually these symptoms improve after menstruation but will reoccur with each cycle. A small sample of women in the studies used birth control pills. They reported that they had less intense fluctuations in their symptom control but more research needs to be done before recommendations can be made. However, it is important to recognize that these fluctuations occur so that women can be prepared for the changes in control. The use of regular exercise and relaxation techniques can help decrease symptoms and improve coping abilities.
Living With Parkinsons: What Is Off
The terms ON and OFF have been used to describe responses to Levodopa therapy for over 40 years. However, to this day, theres still no universally agreed upon definition for the term OFF.
This poses a problem for the doctors who are expected to recognize it and the people living with Parkinsons who try to describe it.
When both sides interpret OFF in different ways, it often means that people with Parkinsons dont get the interventions or treatments they need to reduce their OFF periods and live well with Parkinsons.
In an attempt to help you become a better advocate for yourself, this article will highlight four different types of OFF and why they happen. We will also offer a list of questions and a working definition of OFF that you can take with you to your next doctors visit.
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Who Should I Talk To About Managing Parkinsons While Menstruating
The first, and most important step, is not to be embarrassed. Many women report feeling uncomfortable discussing menstruation, sexual health, and reproduction issues with their doctors or partners. However, menstruation is a natural and regular part of life as a woman. Managing your periods and your Parkinsons in tandem is an essential part of living well. So, share your concerns with your care team, especially when it affects you at least one out of every four weeks.
One cornerstone of your team is your OB/GYN. Seeing a provider specializing in female reproductive health is your best place to start. Though they may not have experience treating YOPD women specifically, OB/GYNs have extensive experience and training to help women of all walks of life navigate their gynecological health. Whether you are considering birth control, are interested in learning about different menstrual products, are considering getting pregnant, or are thinking about a more permanent procedure like a hysterectomy, your OB/GYN is the hub for all the best information.
Menstruation is a normal part of being a woman but combined with Parkinsons, it can affect your quality of life and wellbeing. Trying different medications, menstrual products, and schedules can help you balance the effects of Parkinsons and your period. And working closely with your care team will help turn a daunting challenge into a manageable part of your life as a YOPD woman.
What If Im Not Interested In Making Changes To My Medications
It can feel overwhelming to think about taking yet another medication, especially when there are unpredictable side effects. However, there are several practical steps beyond medication changes that you can take to help manage your Parkinsons while you are menstruating. Using period products that wont be as affected by motor symptoms for example, wearingperiod pantiesrather than changing pads or tampons can help reduce the effects of tremors and dyskinesias.
You can also focus on scheduling your time to reduce your responsibilities during PMS and menstruation. For example, consider getting help from a friend, relative, or babysitter during the week you may be OFF more often or talk to your employer about going part-time during that week so that you can better balance work and period symptoms.
Also, make sure to build a supportive community around you. This can include your care partner, close female friends or relatives, or even asupport group for YOPD women. Sharing your feelings with people who care about you and your health is essential for living well and establishing community and support is a big part of that. Remember that you are not alone and that while there is strong evidence that menstruation can make your Parkinsons worse, therearesolutions.
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Qualitative Analysis And Interpretation Of Figurative Language
Each use of figurative language was reviewed, and a list of themes or categorizations common to at least 2 of the figurative language phrases was generated . A neurologist and movement disorders specialist with advanced training in narrative medicine then reviewed each figurative language phrase and classified it into one or more of the theme categories listed. The classifications were then reviewed by authors B.E., S.M., and L.M.C., and final categorizations were chosen after discussion. In the process, the original list of themes was refined to consolidate categories.
A goal of this analysis was to determine how a movement disorders specialist who encounters each of the figurative language phrases would interpret them. Specifically, what symptom or symptoms the movement disorders specialist believed the patient was referring to with the use of the figurative language.
List of Symptoms That the Reviewing Neurologists Used to Specify Which Symptom They Thought Each Figurative Language Phrase Represented
The Experience Of Off Periods: Qualitative Analysis Of Interviews With Persons With Parkinson’s And Carepartners
Wearing off questionnaires may capture fluctuation presence but not all experiences.
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Persons with Parkinson’s identified some motor off symptoms not in questionnaires.
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Six of the described non-motor wearing off symptoms were absent from questionnaires.
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Certain off symptoms were reported only by PwPs.
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Certain off symptoms were reported only by carepartners.
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Off Periods And Biological Clock Malfunctions
Before I was diagnosed with Parkinsons disease seven years ago, I hadnt heard the term off periods. After getting involved in the Parkinsons community, I discovered that the term is frequently used.
One reader asked, Why do my symptoms get so bad in the early evening? My response was, Its an off period. But that answer might be wrong.
Not everyone with Parkinsons disease experiences off periods. They are more common the longer you have Parkinsons and the longer you take levodopa.
An article published in the Journal of Patient-Centered Research and Reviews noted that, Wearing off of Parkinsons disease medication is common, but triggers and coping strategies for this transient phenomenon are poorly understood.
After more than 2,000 Parkinsons patients completed a survey about these periods, researchers concluded that, Although OFF periods are common, the individual experiences of OFF vary. This knowledge could be used to develop new counseling strategies for OFF periods in people with Parkinsons disease.
Parkinsons Disease In Women
Until recently, little has been written regarding the effect that gender has on the development and management of Parkinsons disease.
Current research has focused mainly on the impact that sex hormones have on the development of Parkinsons disease. Less has been written on the impact that Parkinsons disease has on menstruation, pregnancy and menopause. This article will review the most recent information on both the affect that Parkinsons disease has on women and the impact that gender has on Parkinsons disease.
While Parkinsons disease is usually thought of as a disease of the elderly, approximately 3-5% of women diagnosed with this disorder are under the age of 50. A large number of these women are still experiencing regular menstrual cycles. Studies that have reviewed the effect of hormone fluctuations and menstruation on Parkinsons disease have noted an impact of the menstrual cycle on disease control. During menstruation women described increasing Parkinsonian symptoms, decreasing medication responsiveness and increased off times. They also complain of increased fatigue, cramps and heavier menstrual flow. This can lead to occasional humiliating self-care issues due to worsening dexterity.
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What Causes Motor Fluctuations
Motor fluctuations are caused by a drop in brain levels of dopamine, the chemical that helps your body move smoothly. When you have Parkinson’s, your nerve cells no longer make enough of it.
Taking levodopa acts as a replacement for the dopamine, but as the medicine wears off, the levels of the chemical in your brain drop again. Early in the disease, nerve cells in your brain are able to make enough dopamine so that you don’t have any Parkinson’s symptoms when levodopa wears off.
As your Parkinson’s advances, these nerve cells start to break down. When that happens, your brain can no longer make up for the drop in dopamine levels when your medicine wears off. That’s when you’ll start to notice a return of symptoms like stiffness, tremor, tiredness, or mood changes.
Another reason you might get motor fluctuations is that you have slow movement through your digestive system. That means medicines like levodopa can’t get absorbed from your gut as quickly as they once did.
What Causes On/off Episodes In Parkinson’s Disease
On/off episodes, also known as off time, typically happen more often as Parkinson’s disease progresses, and levodopa becomes less effective.
Carbidopa/levodopa is considered the gold standard in Parkinson’s disease treatment, meaning it’s the most effective for treating motor symptoms, such as tremor, rigidity, and bradykinesia . Levodopa works by crossing the blood-brain barrier and converting into dopamine, low levels of which are believed to be the cause of Parkinson’s symptoms. Adding carbidopa to levodopa helps prevent levodopa from breaking down before it crosses into the brain, which helps reduce side effects like nausea and vomiting.
Some people who have Parkinsons start taking levodopa at around three doses per day. If you start experiencing off episodes, your doctor may increase your dose to four or more times per day.
Off time is common: According to patient surveys, around half of patients who take levodopa report experiencing wearing off periods. Of those patients, 25% experience it 3 to 6 hours per day, and 52% have symptoms for 1 to 3 hours a day.
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Keeping A Motor Diary
You can help your doctor understand how effective your medications are by keeping diary. Typically a motor diary, or wearing off diary, will include details such as:
- the times of day when you take your Parkinsons medication
- the times of day when you have good symptom control
- which symptoms re-emerge during the day and when
- what symptoms you experience at night
- any other complications you may experience, such as dyskinesia, and their relation to when you take your medication
- it can also be useful to note the timing of meals, drinks and snacks. Make a note of whether eating certain foods affects your symptom control protein, for example, can interfere with the absorption of some medications.
For a sample diary and information on keeping one see Keeping a diary.
Parkinsons Disease Is A Progressive Neurodegenerative Multisystem Disease1
Parkinsons disease is a multisystem disorder typically defined by a progressive loss of dopaminergic neurons in the substantia nigra.1,2 By the time of diagnosis, individuals have lost a significant number of dopaminergic neuronsevidence suggests 60-80% of dopaminergic neurons degenerate before clinical features emerge.23 As PD progresses, neurodegeneration continues, with further loss of dopaminergic neurons and dopamine.2 The progression of disease reduces the brains ability to store and release dopamine when it is needed.2,3
The characteristic motor symptoms of Parkinson’s disease are bradykinesia, tremor and rigidity, all of which are related to the degeneration of dopaminergic neurons in the substantia nigra. However, these symptoms are only one aspect of this multifaceted and complex disorder. It is now suggested that Parkinson’s related degeneration is widespread in both the central and peripheral nervous systems.1
Evidence is mounting that many non-nigral sites produce a number of clinical signs and symptoms of Parkinsons disease.1
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How Is The On/off Treated
Many of the strategies that can be used to treat Wearing-off effects can also be tried when someone is experiencing On/Off fluctuations, such as ensuring that you are taking your medication correctly, taking them with plenty of fluid and avoiding food at tablet time.
If your On/Off fluctuations are very bothersome, your doctor or PDNS may suggest a change in medication timing, dosage or type. Your doctor may advise you to try an enzyme inhibitor, or a long acting dopamine agonist to give smoother control of your symptoms, a concept devised to achieve a continuous delivery of dopamine to the brain. This continuous delivery of dopamine could also be achieved by the use of Apomorphine or Duodopa. For more information, speak to your doctor or PDNS, and see our information sheet: Medications and Parkinsons.