Working With Your Care Team
Once you have chosen members of your care team how can you best interact with them? You and your team want the same thing: They want to give you the best possible care they can and you want to receive the best care available. Why then do so many persons with PD not get the best possible care available? One reason is that communication between patient and care team breaks down.
How can you keep the communication lines between you and your healthcare team open? Here are a few tips.
For every visit to a health professional try to have the following information written down so that you can hand it over to the secretary instead of having to repeat it ad infinitum:
- Your name
- Insurance information and member number
- Date of birth; social security number
- Current medications, including over the counter medications and any nutritional supplements you use, the dose you take, and the purpose of the medication
- Known allergies or adverse reactions to medications or common medical equipment
- Current health problems and dates of onset
Don’t forget that medication errors are all too common. You should learn a few ideas to reduce the chance of a medication error.
Health Care Services Utilization And Outcome
Differences in long-term health and health care utilization in PD were determined by extracting data from the Beneficiary Annual Summary File, which provides individual level data on inpatient hospitalization, outpatient physician visits, home health services, and skilled nursing facility care. One-year SNF placement rates were calculated for subjects with PD without incident stroke/TIA . We performed logistic regression analyses of SNF placement with physician specialty as the primary effect variable, adjusting for race, age, sex, socioeconomic deprivation, and modified comorbidity index.
What To Expect From The Doctor
At your first visit, a PD specialist will take a thorough medical history and also ask about your family medical history and symptoms. He or she will conduct a physical examination and a neurological exam. The doctor will ask you to sit, stand and walk to observe your balance and coordination. The doctor may also order a brain imaging test to rule out other conditions.
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New Diagnostic Standards For Parkinsons
Until recently, the gold-standard checklist for diagnosis came from the U.K.s Parkinsons Disease Society Brain Bank. It was a checklist that doctors followed to determine if the symptoms they saw fit the disease. But thats now considered outdated. Recently, new criteria from the International Parkinson and Movement Disorder Society have come into use. This list reflects the most current understanding of the condition. It allows doctors to reach a more accurate diagnosis so patients can begin treatment at earlier stages.
Treatment Of Parkinson’s Disease
Although there is no cure available for Parkinson’s disease, there are many treatments available to help control symptoms. For most patients, medication is prescribed to increase the brain’s supply of dopamine, which helps to control tremors and problems with movement and walking. Levodopa is the most effective medication for Parkinson’s disease. This natural substance is converted into dopamine when it passes through the brain. Other medications commonly prescribed for Parkinson’s disease may include:
- Dopamine agonists
- Anticholinergics
- Amantadine
Patients with advanced stages of Parkinson’s disease who are not be responding to medication, may benefit from a surgical procedure known as deep brain stimulation. During this procedure, electrodes are surgically placed within the brain to deliver electrical stimulation and help control movement. Symptoms of Parkinson’s disease may be reduced as a result of this procedure, however, there are risks which may include infection, stroke or brain hemorrhage.
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Predictors Of Specialist Care
Only 58% of patients with PD saw a neurologist at any time in the 48-month study period. The remaining subjects received their PD care from a primary care physician specializing in internal medicine , family practice , or geriatric medicine . Some subjects had more than one type of primary care physician submit a PD treatment claim on their behalf. A logistic regression model including age, race, sex, modified comorbidity index, and socioeconomic deprivation score revealed that women and nonwhites were less likely to have specialist care. Specific race, sex, and age group data are presented in . A multivariable regression model assessing the interaction of race and sex demonstrated that both factors strongly predicted whether a patient with PD received specialist care. Black female patients with PD were least likely to receive care by a neurologist in the study period , followed by black male and white female patients . Adjustment for comorbidity and socioeconomic variables did not alter race/sex relationships significantly, suggesting that race and sex are major predictors of specialist referral, after accounting for age. A sensitivity analysis using prevalent cases and the same covariates supported our findings with incident cases: women and blacks were less likely to have neurologist care, suggesting that referral was not merely delayed in early disease for these groups.
Parkinsons Disease Treatment: Why Choose Johns Hopkins
- Our team offers the newest and most effective therapies to address Parkinsons disease symptoms, from carbidopa/levodopa infusion therapy and laser ablation of brain lesions to deep brain stimulation and transcranial direct current stimulation.
- World-class neuroscientists at Johns Hopkins are exploring the biochemical pathways involved in Parkinsons disease, yielding greater understanding of the disease and paving the way for new treatments.
- Top specialists in neurology, neurosurgery, physical therapy, speech and swallowing, occupational therapy and mental health work together to improve quality of life for people with Parkinsons disease.
- Our Parkinsons disease center is a leader in establishing benchmarks for quality care and educating physicians, patients and caregivers.
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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.
What To Look For In A Parkinsons Disease Neurologist
Here is a checklist of basic questions for your prospective neurologist:
- How long have you worked in the field? How many Parkinson’s patients do you see a year?
- Do you have special training in movement disorders? Are you board-certified in neurology?
- Who do I see when you are not available?
- What hospital do you use for treating patients?
It’s important to understand that the online rating systems for doctors are not very accurate. Or they are, in some ways, and it is not the information you are looking for. For example, many of these ratings rank a doctor high if he is always on time and never backed up. If you think about the clinic setting and the inability to really control what happens in a typical day, and the doctor who is always time may be the doctor who never has that extra minute to give you when you need it. These ratings also often include how easy it is to get an appointment.
Of course, the doctor who is exceptional that everyone wants to see ranks poor on this measure, and the doctor who doesn’t have a strong following ranks high. If you do look at these rankings, make sure to read the comments, and realize that one bad comment could simply represent one patient having a bad day after being given a diagnosis he didn’t want.
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Is It Normal To Feel Depressed
Yes! Researchers have found that 40 to 50 percent of people with Parkinsons are depressed. Other brain and mood symptoms include anxiety, sleep disturbances, and behavior changes. Getting a difficult diagnosis can make people feel sad or worried, but this kind of depression is more prolonged and more serious.
Researchers believe that the underlying changes in the brain that cause PD might also cause depression. In fact, some people think that depression might be an early sign of Parkinsons. Medication, mental health counseling, and support groups can all effectively treat this kind of depression, so be sure to tell your doctor how you feel.
General Strategies For Getting The Most Out Of Your Care Team
It’s important to be an active partner in your care. Try to resist adopting the role of a passive patient who just follows the orders of the doctors. Ask questions. But ask them in a cordial way in order to learn. Ask questions so that you can maximize the benefits of any treatment you undergo. Try also to avoid the opposite danger of asking too many questions and of taking over the role of doctor yourself. You will have to learn to accept the care of others. Let them do their job. Learn from them. Partner with them. If you can establish this kind of partnership with your care team you and your family will find it easier to cope with all the challenges that PD will throw at you over the years.
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How Can Parkinson Canada Help You Live Well With Parkinsons
You have access to a team of compassionate, trained Information and Referral Associates who are here to answer your questions and provide guidance and support in English and French. They can help you understand and learn more about your diagnosis, suggest strategies and resources to help you manage your Parkinsons and link you to other support services.
To speak with a Parkinson Canada Information and Referral Associate, call 1-800-565-3000 or email Coming to terms with your diagnosis may be difficult, but you dont have to do it alone. We are here to help.
When youre ready, Parkinson Canada has information and tools to help you manage your diagnosis and can make local connections to people who know what youre feeling.
Diagnosis Of Parkinson’s Disease
If Parkinson’s disease is suspected, symptoms are reviewed and a physical examination is performed. A neurological exam is also performed to determine how well the nerves are working. There is no definitive diagnostic test for this condition, so diagnosis may include ruling out any other conditions that may cause similar symptoms.
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Communicating With Your Doctor
One of the most important parts of getting good medical care is communicating with your doctor and health care team, so you can make smart, informed decisions about your health. That includes getting detailed information about your condition, how it can be treated, what the possible side effects of different treatment options are, and what you can do to improve your quality of life. It also includes information about coping with your diagnosis and treatment, both emotionally and physically.
Symptoms Of Peripheral Neuropathy
The symptoms of PN can be non-specific, and a person therefore may not be able to distinguish on their own whether his/her symptoms are due to PN or another condition. PN, however, often results in specific findings on a neurologic exam, such as decreased sensation to pin prick or vibration or the lack of ability to discern which way a toe is being pointed without looking. Other tests such as Electromyogram and Nerve conduction studies may be necessary to confirm the diagnosis. Small fiber neuropathy which typically causes pain, burning, tingling and/or numbness in the feet, may have normal EMG and NCS and a skin biopsy may be necessary to confirm the diagnosis. With the appropriate examination and supportive tests however, a neurologist should be able to distinguish the symptoms of peripheral neuropathy from other conditions, including PD, that may cause similar symptoms.
There are many known causes of PN including diabetes, vitamin deficiencies, certain infections, and autoimmune diseases. Many of these causes can be treated, so it is important to know if you do have PN and what the cause is. There are those people; however, who have the signs and symptoms of PN, but no known cause can be identified.
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The Use Of Levodopa And Peripheral Neuropathy
There are reports in the literature that levodopa use may increase the risk of peripheral neuropathy, although other studies suggest that this is not the case. There are studies that demonstrate for example, that cumulative Levodopa exposure correlates to prevalence of PN in people with PD. Other studies however, demonstrate no difference in the prevalence of PN whether the person was treated with Levodopa or not, suggesting that Levodopa treatment does not play a role in development of PN.
Another area of research that emerges from the literature is the potential role of Vitamin B12 deficiency in the development of PN in those with PD. Some studies suggest that Vitamin B12 deficiency is a more common cause of PN among those with PD than those with PN who do not have PD.
There is also research that suggests that levodopa treatment may contribute to PN through impairment of Vitamin B12 metabolism, leading to Vitamin B12 deficiency. Taking COMT inhibitors such as Entacapone may protect against this complication.
Regardless, if PN is diagnosed in anyone, whether they have PD or not, and whether they take Levodopa or not, Vitamin B12 and various other markers of Vitamin B12 metabolism should be tested. If Vitamin B12 levels are low or even low-normal, a person should take Vitamin B12 supplementation, which may help with the symptoms of PN. Other causes of PN, many of which can be checked with various blood tests, should be investigated as well.
Where Can I Get More Information And Resources
There are many patient advocacy and research organizations that maintain current, accurate information and patient-education resource libraries. These include:
- The Parkinsons Foundation Library is a curated collection of downloadable PDFs, links, and proceedings from research summits.
- The Michael J. Fox Foundation offers multiple educational resources, from webinars to Q&As to curated publications.
- The American Parkinson Disease Association maintains an education and support webpage featuring downloadable publications, webinars, Q&A opportunities, and links to local resources and support groups.
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How A Diagnosis Is Made
The bedside examination by a neurologist remains the first and most important diagnostic tool for Parkinsons disease . Researchers are working to develop a standard biological marker such as a blood test or an imaging scan that is sensitive and specific for Parkinsons disease.
A neurologist will make the diagnosis based on:
- A detailed history of symptoms, medical problems, current and past medications. Certain medical conditions, as well as some medications, can cause symptoms similar to Parkinsons.
- A detailed neurological examination during which a neurologist will ask you to perform tasks to assess the agility of arms and legs, muscle tone, gait and balance, to see if:
- Expression and speech are animated.
- Tremor can be observed in your extremities at rest or in action.
- There is stiffness in extremities or neck.
- You can maintain your balance and examine your posture.
Look For A Parkinsons Specialist
Both general neurologists and movement disorders specialists care for people living with Parkinsons. It takes about 12 years in the U.S. to become a general neurologist a doctor who works with brain and central nervous system conditions. This includes a four-year undergraduate college degree, four years in medical school and three to four more years of specialized training in a neurology residency. General neurologists typically work in a hospital, or private or group practice. Some neurologists treat many people with Parkinsons and are knowledgeable about the disease. However, most neurologists have diverse practices, of which PD represents only a small percent.
Most movement disorders specialists are neurologists who have completed another one or two years of movement disorders training, a neurology sub-specialty. Movement disorders specialists may see patients in a private practice or at university medical centers. They often perform;clinical;or basic science research in addition to caring for patients. They may also teach doctors who are becoming specialists.People with Parkinsons may constitute 50 percent or more of a specialists practice. With this level of experience, a movement disorders specialist will be more familiar with the range of available Parkinsons medications, how they work and possible;side effects. A movement disorders specialist is also more likely to discuss the role of;clinical trials.
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Finding The Right Movement Disorder Specialist
Having the right partnership with your doctor can make a difference, not just in managing your Parkinsons symptoms but also in how supported you feel overall. Its important for you to feel confident in that relationship and to have access to a treatment team that meets your needs.
Finding a good movement disorder specialist is a lot like hunting for a good dentist or a good mechanic: You need to ask around. Your primary care doctor or neurologist may be a good place to start. Or ask people in your support group, if you attend one, whom they see. You can also try contacting one of the national Parkinson’s organizations.
In choosing a doctor, consider how much the doctor knows and how well the doctor listens. Remember, no two cases of Parkinson’s disease are alike. Having a doctor who understands this, and who listens to you, is crucial.
With any Parkinson’s doctor, you are a partner in your care. Educate yourself about PD. Parkinson’s is different for everyone, and you can’t get the best care unless you’re specific about what you are experiencing. It’s okay to ask why particular treatments or therapies are being recommended , and it’s okay to get another opinion.
The;MDS Movement Disorders Specialist Finder can help you locate a doctor in your area.;