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.
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.
Factors That May Make Your Symptoms Worse:
- Failure to get medications at specific times and coordinated with meals.
- Certain dopamine blocking drugs can worsen symptoms. If absolutely necessary because of hallucinations or behavior, only quetiapine or clozapine should be used.
- Anxiety, stress, and sleep deprivation
- Urinary tract, lung, or other infections
- Provide Advance Directives: Power of attorney for health care and living will. Choose an advocate who can ask questions and act as your spokesperson. Make sure this person is aware of your medical wishes so he or she can assist in speaking for you if needed.
Information Checklist For Your Nurse And Doctor When You Enter The Hospital
- Name of your Parkinson’s disease neurologist.
- Phone Number of your PD neurologist.
The following are some suggestions to make the hospitalization of this person with PD smoother:
- Parkinson’s disease medications often need to be given at specific times of the day. When writing medications in the orders, please use specific times .
- Patients with PD should resume medications immediately following procedures, unless vomiting or severely incapacitated.
- If there is confusion, consider urinary or lung infections. Also, pain medications or benzodiazepines may be potential causes.
Surgery For People With Parkinsons Disease
Deep brain stimulation surgery is an option to treat Parkinsons disease symptoms, but it is not suitable for everyone. There are strict criteria and guidelines on who can be a candidate for surgery, and this is something that only your doctor and you can decide. Surgery may be considered early or late in the progression of Parkinsons. When performing deep-brain stimulation surgery, the surgeon places an electrode in the part of the brain most effected by Parkinsons disease. Electrical impulses are introduced to the brain, which has the effect of normalising the brains electrical activity reducing the symptoms of Parkinsons disease. The electrical impulse is introduced using a pacemaker-like device called a stimulator. Thalamotomy and pallidotomy are operations where the surgeon makes an incision on part of the brain. These surgeries aim to alleviate some forms of tremor or unusual movement, but they are rarely performed now.
Recommended Reading: Parkinson’s Inheritance
Referral To A Specialist
If your GP suspects Parkinson’s disease, you’ll be referred to a specialist.
This will usually be:
- a neurologist, a specialist in conditions affecting the brain and nervous system
- a geriatrician, a specialist in problems affecting elderly people
The specialist will most likely ask you to perform a number of physical exercises so they can assess whether you have any problems with movement.
A diagnosis of Parkinson’s disease is likely if you have at least 2 of the 3 following symptoms:
- shaking or tremor in a part of your body that usually only occurs at rest
- slowness of movement
- muscle stiffness
If your symptoms improve after taking a medication called levodopa, it’s more likely you have Parkinson’s disease.
Special brain scans, such as a single photon emission computed tomography scan, may also be carried out in some cases to try to rule out other causes of your symptoms.
Your Home And Lifestyle
- . For example, simplify your daily activities, and change the location of furniture so that you can hold on to something as you move around the house.
- , including plenty of fruits, vegetables, grains, cereals, legumes, poultry, fish, lean meats, and low-fat dairy products.
- . They have benefits in both early and advanced stages of the disease.
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.
What Is Parkinsons Disease
Parkinsons disease is a kind of movement disorder. It affects the nervous system and causes problems with muscle movement. It is a chronic and progressive disease. This means that it doesnt go away, and the symptoms get worse over time.
Some nerve cells in the brain make a chemical called dopamine. Dopamine sends signals to help coordinate movement and coordination. In people who have Parkinsons disease, these cells die or do not work properly. The level of dopamine produced decreases. This affects the persons ability to control their movement normally.
There is no cure for Parkinsons disease, but treatment can help relieve the symptoms.
Is Early Diagnosis Possible
Experts are becoming more aware of symptoms of Parkinsons that precede physical manifestations. Clues to the disease that sometimes show up before motor symptoms and before a formal diagnosis are called prodromal symptoms. These include the loss of sense of smell, a sleep disturbance called REM behavior disorder, ongoing constipation thats not otherwise explained and mood disorders, such as anxiety and depression.
Research into these and other early symptoms holds promise for even more sensitive testing and diagnosis.
For example, biomarker research is trying to answer the question of who gets Parkinsons disease. Researchers hope that once doctors can predict that a person with very early symptoms will eventually get Parkinsons disease, those patients can be appropriately treated. At the very least, these advances could greatly delay progression.
Parkinson’s Disease and Movement Disorders Center
Our center provides compassionate and timely treatment to patients with movement disorders, such as dystonia, ataxia, essential tremor and similar conditions. But our mission goes beyond patient care excellence. By offering educational events and support groups, we empower patients and caregivers to become better partners in their health.
When Should I Call The Doctor
If you think your headaches may be migraines, youâll want to see a doctor to treat them and learn ways to try to avoid getting the headaches in the first place. Sometimes relaxation exercises or changes in diet or sleeping habits are all thatâs needed. But if needed, a doctor also can prescribe medicine to help control the headaches.
Youâll also want to see a doctor if you have any of these symptoms as well as a headache:
- changes in vision, such as blurriness or seeing spots
- tingling sensations
- weakness, dizziness, or difficulty walking or standing
- neck pain or stiffness
If you do see a doctor for headaches, he or she will probably want to do an exam and get your to help figure out what might be causing them.
The doctor may ask you:
- how severe and frequent your headaches are
- when they happen
- about any medicine you take
- about any allergies you have
- if youâre feeling stressed
- about your diet, habits, sleeping patterns, and what seems to help or worsen the headaches
The doctor may also do blood tests or imaging tests, such as a CAT scan or MRI of the brain, to rule out medical problems.
Sometimes doctors will refer people with headaches they think might be migraines or a symptom of a more serious problem to a specialist like a , a doctor who specializes in the brain and nervous system.
Itâs very rare that headaches are a sign of something serious. But see a doctor if you get headaches a lot or have a headache that:
Read Also: Cardinal Features Of Parkinson’s
What Happens At The Exam
If your doctor thinks you might have Parkinsonâs disease, theyll recommend that you see a specialist who works with nervous system issues, called a neurologist. One whoâs also trained in movement disorders, like Parkinsonâs, may be able to make the right diagnosis faster.
Your neurologist will probably want to see how well your arms and legs move and check your muscle tone and balance.
They may ask you to get out of a chair without using your arms for support, for example. They also may ask a few questions:
- What other medical conditions do you have now or have you had in the past?
- What medications do you take?
- Has your handwriting gotten smaller?
- Do you have trouble with buttons or getting dressed?
- Do your feet feel âstuckâ to the floor when you try to walk or turn?
- Do people say your voice is softer or your speech is slurred?
Parkinsonâs disease can look different from person to person. Many people have some symptoms and not others.
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Finding The Right Doctor
Managing Parkinsons disease well can be challenging. Finding a doctor whos well-versed in PD and will help guide you on the journey makes it easier.
Its natural to begin by discussing initial symptoms with your family doctor or internist, who may refer you to a general neurologist or one specialized in movement disorders to rule out Parkinsons.
The Parkinsons Foundation recommends people diagnosed with PD seek out a movement disorders specialist one who can become a key player on your healthcare team. For people living far from an academic medical center or a specialist in private practice, we recommend a knowledgeable, nearby general neurologist for most of your care and then traveling a longer distance two to three times each year to see a specialist. Finding a specialist can seem like a daunting task, but it doesnt have to be. The Parkinsons Foundation can guide you step by step through the process of finding one.
When I Am In The Hospital Why Don’t I Always Get My Medications On Time
Hospitals and hospital pharmacies have their own dosing schedules. A medication written for “TID ” may be given at 7 AM – 3 PM – 11 PM or some other standard schedule. Many hospitals may have a policy that permits nurses to give medications at times different from the scheduled time. This policy is a practical compromise because nursing staffs are busy and each nurse cares for multiple patients. Such a policy provides nurses time to complete their scheduled duties and allows flexibility in case of emergencies on the ward. As a result, it may seem that patients with Parkinson’s disease receive their medications at random times.
How can such a situation be remedied? First, make sure that the drug schedule, with specific times, is written into the doctor’s orders. Check that the physician knows when it should be given. Bring with you the complete list of your medications with the correct dosage. Talk with your nurse about the importance of receiving your medications on time. Explain that, without the medications, you can be immobile or uncomfortable and that the medications allow you to move around independently. You may know more about Parkinson disease than the doctor and the staff, so it is your responsibility to help them understand your situation. While you will still need to be somewhat flexible, sharing your knowledge can alleviate many problems. The staff wants patients to be well cared for during their stay.
Read Also: Parkinsons Genetics
What Looks Like Parkinsons But Isnt
Dr. Fernandez describes two main Parkinsons mimics:
Essential tremor. Also known as benign essential tremor or familial tremor, this movement disorder causes brief, uncontrollable shaking.
It most often affects your hands, but can also affect your head and neck, larynx and other areas. In rare cases, it affects your lower body as well.
But one clue can help distinguish essential tremor from Parkinsons.
This is not an absolute rule, but if shaking occurs at rest, it often is Parkinsons. And if shaking occurs in action, such as when youre writing or eating, it is essential tremor, Dr. Fernandez says.
About half of those with essential tremor have a family history of the condition.
Unlike Parkinsons, essential tremor is generally not perceived as a progressive disorder, and, if mild, may not require treatment.
Doctors can prescribe medications to reduce shaking, but they are not the same drugs used to treat Parkinsons, he says.
Drug-induced Parkinsons. Along with shaking, this condition may cause many symptoms similar to Parkinsons disease, including stiffness, slow movement, a decrease in facial expression and a change in speech.
As the name suggests, taking certain drugs, most commonly antipsychotics and mood stabilizers, can trigger this condition. How long it takes to develop can vary greatly, depending on which drug youre taking, how long you take it and the dosage.
Your doctor likely will treat drug-induced Parkinsons by adjusting your medication.
If You Develop A Tremor
Urgent medical care isn’t needed if you’ve had a tremorâshaking or tremblingâfor some time. But you should discuss the tremor at your next doctor’s appointment.
If a tremor is affecting your daily activities or if it’s a new symptom, see your doctor sooner.
A written description will help your doctor make a correct diagnosis. In writing your description, consider the following questions:
- Did the tremor start suddenly or gradually?
- What makes it worse or better?
- What parts of your body are affected?
- Have there been any recent changes in the medicines you take or how much you take?
Recommended Reading: Tardive Dyskinesia Prognosis
Brain Imaging Can Help With Diagnosis
Doctors use two tests that take detailed pictures of your brain. Each one may help your doctor make a diagnosis. These tests are:
- PET scan: This shows how your brain functions. It shows how the brain uses sugar. This scan can help tell the difference between Parkinson’s and .
- DaTscan: This shows problems with brain cells that make dopamine. Healthy brain cells light up during the test. Cells without enough dopamine appear dark. This scan can help your doctor tell the difference between Parkinson’s and a brain disease called .
Imaging studies are a newer way to diagnose Parkinson’s. However, not every healthcare facility can do them. It takes an experienced doctor to interpret the scans accurately. These scans also can be very expensive. Be sure to check with your insurance company ahead of time to see whether you are covered and what your out-of-pocket costs will be.
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References: 1. Parkinsons Foundation. Statistics. Accessed June 30, 2021. 2. American Parkinson Disease Association. What is Parkinson’s disease? Accessed June 30, 2021. 3. Michael J. Fox Foundation. About Parkinson’s causes. Accessed June 30, 2021. 4. Parkinsons Foundation. Movement symptoms. Accessed June 30, 2021. 5. Parkinsons Foundation. Non-movement symptoms. Accessed June 30, 2021. 6. Parkinsons Foundation. Diagnosis. Accessed June 30, 2021.
Indications for Use: The Boston Scientific Deep Brain Stimulation Systems are indicated for use in:
- Bilateral stimulation of the subthalamic nucleus as an adjunctive therapy in reducing some of the symptoms of moderate to advanced levodopa responsive Parkinson’s disease that are not adequately controlled with medication.
- Bilateral stimulation of the internal globus pallidus as an adjunctive therapy in reducing some of the symptoms of advanced levodopa responsive Parkinson’s disease that are not adequately controlled with medication.
CAUTION: U.S. Federal law restricts this device to sale by or on the order of a physician.
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