Patient Guide for Parkinson's Disease
Welcome to Sanctuary for the Physical Arts patient guide for Parkinson’s Disease Rehabilitation.
This guide will help you understand:
What is Parkinson’s Disease?
Parkinson’s Disease, or sometimes just called Parkinson’s or PD is a chronic degenerative disorder of the nervous system. It occurs when a system in the midbrain (substanstia nigra) which produces the chemical called dopamine, stops producing this chemical. It is still unknown why the cells stop producing dopamine. The chemical dopamine is required in the body for many things including coordination, mood, memory and motivation. It is interesting to note that usually by the time someone is diagnosed with PD, around half of the dopamine-making cells have already died.
History of PD
James Parkinson, a British apothecary, in 1817, first published a report summarizing 6 cases of what he called the ‘shaking palsy’ or ‘paralysis agitans’. All six patients presented with similar symptoms of tremors, stooped posturing, abnormal gait, paralysis and diminished muscle strength. Neurologists researched the disease over time and continued to add knowledge to the description of the disease throughout the 19th century and early 20th century. At the end of the 20th century a great advancement in the discovery of a genetic component that occurs in some people with the disease was made. One Italian family of 5 generations was researched who had over 60 family members diagnosed with PD. An abundance of PD research is ongoing throughout the 21st century.
Signs and Symptoms
There is no single symptom that determines that one has PD. Nor is there one single test that is used to delineate that you have the disease. Everyone who is diagnosed has a unique disease but there are a constellation of signs and symptoms that can develop which cumulatively point to the suspicion of PD. The most common signs and symptoms are:
There are several factors that appear to play a role in the development of PD: There are several factors that appear to play a role in the development of PD:
How do healthcare providers diagnose the problem?
As mentioned previously, there is no one single test that can be completed to diagnose PD. The diagnosis comes about based on your medical history, your presenting symptoms and the neurological and physical examination that your healthcare professional conducts. Although PD is often diagnosed when the classic motor (movement) signs or symptoms occur such as a tremor, muscle rigidity, balance issues or difficulty moving, more current research points to the non-motor signs such as loss of smell, dizziness, constipation, sleep disturbances and depression as symptoms that are evident ahead of the motor signs and could be used to point towards an earlier diagnosis of the disease in the future.
If any of your health care professionals suspect PD then you will be referred to a doctor who specializes in neurological disorders (neurologist).
Although there is no one single investigative test that can definitively be done to support the diagnosis of PD, several investigative tests may still be done in order to rule out other diseases, which then helps to ‘rule in’ PD as the final diagnosis. You may be required to do blood tests, a magnetic resonance image scan (MRI), an ultrasound of the brain, a positron emission tomography scan (PET), or a special single-photon emission computerized tomography (SPECT) scan called a dopamine transporter scan (DaTscan). In most cases extensive testing is not done, and the diagnosis is made based on your clinical history, signs and symptoms.
There are many drugs that are being used to treat the PD physiological disease process as well as many drugs that are used to treat the symptoms that the disease brings with it. Unfortunately there is no drug yet that can reverse the effects of the disease or stop the disease from progressing.
Most initial drug treatment is aimed to restore and mimic the effects of dopamine, or to stop the breakdown of dopamine in the brain. Doctors often choose to trial a dopamine-type drug to see if it is effective in decreasing symptoms as a way to help rule-in PD as a diagnosis.
Although many new drugs are being developed and tested regularly, Levadopa, which is a chemical that is converted into dopamine once inside the body, has previously been the most widely used medication and was at one time considered the gold-standard for the treatment of PD. Levadopa is often combined with another medication called carbidopa, which helps the medication cross into the brain. Levadopa requires 2-3 weeks to initially take effect and it is very time-sensitive in that it is released into the body to work and then patients require another dose at a very specific time in order to maintain their effects in the body. “On-time” refers to the time in which the medication is working, and symptoms are controlled. As the medication wears off there may be an “off-time” where the symptoms start up again until another dose of medication is taken. Managing the on and off times of medication is one struggle that many patients with PD encounter.
Levodopa and carbidopa are now being rivalled as the gold-standard in treatment by many other drugs that also act to stop the breakdown of dopamine (MAO-B inhibitors, COMT inhibitors, anticholinergics) or act to mimic dopamine itself in the brain (dopamine-agonists).
Your doctor can inform you of the most up-to-date and efficacious drugs for your individual case. They will choose the best drug based on which symptoms you have, your age, your overall physical health, your lifestyle, and whether or not your symptoms affect your activities of daily living such as your general balance, walking, and your ability to use your hands well.
Unfortunately some of the drugs used to treat PD can cause new symptoms of their own. Dyskinesias (involuntary and erratic movements of the arms, legs, trunk, or face) may occur as drug doses get higher. It is important to note that dyskinesia is not actually a symptom of the disease of PD itself, but rather a side effect of some drugs used to treat the symptoms of PD. Many patients choose to continue taking medication despite having a resultant dyskinesia because without the medication, their other PD symptoms are even worse, and they are unable to manage in their daily lives.
Engaging in rehabilitation is a very important part of living with PD. As stated previously, the goal is not to reverse the effects of PD, but rather to slow down the degenerating effects of any symptoms you may have and maximize your ability and function despite symptoms. Your Physical Therapist will aim to keep you as independent as possible for as long as possible. You may also have other specific lifestyle goals that your Physical Therapist can help you with.
Regular exercise is important for anyone but it has been shown to be particularly effective in people living with PD as it can affect how efficiently dopamine is used in the brain.
Every PD journey is different so your Physical Therapist will focus on developing an exercise program for you that minimizes the effects of your specific symptoms. Exercise for PD will include a combination of exercises for strength, balance, endurance, flexibility and coordination. Several methods of exercise may be used by your Physical Therapist to develop and individualize a program for you:
Cardiovascular (aerobic) exercise: Several studies have shown the benefits of high intensity exercise slows the general aging of the brain in anyone (high intensity exercise is defined as exercise that raises your heart rate and makes you breathe heavier). In patients with PD, high-intensity aerobic exercise has also been shown to slow down motor skill degeneration, protect against depression, and improve quality of life.
Your Physical Therapist can advise you on what type of high intensity exercise might be best for you, how much, and how often. The general thought overall is that the more cardiovascular exercise you can do, the better! That being said, even small amounts count! As a guide and to have something to aim for, one study showed that 2.5 hours of physical activity per week slowed the decline in quality of life in people living with PD. It is wise to choose something that you enjoy doing as it has also been shown that consistency is the key; more benefits have been shown with exercise programs after 6 months versus those that just last weeks or a few months.
Strength training: Using weights can be very beneficial to improve strength, particularly lower body strength, which has a direct effect on one’s ability to balance. In addition, both upper and lower body strength training has been shown to help decrease slowness of movement (bradykinesia) that may be a symptom for some, and can improve the ability to more easily do regular daily activities.
Balance, posture and fall prevention: As noted earlier, the lack of dopamine affects the ability to initiate or continue movements. Sometimes it is difficult to start a movement (akinesia), or movements are slow (bradykinesia). Often movements that are normally automatic are also affected such as blinking, swallowing, walking while talking, or arm swinging with walking. Patients with PD may have to be reminded to continue these types of movements.
A change in the ability to initiate movements or having slower or less automatic movements can directly affect one’s posture and balance. This can in turn increase one’s chance of falling. It has been well proven that balance can improve with training! For this reason your Physical Therapist will work on posture and balance exercises with you. They will also discuss strategies to make your home and your regular activities less risky for falls.
Movement strategy training: Different types of movement training can assist with maintaining regular motion and regulating automatic movements. Your Physical Therapist may work on reciprocal training, which aims to reintegrate the normal reciprocal movements such as arm swinging and trunk rotation with walking. It has also been shown that training with oversized movements, such as exaggerated arm or leg swings, or using extra-large steps when practicing can then help maintain the smaller, similar movements that are normal with everyday activities. Your Physical Therapist may also actively train by practicing two tasks at once (dual-task training) such as walking and carrying a cup of water, walking and talking, or walking while doing mental tasks. Using mental imagery to imagine the perfect movements may also be used to assist your rehabilitation.
Other exercises and group exercise: Other specific activities such as dancing, non-contact boxing, tai chi, qi-gong, biking, and yoga have all been shown to have positive effects on the symptoms of PD, so your Physical Therapist may incorporate these activities into your exercise routine. In addition your Physical Therapist may encourage you to partake in a group exercise or support group. It is well proven that group activities can positively benefit one’s overall well-being; this is true also for PD.
Other Interdisciplinary Team Therapy
Your Physical Therapist may suggest that you also work with other health care professionals in order to best address your rehabilitation needs. They may suggest you see an occupational therapist (OT) who can more finely address your activities of daily living such as getting dressed, bathing or showering, writing, cooking and any other activities of daily living that you may be having difficulty with. They can also assist greatly with advising any home modifications to reduce falls risks, or provide support to foster independence.
Your Physical Therapist may also encourage you to see a speech language pathologist (SPL) if you have symptoms of poor voice projection, speech difficulties, swallowing concerns, diminishing facial expressions and/or communication problems.
Our understanding of PD is increasing daily. Continual extensive and ongoing research seeks to learn more about PD in order to better definitively diagnose the disease, diagnose the disease as early as possible, and to provide more effective treatment. Some of the current research is focusing on:
Biological markers: Finding biological markers in the body that could identify individuals at risk for developing PD early on. Currently, by the time individuals have developed symptoms of PD leading to the diagnosis, it is thought that there has already been a 40-50% decline in the amount of dopamine in the brain; some reports are even higher.
Alpha-Synuclein: Studying mutations in alpha-synuclein and other proteins present in the brain that are involved in the transmitting of signals in the brain. In people with PD we currently understand that alpha-synuclein proteins mutate and build up into clumps called Lewy Bodies. Research is ongoing on how to prevent this mutation and clumping, as well as potential ways to vaccinate against this mutation.
Cellular processes: Other studies are looking into the cellular processes of mitochondria (the power-producers in our cells) which seem to be affected with PD, the role of inflammation in the disease, the role of gut bacteria in alpha-synuclein build up, and the role oxygen plays in the breakdown of dopamine.
Genetics: Genetic research is ongoing to determine any genetic precursors or mutations that may contribute to developing the disease. Pharmacology: Pharmacological research is continually ongoing to determine the best drugs to combat the degenerative physiological process of PD as well as the presenting symptoms. Some drugs that have been approved for use in other diseases are being tested for use with PD, and other brand new drugs are being developed in response to new research results. In addition, new surgically implanted drug pumps are being trialled to more effectively deliver PD medications in order to avoid the common on/off periods of traditional medication prescriptions.
Environment and Toxins: Research continues to track and help determine if there are environmental risk factors to developing the disease such as pollution, exposure to toxins, or circulating viruses. Of note, researchers have been looking into several ‘clusters’ of patients that have been noted worldwide where these patients have all been in the same environment and then have subsequently developed PD. Interestingly, often these clusters develop the young-onset type of PD.
Motor Patterns: PD seriously affects one’s normal movement (motor) patterns. Patients may experience the inability to move when they desire (akinesia), slowness of movement (bradykinesia) or with medication they may develop abhorrent movements (dyskinesias).
Current research is focusing on why these movements occur and how best to treat all types of movement patterns in order to minimize the negative effect on patients’ everyday lives.
Deep Brain Stimulation: Deep brain stimulation can be used in advanced PD and is generally used when medications have failed to help. With deep brain stimulation electrodes are surgically implanted into the brain and stimulated in order to help treat the effects of PD. Research is ongoing on which areas to treat as well as how much and how often.
Exercise: Exercise has already been well proven to help modify PD symptoms and stop them from rapidly getting worse. Ongoing research into exercise is helping to determine which types of exercise are most beneficial and to better define time/effort benefits.
It should be of note that several cellular processes that are involved in the development of PD are related to the development of other neurodegenerative diseases, such as Alzheimer’s Disease, Lewy Body Dementia (which along with the dementia presents with parkinsonian-type body symptoms) as well as Amyotrophic Lateral Sclerosis (ALS). Research is ongoing with focus on the similarities between these types of diseases.
Sanctuary for the Physical Arts provides services for Physical Therapy in Port Townsend.
Physical Therapy services at Sanctuary for the Physical Arts can help you manage your Parkinson’s Disease; we will assist you to maximize your functional potential and delay any physical declines as long as possible.
Portions of this document copyright MMG, LLC.