About parkinson's Disease
In this section, you or a loved one can find out more about medical treatments and alternative therapies for Parkinson’s disease. We also provide practical advice on living with Parkinson’s plus offer tips on how to tap into your support network. Read on and you’ll find answers to some of your questions as well as links to resources with more information. Being informed is an important first step towards becoming an active decision-maker in managing Parkinson’s disease.
What is Parkinson’s disease?
An estimated 5 million people in the world including 90,000 Canadians have Parkinson’s disease. The average age of diagnosis is 60 but up to 20% of diagnoses are in people under 50.
Parkinson’s disease is a progressive disorder of the nervous system.
Our ability to move is controlled by nerve cells in the brain. The nerve cells communicate with each other and to the rest of the body using chemicals called neurotransmitters. In healthy people, these messages are transmitted well but, in people with Parkinson’s, the messages are disrupted.
One of the neurotransmitters involved in the control of movement is called dopamine. In people with Parkinson’s disease, the brain cells that make dopamine are damaged and dopamine production is reduced. As the level of dopamine decreases, slowness of movement and stiffness appear. Tremor is commonly associated with the disease and can occur early in the disease course, usually affecting one side of the body. Abnormal changes in neurotransmitters other than dopamine are seen in Parkinson’s disease and may be responsible for some of the non-motor symptoms that are linked to the disease.
Initially, the signs and symptoms of Parkinson’s disease may be mild and even go unnoticed.
Motor symptoms and the rate they progress can vary substantially from person to person. Certain motor symptoms are often seen in patients with Parkinson’s disease and are referred to as “cardinal symptoms”. These include tremor when at rest, rigidity, gait and posture problems and slow movement.
Non-motor symptoms can affect people with Parkinson's at any stage of the disease. Different patients may experience different symptoms; examples of non-motor symptoms include pain and depression.
Parkinson’s disease affects people, both men and women, of all races, occupations and countries.
A wide range of approaches to the management of Parkinson’s disease have been developed. These may include medications, physiotherapy, speech therapy, occupational therapy as well as lifestyle changes. Consult with your doctor and other members of your health care team about which management strategies are most likely to lead to improved quality of life for you.
Parkinson’s disease can be a challenging disease, both physically and emotionally. It can seriously impact a person’s life, so it’s crucial to reach out and get help and information, take charge of your disease and aim for the best medical support and treatment. It’s important to make your emotional and physical wellbeing a priority, and to ask for help and support when you need it, and nurture relationships with compassionate people who enrich your life. You don’t have to do it alone – there are many things you can do to make living with Parkinson’s easier, as you’ll see in the following sections.
What causes Parkinson’s disease?
The cause of Parkinson’s disease is unknown; however, both genetic and environmental factors may play a role.
Some people are more likely to develop Parkinson’s disease. Factors that may increase risk include:
- Age 60 and older
- Having a close relative with the disease
- Male sex – men are more likely than women to develop Parkinson’s disease
- Exposure to toxins such as pesticides
- Rural living
- Drinking well water
- Parkinson’s disease is a progressive disease of the nervous system.2,3
- The exact cause of Parkinson’s disease is unknown; however, both genetic and environmental factors may play a role.1,6
- An estimated 5 million people in the world including about 90,000 Canadians have Parkinson’s disease.5
- The average age of diagnosis is 60 but up to 20% of diagnoses are in people under 50.5,6
- Parkinson’s disease affects people, both men and women, of all races, occupations and countries.6
- Tremor is the first symptom to appear in 70% of people with Parkinson’s disease. About 30% never have a tremor.5
- Parkinson’s disease was first described by English physician Dr. James Parkinson in 1817.4
- World Parkinson's Disease Day is celebrated on the 11th of April.4
- Parkinson Society of Canada
- Parkinson’s UK
- Mayo Clinic
- European Parkinson’s Disease Association
- Parkinson’s Society of British Columbia
- Harrison’s Principles of Internal Medicine 18th edition.
What are the effects of Parkinson’s disease?
Parkinson's disease is chronic and progressive, but is not considered to be life threatening. The way that it progresses varies between patients.
Movement symptoms can vary from patient to patient. The extent to which these symptoms are bothersome depends on the activities in your daily life.
Some people with Parkinson's disease have mild symptoms for many years, while for others the symptoms affecting movement progress quickly. Non-motor symptoms affect most people with Parkinson's at all stages of disease; however, the symptoms themselves also vary quite a bit between patients. People with Parkinson's may find that non motor symptoms such as depression or fatigue have a greater impact on daily life than do movement problems.
The following are motor and non-motor symptoms that may be experienced by people with Parkinson’s disease.
- Resting tremor – shaking of a hand, arm or leg while at rest. Tremor is the first symptom to appear in 70% of people with Parkinson’s disease. About 30% never have a tremor.
- Stiffness in muscles and joints (rigidity) – can limit movement and cause pain.
- Slowness of movement – called “bradykinesia” – with time, simple tasks can become difficult and time-consuming, your steps shorten and you may drag your feet
- Problems with posture – you may become stooped
- Problems with balance – you may have trouble standing up, maintaining your balance and walking
- Small handwriting
- Reduced facial expressions
- Reduced eye blink
- Softening of the voice
- Difficulty swallowing
- Freezing – temporary and involuntary inability to move
- Problems related to the sense of smell
- Mood problems – such as depression
- Sleep problems
- Gastrointestinal troubles such as constipation
- Decrease in blood pressure when standing – also called orthostatic hypotension
- Sexual and urinary problems
- Changes in the ability to think – such as dementia
Are there other associated conditions?
People with Parkinson’s disease may also experience other symptoms such as pain (in specific areas of the body or all over the body), sexual dysfunction (decrease in sexual desire or performance); bladder problems (for example, being unable to control urine), smell dysfunction (for example, difficulty identifying certain odors) and difficulties in thinking (this usually happens in the later stages of Parkinson’s).
Support means everything
No man is an island: in other words, it is not helpful to try to live with Parkinson’s all by yourself. It is normal for anyone living with a chronic disease to feel isolated sometimes – especially when you have to adapt your routine to your symptoms or their effect on your daily life; when you have to see doctors more often than other people do, or learn a lot of new medical information. It may seem difficult at first, but if you or a loved one has Parkinson’s, it’s essential to discuss the symptoms with a medical professional. Seeking help will not only reduce the physical discomfort, it can be very empowering to talk openly about any physical or emotional issues associated with the condition.
Over time, there can indeed be challenges for a person with Parkinson’s. There may be physical challenges to deal with; bouts of loneliness, depression, frustration and worry about sharing life with others. But friends and family can help, along with your team of health care professionals. Speak up and ask your doctors and nurses whatever you want to know – their expertise can be a great help. Tell the people you trust how you’re feeling and don’t be embarrassed to accept their help or comfort. It’s only human to need frequent, nurturing contact with each other – the people you care about should continue to enjoy spending time with you. When you’re ready, you can help inform people about Parkinson’s disease and make life better for others living with it too. Try not to hide yourself away unless rest and solitude is what you really need.
When you have Parkinson’s disease, it’s essential to keep the lines of communication open – with your family, friends and even trusted coworkers. You can help them understand what it’s like to live with Parkinson’s and what can help you feel better and live life more fully. Strive to talk openly about it – especially with the people you like, and who make you feel you can safely be yourself.
Here are some tips and helpful insights we’ve learned from patients:
- Ask those closest to you to learn about your condition. This will help them understand your symptoms better and how you feel about them. It may give them new ideas about how to make things easier for you in day-to-day life, and the awareness alone will make you all more comfortable dealing with Parkinson’s. Mutual understanding often arises from education – friends and relatives can read this or other Web sites, look up reliable sources of information in libraries, or go with you to some of your appointments. Contacting the Parkinson Society Canada is another option.
- Let them know you need their support. This could be just some welcome empathy when you need to talk – even about things not directly related to Parkinson’s. Nourish your important personal relationships – share how you are feeling physically and emotionally. There will be times when you experience more pain and limitations, and are frustrated. But at other times you’ll feel so good you won’t be thinking about Parkinson’s at all.
- Always be open and honest about your Parkinson’s disease. It’s the only way people can help you. Search out proper medical support and try not to let your Parkinson’s disease dictate your life. And if you’ve ever concluded that your doctor or loved ones aren’t doing enough because “They don’t know what it’s like”, perhaps that’s because you haven’t fully told them. Help them to help you by letting them know what you’re experiencing and what you want and need from them.
When we stop doing the things we love, our mood drops, symptoms seem worse, and it becomes even harder to get motivated. Keeping fun in your life is absolutely essential – make it a top priority. It boosts your mood, your relationships, and your energy level. Doing harmless things you enjoy “just because” is good for your health. Find one activity you love – even a simple or small one that takes little time – that without fail you can make part of each week, and another you can do every day. This might be something you do alone, like arts and crafts or a short walk to a friend’s house. Or something you do with others, like a yoga class or a book club. Cultivate special things you really enjoy. Once these become routine, you’ll start feeling better and will want to add new ones to your schedule.
Parkinson’s disease is different for every patient, with treatment tailored to each individual case. The key is to closely follow your health care team’s instructions for the steps and medications to take. Be persistent in following your treatment, and be patient: it can take a while for some medications to work. Keep notes and communicate regularly with your doctor about your progress and the effects of your treatment. If you feel there’s a problem with your regimen, or are experiencing any side effects, talk to your doctor right away about trying something else. Don’t hold back from asking questions. Be pro-active and involved in the decision-making about your health – there are many things to try, so don’t be discouraged if one treatment isn’t working – another one might work better.
For most people, regardless of having a chronic disease or not, exercise, healthy eating and good sleep habits are recommended. A healthy lifestyle generally increases quality of life. Before making any lifestyle changes, talk to your doctor.
People with Parkinson’s disease who exercise tend to do better than those who don’t exercise. Exercise can improve your quality of life by increasing your level of fitness, strength, flexibility and balance. It may also reduce depression and stress.
Make sure to discuss any plans for new activities with your doctor. If you experience shortness of breath of severe pain while exercising, be sure to seek medical attention.
Choose exercises and physical activities you enjoy. This will help you stay with your program and the positive feelings you have.
Ways of staying motivated include:
- Start small and work up to a more challenging routine
- Find an exercise buddy or join a group
- Keep a diary or logo of your exercise goals and results
- Keep things interesting by changing your routine regularly
- Reward yourself when you meet your goals
- Consider timing – when planning your exercise program factor in your medication schedule, sleep patterns and the time of day when you generally feel your best
Elements of exercise
A good exercise program includes different types of exercise such as:
- Aerobic fitness – working your heart and lungs – can have a positive effect on stiffness, slowness, mood and quality of life
- Strength training such as lifting free weights – this can improve your strength so you can perform everyday activities such as getting up from a chair
- Flexibility – stretching exercises to help you keep a good range of movement
- Balance exercises – improving your balance can help decrease your risk of falling
- Think about your posture – sit and stand tall with your head aligned above your shoulders
Here are some activities you may want to consider; however, this is not a complete list. Most activities that keep you moving are options. Make sure to discuss any plans for new activities with your doctor.
- Brisk walking
- Racquet sports
- Yoga or chair yoga
- Tai chi
- Lawn bowling
For most people, healthy eating means having a balanced diet that includes lots of fruit vegetables and whole grains plus drinking water and other fluids. For people with Parkinson’s disease, good nutrition can help you attain and maintain a healthy weight and energy level. Check out Canada’s Food guide for more information.
People with Parkinson’s disease can experience challenges associated with eating and diet. Here are a few situations that may come up and some recommendations for dealing with them.
About 70% of people with Parkinson’s disease experience unplanned weight loss. This can be due to diminished sense of smell and taste, chewing and swallowing problems, depression, nausea and constipation. To avoid weight loss, try eating small frequent meals, experiment with spices to enhance food flavour and as much as possible, prepare meals when you are feeling your best.
Many people with Parkinson’s disease experience swallowing problems – this includes a tendency to swallow less often and less completely. As a result, about 70% of patients have too much saliva that pools in the mouth. One way of dealing with this is to suck on a hard candy (ideally sugarless) – this can stimulate swallowing and control drooling. If you or a loved one is experiencing swallowing problems, ask your doctor for a referral to a speech therapist who will do a swallowing assessment and recommend lifestyle changes.
Some people with Parkinson’s disease are overweight or become overweight. Extra weight can lead to additional health problems. Talk to your doctor or dietician about a weight loss program. It’s a good idea to eat nutritious meals, control your portions and be as active as possible. If you find yourself eating compulsively (binge eating), talk to your doctor. Binge eating may be a side effect of medication.
Constipation is a common problem for people with Parkinson’s disease. Fortunately, it can almost always be treated with lifestyle changes. Here are some approaches you can try: drink 6 to 8 cups of fluid each day (good choices are water, soup, juice and milk), increase your activity level and eat high fibre foods such as oatmeal, bran, fruit and vegetables. Make sure to talk to your doctor if the constipation continues.
Maintaining bone health is important for everyone. Men and women with Parkinson’s disease are at increased risk of developing osteoporosis. Fractures are more likely in people with osteoporosis. To reduce the risk of developing osteoporosis, the following are recommended: increasing consumption of calcium and vitamin D (ask your doctor if supplements would be an acceptable option for you), eating foods high in calcium and regular exercise. Consumption of appropriate levels of magnesium in food is also recommended for healthy bones. Consult www.dietitians.ca for daily recommended levels and suggestions of foods containing magnesium.
Anyone can fall; however people with Parkinson’s disease are at a higher risk of falling due to some of the symptoms of the disease. Falls can lead to accidents and hospitalization. Knowing what you can do to prevent falls can help reduce your risk of falling and build your confidence.
What can I do at home to reduce my risk of falling?
Make repairs to any unsafe areas of your home, for example: broken handrails on a staircase, worn or broken steps on walkways
- Keep your house well lit – increase light bulb wattage in any darker areas
- Clear clutter
- Use a non-skid bathtub or shower mat
- Think about switching to a shower chair and hand-held shower
- Store items on lower shelves
Tips for good balance:
When you walk, don’t let your center of gravity shift forward over your feet
- If you have to lean forward, keep your feet apart with one foot in front of the other
- Hold the counter to stay steady
- Sit down to dress
- Be very careful when turning or moving backwards
- Look where you are going and avoid rushing
- Try not to make sudden movements or changes in posture
Practice good sleep!
Avoid stimulants (for example, coffee, tea, caffeine) in the evening
- Work towards establishing a regular pattern of sleep
- Make sure you have comfortable bedding and bedroom temperature
- Consider assistive devices, such as a bed lever or rails to aid with moving and turning – these will help you achieve a comfortable position for sleep
- Avoid naps during the day
- Adopt an exercise program
Complementary and alternative treatment
Specialized therapies include physiotherapy, occupational therapy, and speech therapy. Complementary therapies may also help. Before trying any of these therapies, make sure to talk to your doctor.
It is often recommended to consult a physiotherapist shortly after a Parkinson’s disease diagnosis. In the early stages of Parkinson’s disease, a physiotherapist can help you maintain your fitness levels so you can be active and independent. In later stages of the disease, physiotherapy can help your posture, balance and ability to perform the activities of daily life.
An occupational therapist will evaluate your ability to do the things you do in your daily life. These include dressing, eating, bathing, walking and sleeping. The occupational therapist will offer strategies and suggest assistive devices (e.g., shower seats, grab rails) to help you manage these activities in your life. Ultimately, occupational therapy will help you maintain your work and leisure activities as well as your ability to take care of yourself for as long as possible.
Also known as speech language pathologists, speech therapists can work with you to improve your speech and swallowing. Speech problems occur in about 40% of people with Parkinson’s and can lead to social withdrawal and isolation.
Surgical deep brain stimulation can also be used in certain patients. With DBS, electrodes are inserted into specific areas of the brain. The purpose of this is to try to decrease Parkinson’s disease symptoms when they can no longer be improved by modifying the medications; it can also help reduce fluctuations in the response to levodopa and involuntary movements called dyskinesia that develop in patients with more advanced disease who are treated with levodopa. This treatment is most often offered to people who no longer respond satisfactorily to levodopa and combinations of other medications used to treat symptoms of Parkinson's disease. DBS is associated with certain risks such as infection, stroke and brain hemorrhage.
“Complementary therapies are non-conventional health treatments, often based on ancient systems, which many people use alongside standard Western medicine. The range of such therapies is wide, with the majority taking a Holistic approach: that is, treating the patient as a whole, rather than just addressing the symptoms. It is this approach which makes complementary therapies so appealing, particularly to people with Parkinson’s.” - European Parkinson’s Disease Association
- Tai chi - an ancient form of Chinese exercise which can improve flexibility, balance and muscle strength.
- Music or art therapy
- Pet therapy – having a dog or a cat can help your physical and emotional health
- Alexander technique – by focussing on muscle posture, balance and thinking, reported to help reduce muscle tension and pain
Currently there is no cure for Parkinson’s disease; however, medications can provide relief or decrease your symptoms.
The main goal of medical treatment of Parkinson’s disease is to reduce the effect of symptoms on your daily life. Medication can have a positive effect on the disease, but it may also have side effects. It’s important to balance the therapeutic effect of a medication with its side effects. Timing of when medications are taken can be a key element in maintaining this balance.
Effectiveness of certain medications for Parkinson’s disease can be reduced when combined with drugs for other health conditions. It is therefore important to seek advice from your doctor or pharmacist regarding the use of any new drug.
Before starting any Parkinson’s disease medications, your doctor will probably want to discuss a few things with you such as:
- Your specific symptoms, other diseases and conditions you have, as well as other prescription and non-prescription drugs you take
- Your lifestyle, preferences, needs and goals
- The benefits and harms of the different medications that can be used to treat Parkinson’s disease.
As Parkinson's is a very individual condition, medication is prescribed and adapted to individual needs and can help to achieve good symptom control. Response to medication varies from person to person and not every medication will be considered suitable for everyone.
Many types of medications are used to treat Parkinson’s disease. All of these treatment options must be validated and discussed with your doctor.
The symptoms of Parkinson’s disease are quite varied, but can be grouped generally into motor symptoms such as slow movement and stiff and inflexible muscles and non-motor symptoms such as depression, balance problems, loss of sense of smell, sleeping and memory problems.
The main goal of these medications is to lessen motor symptoms, or the symptoms that affect movement in people with Parkinson’s disease.
Oral medications commonly used to treat motor symptoms in early Parkinson’s disease include levodopa/carbidopa, monoamine oxidase (MAO)-B inhibitors, and dopamine agonists. As Parkinson’s disease advances, many patients find that the benefit from oral levodopa/carbidopa wears off after 4-5 hours and at some point, it may only last about 2 hours. The time when the medication reduces motor symptoms is called "on" time, and the time when medication is not providing benefit is called "off" time.
Levodopa (or L-dopa)
Levodopa is a natural chemical that is converted to dopamine in the brain. Levodopa, the medication, is prescribed in combination with carbidopa or benzerazide; two drugs which help more levodopa to get to the brain and reduce side effects such as vomiting. The motor symptoms of people with Parkinson’s disease,such as muscle rigidity and movement problems, can improve with levodopa treatment. Levodopa treats motor symptoms in early Parkinson’s disease and can be used to help symptom fluctuations at all stages including later Parkinson’s disease.
Side effects of levodopa include nausea, vomiting, light-headedness, loss of appetite, sleepiness, hallucinations and involuntary movement (dyskinesia).
The effect of levodopa may “wear off” in between doses. If this happens, consult your doctor, your dose or its timing may need to be adjusted.
Dopamine agonists stimulate the parts of the brain influenced by dopamine and are used to treat motor symptoms; however, they are considered to be less effective than levodopa. These drugs mimic the effects of dopamine.Dopamine agonists have a longer duration of action than levodopa and can be helpful in reducing “off” time or to generally enhance the positive effects of levodopa.
Side effects with dopamine agonists are similar to those that occur with levodopa. However, certain side effects, including daytime sleepiness, hallucinations, confusion and swelling of the legs are more likely with dopamine agonists than with levodopa. Involuntary movement is rarely seen with dopamine agonists when combined with levodopa. Side effects of dopamine agonists also include impulsive behaviours such as uncontrollable gambling and compulsive shopping (called impulse control disorders).
Monoamine-oxidase-B (MAO-B) inhibitors
These medications act by preventing the breakdown of dopamine in the brain so more dopamine is available to be used by the brain. MAO-B inhibitors can be used alone in early Parkinson’s disease or in combination with other medications, including levodopa in later stages of the disease. When used with other medications, MAO-B inhibitors can decrease “off” time and lengthen “on” time".
Side effects of MAO-B inhibitors include hallucinations, headache, weight loss, mild nausea, dry mouth, constipation, light-headedness and involuntary movement.
Catechol O-methyltransferase (COMT) inhibitors
COMT inhibitors prolong the effect of levodopa by blocking an enzyme that is responsible for breaking down levodopa before it reaches the brain. COMT inhibitors may improve response to levodopa , i.e., reduces “off” timeincluding in advanced Parkinson’s disease.
Side effects include: involuntary movements (mainly result from an enhanced levodopa effect), diarrhea, light-headedness, nausea, vomiting, discoloration of urine (reddish-brown or rust-colored), confusion, hallucinations and reduced impulse control.
Amantadine may be used in later stage disease withlevodopa/carbidopa therapy to control involuntary movements.Amantadine is recommended for use in the treatment of advanced Parkinson’s disease.
Side effects may include weight gain, thinking problems, dry mouth, nausea, dizziness, insomnia, purple mottling of the skin, ankle swelling or hallucinations.
Anticholinergic medications act by correcting an imbalance between two chemicals in the brain. These medications are used to treat the early symptoms of Parkinson’s and may help reduce tremors.
Side effects include: impaired memory, confusion, hallucinations, constipation , dry mouth, blurry vision, and problems urinating.
As Parkinson’s disease progresses, the above-mentioned oral therapies may no longer be able to adequately control severe and disabling motor symptoms. At this advanced stage, you may benefit from more advanced therapies. The treatments offered will depend on your general health.
Two device-aided treatments that provide different kinds of continuous stimulation are currently available to help decrease symptoms, as follows:
1- DBS (deep brain stimulation)
DBS is a surgical treatment that uses an implanted medical device to deliver electrical pulses to key regions of the brain. These electrical impulses alter brain activity in a way that reduces symptoms of Parkinson's Disease, such as tremors and stiff muscles.
Once the stimulator is turned on, side effects from stimulation to the brain may include light-headedness, tingling sensations, speech problems, balance problems, muscle tightness or pain, and new involuntary movements or slowness of movement.
2- LCIG (levodopa-carbidopa intestinal gel)
LCIG is a dopaminergic drug combination of levodopa and carbidopa delivered in the form of a gel via the LCIG infusion system. This system is a pump that infuses the drug non-stop through a soft plastic tube. The latter is implanted directly into the small intestine, just like a feeding tube. LCIG is indicated for the long-term treatment of motor fluctuations.
Side effects may include upset stomach, vomiting, involuntary movements (dyskinesia), constipation, decrease in weight and falls.
Non-motor symptoms are very common in Parkinson’s disease with an estimated 90% of patients experiencing at least one non-motor symptom.
Non-motor symptoms can be more bothersome than motor-symptoms. Examples of non-motor symptoms include constipation, drooling, urinary symptoms, sexual dysfunction, pain, depression or anxiety, sleep disorders as well as cognitive changes such as memory problems. Sometimes just making some changes to medications for your Parkinson’s disease can help. However, if thisapproach doesn’t work, specific treatment for the non-motor symptom may be required. For example, medications for depression can be used. If you think you are experiencing non-motor symptoms, talk to your doctor, a wide number of treatment options are available.
Please note that the information on this Web site should not be used as a substitute for seeking medical advice or treatment from a physician. You should not use this information to diagnose or treat a medical condition or health problem. Speak to your health care provider if you have any questions about your medical condition, symptoms or treatment options.
The Parkinson Society Canada (PSC)parkinson.ca
The Parkinson Society Canada (PSC) is the national voice of Canadians living with Parkinson’s. Through regional partners and 240 chapters and support groups, PSC provides education, support, and advocacy on behalf of Canadians living with Parkinson’s. PSC also funds research that helps expand knowledge on prevention, diagnosis and treatment of Parkinson’s.
Parkinson Society Southwestern Ontarioparkinsonsociety.ca
Parkinson Society Southwestern Ontario enhances the quality of life and care for people living with Parkinson’s in Southwestern Ontario.
Parkinson Québec is a not-for-profit organization that serves as a reference for the Parkinson’s community and health care professionals and acts as the provincial voice of the Regroupement des régions Parkinson Québec (RRPQ).
The Parkinson Society British Columbia (PSBC)parkinson.bc.ca
The Parkinson Society British Columbia (PSBC) is a not-for-profit charitable organization that provides education, community outreach, scientific research, advocacy and public awareness to people affected by Parkinson’s disease.
Parkinson Alberta is a charitable organization that helps make every day better for Albertans affected by Parkinson disease. They provide support services, education, advocacy and funds for research.