PD 101
If you have been recently diagnosed, or if someone close to you has been diagnosed with Parkinson disease (PD), it is important to know that there are people to help, resources to educate, and groups to support.
How Parkinson Association of Alberta can help
We recognize that every person is unique and so is the treatment of PD. We provide support, services, and programs for all people with Parkinson disease and their families. These supports and services include one-on-one/family support counselling, support groups, information and resources, education sessions, assistance in identifying and locating community and government resources, and much more.
To find out more please email us at info@parkinsonassociation.ca or call us toll-free at 1-800-561-1911.
At Parkinson Association of Alberta, we understand how difficult it can be to receive a Parkinson disease or Parkinson’s Plus Syndrome diagnosis. There is no one way to deal with it; circumstances and experiences are unique for every person with Parkinson’s, as well as their care partners, family members and friends.
It can be overwhelming; and there may be feelings of anger, confusion, numbness or sadness. It’s normal to have those feelings, just know you are not alone and that Parkinson Association of Alberta is here to help. Ultimately, living well with Parkinson disease requires knowledge and support. And, as Parkinson’s is a progressive disease that changes over time, so too will your information and support needs change. Working together with you, Parkinson Alberta can be an integral resource and support every step of the way.
Parkinson disease is a progressive neurological disorder. It mainly affects parts of the brain controlling movement. Cells in the brain (in a place called the substantia nigra) produce an important chemical called dopamine. When a person moves, dopamine is involved in producing movements that are smooth and coordinated. Many people have symptoms between the ages of 50 and 60 years, but some have symptoms at a much younger age (young onset), others at a much older age. As symptoms start to interfere with how one is able to do everyday things, there are treatments that can help.
Life with Parkinson’s is going to look different for everyone, and how it looks for you will likely change over time. We know there are lots of changes happening to your body and you likely will not understand many of them, or know how to manage. This page will hopefully provide you with some insight and tips to manage some of the more common PD symptoms. We understand that it is frustrating to have a body that won’t cooperate. It’s important to remember to be patient with yourself – learning to manage your PD is a marathon, not a sprint.
There are four main motor symptoms that a doctor will look for in making a diagnosis of Parkinson disease:
- Tremor: An involuntary trembling or shaking that usually begins in a limb (often a hand or fingers) when it is resting.
- Slow movement (bradykinesia): Over time, movement may slow, making simple tasks difficult and time-consuming. Steps may become shorter and feet may drag when walking. It may be difficult to get out of a chair, off of a bed or out of a car.
- Rigidity: Stiffness of muscles that may occur in any part of the body. This can be painful and limit range of motion.
- Postural instability: Posture becomes stooped, and/or there may be difficulties with walking and balance (including possible falls).
Parkinson disease is primarily thought of as a movement disorder with symptoms that one can see – tremor, slowed movement (bradykinesia), rigidity/stiffness and postural instability. However, there is a host of other symptoms that do not affect movement and are much harder (if not impossible) to see. These are known as non-motor symptoms and they encompass a wide range of health concerns:
Autonomic Dysfunction
- PD & Constipation
- PD & Constipation: Prevention and Management
- Orthostatic Hypotension
- Parkinson’s and Sweat Issues
- Sexual Dysfunction in Parkinson’s
- Restless Leg Syndrome
Most people with Parkinson’s will experience some changes or decline in their mood and thinking; while others may also experience psychiatric disturbances including, but not limited to depression, impulse control or hallucinations.
- Anxiety & Depression
- Apathy
- Cognitive Issues
Sleep Issues
From excessive daytime sleepiness to insomnia, sleep issues are considered an inherent part of Parkinson’s with prevalence rates ranging from 75-98% within the Parkinson’s population.
Speech & Swallowing
For people with Parkinson disease or Parkinson’s Plus Syndromes, the seemingly simple acts of speech and swallowing are not something that can be taken for granted. Speech issues can include a variety of challenges from a softening of the voice to an abnormally fast rate of speaking. For people with Parkinson disease and Parkinson’s Plus Syndromes the simple act of eating and drinking is not something that can be taken for granted. In fact, more than 80% of people with Parkinson’s will experience difficulties with this process.
The good news is early intervention and treatment can help ensure optimum health, safety and quality of life.
Speech
- Communications & Parkinson Disease
- Parkinson Pulse – Summer 2019 Issue – Improving Communications
- [VIDEO] PD & Speech
- [VIDEO] Q&A with a Speech Language Pathologist
Swallowing Issues
A doctor, often a neurologist or family doctor, will take a medical history and conduct an examination. They will make the diagnosis based on what they see and, on the information provided to them. There is no blood test or laboratory exam that diagnoses PD. An MRI or CT scan may be ordered so the doctor knows that nothing else is going on (tumor, small stroke or other things). Medication is typically started when symptoms interfere with what you want to do.
For reasons that we don’t yet understand, the cells that produce dopamine start to not function properly. They don’t make enough dopamine for movements to happen the way they did when there was enough dopamine in the system. To date, no one knows exactly how or why PD starts. Many researchers are trying to find the answers; and as it stands it looks as if aging, things in the environment (toxins or poisons) and abnormalities in some genes may trigger the changes in the body that lead to Parkinson disease.
Did you know “the array of pharmacologic and surgical treatments available for the treatment of idiopathic Parkinson disease (PD) is broader than for any other degenerative disease of the central nervous system1”?
There is currently no cure for Parkinson disease and no treatment has been proven to slow, stop or change the progression of Parkinson’s. The goals of Parkinson disease treatment vary from person to person. Generally speaking however, the goal is to provide control/management of symptoms for as long as possible while minimizing adverse effects and focussing on addressing the symptoms that undermine a patient’s quality of life. Treatment options for Parkinson disease can be divided into three “categories”: pharmacologic (medications), surgical, and nonpharmacologic (non-medication).
All persons with Parkinson disease will eventually need to take medications. There are currently no disease modifying drugs for Parkinson disease; however there are treatments that offer significant symptom relief of the motor symptoms.
When medications alone are not enough to control the symptoms of Parkinson disease and/or when extreme motor fluctuations impede optimum functioning, surgical options may be considered as treatment. Surgical procedure options for Parkinson disease include deep brain stimulation and lesioning surgeries (thalamotomy, pallidotomy and subthalamotmy) – which are both types of brain surgery; and Duodopa which is an alternative medication delivery system. Surgical procedures can provide some people with better control of their symptoms, but they are not a cure. One’s Parkinson’s will continue to progress and most people will still need to take some medication.
What are Lesioning Surgeries?
Lesioning involves making targeted damage (a lesion) to some of the cells in a specific area of the brain that contribute to the symptoms of Parkinson disease. These are named after the region of the brain targeted and include thalamotomy, pallidotomy and subthalamotmy. Lesioning surgery can be an effective treatment for Parkinson’s, but with irreversible side effects and the development of other treatments (ie: DBS) it is not as common a treatment option as it once was.
DBS
Duodopa
In the broadest of terms, the main clinical features that distinguish Parkinson’s Plus Syndromes from Parkinson disease are:
- Limited or no response to levodopa
- Lack of or an irregular resting tremor
- Symptoms present on both sides of the body at onset
- Early issues with balance and falls, cognitive issues and speech and swallowing issues
- Faster progression
- Progressive Supranuclear Palsy (PSP)
- Multiple System Atrophy (MSA)
- Corticobasal Syndrome (CBD)
- Lewy Body Demential (LBD)
With Parkinson disease, over time symptoms will likely get worse and will likely change to include different symptoms than when you were first diagnosed. This usually happens slowly, over years. Life expectancy for those with PD is the same as those without Parkinson’s.
How is Parkinson disease diagnosed?
There is no specific brain scan or laboratory test available to confirm the diagnosis of PD. After a detailed physical examination and medical history are taken, a doctor may make a diagnosis of PD. Other tests may be done to rule out other conditions which may resemble PD. A movement disorders neurologist has the most experience in diagnosing PD, but many people are diagnosed and treated well by family doctors or other neurologists.
Is there a cure?
At the present time there is no known cure.
Is PD a genetic disease?
A genetic cause of PD appears in only a very small number of cases, approximately 5%. While it may appear to run in families, researchers are looking at environmental factors shared by the family or community in addition to examining potential genetic links.
Several genetic markers (LRKK2, PARKIN, etc) have been associated with PD but having the marker does not mean a person will get PD. The vast majority of cases of Parkinson disease are from unknown causes.
Is PD contagious?
Parkinson disease is not contagious. A person cannot “catch” PD and there is no need to worry about being in close contact with someone who has it.
How can Parkinson Association of Alberta help me or my loved one?
Parkinson Association of Alberta is the only Alberta-based organization dedicated to supporting Albertans affected by Parkinson disease through support services, programming, education and the contribution of funds for research.
