Recently Diagnosed? Start here.
Whether it’s yours, or that of your spouse, parent, or loved one, a new diagnosis can be scary.
Wisconsin Parkinson Association is here to walk with you on this journey. WPA exists to provide hope, community, support, and resources for you and your loved ones.
Parkinson disease affects about 1 in 100 Americans over the age of sixty years. The average age of onset is about sixty. Parkinson’s will not shorten your life, but there is currently no cure. After receiving a Parkinson’s diagnosis, you can continue to live a full and happy life. Self-education, appropriate treatments, and support from loved ones are crucial.
Read more below about Parkinson’s, and explore the other resources WPA has to offer. Ask questions and learn as much as you can. With WPA, you will find a community of support.
We are here for you!
Parkinson disease is a neurodegenerative disorder and chronic movement disorder. Parkinson’s occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die. It is variable in its progression, and treatable but not curable. It is not contagious and it is rarely inherited.
Parkinson disease does not shorten your life expectancy, although there is currently no cure. It is chronic and progressive, but is a treatable neurologic disease. The goal is treatment is to alleviate your symptoms, prevent injury and improve your quality of life.
There are 4 “cardinal” symptoms: tremor, bradykinesia, rigidity and postural instability.
- TREMOR: Resting tremor is present in roughly half of all people with Parkinson’s. Parkinson tremor has regular rate and rhythm, usually beginning on one side of your body in the hand, leg, or jaw. It is most obvious when your affected limb is at rest or when you are feeling stressed. Tremor is rarely disabling and usually disappears during sleep or is lessened with intentional movement, such as reaching out to shake hands or gripping your steering wheel.
- BRADYKINESIA: Slowness of movement, or bradykinesia, is often the most disabling symptom of Parkinson’s. You may feel hesitation in starting to move (“freezing”), small steps or a shuffling gait, and a loss of fine motor control affecting manual dexterity. This symptom is particularly frustrating because of its effect on your function. Early signs of bradykinesia are lack of arm swing on the affected side, small handwriting, masked face, soft speech, and difficulty getting out of a couch or car.
- RIGIDITY: Rigidity refers to increased muscle tone that you feel during movement of the arm, leg, and neck. Rigidity will be more pronounced on one side of your body, or possibly in your trunk. This may feel like tightness in your limbs.
- POSTURAL INSTABILITY: Impaired balance and coordination causes you to develop a forward or backward lean and to fall easily. If you are challenged from the front or when you start to walk, if you have a backward lean, you will have a tendency to fall backwards (“retropulsion”). Postural instability can cause you to have stooped posture, with your head bowed and shoulders dropped. This can be the most serious symptom of Parkinson disease because of the risk of falls.
Secondary symptoms may include: small handwriting, quiet voice, anxiety, depression, constipation, sleep disturbances and more. Learn more on the “What is Parkinson Disease” page.
Dopamine is a chemical neurotransmitter found in the brain that helps to control movement, coordination, and balance. People with Parkinson disease have impaired or damaged dopamine producing cells.
Loss of the dopamine-producing neurons results in an inability to control movements in a normal manner. There are several theories why this happens, including genetics, exposure to toxins like heavy metals or organic solvents, or oxidative stress, but a cause is not currently known.
Many people recently diagnosed with Parkinson’s postpone starting medication, out of fear they will develop a tolerance and require higher doses later on. This is not true. Medications are the key to managing your symptoms. The timing and dose of each medication is very important. Have an honest conversation with your doctor about current medications, and any side effect you notice from your Parkinson’s medications.
Exercise is crucial in treating your symptoms and potentially slowing the progression of your disease. Exercise helps with balance, strength, flexibility, and fall prevention. Exercise has also been shown to help with the production of a variety of brain chemicals and neurotransmitters, and may help people with depression.
Find an in-person class or group near you, or join WPA’s online Movement & Music classes live on Facebook each week. You can also find recordings from past classes and more resources here.
Deep brain stimulation (DBS) is an FDA approved surgical therapy that involves implanting an electrode into a targeted area of the brain. The electrodes are stimulated through a connection to a pacemaker-like device located under the skin in the chest. DBS will not cure PD but may help to alleviate some of your symptoms. Talk to your doctor to learn more.
You may also want to look into physical, occupational and speech therapy, focus on a balanced and nutritious diet, and explore holistic medicine.
When you received your Parkinson’s diagnosis, you probably had many thoughts running through your mind based on what you have heard or read about Parkinson’s. Here are few of the most common myths about the disease.
- Myth #1: Everyone with Parkinson’s has tremors
While tremor is the symptom most associated with Parkinson disease, not everyone experiences tremors. Parkinson’s is highly individualized, and you can have a variety of motor symptoms, such as slowness of movement, rigidity, postural instability, and non-motor symptoms including sleep problems, mood disorders, constipation and speech issues. You may never experience tremor.
- Myth #2: Parkinson’s is an older person’s disease
The average age of diagnosis is 60. 10-20% of people with Parkinson’s experience symptoms before the age of 50. People diagnosed with Early-Onset Parkinson’s disease experience the same symptoms, and they will face different challenges as they may still be working or have young children at the time of diagnosis.
- Myth #3: Parkinson’s is fatal
A diagnosis of Parkinson’s is not a death sentence! Parkinson’s can increase your fall risk or risk of infection, which can lead to health issues and possibly death, but it is not a direct killer. It is important for you to actively participate in your quality of care to ensure your quality of life following your diagnosis.
- Myth #4: Symptoms and disease progression are the same for everyone
This disease is unique to each person. You will experience the disease differently from others who also have it. You may have very visible symptoms, or you may experience more invisible, non-motor symptoms. Treatment plans will vary for each individual and your care providers will treat you uniquely from others.
- Myth #5: Parkinson’s is diagnosed through a blood test or an X-Ray
Currently, there is no blood test, brain scan or other test available to make a definitive Parkinson’s diagnosis. Your physician may use these tests to rule out other diagnoses that look similar to Parkinson’s. Doctors diagnose Parkinson’s by using your medical history, answers to questions, and a physical examination. This is why it is important to see a physician who specializes in Parkinson’s as their knowledge and experience will be critical in making the correct diagnosis.
You have just received a life-changing diagnosis. You are not alone. Your spouse, friends, and family might not understand what you are going through right now, but you are not alone.
Find a support group in your community, or join an online group. Seek out others who are experiencing the same things you are. It can be intimidating at first, but they were all in your shoes at one point, and they all want to help.
Prior to COVID, groups met all over the state of Wisconsin. Now many groups meet online – and you could join from anywhere! Contact our office for more information, or find a group in your area here.
View the Resources page above, or click on each of these, for more information on:
- Support & Exercise Groups in your area
- Video recordings from recent programs
- “Ask the Expert” videos
- Wisconsin Parkinson Magazine
- Exercise Resources, including many at-home opportunities
- Recent news about Parkinson’s
- Local Medical Professionals who treat people with PD
- Community Resources to support you on this journey
How can WPA help?
Wisconsin Parkinson Association provides hope, community, support, and resources for people with Parkinson’s and their loved ones. We provide FREE education programs, support groups, exercise classes, information & referrals, and more. Contact our office to get involved!