Learn About PD
"Parkinson's disease progresses over time, often taking years before symptoms appear. Because it develops gradually, most people have many years of productive living after being diagnosed." - https://www.parkinson.org/
Apathy and PD
One of the most challenging and puzzling non-motor symptoms of Parkinson’s disease (PD) is apathy. Apathy is defined as a feeling of indifference or a general lack of interest or motivation in activities. People with PD may feel that they have lost their “get up and go”, and can’t muster enthusiasm for anything – even things they once engaged in and enjoyed.
Are there other conditions that can resemble Parkinson’s disease?
FAQ
There are a number of conditions that present some of the signs and symptoms of Parkinson’s, but that do not respond in the same way to typical treatments. These diseases are referred to as Atypical Parkinsonisms, and are most likely to affect people in their 50s and 60s, although this can vary.
Many other conditions involving movement -based issues mimic Parkinson’s Disease. A patient therefore may show no signs of developing PD but will experience very similar symptoms. These conditions can be particularly challenging for non-specialists and can sometimes lead to misdiagnosis.
Can I get Parkinson’s Disease if I’m under 60?
FAQ
Parkinson’s Disease isn't just seen in people of advanced age. While it does tend to affect people over age 60 more often, in about 5% to 10% of cases, "early onset" PD can begin in people as young as age 40. The progression of PD is different for everyone, however, those who develop it at earlier ages seem to have a more severe progression. Life expectancy for people with Parkinson's disease is about the same as the average population, but complications from the disease in the later stages can lead to fatal outcomes from choking,
Care partner Resources
As a Parkinson’s care partner, you are an essential member of your person’s medical and care teams. While most care partners are spouses, children, siblings, and parents, even friends can be part of the care team. Your role as a Parkinson’s care partner will evolve over the years; therefore, we want to offer you resources and action plans to help YOU live well while also providing the best care possible for your loved one.
Davis Phinney Foundation Every Victory Counts® manual
The Every Victory Counts® manual broke new ground as the only resource of its kind, devoted solely to the principle of proactive self-care and a holistic approach to managing Parkinson’s. In subsequent editions, it has gained international recognition as a superb and comprehensive resource for changing the way people live with Parkinson’s. Now in its sixth edition, the manual is the cornerstone of our new Every Victory Counts suite of resources, a robust collection of printed and digital manuals (including a new Every Victory Counts Manual for Care Partners) that embrace the Davis Phinney Foundation’s philosophy of taking action to improve your quality of life with Parkinson’s.
Diet and Nutrition
"While there is no prescription for a PD-specific diet, to maintain overall good health most people living with Parkinson’s disease should eat a variety of whole grains, vegetables, fruits, milk and dairy products, and protein-rich foods such as meat and beans. Also consider including nuts, olive oil, fish and eggs to your diet, for their beneficial fats." - - parkinson.org
Dyskinesia
Dyskinesia is uncontrolled, involuntary movement that may occur with long-term levodopa use and longer time with Parkinson's. Not everyone will develop this complication, and the experience of dyskinesia varies. New and emerging treatments aim to help avoid dyskinesia.
- https://www.michaeljfox.org/news/dyskinesia?dyskinesia=
If I have Parkinson’s disease, what kind of speech and voice problems may I experience?
FAQ
Everyone's Parkinson's experience is different, so it's hard to predict how your symptoms may progress. Parkinson's symptoms tend to appear gradually. The order they appear and the way they progress varies from person to person.
Some of the voice and speech difficulties that you may experience are:
Softened voice.
Reduced volume to your voice.
Speaking in a monotone pitch
Having a hoarse or strained quality to your voice.
Breathiness in the quality of your voice that is easily heard by your listeners.
It takes more effort and energy to speak.
You feel like it is taking all of your energy to speak.
Trouble clearly and easily pronouncing letters and words.
Tremor in your voice.
Slurring of your speech.
LSVT LOUD is an effective speech treatment for people with Parkinson's disease (PD) and other neurological conditions. Named for Mrs. Lee Silverman (Lee Silverman Voice Treatment), a woman living with PD, it was developed by Dr. Lorraine Ramig and has been scientifically studied for over 25 years with support from the National Institute for Deafness and other Communication Disorders within the National Institutes of Health (NIH) and other funding organizations.
Find local LSVT Clinicians using this form
https://www.lsvtglobal.com/LSVTFindClinicians
Medications for PD
Most people with Parkinson’s begin a course of treatments to help manage symptoms. Treatments often include a unique combination of medications and surgical therapies as well as exercise and other complementary therapies like acupuncture, speech and language therapy, physical therapy and occupational therapy. - Davis Phinney Foundation
Misconception: Parkinson’s ONLY affects movement, or motor symptoms like tremor, stiffness and slowness.
Reality: Many symptoms of PD are unrelated to movement. Non-motor symptoms are quite common and include impaired sleep, constipation, bladder symptoms, fatigue, pain, tingling, lightheadedness, cognitive difficulty, anxiety and depression.
Fact: Many motor and non-motor symptoms of Parkinson’s are highly treatable.
Misconception: People experience Parkinson’s “flare-ups.”
Reality: Parkinson’s symptoms do not often suddenly worsen over days or weeks, if they do, it is critical to find the underlying cause with your healthcare team. Medication changes, infection, dehydration, sleep deprivation, stress, grief and other medical conditions can greatly impact and worsen PD symptoms.
Fact: Certain medications (prochloroperazine, metaclopramide, valproic acid and others) can worsen PD symptoms. Often, when infection and underlying medical or psychological issues are treated, PD symptoms improve.
Misconception: You can judge how severe a person’s Parkinson’s is based on a single observation.
Reality: Many Parkinson’s symptoms can fluctuate and not all symptoms are visible.
Fact: Many people with Parkinson’s can experience ON times (when they feel well and medications are working) and OFF times (when symptoms are problematic and medications are not working). Keeping track of your symptoms in relation to your medication times and dosages can help your provider optimize your medication schedule.
Misconception: Your doctor can predict your future and prognosis.
Reality: No person experiences the same Parkinson’s progression, symptoms or reaction to treatments, so even the best doctors cannot tell you exactly what lies ahead.
Fact: You can help change your future! Improve your disease at every stage by ensuring you stay fit and receive adequate sleep and nutrition. Exercise can improve mobility, stamina, mood and quality of life. People living with PD who seek expert care from a comprehensive team have better outcomes. Their complication risks are lower, and they enjoy better quality and longer lives. In fact, neurologist care saves about 4,600 lives each year in the U.S. alone.
Prescription drug assistance programs
You may find it necessary to get help paying for prescriptions even after enrolling in Medicare Drug Coverage (Part D). For example, you may reach the annual spending limit and enter what is called the coverage gap. Here are some tips to consider if you think you might need to get help with the costs of prescription drug coverage.
Sleep and PD
The brain changes that are part of PD can also cause sleep difficulties and some people have problems sleeping even before movement symptoms develop and PD is diagnosed.
Some PD medications can disrupt sleep. Others make people sleepy during the day. Not surprisingly, sleep-related symptoms are reported by more than 75 percent of people with PD.
Surgery and PD
People with Parkinson’s disease (PD) sometimes face procedures or surgeries due to other medical conditions not related to PD. These could be relatively simple procedures such as a colonoscopy or endoscopy, common surgeries such as cataract removal, gall bladder removal or hernia repair, or more complex surgeries such as open-heart surgery or transplant surgery.
What are some tips to increase communication with others?
FAQ
Some tips to improve communication include:
Choose a quiet, low-noise space. Turn off televisions, radios and other devices that create distracting background noise.
Speak slowly.
Use short phrases. Say one or two words or syllables per breath.
Plan periods of vocal rest before planned conversations or phone calls. Know that fatigue significantly affects your ability to speak. Techniques that work in
the morning might not work later in the day.
Keep your throat hydrated. Drink plenty of water. Don’t drink beverages containing caffeine or alcohol. Use a humidifier if the air in your home is dry.
Try to sit in an upright posture, with a straight chin, slightly lifted neck to improve airflow from lungs to your vocal cords.
If you are naturally soft spoken and your voice has become low or harder to hear for others, consider using an amplifier.
Where can I find Yoga and Exercise classes for Parkinson's near me?
FAQ
Exercise is a vital component to maintaining balance, mobility and activities of daily living to those living with Parkinson’s Disease. Check out the local classes here. https://www.helpforpd.org/exercise-classes
Where can I find a Parkinson’s Support System in the Albany, NY area?
FAQ
Find a local support group here - https://www.helpforpd.org/support-groups
Who is likely to get PD?
FAQ
Parkinson’s disease affects both men and women. Currently, about 50% more men are affected than women.
Why is this? There are theories that estrogen may cause women to develop the disease less frequently, and when they do, they seem to get a milder case. The National Institute of Neurological Disorders and Stroke estimates about 50,000 people are diagnosed with Parkinson’s Disease each year in the U.S. However, this number may be higher due to the fact that many people in the early stages of PD
assume their symptoms are due to aging and do not seek medical attention. Complicating the diagnosis is that symptoms of Parkinson's resemble other diseases and there is no one definitive test to diagnose it.
Will my children get Parkinson's? Should I get them tested?
FAQ
It has been said that accurate genetic diagnosis and treatment will occur along with increased knowledge of the genetic code. Many of you want to know the probability of passing PD along to your children and grandchildren. The vast majority of people with Parkinson’s do not have mutated genes and therefore do not pass them along.
Will supplements and vitamins cure or slow down Parkinson's Disease?
FAQ
The ingestion of cocoanut oil, cinnamon, Omega-3 fish oil, pure oxygen, Vitamin C and E, Glutathione, CoQ-10, nicotinamide, riboflavin, acetlyl carnitine, lipoic acid, St. John’s Wort, Ginko Biloba, creatine, and Alkaline water, have not yet been shown in scientific, peer-reviewed studies to be beneficial to Parkinson’s patients.
Young Onset Parkinson's Disease (YOPD)
Young onset Parkinson's
Young Onset Parkinson’s disease (YOPD) occurs in people younger than 50 years of age. Most people with idiopathic, or typical, PD develop symptoms at 50 years of age or older.
YOPD affects about four percent of the one million people with PD in the United States. Symptoms are similar to late onset PD but it is important to understand the challenges YOPD individuals often face at a financial, family and employment levels.
https://www.parkinson.org/Understanding-Parkinsons/What-is-Parkinsons/Young-Onset-Parkinsons