I’VE JUST BEEN DIAGNOSED WITH PARKINSON’S
When you first get diagnosed with something as off-putting as PARKINSON’S DISEASE, the first thing you might do is get depressed. It is a very natural reaction. The most important thing to know right now is you are not alone. The other key thing to know is no Parkinson’s journey is the same. What other people experience may never happen to you, and vice versa. You might never experience some of the things you see or read about in others. Your journey is YOUR journey.
SO, WHAT TO DO? Be certain that you have received the correct diagnosis. DID YOU HEAR Parkinson’s disease, or DID YOU HEAR you may have “Atypical Parkinson’s”, or “Parkinson’s-like”, or “Parkinsonism”? These all have different meanings and may mean that you do not have “generic” or “idiopathic” Parkinson’s.
GET A SECOND OPINION. Parkinson’s is misdiagnosed around 50% of the time. If you were getting a bid on something that might be wrong with your home, car, or other asset you’d probably consider getting more than one opinion. Your body is the most important asset you have. Treat it well, get a second opinion. It is highly suggested that your second opinion be given by a MOVEMENT DISORDER SPECIALIST. A movement disorder specialist is a medical doctor, a neurologist with additional training in Parkinson’s and other movement disorders. This type of doctor typically has extensive knowledge of “Atypical,” “Parkinson’s-like,” “Parkinsonisms,” and “Parkinson's” therapies and ongoing research.
Your next step might be START EDUCATING YOURSELF about the disease that you have or may not have. Our website has a robust amount of information, including an education on the Five Stages of Parkinson’s. Join a support group and start learning from others in your same situation: what do they do? How do/did they handle the diagnosis? What role does the partner hold? More subjects to investigate, learn about, and execute:
Legal and Financial Planning
Insurance issues
Family Planning
Therapies to keep the disease process in abeyance
Therapies available to create a greatest quality of life
Pharmaceutical vs Holistic symptom management
Creating your bucket list
You might experience all of the following emotions, and typically in this order presented
D = Depression
A = Anger
B = Bargaining
D = Denial
A = Acceptance
When you get to Acceptance you can now REMEMBER TO LIVE. Parkinson’s is not a death sentence; it is a new way of living and a new job. It takes lots of effort from everyone in your family.
WHAT DOES YOUR VILLAGE LOOK LIKE? It takes a Village to get through the journey of Parkinson’s, which is why PRO developed a virtual, vetted, video-driven resource directory called The Wellness Village. Parkinson’s Resource Organization (PRO) is here to help. We are “working so no one is isolated because of Parkinson’s.” We’ve got your back.
Read on for the basics about Parkinson’s disease and treatments…
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What is Parkinson’s?
Parkinson's belongs to a group of conditions called motor system disorders, which cause unintended or uncontrollable movements of the body. The precise cause of Parkinson’s is unknown, but some cases are hereditary while others are thought to occur from a combination of genetics and environmental factors that trigger the disease. In Parkinson’s, brain cells become damaged or die in the part of the brain that produces dopamine – a chemical needed to produce smooth, purposeful movement.
The four primary symptoms of Parkinson’s are:
- Tremor – Shaking that has a characteristic rhythmic back and forth motion.
- Rigidity – Muscle stiffness or resistance to movement, where muscles remain constantly tense and contracted.
- Bradykinesia – Slowing of spontaneous and automatic movement that can make it difficult to perform simple tasks or rapidly perform routine movements.
- Postural Instability – Impaired balance and changes in posture can increase the risk of falls.
Other symptoms may include difficulty swallowing, chewing, or speaking; emotional changes; urinary problems or constipation; dementia or other cognitive problems; fatigue; and problems sleeping.
What treatments are available?
At present there is no cure for Parkinson’s but a variety of medications provide dramatic relief from the symptoms. Usually, affected individuals are given levodopa combined with carbidopa. Carbidopa delays the conversion of levodopa into dopamine until it reaches the brain. Nerve cells can use levodopa to make dopamine and replenish the brain's dwindling supply. Although levodopa helps most people with Parkinson’s, not everyone responds equally to the drug. Bradykinesia and rigidity respond best, while tremors may be only marginally reduced. Problems with balance and other symptoms may not be alleviated at all. Anticholinergic drugs may help control tremors and rigidity. Other drugs, such as pramipexole, apomorphine, and ropinirole, mimic the role of dopamine in the brain, causing the nerve cells to react as they would to dopamine. An antiviral drug, amantadine, also appears to reduce symptoms. Safinamide tablets, istradefylline tablets, and opicapone are add-on treatments for individuals with Parkinson’s who are currently taking levodopa/carbidopa and experiencing "off" episodes (when the person's medications are not working well, causing an increase in Parkinson’s symptoms).
Other drugs to treat Parkinson’s include COMT inhibitors, which prolong the effects of levodopa by preventing the breakdown of dopamine, and MAO-B inhibitors, which block or reduce the activity of the MAO-B enzyme that breaks down dopamine in the brain.
In some cases, surgery may be appropriate if the disease doesn't respond to drugs. One option is deep brain stimulation (DBS), in which electrodes are implanted into the brain and connected to a small electrical device called a pulse generator to painlessly stimulate the brain to block signals that cause many of the motor symptoms of Parkinson’s. DBS is generally appropriate for people with levodopa-responsive Parkinson’s who have developed dyskinesias or other disabling "off" symptoms despite drug therapy. However, DBS does not stop Parkinson’s from progressing and some problems may gradually return.
What’s my Long-Term Prognosis?
Parkinson’s is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time. Although some people become severely disabled, others experience only minor motor disruptions. Tremor is the major symptom for some individuals, while for others tremor is only a minor complaint and other symptoms are more troublesome. It is currently not possible to predict which symptoms will affect an individual, and the intensity of the symptoms also varies from person to person.
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We Are Here to Help
You are not alone. In fact, our mission is to work so no one is isolated because of Parkinson’s. Here are just a few ways we can help you today:
- Support Groups – Through dedicated in-person support groups for caregivers and Parkinson’s patients we distribute new information quickly and build a community network that teaches and learns from itself.
- Wellness Village Resource Directory – The Wellness Village is a free, virtual, vetted, digital resource directory of the best available providers and services within the Parkinson’s world, designed to ease the research burden and introduce constituents to a wide range of holistic and practical support services to navigate Parkinson’s and maximize quality of life.
- Information & Education – Through our long-running newsletter, YouTube channel, and social channels, we educate audiences across the country – and the world – on the latest Parkinson’s news, tried and true lifestyle tips, research, and more. Open forums like our Village Meetings feature researchers, physical therapists, elder law attorneys, and more. One-on-one sessions with Jo Rosen provide direct access to over three decades of learned experience.
Contact Us
We’re here to help! Contact us with any questions you have. If we don’t already have the answer, we’ll try our best to find the answer.
Phone (toll-free): 877-775-4111
Email: info@parkinsonsresource.org
