My Journey With Parkinson's – David Zanghi

What is Parkinson’s?

Parkinson’s disease is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra. Symptoms generally develop slowly over years. Although there is no cure, treatment options vary and are tailored to each person’s individual symptoms.

How to Treat Parkinson’s?

Unfortunately, there is currently no cure for Parkinson’s disease, but there are medicines, surgeries, therapies, and exercises that can help manage and even reverse the symptoms of Parkinson’s. Exercise is currently the only disease-modifying intervention for Parkinson’s.

Can Medicine Help Treat Parkinson’s?

When Parkinson’s is diagnosed by a doctor, they may prescribe medication that can help relieve some Parkinson’s symptoms. Medication can:

• Increase dopamine in the brain
• Affect neurotransmitters in the brain to help improve the brain cell transfer of information.
• Help with non-movement-related symptoms.

Levodopa is one medication often prescribed to those diagnosed with Parkinson’s. Nerve cells use levodopa to create the dopamine lacking in a person with PD’s brain. Levodopa is often taken alongside the medication Carbidopa. Carbidopa can increase Levodopa’s effectiveness and reduce levodopa’s side effects, including nausea, vomiting, low blood pressure, and restlessness.

Medication should only be taken with the prescription and guidance of a doctor, and stopping medication without a doctor’s guidance can be dangerous.

There are other medications doctors prescribe, but Levodopa and Carbidopa tend to be the most common.

Other medications often prescribed to help people with Parkinson’s include:

• Dopamine agonists to help increase dopamine production.
• Enzyme inhibitors (For example., MAO-B inhibitors, COMT inhibitors) to increase the amount of dopamine by slowing down dopamine breaking down enzymes in the brain.
• Amantadine to decrease involuntary physical movement.
• Anticholinergic drugs that may decrease shaking and stiffness.

After DBS, can I have other types of surgery?

Yes, but notify your surgeon or dental professional depending on the location of the procedure. Your neurosurgeon may need to coordinate surgical planning to avoid injury to the DBS system. Most importantly, unipolar or monopolar cautery should be avoided if possible. Bipolar cautery reduces the area for potential interference but should be used at minimal power settings and only intermittently.

Is Parkinson’s genetic?

We do not know exactly what causes Parkinson’s, but scientists believe that a combination of genetic and environmental factors are the cause. Genetics cause about 10% to 15% of all Parkinson’s.

How is Parkinson’s Diagnosed?

There is not yet a conclusive screening or test for Parkinson’s disease, so making an accurate diagnosis can be complicated. To determine whether or not you or a loved one has PD, doctors must carefully weigh symptoms, history, and other factors. Certain tests such as MRIs, blood work, and DaT scans can be used to support Parkinson’s diagnoses and rule out other conditions.

There are many diseases with overlapping or similar symptoms to Parkinson’s, so going to the doctor and getting their feedback and diagnosis is the first step toward determining whether or not you have Parkinson’s. An internist or family physician is often the first to make a diagnosis, but many people seek the opinion of neurologists specializing in movement disorders who have specific training on the diagnosis and treatment of PD.

Exercise For Parkinson’s

Exercise is absolutely crucial to managing and even reversing the symptoms of Parkinson’s. Exercise is proven to benefit people with Parkinson’s in many ways, including reducing the risk of falls & injury, improving cognitive and motor function, and easing the non-motor symptoms of Parkinson’s, such as depression, fatigue, and insomnia. Exercise has also been shown to protect the brain’s neurons from deteriorating and stimulate new neuropathways; this improves cognitive processing and can slow and even reverse the progression of Parkinson’s disease.

The Parkinson’s Foundation recommends that people with Parkinson’s exercise aerobically 3 days per week and do strength training 2-3 non-consecutive days per week for at least 30 minutes per session. They also recommend that people with PD practice sustained stretching and integrate balance, agility, and multitasking exercises into their daily life.

How will DBS affect my symptoms?

Every patient is different. But DBS greatly improves symptoms and quality of life for many patients. Symptoms that may improve include tremor, involuntary movements (dyskinesia), and stiffness or slowness caused by Parkinson’s disease. DBS won’t make all movement symptoms go away entirely, though.

What benefits can I expect from DBS? How long do the benefits from DBS last?

Every patient’s response is different, of course, but on average tremor is reduced by 70-80% in patients with essential tremor, and the benefits are sustained for many years. In patients with Parkinson’s disease, or PD, clinical trials showed an increase of five hours of good response to medication (“on” time) per day, a 70% reduction in tremor, and a 75% reduction in dyskinesia. These benefits remained for many years in long-term studies. However, PD is a progressive condition, so symptoms of advanced PD do occur as the years go by, including memory loss, cognitive decline, swallowing problems, and balance issues. These symptoms tend not to be responsive to levodopa, and thus are not responsive to DBS, but are caused by the disease, not the stimulation. DBS is not a cure.

What are the symptoms of Parkinson’s?

Parkinson’s is called a movement disorder because of the tremors, slowing and stiffening movements it can cause — known as movement symptoms. Continue reading for more types of movement symptoms.

Most people develop other symptoms related to Parkinson’s that are collectively known as non-motor symptoms. They can include anxiety, depression, sleep disorders and weight management issues.

Read more about Movement Symptoms and Non-Movement Symptoms.

Other Therapies to Help with Parkinson’s?

In addition to exercise, there are therapies that can help people with Parkinson’s manage their symptoms and maintain a good quality of life, including:

• Physical Therapy can help keep people with PD moving by giving them individualized education and advice to manage symptoms and exercise safely.
• Occupational therapy can help make the activities of daily living easier.
• Speech therapy can help people with PD improve vocal strength and range.
• Massage therapy for Parkinson’s can help with muscle tension and anxiety.

Where do I find a Community & Get Support

People with Parkinson’s often struggle with feelings of isolation that can further exacerbate the other symptoms of PD. Finding support and community is essential for relieving this isolation and maintaining the best quality of life.

Power For Parkinson’s offers free virtual support groups for both people with Parkinson’s and care partners, as well as free classes where you can virtually connect with others who have Parkinson’s. You can also connect with instructors and those who can offer tips and training to help mitigate Parkinson’s symptoms during virtual classes. If you are located in Austin, Lakeway, or Round Rock, Texas, we also offer in-person classes, support groups, and social events.

There are many other local exercise and support groups to help people with PD and their care partners find support and community in person. To find groups near you, we recommend exploring the PMD Alliance’s Exercise & Support Group Database or searching for Parkinson’s groups near you on Google.

Can I have a pacemaker or an implantable cardioverter defibrillator (ICD) with DBS?

For many patients, having a pacemaker or an ICD along with their DBS system is possible. Care must be taken in the testing, placement, and programming of each device to make sure they do not interfere with one another. Because of the many possible combinations of devices and individual patient considerations, your healthcare team and cardiologist should discuss your situation.