Parkinson's Awareness Month #KeyToPD

By Cassie Johnson

When you hear Parkinson’s Disease, you may instantly think of celebrities like Michael J. Fox or the great Muhammad Ali. Parkinson’s Disease affects nearly 1 million people in America. According to parkinson.org, Young Onset Parkinson’s Disease (YOPD) affects only 2-10% of that million. YOPD means a Parkinson’s diagnosis in patients younger than 50 years old. April is Parkinson’s Awareness Month, and it’s a big piece of my heart. My husband of 17 years, David, has Young Onset Parkinson’s.

David’s Story

In 2014, David started experiencing alarming medical symptoms. Extreme fatigue, a hand that began to shake, and his body became rigid and stiff. Month after month, I watched him rapidly decline. At a doctor’s office in Barnes Jewish Hospital on August 17, 2015, he was officially diagnosed with Young Onset PD. He was 35 years old and had no family history of the disease. To read our full story, feel free to visit my blog at prayerfullyliving.blogspot.com, under the post All in God’s Plan.

Cassie & David Johnson

What is Parkinson’s?

Parkinson’s Disease (PD) is a degenerative neurological disease that occurs when brain cells that make dopamine stop working or die. Dopamine is a chemical neurotransmitter made by the brain that coordinates and allows movement. Low or no dopamine results in PD symptoms.

More Than a Shaky Hand

PD has more symptoms than you may be familiar with. The most recognized is a hand tremor, but rigid movements, extreme stiffness in the arms and legs, poor balance, anxiety, depression, and severe insomnia are all included. An expressionless poker face is common as PD affects every muscle, including those in your face. Throat and facial muscles contribute to chewing, swallowing, and speech – all of which are affected by PD.

A big misconception is that PD is only found in senior citizens. YOPD is rarer, but most symptoms are similar. Memory loss and falling due to balance issues are seen in more elderly patients. Another myth is that once diagnosed, PD patients are automatically disabled and unable to work or drive. False! Many patients, my husband included, work, drive, participate in hobbies and live their lives to the fullest. It doesn’t mean every day is easy, but it means we make the best of every day.

The Right Doctor

Finding a movement disorder specialist as soon as possible is crucial. A movement disorder specialist is a neurologist with additional training in any disease that involves movement such as PD and Multiple Sclerosis. With their experience and knowledge of ongoing research, they can tailor a care plan specifically for each patient. For help finding a movement disorder specialist, visit mds.movementdisorders.org.

Treatments

Medications are prescribed to help control symptoms. There simply aren’t enough pages in the magazine to name all PD medications.

On average, my husband had a total of 47 pills a day! YOPD patients require more medication as they are typically more active.

Medications help control symptoms, but also have many side effects. Times where medications wear-off or failed doses can result in several conditions accompanied by an intense tremor. Dyskinesia is uncontrolled movements such as walking in place or involuntary moving of arms, legs, torso, and neck. Bradykinesia is very slow, stiff movements that keep the body from moving quickly. Dystonia forces muscles to contract and twist uncontrollably, making it painfully difficult to control movement.

Regular exercise is highly recommended to increase long-term mobility. Walking, bike riding and kickboxing are all excellent options. Physical and speech therapy help maintain good balance, motor skills, and speech. An exclusive program offering both therapies together is the Big & Loud Program. Not every facility offers this specialized treatment, but locally it is available at Parkview Nursing & Rehabilitation.

Having a positive support system is not only beneficial for a patient, but also their families. We are blessed to have an outpouring of love, support, and prayers from our family, friends, and church family. Having PD or any other disease is difficult enough – no one should have to go through it alone. If you know someone with PD, volunteer to walk or exercise with them regularly. If someone is older or lives alone, offer to help with yard work or run errands. Caregivers can struggle too. Sometimes, all a patient or a caregiver needs is someone to listen.

The Next Steps

After a patient has taken medications for several years, their body gradually stops responding to them. Sadly, there aren’t many options once that happens. Deep Brain Stimulation (DBS) surgery is by far the most impressive advancement. It is most helpful for patients who experience medication wear-off times, tremors, and motor skill impairment.

DBS consists of two surgeries. In the first surgery, electrodes the size of an uncooked piece of angel hair pasta are inserted into a Tic-Tacsized targeted area of the brain. The second surgery is placing an Impulse Generator Battery (IPG). It is similar in size to a pacemaker and implanted under the collar bone. Once turned on, an electrical impulse goes to the part of the brain housing the electrodes.

The results can be life-changing! While it’s not a cure, DBS reduces symptoms such as tremors, dyskinesia, and improves general motor skills. It also greatly reduces the number of daily medications needed. A couple of years ago, my husband stopped responding as well to medications. DBS was our next option. If you think life can’t get any crazier during a pandemic, throw in two brain surgeries!

In July of 2020, David underwent both surgeries within eight days. I’m proud to say that he is doing significantly better thanks to the good Lord and the advanced hardware in his brain and chest. His medication dosages have been cut in half.

Currently, Parkinson’s has no cure. Thanks to research within organizations like the Michael J. Fox Foundation, positive progress is being made. Like other diseases, awareness is crucial in finding a cure. You can contribute to research efforts by visiting michaeljfox.org. If you are a patient or caregiver, share your #KeytoPD on parkinson.org or social media. For more information on Parkinson’s, visit parkinson. org or michaeljfox.org.