So, Parkinson’s Disease (PD) vs Functional Neurologic Disorder (FND) seem to join the other medical acronyms. What do these medical acronyms stand for? We have COPD for Chronic Obstructive Pulmonary Disease (what a mouthful).  How about having a CBC (complete blood count)? Here is our favorite…. BMI (Body Mass Index). I do not think there are many people who like saying that acronym, let alone hearing what their BMI is at their doctor’s appointment. Now try and say some of the pharmaceutical words. I think those are even harder to learn than diagnosis. 

Several months back, I wrote an article for Patient Worthy explaining what it is like to have Parkinson’s Disease (PD for short). For example, tremors are the most common symptoms. Then there is whole-body pain; balance issues – (plan on falling with PD); anxiety; breathing difficulties; confusion; your cognition decreases; depression is a big issue with PD patients. It is very common to have gait issues and there are so many other symptoms, I can go on forever.   

I was diagnosed with PD in 1999. I remember very vividly after I was told I had Parkinson’s, I was driving home and all I kept thinking was I have 2 children at home that need their mommy. Who will help my husband take care of our children when I am gone? All I knew about PD back then was what I heard from the public – “oh it’s a death sentence and very painful.” Then, after learning about PD and asking questions every time I would go for my PD appointment, my doctor would always remind me I will not die from Parkinson’s – no one dies of just PD. It generally is due to a secondary cause – broken hip from falling or pneumonia, dysphagia – which are the muscles around your throat and neck area constrict and will not allow food or water down your throat or if there is still food or beverage in your throat, you can choke. There are so many different instances and obstacles patients must maneuver around. 

Just a recap – Parkinson’s Disease is a neurodegenerative disease of the nervous system, which worsens over time. The disease is caused by the progressive loss of neuron cells in the brain. This then causes a shortage of a chemical messenger called dopamine. Dopamine controls many motor functions. Just a few functions dopamine are responsible for are balance problems and falls. I am no longer able to regulate my body temperature. Parkinson’s affects the regions of the brain that regulate movements and maintains balance. Severe fatigue or exhaustion invades your body and seems like it will never leave. The fatigue is caused by several reasons – low dopamine levels; damaged nerve cells and a chemical in our bodies. Naturally, dopamine helps to control a multitude of symptoms from alertness, and stress and can also cause extreme fatigue. Sleep or lack of is a very common issue. I for example sleep maybe 3-4 hours per night. That does not include the nights I am up for more than 30 hours because of not being able to sleep. Cognitive changes (those relate to thinking, memory, performing tasks. A person’s emotions take a toll with PD. Between stress, anxiety and depression, it can really throw you for spin. Here is my most favorite which I am currently dealing with – low and then high blood pressure. Doctors and my body just will not communicate with each other. That is one thing: PD has a mind of its own. Constipation is another fun one to deal with. Even with the multitude of medications I take for both Parkinson’s and FND, you still need a miracle medication book where you log your time you took your medications, what medication you took and when your next dose s do, these are very serious disease and keeping track of your medications can be the difference between feeling just absolutely miserable. You take your medications on time; you generally do ok and feel pretty good. 

Now that you have a basic understanding of Parkinson’s Disease, it is time to welcome you to a very rare disease which the Neuro division of the medical society is still learning about. This disease is called Functional Neurologic Disorder, also known as FND. FND is a neurologic disorder which when triggered by a neurological event such as a reaction to stress, psychological or physical trauma, it can put your entire body on defensive. Because FND relates to how the brain functions, instead of the brain’s structure from instances such as a stroke, multiple sclerosis infection or injury. 

Symptoms of FND are a lot like Parkinson’s. You have a loss of balance, tremors, dysphasia (trouble swallowing), weakness and cognitive decrease to name a few. Some unusual symptoms which occur more with FND include severe weakness; seizures; unresponsive; vision problems – double vision or blindness. Then there is numbness or the loss of the “touch sensation.” The exact cause of Functional Neurologic Disorder is unknown. We know parts of the brain that controls the functioning of your muscles and senses may be involved, the exact cause of Functional Neurologic Disorder symptoms are unknown at this time but can occur to anyone with PD or FND.   

FND is a software problem while Parkinson’s is a neurodegenerative disease. It is a disorder of brain function, not brain damage. 

FND is so misunderstood because it does not show up with an MRI, and many doctors still do not understand the scope of this disease, which includes being real, involuntary, and often severe.  

Now comes my personal ordeal I just lived through. My daughter came home and seen me lifeless and sprawled out on my bed incoherent. She shook me enough to wake me, asking if anything hurt. I thought for a split-second and said my chest. Because I had had a heart attack before, she knew to immediately call the aide car. By the time the paramedics had me in the ambulance, the entire right side of my body, from my face to my toes, were numb. I could not feel the right side, and I could not move any extremity. When I arrived at hospital, they rushed me into the radiology room and performed MRIs, CT scans, and x-rays. Then I was carted off to a room waiting for details. One doctor said it was another heart attack. Another doctor said it was TIA/stroke while another doctor walked into the room and said, “I believe it must do completely with all her Parkinson’s symptoms. There is nothing we can do for her and the stage she is in. It is up to her whether she will survive or not.”

Imagine hearing that firsthand. My daughter and I were mortified. I even started talking about how I wanted Compassion Care for the end and so forth. About a week later, while still admitted at hospital, I asked the upstairs doctor what we were told by the one ER doctor. That doctor was mortified and could not believe what he just heard. After almost 2 full weeks in hospital, it was time for me to learn how to walk all over again, climb stairs, eat with utensils, get dressed and wash up on my own and so forth. I was transferred to an Acute Rehabilitation Center. I was adamant I did not want to go; I wanted to just go home. I am so happy I had the opportunity to be accepted on this facility. 

Within two weeks, I went from a wheelchair and then to a walker. It was so invigorating to be able to come so far so fast. I then moved onto more intricate detailed therapy. I had to learn to walk, two days after coming home, I had a hospital follow up appointment with my Movement Specialist Neurologist.  She walked into the exam room, proceeded to do a visual and physical exam on me and said, “I reviewed your entire hospital chart, (roughly 25 days) and I know what’s wrong with you.” I looked at her with confusion and uncertainty. My doctor told me that I not only had Parkinson’s, but I also had Functional Neurological Disorder. I had never heard of this disease. She said there are not a lot of cases documented and this is due to the lack of education of this specific disease. It is considered an extremely rare illness.  

The one thing my doctor instilled in me is to avoid all stress… like that is possible. Having increased stress will bring more attacks, and we will be in the same situation we just left. I now take breaks in between projects or about every 15-20 minutes. When I feel I am starting to get stressed, I tell myself to get into “My Safe Zone.” I was meditating one day, and the “Safe Zone” came to my mind and stuck with me. If my zone does not work, then I know it is time to get up and take a break. This is to change the atmosphere, de-stress myself and have something to drink and/or take meds.  

I used to never have to worry about my blood pressure. Speaking of medications, this diagnosis has been eye-opening. I have always had 110/70 blood pressure. I would bet on my life. Now, I have learned just how important it is to take your medications on time; otherwise it could do reverse damage in your body. It can be quite a challenge in the beginning, and I am not sure what my future holds, but that is exactly what I said when diagnosed with Parkinson’s back in 2019. This was an experience that I would not want anyone to have to go through. To have a doctor tell you and your daughter basically “Mom is not going to survive” really puts life into perspective. I have now learned to appreciate the flowers, go for walks, listen to my body. If it is telling me to rest, I rest. If it is telling me I can work on that specific project, I do. Moral of the story, listen to your body. Go get the 2nd or even 3rd opinion.

Just make sure you fight.