What is Parkinson’s Disease – known as PD for short? Parkinson’s Disease was first discovered in 1817 by a British doctor named James Parkinson.  From observations, he noticed 7 people who were all suffering from some sort of shaking, uncontrolled walking, speech problems, swallowing difficulties and their thought patterns were off que.

Because Parkinson’s progressively impairs movement, vital bodily functions and mental/cognitively (just to name a few), is why it is considered a very dangerous disease. PD is known as a “Neurodegenerative Disorder” because the brain no longer produces an adequate chemical known as dopamine.  Dopamine is known for producing cells which control movement and coordination.  With these deficiencies, your symptoms will continue to grow leading to tremors, stiffness, slow movement and balance – which involves falls.  Some people even suffer from difficulties in swallowing, which then leads to a whole new can of worms.  Your speech can also become “contaminated” and provide you with difficulties speaking or controlling the volume of your speech. The symptoms listed above are just a minimum of symptoms a patient can and possibly will have to endure some time in their journey with PD.

My life took a sharp turn back in the mid 2000’s. I was showing a lot of the symptoms listed above…balance, coordination, tremors, extreme stiffness which then caused the slow movements. I would just make up excuses for the symptoms. Finally, after several years of doctor visits with Primary Care, Psychiatrists, Neurologists, Physical Therapists, Speech Therapists to name just a few of my new friends…. a neurologist I was seeing said, “I believe you have Parkinson’s Disease and I believe I know the doctor to confirm it”.  After waiting several weeks for an appointment, this Parkinson’s specialist had me set up with a special CAT Scan called a DaT Scan.  This is a very detailed test which shows the travels of dopamine in your brain. The slower the travel, the better idea or confirmation of Parkinson’s.

That day in 2009, I went home thinking I was just given a death sentence.  The only thing I ever heard about PD was you will die quick and painfully from it…generally within 10-15 years.

With the help of medication, my symptoms seemed to be a bit reduced in severity.  Stress was and still is one of the biggest factors with my PD. I have good and bad days. I was not only diagnosed with a dangerous disease myself, but then in 2020, my husband was diagnosed with Non-Hodgkins Lymphoma. I noticed my symptoms were increasing as quickly as my husband’s. I ignored them for as long as I could. I then discussed the changes with my Neuro specialist who increased my medication dosage and the frequency between dosages. It seemed to help for a while.  We added physical therapy to help with my falls that were starting to frequent, and he also started me with Speech Therapy because of swallowing issues.

I try and take care of myself by exercising which includes a lot of walking. This helps with my gait and stride movements. My only concern with extensive walking is the increased possibility of falling – which has happened numerous times.

Since the mid 2000’s, my life has been overloaded.  Over the years, I have seen my symptoms increase along with the complexity of them. I am sure prior years of chaos helped contribute to my PD.  Some of my biggest symptoms are my balance – I fall frequently; sleeping disturbances – mainly very little sleep. I have always suffered from depression, but since my diagnosis, my depression has worsened along with anxiety and terrible mood swings, not to mention the body achiness and cognitive changes, just to name a few. Then there is a lack of temperature regulation of your body.  One minute you’re hot then cold. It is difficult to try and prepare for the day’s weather because one way or another, you will be affected.  The most painful symptoms I deal with daily are tremors (rhythmic shaking at rest or when a person is under emotional or physical stress) and dyskinesia (involuntary, jerky, head-bobbing, twisty muscle movement).  They shake me so badly, most days my neck is in great pain. At times, I even need to wear a neck brace to help with stabilization. I have days when I am unable to do anything but sit in my chair all day.  Days where appointments have been cancelled and days of….” I guess I should not have overdone it yesterday”.  It is very important to know your limits.  Unfortunately, because my limit level used to be so high, I still think I can do a lot of what I used to.  It is still a learning process for me all these years later. Just four years ago, I was able to remodel the interior of my home and complete the final touches of the outside landscaping. All this work made me so proud of myself – I remodeled my bathroom, the kitchen, replaced floors, did electrical work, painted, etc. on the inside of my home and redesigned the front and back yards with new shrubs, flowers and stone pavers.  Today, I could possibly do these items, but I am sure I would get hurt and possibly severe enough that I will not tackle something this big again.  Am I sad?  Yes, I am very sad and angry I now have such limitations.  I have never been held back or afraid to tackle a project before, but I am now trying to follow my body’s instructions and acknowledge I am not the same person I was 4 or 20 years ago.

My daughter is concerned with my health from PD, so last year, she moved me from the West Coast to the Mid-West so I can be closer to her for when I need her help. This too is something PD patients need to think of.  Do they have family that will help them as they need it?  Does the patient need to think about relocating to be closer to family? If these choices are not available to you, then you may need to investigate outside care. Moving away and leaving my grandchildren along with leaving my home that my grandchildren were raised in has completely devastated me.  I do realize there will be a day when I can no longer take care of my daily needs and will need help.

I have been very blessed.  I am fortunate to be part of a study group with other PD patients who are working with a Company and their PD research team.  This research involves wearing an Apple watch which is set up like an ordinary Apple watch but is also programmed to track my symptoms and what I was doing at the time of the symptom; along with a list of symptoms, I can select from. This alone is a miracle worker for me. The watch also reminds me to take my medicines; how much exercise I have done so far that day and encourages me to aim for more; makes sure I have reflection time each day; updates me if my data looks off and also providing a comprehensive report once a month to both my doctor and me which details specifics such as what symptoms I had for that month. It keeps track of what type of exercise I did – aerobic, flexibility, weight training, etc.  This watch is my lifeline.  I am so honored and privileged to be part of this research. I know a difference is being made because of this company; its research team; my doctors and my symptoms.  I know I too am helping to find a cure.

Now, please don’t think having Parkinson’s Disease is a “death sentence” as I did back in 2009. According to my calculations of what I originally thought, I should have passed by now based on my original beliefs and calculations of what PD is.

There have been so many advances towards finding a cure. There has been stem cell research – which has brought incredible insight to research, such as personalized treatment plans including brain dopamine activity treatment, Improved motor functions, High Dosage Treatment Efficacy and so much more.  We now know the “Gut First” Theory, which is damage to the upper GI tract (from reflux, GERD, ulcers) roughly doubles the risk of developing Parkinson’s.  Research has shown that high-intensity aerobic exercise will preserve dopamine-producing neurons which are the brain cells most vulnerable to being destroyed with PD.    As you can see, the incredible advancements being made today may just one day soon become a thing of the past with the eradication of Parkinson’s Disease.

If you know people with this disease, please give them encouragement to persevere. Give them compassion (but not too much), but most of all, give them your support and understanding.  The more people learn about this disease; the sooner we can cure it.