Parkinson's Disease (PD) is a common, chronic and incurable neurodegenerative disorder of the brain. This disease is characterized by the death of specific brain cells (neurons) in many areas of the brain especially in the base of the brain in a structure called the “substantia nigra”. This is a critical brain region for the production of dopamine and this neurochemical affects many systems of the central nervous system ranging from movement control, cognitive executive functions, and emotional limbic activity.
Before I continue I must let you know that these were all personal memoirs I began writing when I knew something was not right. By journaling I have felt relief. But by writing a blog and actually putting my thoughts out and making a difference in someone. Is healing.
Expressing in my own way with as many mistakes as you'll find, which probably won't get me into the NY best seller list, it's okay, I don't care. Hahaha!
Living with Parkinson's has made it hard for me to carry a conversation. The way I think is no longer the way I end up saying things. So writing, even though it takes me a while to do, gives me a chance to correct before I press send. Lol
2008-2013
And the symptoms have a name.
I began to feel constant pain on my left foot and toe. My left thumb had a slight tremor.
I was worried because it was affecting my work. Back pain & standing all day. That must be it.
I then started to get slight headaches, only on my left side. That was somewhat concerning because I rarely experienced headaches before.
Then came vertigo and that was a horrible feeling so this led me to have my neck checked. MRIs and a series of audio tests & vision. It turns out all of these symptoms were related to my spine.
Everything was on the left side of my body though.
Why didn't my body give me all of these signals back in Mexico? I realized that back there I held myself together because I had to. You know, when you just don't want to show the world you are crumbling inside.
I created another space where I felt safe and connected with my girls. With nature, with herbs, with Reiki, with healing. As soon as I arrived again in California and began working in Encinitas I lost that ability. My protection shield. The mind-body connection and I lost the power to regain it.
I began to focus on work and the fast paced life I had once left when I moved to Mexico. I went to the dark side.
And I let it take me.
That is when I began to see the changes in my body. I entered reality. Provide for my girls, live back with Mom and had to consider 2 of my girls going to college, not having a vehicle. Bike, bus, rides & walks. I never complained about it. I guess I just wasn't a lazy bones. I had a job. That's all that mattered.
“When I thought I was strong, it was because I needed to be.
Now I need to be strong because it's the only choice I have”
Between 2009-2012 I maintained the same symptoms but finally by mid
2013 I had my first results from an Orthopedic surgeon.
Diagnosis;
Degenerative spondylolisthesis of L4-L5/ L5-S1 ( Back)* Loss of leg muscle and strain, numbness when sitting. Foot & toe pain, numbness , stabbing pain,. Leg cramps.
Cervical spondylosis of C5-C-6 (neck)* I acquired burning stabbing shoulder pain and carpal tunnel
* I later started recognizing these symptoms and attached them to their scientific name
The uncertainty between these issues made it complicated for any of my doctors to make an accurate diagnosis and the reason they could not underline the main cause sooner . For Orthopedic surgeons It was hard to determine if it was spine related/ nerve damage or Parkinson's causing all my symptoms.
I am convinced that the nerve trauma from neck & back have great responsibility for Parkinson's in me.
I'm not done. Then came a dormant chronic sinusitis which they say caused the vertigo.
Well in my own research acute or chronic sinusitis may cause Neurological complications such as brain fog, lethargy or if there is an infection it can cause nerves to get agitated.
My primary doctor finally referred me to a specialist and I began to see a Neurologist.
I did not have any major symptoms for her to go by and prescribed antibiotics for sinusitis. That helped but I kept persisting on each visit and I believe she had my diagnosis as Parkinsonism. What's the difference ? Parkinsonism is having the symptoms of Parkinson's w/o diagnosis ( I didn't get that , do I have it or not?)
6 months later she ordered a DaTscan (Dopamine Active Transfer scan ) This is a SPECT imaging technique that helps visualize dopamine transporter levels in the brain.
“Nuclear Medicine,'' it said on the door.
A scary white door in an underground level you're only allowed with a permit at UCSD
I remember that day wishing I had not started this venture to find the cause. If you search you will find.
Finally my results from Neurologist
December 9, 2013
Diagnosis.
Parkinson's Disease (BOOM!!) age 49.
WTH!!!! Not really, it was WTF!!!
I remember leaving the doctors office, numb.
I thought to myself, what is Parkinson's anyway.
I knew I was going to have something but I guess I did not want it to be soooooooo serious.
I related this disease to older people. I had customers with Parkinson's but I only knew hand tremors to be the only symptom.
Oh boy. That is definitely not all!!!.
I cried and wanted to go into a dark place.
I remember all I got from my doctor was a tissue and a little book on how to deal with Parkinson's. I don't think I ever even opened it.
That day I happened to find that CD I had mentioned and remembered how I love that song and made it my “official after-the-doctor-visit” song. On my way back home I went to the library to find some sort of literature on PD and they were able to find ONE book . I cannot remember the title but I will never forget the first page.
It read, How to adapt your home to wheelchair access for the Parkinson's patient.
I got a rush of cold blood down my body and immediately shut the book and walked out.
Angry!
Thinking, No subtlety?
No Empathy?
I wanted something in exchange. Maybe to blame something or someone? The “F” word never sounded better than that day.
I had a moment to think of my life. Past and future, like a fast train. I had overcome so many other things life had put in my path, I thought.
Pause.
I can be the first woman cured of Parkinson's.
That's it! I had to tell myself something to believe now that everyone had me in a category.
I'm going to figure it out.
I wanted to do things and say….and I am living with Parkinson's disease.
I realized that there are others going through worse situations and think of how lucky I am.
I am being challenged by life and I have the opportunity to fight back.
If I want to.
This is all a mind thing, I thought. I need to reprogram myself before it tries to control me.
I need to go back to that body-mind connection.
Goal is to find a way for it not to progress. How?
Move! Exercise, do the things that make me happy.
Parkinson's affects about 50% more men than women. Most common in persons over 60 . 10% are diagnosed before the age of 50.
Being a woman with Parkinson's is less common than men. Parkinson's is a challenge either way. There is no “sucking it up” on this journey. I didn't cut my finger or have a sore throat.
I will have no control over the changes evolving.
It can be easy to fall into the abyss.
Into the “why me?” mode, but why would I even think I was entitled to an illness free life?
I began to think I had all the symptoms which I didn't really have.
These impulses I think just happen. We are disoriented in what's happening. So many thoughts scared me. I couldn't
stay there and dwell on it.
And literally you have no one to go to. You're on your own until you find a support group. Then you kind of see a light at the end of the tunnel.
After a year of not accepting, I accepted. I surrendered and accepted the challenge. I continued to work, exercised and traveled. I wanted to fulfill every gap of every day with something, just so I wouldn't miss anything. .
I began my adventure. I decided to take the bull by its horns, so to speak.
2014
I bought my spin bike and began my own classes at home. Ironically, cycling/spinning is great for people with PD.I had been spinning since 1998, you would think I was out of danger of getting Parkinson’s. Well, No!
Having practiced this sport for over 20 years has had many benefits, but I will tell you those later.
I started on 3 different medications. One for Parkinson's and 2 for back and nerve pain. This combination was horrible because it made me groggy all day, nauseous and I hardly ate. All of a sudden I lost 20 lbs. I lost muscle and didn't understand how it happened so I used this stage to train a bit harder for my next experience.
Hiked Yosemite falls, 4 miles up 3000ft in elevation. North America's tallest waterfall. ( Love showing off here because if I would not have known I had
PD, I probably would not have done this)
I then decided it was time to jump out of a plane. What a sense of freedom. Afraid of heights? Yes I am! But I immediately put that fear to the side as if I were walking through a dark hallway towards a bright exit. In that passageway there were open cubbies where to store fears, traumas, ego, sadness, speculation, procrastination, resentment, anger, anticipation. This all had to stay before that bright exit, before taking off.
I left it all behind and boarded the plane. We headed 10,000 feet to free fall for 30 seconds. In other words I had 30 seconds to gather my shit I had left in that passageway and turn it into a plan. My life plan. When the parachute finally opened there was a calm. I had a panoramic view of a little piece of earth and I was given this opportunity to feel , to breathe, to touch the air, for I was one of the few in the sky at that moment.
I had no baggage, no thoughts, ….just a brave enough guy whom I put my life in his hands.
Everybody and everything else was down below. I had absolutely no tremors and I was the happiest ever. I thought, this Parkinson’s is going on a ride with me, I am not riding with “it”.
I have photos to take, moments to save, music to dance, songs to sing,
