My Life Changing Story With Parkinsons Disease
Diagnosed At 43 With Parkinson's Disease
Parkinson's Disease is a chronic and progressive movement disorder caused by nerve cells in the brain not generating enough dopamine. Symptoms like tremors, shaking and muscular rigidity worsen over time.
Being diagnosed with Parkinson's Disease (PD) was life changing and scary for me. My heart sunk and every hair on my body stood up. I was in complete disbelief.
Being employed, I wondering how and when my life would start changing. Meanwhile, I was trying to hide my symptoms and appear normal at work. A year later I was laid off and living on disability.
In a blink of an eye my lifestyle changed. Now what? I have young onset PD with no cure. The doctor told me my symptoms would worsen over time and my medications would get stronger. Needing someone to take care of me was unavoidable.
My independence was slowly fading away. My physical activities would wither away. I was depressed.
I found out there are ways to live a quality life with PD. I will not just accept my condition. Look out PD, here I go.
This is my story.
Right Arm Then Right Foot
My right arm chicken-winged and weakened one day after playing softball with my church league. I was under the delusion that my arm would work itself out. YEAH RIGHT! WHAT WAS I THINKING?
At around the same time, to make life even more exciting, a severe pain developed in my right foot and ankle but there was no external swelling. Ouch! It was so painful that I could barely walk on it. It felt like I stepped on a knife. OH THIS GETS BETTER. I had to wait a month for my doctor's appointment. Yes, it was a painful month walking and soaking my foot every night in Epsom Salt. This made life real interesting between home, work and driving. Yes, I was driving with my painful right foot. The good news is it only hurt when I stepped on it so driving was easy even with my weakened right arm.
After seeing the doctor and getting x-rayed, I was diagnosed with "internal swelling" and a "missing ligament" in my right ankle. I had to wear a boot for three months until my next appointment. AAAHHH!!! The relief that boot gave to my painful ankle was amazing. Realistically, I should have marched myself immediately into the foot doctor's office and demanded a boot right away instead of waiting for a month but apparently I’m not that smart. I developed a limp while waiting and still have it today. OKAY, ALL THE BAD STUFF IS OVER RIGHT! WHAT ELSE COULD GO WRONG?
Diagnosed With High Blood Pressure
I was diagnosed with high blood pressure and was borderline diabetic. I started taking the lowest milligram of high blood pressure meds. If I lost some weight and improved my diet then I could get off the meds. NO PROBLEM! I still ate moderate levels of bad food but I revved up eating a daily supply of fruits and vegetables. I lost 30lbs in 6 months and yes, my stomach was the last thing to shrink. WOW, I had not been that lean in a long time. Good news, blood pressure was normal so I was off the meds. THINGS SEEM TO BE LOOKING UP, RIGHT. WRONG!
Diagnosed With Parkinson's Disease
I developed shaking in my right arm. I waited a bit and saw my doctor and then had to wait another month for an appointment with a neurologist. A friend went with me and after the doctor physically examined me with the typical motor skills testing, I was diagnosed with Parkinson's Disease, "WHAT? I AM TOO YOUNG," I screamed in my head while tears started to fill my eyes. In my mind, I was on a mountaintop, screaming at the top of my lungs or was that me shaking out of control. It was hard to tell. I tried to pass it off as the softball injury, but he would not buy it.
Amazingly, I went back to work that day, held in my tears and told no one. My pride was wounded. I told my friends the truth after I was laid off. I have always been a strong person but it can lead to ignorance. I now live on disability. Oh boy, I’m living the good life now. Not exactly what I had in mind for retirement.
The Neurologists ordered MRIs of the brain, neck and spine to eliminate other possibilities, like a stroke or tumor, but all tests were negative. Unfortunately, I had to wait a month to get an appointment to hear my results, and I was not yet ready to wait.
I wanted to find hope and a chiropractor I found was selling it. He said he didn’t think it was Parkinson’s and he could make me well. I wrote my doctor telling him about what I found, but he said he still believed I had Parkinson's and advised I come in for treatment and gave me a name for a second opinion. I was upset at my doctor for not realizing I did not have Parkinson's.
I do not want to bash chiropractors. I am sure they work for many people and probably for many of you reading this. And it did help me with some of my body difficulties. But it did not stop the shaking. I remember trying to convince myself this was going to stop my symptoms.
My friend who had gone with me to see the neurologist was not being supportive of being cured by a chiropractor and I shut him out of my life. I was talked into three months of sessions and then more when the chiropractor found reasons why it would not work yet. I developed a very difficult limp that made me walk differently than anyone else on the planet or at least that is how I felt. I had to basically carry and drag the leg as it would no longer perform the full walking movement. Eight months after the initial neurology appointment, I got in contact with my friend and he came over. I said one of the hardest things I have ever had to say. "I have Parkinson's."
We went for the second opinion, Parkinson's. I started meds a full year after my shaking had begun. The second doctor said that my limp was not a regular Parkinson's symptom. It is probably a good thing I did not know that because that is what really convinced me I must have Parkinson's and I needed help. I started seeing a physical therapist, but I stopped going because of the money while I still had the limp. I still do. When I am on proper Parkinson's meds, I can walk normal. When I am not, most of the time I cannot. (I figure in a couple of years I can rent myself out as a jackhammer or massage unit.)
Queen of Denial
I remember when the doctor started recommending PD support groups to my stubborn, unaccepting attitude. I remember thinking, "Yeah, right, whatever." I went home and filed the information in my circular file (the trash). I was not ready to hang around people shaking out of control.
My friend and I started attending PD workshops immediately. Immediately meaning when I stopped acting pig-headed, accepted my condition, and started taking my meds. Yes, I was Cleopatra, the queen of denial. Now it is common to go into denial, but I took it to a new art form. And if you are reading this, you have probably experienced your own denial or the denial of someone you care about. Just remember, you are not alone.
Don't Get The Shake, Rattle and Roll Blues, Stay Informed
I am here to tell you from personal experience that attending PD workshops is extremely informative, entertaining and a great way to meet other people. I found out tons of information I never would have found out from my doctor. The discussions I had with people with PD was a real eye-opener, and sometimes, we exchanged contact information. PD information goody bags are given away at almost all events. Sometimes, food and beverage is served and PD information booths are set up around you so you can gather information and ask questions. Trust me these events are so much better than sitting at home, on the Internet, trying to figure it out by yourself. BEEN THERE, DONE THAT.
I was a very bitter woman feeling sorry for myself and never thought I would cross-over to the PD side and accept my condition. To my surprise, I found myself thirsty for information. I was taking notes (this is really fun when you’re constantly shaking), asking many questions and taking home piles of reading material.
I met people who had PD for over 10 years and were attending their first workshop ever. One guy could barely talk, while others could barely move. I met one man who was an inspiration to me because he has had PD for 40 years and looks and moves great because he runs every day and runs in occasional marathons.
Millions Have Parkinson's Disease
People do not realize that about 1 million people in America and about 10 million worldwide have PD. There is so much research and information that PD patients and caregivers should know and unfortunately they do not. This is very sad. PD associations have developed ways to live a better life. There are many good books to read and videos to watch. Please do not sit around until the condition worsens. GET INFORMED.
Parkinson's Disease Trials
PD trials are constantly recruiting PD patients and they usually pay money. Sometimes they recruit family members because their trying to be able to detect pre-PD. I have participated in a couple of trials and got paid. You are not going to get rich, but it is a way to help out to get closer to the next breakthrough.
Exercise Avoids Rigidity and Improves Flexibility
Here is a relatively recent breakthrough from one of the symposiums. They have found that something called "forced exercise" can really help Parkinson's patients with their balance and muscle control in their legs. To sum it up, ride a stationary bike as long as you can, no resistance, just pedal and pedal and pedal at 60 to 90 rpms. Do it a little longer when you feel like stopping. Now I think it is already evident I am stubborn so I have not done it as often as I should, but whenever I do forced exercise, my walking is improved and I am barely shaking for about 2 hours. If you are ready for it, see if it can help you too.
If you are not up for forced exercise, then get some type of regular exercise. Keep active. Keep your brain sharp. Do puzzle teasers or whatever makes you feel good.
I purchased David Zid's book and DVD, "Delay The Disease". He claims his exercises get rid of rigidity and improve flexibility. He says to make big arm and leg movements whenever possible. I am following these exercises and so far, I have seen improvement. The exercises are to be performed every day and some only 2 or 3 days a week. The spiral bound book is all color photos with short descriptions and arrows showing which way to move. I highly recommend this book.
Accepting Parkinson's Disease With Humor
I accept I have Parkinson's and the limitations it added to my lifestyle. I accept that my mobility speed has changed from a Porsche to a VW Bug. I accept my shaking speed is equivalent to a jackhammer or portable massage unit. Yes, I love humor and enjoy making fun of myself. No, I do not sit around feeling sorry for myself (although I did at first). I do not let PD define me. I wake up every day saying, "How can I enjoy my life today," and DO IT. I finally realized that the choice to be happy or bitter about my disease, affects my attitude towards myself and other people. My attitude also affects whether people want to spend time with me or not and I have no desire to spend my life alone. Attending workshops and seeing I was not alone in living with PD brought peace and hope to my heart.
Because of the massive research studies being conducted, there are many options available to improve living with PD and more helpful things are coming out all the time. Some available items are dance, exercise and swimming classes, chorus groups called "The Tremble Clefs", physical and voice therapy sessions.
If you are reading this and you have Parkinson's, keep your chin up. Living a long and fulfilling life is possible. Become very knowledgeable and informed by researching the Internet, reading books and watching videos. A good start is attending PD events and hearing the latest news by highly educated speakers. Also, attending PD events, you get the opportunity to meet other people you who are enjoying their lives, dealing with their condition and are an inspiration to all of us.
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