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Sunday, August 20, 2017

The 10-Year Anniversary of My Parkinson's Diagnosis

To be honest, TEN years ago, I wasn't feeling very optimistic. I still had my sense of humor, but I was becoming very discouraged. I had been sending out "The Letter" to neurologists for weeks and weeks and had not received even one reply. Since I had been previously told, by multiple neurologists, that my problem was NOT Parkinson's disease, I was completely clueless as to WHAT was wrong with me. There were only three names left on my alphabetical list of neurologists within 500 miles of home. Two W's and a Z. I almost gave up, but I decided to go ahead and mail those last three letters.

My symptoms were getting worse every day. I needed more and more help with normal daily activities. Whatever I had was progressing at an alarming rate. I knew that within a matter of weeks, I would no longer be able to walk. 

My Essential Tremors were being managed fairly well by the propranolol, unless I was upset, then my whole body shook uncontrollably. It was the stiffness, lack of dexterity and coordination and the feeling of being completely tensed up that was getting worse. 

I could barely bend my leg to put pants on. Walking was becoming more and more difficult. My right leg felt like someone had put a 50-pound concrete cast on it from hip to toe. I didn't have enough dexterity to fasten the hooks on a bra. Buttons and zippers? Forget it, no way! I had to stand with my arms above my head, like a two-year old, and have Wonderful Husband take my shirts on and off. (He actually seemed to enjoy the taking off part!) It was almost impossible for me to get my right arm behind me to get my arm in a sleeve. I could no longer get up from a chair without help. My neck was frozen in a forward position, I couldn't turn it left or right. There was no pain, it just wouldn't move.

Anything that required any skills of my right hand were gone. I now did everything one-handed using my left. Wonderful Husband cut up my meals into bite size pieces. I could no longer even manage to put my hair into a pony tail. My right hand was balled into a fist and my right arm curled up against my abdomen. If I forced them straight, they curled back up as soon as I stopped concentrating.
I was so tense, every time the phone rang or a passing train blew its horn, I jumped. Sometimes, even my Wonderful Husband saying "Hey, Honey" startled me. If he came up behind me and touched me on the shoulder, I'd startle so badly, I'd almost fall over. The only thing that gave me any type of relief was sleep. It seemed like I felt best first thing in the morning or just after waking from a nap. 

Days went by and I had heard nothing from the last three letters. I didn't know where else to turn. Everything orthopedic had been ruled out, as had a brain tumor. 

Then on Tuesday, August 28th, 2007, the phone rang, and I jumped. Wonderful Hubby answered it and handed the phone to me. It was a woman's voice, saying they received my letter, and that the Doctor thought he could help me. Could I come in on Friday at 3 pm? I said yes, and handed the phone back to Wonderful Hubby so he could write down the doctors name and address. The doctor was in Yuma, only about 35 miles away. 

The next day, the phone rang again, and again I jumped. It was the same woman, saying they had a cancellation and could I come in tomorrow, Thursday, August 30th, 2007 at 11 am instead? I said yes. The Doctors name? Dr. Zonis, the last name on my list. I would later find out the woman who called was Dr. Z's wife. 

I wasn't holding out much hope, I had doctors tell me before that they knew what was wrong...and then they didn't know after all.

We went and Dr. Zonis gave me a quick neurological exam (finger touches, foot taps, touch finger to nose) and proclaimed Parkinson's. He wrote a prescription for generic Sinemet, told me to get it filled at Walmart and to come back the next week. I asked if he was sure. He said he was positive but that I would know within a week. He said he KNEW it was Parkinson's from just reading my letter. 

YumaBev and Dr. Z 

He asked about my work history and I told him I'd been unable to work for several years. He told me to go to Social Security TODAY and file for disability. His office person told me where it was located. 

We left his office, dropped the script off at Walmart and went straight to the Social Security office and filed for disability. We had some lunch, went back to Walmart, picked up the medicine ($35) and went back home. I took 2 pills that day (Thursday), and 3 the next. While watching TV on Friday evening, I noticed my neck wasn't stiff. I still remember saying, "My neck feels like jello, I can move it."

It's hard to believe that was 10 years ago! A lot has happened during those years. Dr. Z retired, changed his mind, re-opened his office and then retired again. The medicine helped me greatly, then it started not helping as well, so I had DBS surgery

I started this blog, wrote a book, took over running the local Parkinson's support group and I made it to the World Parkinson Congress last year in Portland, Oregon.

If you had asked me 10 years ago today, where will you be in 10 years? I'd have answered, "Dead or completely bedridden." But here it is, 10 years later and I am neither. 

As for the Essential Tremor, turns out I didn't have it after all. Apparently the neurologist who diagnosed me got that wrong, too. 

And it is all thanks to one Doctor, whose wife took the time to read a letter, show it to him and then decide to help me. I often wonder what happened to the other dozens of letters I sent out. Did anyone actually take time to read it? 

PS Dr. Z knew I didn't have insurance, so he wrote the prescription for double strength and had me cut the pills in half to save me money. Later on, he gave me samples and would get extra from the various pharmaceutical reps for me. He only charged me $30 a visit. Now that I am on Medicare, my co-pay to see a specialist is $40. I'm afraid there aren't many people out there in the medical field like him, which is sad. I hope he's enjoying his retirement, he deserves it. 

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  1. Sounds like an absolutely wonderful Doc! Sure wish I had one like him although mine isn't to bad I guess. I sure wish I would have made it to Portland, would love to have met you and I also have relatives in the area. Oh well, maybe next time. Love your stories, keep up the excellent work! Wish I could write like you.

  2. You are so amazing. Your words are so helpful to us who also has Parkinson’s. Keep us moving like you. Cheryl

  3. Yeah!!! 10 years.... Congratulations Sunshine! Kathy