12. Go straight up I-35 and take a left

A Parkinson’s Disease diagnosis does not equal a “disability” caused by Parkinson’s Disease!

I got the diagnosis, sans the availability – or the NEED – of a handicap parking permit… so, as reality set in, I took stock of myself – and found the same smart, pretty, creative and productive lady I had always been! Reality for me simply required that I redefine what it means to be “up to speed.” I was not – am not – disabled. I was simply facing some limitations – and doesn’t everyone have limitations?!

SuperShannon stepped up to the plate, in search of  information, encouragement, and support. She found all three at the National Parkinson Foundation / Young Onset Parkinson Network web site, and, there, “we” learned about – and signed up for – a seminar for people with young onset Parkinson’s, that was coming up in just a matter of weeks.

I traveled, alone, to Minneapolis for the multi-day event with little idea of what to expect. And, I confess, that, after checking in at the hotel, I wondered if I had made a mistake by coming at all. I was feeling a bit depressed – and not anxious to become more so.
I went down to the lobby to register, glancing all around for the other “diseased” folks who had come for the conference. It came as a bit of a surprise when I realized that, with all the people around me who were registering as well, I had not found myself in a tangle of canes and walkers. I slept well that night, feeling “normal” and less afraid than I had in months.

As I attended sessions and spoke with other attendees, I found almost everyone to be shocked to find that I was there as a Parkinson’s patient. Apparently the tremors and slowness that influenced my daily productivity level were not discernible to even those who could best relate – and most were even more shocked to find that I was attending my first YOPN conference so recently after being diagnosed! Many PD patients that I met that weekend were years beyond their initial diagnosis, but just beginning the journey for knowledge and support. Most had told virtually no one that they have Parkinson’s, others, only their closest confidants.

It was an educational event. My only disappointment that weekend was that some sessions ran concurrently so I was not able to hear every speaker and gain knowledge on each subject that was addressed. A great deal of information was imparted: some scientific in nature, some, philosophical; almost all was helpful to me as a PD newbie.
Reviewing my notes from the conference, I offer some of the simplest – but, also, most important – points that I brought away from that YOPN conference:
• Having PD is not your fault!
• PD affects every patient differently.
• It’s important to stay attuned to your personal progression with Parkinson’s.
• Seek information… minimize blame, guilt, and stress… avoid secrets and silences… increase hope and    optimism.
• It is important to articulate your feelings. You must talk – and laugh – and touch!
• Ask for help! (You can’t do everything; but remember: most people enjoy being helpful to others.)
• Don’t be defensive of family or co-workers’ observations. (They may be right.)
• Do not ignore warnings that your driving has become dangerous.
• Remain as active as you are able. (If you get in a wheelchair, you’ll never get out.)
• Exercise is as important as your PD medications.
• Create a Paper Trail:
o Tell your employer IN WRITING about your disability.
o Request reasonable accommodations; expect them to be fulfilled
• Preserve your personal rituals and celebrations. (Adapt as necessary.)
• Long-term denial is not OK.
• You are still here. You are still you. We are all changing.
• There are new treatments in our future!
• Find a neurologist you would want to recommend to every PD patient!
• Never give up hope!

11. What will be, will be

The upside of not working is that I was able to travel to Virginia for my niece’s wedding without having to beg for time off. Most of my extended family was coming from Texas; a few relatives who were scattered elsewhere in colleges or careers were also expected. My own sons were coming from Tennessee, and it was that weekend that I intended to share the news with them about my diagnosis. No one else who was there – except my parents – had been told.
Among the guests was one of our former Dallas neighbors, a woman my sister’s age, who had married a man five years younger – which meant that he and I were both 49 that year. Though he and I had never met, I was aware that he has Parkinson’s, and, of course, my interest was peaked. I was able to observe him that Saturday evening. Although his movements seemed to require some extra determination, I probably wouldn’t have noticed if I hadn’t known he had PD. Frankly, I was relieved to find that he seemed as “normal” as the next guy.

It was a fabulous weekend and I maintained my secret until mid-day on Sunday when it was almost time for my sons to depart. Before letting them get away, I needed to tell them my news. The three of us went to a nearby McDonald’s and, over lunch, we talked about the weekend: how much fun we’d had and the people we had met.
Looking for a segue, I asked if they had met my childhood neighbor and her husband, John. “Yes,” they assured me, with one adding, “He’s quite a bit older than she is, isn’t he?” as his brother nodded in agreement.
“No,” I said, explaining the actual age difference between them; then adding, “He has Parkinson’s Disease.” And, before they could comment further: “And so do I.”
Now I know how to get my sons’ attention! At first they just sat there; stunned, I suppose, by the “bomb” I’d just dropped on them. At a loss for other words, they each said, “I’m sorry,” and, of course, they wanted to know what the future would hold (for each of us, I’m sure). …I didn’t say it then, but, looking back, the answer should have been obvious: “Que sera, sera.”

10. Some of us are slower than others

 

Failing the Series 22 exam meant that I would not be getting an NASD broker’s license – which meant that I lost my job at the oil company.

I spent weeks – and then months – recovering from the ordeal I’d gone through, just trying to pass the test and dealing with the diagnosis. I spent countless hours checking monster.com and sending out resumes as I sought a new line of work. I also spent a great deal of time researching Parkinson’s Disease.

Turning once again to “temp” assignments and contract work, I gained a position in research and placement, seeking potential employment for the “trailing spouse” of employees being hired and / or relocated by major corporations. It was gratifying work, in a pleasant environment. I enjoyed the telephone interviews, the cold calls to prospective employers, and the opportunity to use my writing skills as I prepared biographies of the professionals we were “selling.” I was happy with the work and my ability to produce quality material – but I was very aware that I was not keeping pace with my co-workers. I was not making my daily quota and, no matter how hard I tried, I could not catch up.

I had not disclosed the fact that I have Parkinson’s, and I was painfully aware that my ability to take handwritten notes during phone conversations was noticeably hampered by my “disabled” right arm. My typing was slow and was increasingly effected by some fingers that arbitrarily struck certain keys repetitively (while other fingers couldn’t muster enough pressure to type any letter at all). When I tried to hurry, I became stressed, and, the more stressed I became, the slower and less productive I was at my job… and, of course, I was constantly yawning, and nauseous, because of the Mirapex.

One Monday, four months after I’d begun working in that role, I was running late for work. I rushed into the office and rounded a corner to my cubicle, only to find someone else at my desk. I stood there, confused, as my supervisor rushed up behind me and clutched my elbow. “What are you doing?” he asked, as he escorted me into a nearby conference room and closed the door. “What?” I asked. But those words were barely out of my mouth before he spoke again: “I mean what are you doing here?”

It seems that I had been called off the assignment. I wasn’t supposed to have come to work that day! I just “wasn’t up to speed,” he said, uncomfortably, adding that the temp service was supposed to have called me.

[OUCH!]

But… ah, I thought… someone was even slower than me at getting their job done!

9. What? No spoonful of sugar?

In an effort to be proactive about the whole thing, I searched the internet for all that I could find on Parkinson’s Disease. I downloaded a checklist for determining whether the doctor / patient match was a good one, and charts for tracking the timing of my medications. …OK – it was one prescription – Mirapex – but I was to take it three times a day – and I had never been one who took pills. Besides, from everything I’d read, it would be important to track “on” and “off” periods to determine whether the meds and the dosing were working for me.

Someone who loves me dearly gave me a watch with multiple timers that would go off to remind me to take the drug, and I took the pills that had been prescribed. They made me burp. I felt nauseous. Sometimes it seemed that my own “spit” was too thick to swallow. I yawned often and deeply, and, at work, I fought against falling asleep at my desk.  I didn’t need to hear the beeps to tell me when it was time for more medicine; every time I began to feel better, the timer would go off!

8. A diagnosis can’t stop the daily grind

 

I had sworn my parents and my best friend to secrecy until I could find an appropriate time to tell my sons, and then my sisters, in person.

It was my boss who had insisted that I see a doctor in the first place. We had been friends for thirty years, so, of course, I took him into confidence as well.

I had one last shot at the Series 22 exam, a tricky 100 question test for which studying had become the bane of my existence. Unable to focus on much more than the diagnosis, I found it increasingly difficult to concentrate. I wasn’t sleeping well and was coming down with something.

I had learned that my boss, who had somehow decided that it was in my best interest, had called my co-workers into his office and disclosed my Parkinson’s diagnosis to the entire group, I was furious! I was exhausted. I was sick. And I was scared. I begged to postpone the test until the following week, but my boss said no.

The next day, as I sat at a computer in the controlled testing environment, I was shaking so badly that the proctor slipped up behind me and placed a sweater around my shoulders. I completed the exam, feeling miserable, yet fairly confident of a passing grade. I gave directions to the computer and waited for my score. When the number appeared, I was stunned to see that I had failed the exam by one point.

7. Parkinson’s: not just for old people anymore

It was my routine to join my parents for a cocktail in the evening, and, on that day, sitting in their living room, sipping a martini, I disclosed the doctor’s findings. “I have Parkinson’s Disease,” I reported. The words felt foreign as I spoke them aloud in reference to me, for the first time. Then, my best friend called from Nashville, as she was also anxious to hear what I had learned at my doctor’s appointment. “I have Parkinson’s Disease,” I repeated, still uncomfortable with the words.

“No” was all any of them could think to say. And “yes” was all I had to offer. I guess I was so relieved not to have ALS, and maybe I was still numbed by the news. More likely, it just didn’t seem real to any of us. Old people had Parkinson’s. I was only 49. “How could they be sure?” they asked. And “What now?” was the next question. But I had no answers for them.

On the way home from the doctor that day, I had heard, for the first time, a brand new song by Tim McGraw. The words had gripped me immediately and I had pulled off the road to listen closely to the lyrics…

He said I was in my early 40’s,
With a lot of life before me,
And a moment came that stopped me on a dime.
I spent most of the next days, lookin’ at the x-rays,
Talkin’ ’bout the options and talkin’ ’bout sweet time.
Asked him when it sank in, that this might really be the real end.
How’s it hit ya, when you get that kind of news.
Man what ya do.
And he says,

[Chorus]

I went sky divin’,
I went rocky mountain climbin’,
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I’ve been denying,
And he said someday I hope you get the chance,
To live like you were dyin’

I had no answers for my parents or my friend that evening, but Tim McGraw’s song had definitely offered me some wise advice that afternoon. I had just gotten that kind of news and – though skydiving, rock climbing, and bull riding are not on my personal list of “things to do before I die” – it was time to take stock of what is on that list! I reminded myself: I was still “young” …and I had plenty of living yet to do! We’re all dying, after all. (Not one of us is getting out of this world alive!)

6. Diagnosis: Parkinson’s Disease

The new neurologist examined me. At her instruction, I walked up and down the hallway for her observation. I closed my eyes and touched my fingertips to my nose. She tapped on my kneecaps with her little rubber hammer, and stood behind me pulling my shoulders toward her, before releasing them to observe just how I bounced back to an upright position.

The doctor performed a few more “tests” before announcing her diagnosis. “You have Parkinson’s disease,” she said. Then, “It’s not going to kill you. Lots of people live with it. Some, for decades.” she added, as she handed me a prescription – and a charge slip to give to her business administrator on my way out.

I had spent less time being examined than I had spent in this doctor’s waiting room. No blood or urine had been collected. No invasive procedures had been necessary. She had simply observed me and, by the training which deemed her a Movement Disorder Specialist, she had rendered a diagnosis that would change my life forever.

The doctor’s “complete” diagnosis was young onset Parkinson’s disease. I didn’t feel very young. I left her office feeling dazed and confused. She had offered very little in the way of information about the disease – and I had no idea where I might find support to help me deal with it. …Not from her, apparently.

5. Another Boss Demands Answers

If I had been 19 years old – instead of 49 – my new one bedroom apartment in Dallas might have thrilled me. It did not, but I had little time to dwell on that. I had accepted a position offered by a former employer who had become a life-long friend. My job was to solicit customers for oil and gas deals, through telephone cold calls. I found that I was fearless on the phone and very good at what I was hired to do – but the company I worked for was getting licensed as a broker-dealer and I was told that I must be licensed, too.

I studied for a week and passed the Series 63 exam. I studied for another week but failed the Series 22 test, which meant I had to wait a month to take it again. I was focused on studying when, one day, my boss / friend said, “I want you to get that damn arm looked at! When we all walk down the hall we swing both of our arms, but your right arm just hangs there!” I had previously explained that I had crushed the ulnar nerve, and that nothing could be done about it, but he insisted, saying “I just know there is something they can do to fix that.”

Wanting to believe he was right, I scheduled an appointment with his doctor, who referred me to a neurologist.

The neurologist performed nerve conduction tests on my arm and concluded that my nerves were just fine. I sighed with relief just before he said, “But I’m pretty sure you’ve had some sort of Brain Event.”

His words rang in my ears like a fire alarm! And then he added, “I want to schedule an MRI. This could even be ALS – Lou Gherig’s disease. We need to rule that out.” “Yeah. Let’s do that,” I thought, but couldn’t speak..

And so I showed up for the MRI. They ran me through the tube. Not fun. Real noisy. I was all alone – and I hated that most of all – until it was time to run the test again, this time with dye, …Apparently, I have small veins. And small veins require small needles. But who knows this stuff? …Not I! And, obviously, not the technicians, either.

I lay there as they stuck me – time and again – trying to inject the dye. …Right arm. ..Left arm. …Right arm, again. ..And, just as they prepared to transport me to the nearby hospital, they struck a vein! With tears streaming down the sides of my face, and, my arms sore from repetitive pricking, back into the tube I went. “Don’t move,” they reminded me, again and again, as I fought the urge to cry convulsively.

Somehow I got through that test, but the test date for the Series 22 license still loomed ahead. I felt like a pin cushion and both of my arms were badly bruised. I tried to focus on my studies, but my brain was wrapped around the doctor’s casual mention that “this could even be ALS” and I was very afraid. I begged to postpone the 22 exam, but was admonished to take it on schedule. Again, I failed by a slight margin, which doomed me to another 30 days of studying the material.

Then, the neurologist called to say that my MRI films were back. “I’m referring you to a specialist,” he said, without further explanation. …I went numb as fear gripped me, so I wouldn’t have heard him, anyway.

 

4. Life-altering Events

 

I rocked through a few more years – and a few more jobs. A sales position I loved ended abruptly six months after it began, when I discovered that the product I was hired to promote did not exist. I secured a new position, selling yellow pages advertising – and loathed every minute of it.

In no way a part of the long-range plan for my life, I was divorced. My sons were old enough to have jobs and cars and didn’t require much of me anymore. My best friend had married a tyrant and had suddenly disappeared from my life. I had fallen deeply in love again, only to have my heart broken when that romance ended without warning.

Three years went by. My best friend came back but my boyfriend did not.

I kept hearing little voices saying, “Move to Dallas.” Those voices belonged to my parents, who recognized that the events of recent years had left me in emotional and financial straits. They pointed out that I was rattling around by myself in a big house, dealing alone with its daily upkeep and general maintenance, and lying awake at night, worrying that the huge pine trees in the backyard would one day blow over and crush my neighbors’ homes and children.

I listed my home for sale with the realization that it could be on the market for months.

Three weeks later, I had an offer on the house, and, three weeks after that, I left Nashville. I sold or gave away everything that wouldn’t fit in the U-haul truck I’d rented, and, in true Clampett fashion, made my way to Texas.