Backto the Edge of the Forest

Carolyn

New York State

Diagnosed with Essential Tremor 1989

Diagnosed with Parkinson's 1994

At the Pine Creek Gorge

I have always been a hale and hardyperson. Rarely have I been sick, and I can't even begin to guess atthe last time I spent time in bed with a fever or was sidelined fromdaily activity. Sometime in 1988, at age 43, I noticed that my rightthumb "moved". I didn't have a word to apply to it, but after a timeI decided to mention this "movement" to my internist, whom I hadgreat faith in. I had already begun my research and spoke the wordsParkinson's disease. Her first reaction was, let's watch and see. Shesaid I was too young to have Parkinson's disease.

The Essential Tremor Years

At some point in 1989 my internistdecided that it would be prudent to have a neurologist check mytremoring thumb. The neurologist noted that my hand now had a slighttremor and diagnosed Essential Tremor, no treatment warranted. So, Ispent the next few years with ET.

I was the Human Resources Manager for aworkers' compensation medical supply management company. The onlytime that I noted the tremor in my right hand was in meetings or whenI was not active, which wasn't very often. I had always taken pridein my great posture and stride when I walked. I was busy at work,working about 50 hours a week, and took pride in my fine needlework.I was in that job for four years, developing the department it from aone-man position with 200 employees to managing 1,000, and sevensubsidiaries. It was a very busy time.

In Februay 1994 I changed jobs again. Iwas now the Resident Manager of the Tampa Ronald McDonald House. Thiswas a very challenging job, since I had to be office manager, socialworker, friend, police, fundraiser, supervisor to two employees,ground manager, repairman, and anything else you can think of. I hadalso begun to seek out the best neurologist for me. Of course, I wassoon to discover that I already had the best neurologist for me, butI had to prove that to myself. My most memorable neuro visit was to adoctor who actually got up from behind his desk to show me howsomeone who really had Parkinson's was suppose to walk…stoopedover and shuffling. Well ya! If you are in Stage 5 of the diseasemaybe! I was so angry when I left his office.

In 1994, since my favorite internisthad moved to Arizona, USA, I took my PD-matters into my own hands andmade an appointment with the University of South Florida MovementDisorder Center at Tampa General Hospital, Tampa, Florida, USA. I wasfortunate to have the opportunity to see Robert A. Hauser, M.D., whois the co-author of Parkinson's Disease &endash; Questions andAnswers (there are three editions), which is today's physicians "goldstandard" on Parkinson's disease.

ET to Parkinson's: The Shift to a NewReality

Every two months, over a six-monthsperiod, I saw Dr. Hauser…a no nonsense kind of guy. On October24, 1994, he made his official decision…Parkinson's disease. Iwas a little taken aback, but I had already done my research and hadcome to the same conclusion long ago. At this point I had a slightgait disturbance, and the tremor in my right hand.

The week of October 24, 1994 was abanner week for me, and gave me almost a year to think of thingsother than Parkinson's disease. On Friday, October 28, 1994 a youngwoman ran a stop sign. I was in the third car to be involved, meetingthe car she broadsided head-on, which pushed me rear-end into atelephone pole. My new car was an accordion. I had heard thatsometimes trauma would worsen PD, but in my case, gratefully, it didnot. It did take me about 18 months to fully recover, including fivehospital submissions for surgery.

Coming Out of the Closet

After about three years at the RonaldHouse, I decided it was time to let the volunteers know what wasgoing on with me. Surely this work environment would be the mostaccepting of all places. I considered the purpose of the RonaldHouse, a place where families of hospitalized injured and/or sickchildren called home for a given period of time. So, I typed up anotice to the volunteers and placed it in the "volunteer book". Sincevolunteers were on duty in three shifts, and two of those shift Ididn't see that often, the volunteer book was the best place of all.Within three hours of placing the notice I received a call from mysupervisor in St. Petersburg. Remove the notice…volunteers wouldthink I couldn't do my job. What a slap in the face! This was the"icing on the cake" for me. Sadly, after four years with the Houseand not too long after that slap in the face, I gave notice and leftthe most awesome job I ever had. I grew weary of the narrow-mindedattitude.

Living in close proximity to me were mytwo daughters, my older sister, and my mother and her husband. Manytimes over the couple of years following my diagnosis I would askthese family members if they would like information about Parkinson'sdisease. Sadly for me, the answer was always "no".

After leaving the Ronald House I wentto work managing group benefits for a grocery store chain that isbased in my home town, about 30 miles from Tampa. I managed benefitsfor 125,000 employees in over 700 stores in four southern USA states.It was the "biggest" job I had ever had. It was while I was in thisjob that PD began to challenge me at work.

I worked so very hard for the firstyear. The department and the supervisor lived in the "dark-ages"technology-wise. For goodness sake, there were four typewriters! Thenew Director, who had hired me, wanted change, lots of change. So, Iwent about making change, learning new software like Access, things Inever knew existed I had to learn. After two years I began to wonderif it was time for me to call it quits and stop working. But how inthe world was this single woman going to do that.

The Employment StruggleBegins

As Manager of Group Benefits I knewonly too well about long-term disability insurance, and when myinitial opportunity to purchase it came along, I did just that. Bydoing so at that point in time, there was no pre-existing conditionapplied. So, I began planning to quit work. You see I had not savedover the years in the way that many have the opportunity to do. I hadhelped raise my eldest grandchild until she was five years of age,then they left and then returned after seven months for another twoyears. This alone was a great financial burden for me to bear andsaving money was not an option that my budget allowed.

I worked the financial numbers onpaper. I considered the fact that the first 90 days after stoppingwork were considered an "elimination period" under the long-termdisability insurance plan, and not covered. This meant that the first90 days that I did not work I would have no income at all. I frettedand stewed over this. I was so stressed out about it. I needed toquit working!

A company the size of mine plans monthsahead for any event, such as an insurance open enrollment period. Thecompany prided itself on the fact that we did everything in-house. Wehad the largest print shop under one roof in the State of Florida. Itwas November of 2000 and I had to begin to prepare for the annuallong-term disability insurance open enrollment period, which occursannually in June. This open enrollment planning was much moredifferent that we had ever had in the past. I had to develop a newenrollment form. I was working with Hartford to develop a newbrochure. We were rewriting the computer program that provided thedata. Suffice it to say that every component had to be reworked orredesigned.

In December 2000, I was informed that Iwould be one of the two facilitators for the annual BenefitsInformation Workshops, which are held annually in March. Every yeartwo managers from within corporate were assigned the task of going onthe road for a month, traveling around Florida, Georgia and SouthCarolina presenting these workshops.

The Stress Builds Up

Meeting deadlines was mandatory. Notdoing so was completely and totally unacceptable. Now not only did Ihave my normal duties for all the other benefit plans, openenrollment preparation for LTD, but now I had to prepare to be on theroad for a month in March, which was a critical month for LTD OpenEnrollment planning. Additionally, I had to work with my road partnerto develop our own slide show for the presentations, and rehearse infront of other managers, my director and my senior vice president.Suffice it to say, I was one stressed Parkie.

By February my ability to maintaingoals and deadlines was slipping. I knew it, my boss knew it, but shestill had faith in me. So, on the road we went. Of course, it wasmade very clear to both of us that we were expected to manage theroad trip and the many presentations, manage our normal work back atthe office by cell phone and computer at night. This meant that I hadto continue to work with the print shop and Hartford to reach myprinting deadline and get the 100,000 enrollment packets out the doorand onto the trucks ON TIME.

To Work or Not to Work

March was the worst month of my entireworking career. We were in the office four workdays of that month.The third Friday was one of these in-house days, and on that day mydirector called me in to give me a written reprimand for not beingable to maintain my open enrollment deadlines. I was not entirelysurprised since I knew I was slipping, but I had never ever receivedany type of reprimand in my working life.

Monday, April 1, 2000, was my first dayin the office after the road show ended the prior Friday. The firstthing I did was to present my boss with my 60-days notice. I justcouldn't keep up the pace required of me. I was heartbroken. This wasthe best job I had ever had, and the most promising for me to saveand prepare for retirement in about 15 years. And now I had 60 daysto find a new job, hopefully within the company. I will say that Iworked my a___ off to get open enrollment out the door ontime!

I had to continue to have an income, soI decided to try to find a supervisory job within the company. Thismeant only 45 requisite hours per week and a smaller workload.Luckily I was able to find this position in the main office of thecompanies Bakery Plant. I began work there, but was falling asleep atmy desk. I was so tired all the time. Never found enough rest. Afteronly three months in this job I had to give notice again. During thelast few weeks there I would actually go home at 10am to take atwo-hour nap and then return to work. I stopped working the lastFriday in October 2001.

Filing for DisabilityBenefits

I filed a Long Term Disability (LTD)claim against my management job, since PD was the reason I quit thatjob to go to the Bakery Plant. I was very fortunate to have my claimapproved and only went a very short period of time before income fromthe LTD insurance began.

To date, my family still does not careto receive information about Parkinson's disease. My mother is theonly person who ever asks how my "health" is. When she says "health"she means my PD. I keep trying to tell her that my health is fine.It's my PD that isn't so good.

Reassessing Priorities

I did move closer to my youngerdaughter in June 2003, and she is getting a taste of PD, somethingshe has never seen before. I don't think she is quite sure how to actor what to do sometimes, but she is learning. And I am curious as tohow my sisters, who are both now in Tampa, will receive me when theysee me next. My PD symptoms are more pronounced now and I have morevisible "off" time.

In June 2003 I added Diabetes to thelist of my diseases, and I am now an insulin dependent Diabetic; twoinjections a day. As to life, well it goes on day by day. It could beworse, and gladly it isn't. I don't walk very well, and my tremor ishorrible sometimes, but I still drive and continue to be able to carefor myself living alone. I have noted that as long as I can stay awayfrom stress and highly emotional situations, my tremor is manageable,meaning I don't drop items too often. There are many daily issuesthat can cause stress, and as long as you can learn to control yourstress, rather than allow it to control you, you will do justfine.

While reading this you may have begunto wonder why you haven't read about anger and denial. I don'tremember ever going through a period of denial, other than the many,many mornings I would awaken thinking that today would be the day Iwould find out I don't have PD, but those days have past. And therewere the days in the first year or so when I would leave a medicalappointment and cry all the way back to work. Life has not dealt me avery fair hand of cards, so finding I had PD wasn't anymore difficultto deal with than any other difficult issue I have had to deal within the past 30 years.

The Truth Sinks In

I believe the worst point was in 2002.I attended the 2002 Parkinson Action Network Public Policy Forum, akaPAN Forum, in April. Other than Paula and Peg, I had not met anyother Parkies in person. The first day of the Forum was busy andfilled with people in all stages of PD. It was almost overwhelming tosee. There was the meeting all day and a social that night. I metmany of the people in person that I had already met online. It waslate in the evening that I went up to my room alone. Thatoverwhelming feeling took a strong hold on me. It suddenly hit methat I was witnessing my future. My symptoms were not too bad at thatpoint in time, so I had not given the potential devastation of PDmuch thought. I sat down on the bed and sobbed for what seemed likehours saying over and over again, "I don't want to do this!" Do thisPD thing! Paula, my roommate and travel companion, came into the roomand found me there sobbing. The pile of used tissue wasenormous.

Not working has isolated me from theworld far more than I like. This is the one part of quitting work andliving alone with PD that I don't like, never will. I don't even liketo venture into the thoughts of what my life would be like without mycomputer. I don't spend as much time on it as I once did, I guess Ihave evolved. In 2001 and 2002 I was in the Dumpster chat roomconstantly, several times a day. Both the Dumpster Gang and the MGHForum "saved" me from myself and I am forever grateful to everyonewho knew me back then…seems so longago.

My friend Peg has a quote at the bottom of her emails…her email signature…"Yesterday is history. Tomorrow a mystery. Today is a gift. That's why it's called the present!" It is so true that tomorrow is a mystery, so i have had to ask myself what will I do with the present. Well, I have begun to volunteer at the local area elementary school. My first job at the school was the annual picture day. I have also joined the YMCA and have started by riding the stationary bicycle 30-45 minutes. I plan to take up oil painting in January when classes begin again.

 A Little Bio About Me

I was born and raised in Central Florida, USA, along side of one younger and one older sisters. I married in December 1968 and immediately moved to Texas. It was the end of the military draft years and my husband had joined the Air Force. In 1969 we moved to Turkey...yes, the country...where my oldest child, Leslie was born in 1970, and my middle child, Karrie, was also born there in 1971. My daughters are only 12 months apart, both born in July. We then moved to northern Japan in 1972, where my son, Paul, was born in 1974. In late 1974 we moved back to Texas and in 1978 left the Air Force for civilian life and returned to Florida. I now live in NY State, close to my middle child, Karrie, and my granddaughter, Kaylin, 14 years of age.

Carolyn and Judith
at the Edge of the Forest

Karrie is a supervisor with a pharmacychain. My son remains in Florida, working in the auto parts business,and we are urging him to move north where "everyone else lives". Thatis to say that my oldest and her family also live in the northernUSA. Leslie, the oldest of my three, lives in southern Pennsylvania,outside of Gettysburg with her family. Leslie is the Resource CenterManager for the area community college, and her husband, Kevin, is aprofessor at Penn State at Mount Alto. They have Amy, 5-1/2 yrs,Simon also 3 yrs (in Dec 2003), and Oliver "Ollie" 20 months. As ifshe is not busy enoungh, Leslie is taking Masters Degreeclasses.

 
Granddaughter Kaylin,14