Results from Form 1 of Peggys journal.htm

Date:: 04/17/00

Notes

Welcome Peggy! Thanks for sharing!



Date:: 04/17/00

Notes

Going great so far! What do I do next? GOSH! You guys (gals) are fast!

Date:: 04/17/00

Notes

Welcome Peggy...thanks for sharing.

Date:: 04/18/00

Notes

Some folks actually love their jobs. Mine was the case. A teacher for 15 years, my last 7 as an elementary principal; I loved my job. Then a thief that crept up just as secretly as getting older does, snatched it away. I now know that 75-80% of one's neurons are depleted - gone - dead - before the diagnostic symptoms of Parkinson's even appear. This journal entry will allow you to peer through my window of life to see how the thief, now known as PD, changed all my goals, my aspirations, and my dreams and recrafted me. Follow me - don't just look through my window - walk with me from an active professional and community leader, happily married mother of three grown children to an unemployed, disabled citizen. But trust me; I am a much better person and most thankful that the "thief" chose me.

Date:: 04/18/00

Notes

Go with me back to October, 1998, where I'll pick up my situation and thoughts at that time: As I regained strength after the hospitalization, the little chores didn’t seem like too much to tackle. There were the wilted floral arrangements that were scattering bits of dried leaves and petals about the house and playing havoc with my allergies. Then I needed to sort the boxes of dishes where caring friends had brought in food for mealtime while recuperating. But as I wrapped a rubber band around all the cards that concerned folks had sent, my mind revisited a nearly synonymous event five years earlier.

The aftermath of my father’s funeral was recaptured in a momentary flashback. I must have stared at those wilted flowers, now lying in disarray in the trash, for nearly ten minutes. I recalled how the death of my dad was the mark of change in our family’s lives, and I knew that the likeness of this experience was too similar to be coincidental. The old lifestyle that I once lived had passed on . . . now new changes were to be acquired.

Peggy

Date:: 04/19/00

Notes

And just how does one go about acquiring a new lifestyle?Learning something new shouldn’t be too difficult for this former elementary principal with a master’s degree plus postgraduate work. Somehow, however, the thought of this radical a change was going to be so much more challenging. For some reason my new lifestyle was going to be even more difficult to accept than the first “official” diagnosis by the neurologist.

“You have Parkinson’s Disease,” was the final assessment by my doctor some four years ago. What led to this doctor visit was that I began to notice, or I should say my daughter noticed, that my left arm didn’t swing as freely as the right when walking. After her observation, I became keenly aware that my left hand appeared to be in “slow motion” whenever I reached for a doorknob or waved at someone. Then I saw the tremor of my fingers. It was ever so slight at first – somewhat like a flutter of my ring finger and pinky. As time went on, the symptoms increased enough for others to notice; announcing that it was time to see my doctor.

The neurologist prescribed Parkinson’s medication and immediate results were seen. After an initial bout with nausea from the medicines (and having had three babies, I knew about nausea!), the tremor stopped and improved use of my left hand resulted. My follow-up visits eventually broadened from monthly to six-month intervals. Having Parkinson’s Disease wasn’t so bad after all! I believed that we had this thing licked . . . for now. Peggy

Date:: 04/19/00

Notes

As time went on, the symptoms of the disease progressed. For starters, it was a little more ENTRY 4 difficult to pull my body frame from bed each morning. I became exhausted quite easily, and my tremor worsened. Visits to the neurologist resulted in a “change” of medication, which would often require a two to three week adjustment period that would nearly knock me flat.

Analogous to the fact that an increase in weight leads to an increased need for dieting, the increase in symptoms led to an increased need for medication. Visits to the neurologist became more frequent; added to this were more frequent visits to my internist and an orthopedic specialist. The increased medications caused what is known as dystonia – a writhing and pulling of muscles, especially in my left leg. It came to the point that the leg had to be braced constantly to prevent further tendon damage. My “handicapping condition” could no longer be hidden.

New symptoms cropped up: bradykinesia (slowness of movement), micrographia (uncontrollable small handwriting), extreme overall stiffness, and cognitive difficulties. It was the cognitive problems, not knowing what my next word might be mid-sentence, that began to shake me into reality. Teachers under my supervision would tell me something, and I would forget it. When I improvised and requested them to write down any requests, I would lose the note. My world seemed to come crashing in on me. Then the inevitable occurred. Peggy

Date:: 04/19/00

Notes

Depression is a taboo word in the workforce – in society for that matter. Depression’s etiology is often undefined, as it was in my case. Was the depression due to the trauma of knowing the disease was progressing, or was it due to the chemical imbalance in my brain? The answer was probably both. Whatever the cause, a solution had to be found – and quickly.

I would find myself crying at the drop of a hat. Renowned for my excellent rapport with parents and staff, I could now be likened to Jekyll and Hyde. One minute I was confident and composed; the next I was a basket case. Reality check came when an irate parent came to the office to complain about the lunchroom monitor. The “Lunchroom Lady” had a thankless job to start, but handled it quite well. Only on occasion would she have to resort to raising her voice or isolating students. Today’s complaint, however, was due to her futile attempt to bring some peace to the lunchroom warfare by assigning seats to an entire third grade class.

To make a long story short, this irate parent paid me a visit, but the meeting got out of hand. I thought that bringing the parent and lunchroom monitor together would provide a rapid solution to the problem, but it transformed quickly into a finger-shaking shouting match! I felt trapped and helpless. Then it happened. I burst into tears, waved my hand in surrender style and managed between sobs to say, “Don’t mind me; go ahead and fight it out here and now. I’ll just be over here having a nervous breakdown!”

I regained my composure enough to notice that both were staring at me with gaping mouths. Immediately, the father’s attitude did an about face. He began repeatedly apologizing to the lunchroom monitor for his irate behavior, justifying his explosion due to lack of sleep. They both verbally worked the situation out, and the dad started to leave. Just prior to exiting my office, he turned to me (cowering in the corner bawling my eyes out!) and said, “I hope you get to feeling better, Mrs. Willocks. I never meant to upset you.” With that he was gone. Embarrassed, sniffing, and still heaving from heavy sobs, I looked at the accused monitor and said, “We’ll have to try that more often.” We both chuckled – her’s was genuine.

Peggy

Date:: 04/22/00

Notes

I met Emily and Lil in the chatroom last night. Thank you for reading these journal entries. I went back to my on-going story and added this entry in hopes to help others get from point A (working) to point B (retired on disability). Thanks for the chat, ladies (you, too, Mr. Augie - he had to go when I signed in): It was at that moment that I realized I was in over my head. Never had I been “out of control” emotionally as I was at that point. A few days later, my whole reason for living went haywire. I went into what the neurologist termed a “Parkinsonian Crisis.” Five days in the hospital allowed my family and me to do a lot of soul searching. With great sadness, I admitted that returning to work was not an option. Admitting not going back to work was one thing . . .accepting was quite another.

I recall the day my daughter took me to the ER. My blood pressure was stroke level. I didn’t have enough energy to walk from the bed to the bathroom. I couldn’t even comb my hair – my arms felt limp and lifeless. My balance was poor and I staggered like a drunk. As we approached the hospital, I kept saying between outbursts of sobs, “I believe I’ll be all right now,” trying to convince myself more than anyone else. I had a cast on my left leg from the knee down, a result of dyskinesias from all the meds I had been taking. The orthopedic doctor was attempting to heal a nasty case of tendonitis by immobilizing the ankle joint. Picture this once meticulous lady who asks for her mascara when she first awakens each morning. I was actually in public (and didn’t care) without a trace of make-up. I had the pulled on with my daughter’s help, the easiest to put on mismatched clothes I could find. My eyes swollen from constant crying, and this stupid leg cast I made my way arm-in-arm with Amy to the ER. It’s no wonder the nurse at the triage desk took one look and said, “Oh – let’s get her back in a room!”

My neurologist was already in the hospital and answered his page immediately. My body began to jerk all over uncontrollably, as if an electric surge was being sent through me. In a matter of moments, my doctor was at my side, holding my hand. And what was I doing? I was addressing my daughter, “Don’t tell your daddy (who was on a golf trip)! Call my secretary and tell her the key to the back room is in my purse! Check with Tommy’s mother about his testing , and. . .” My doctor squeezed my hand and almost shouted, “Your platter is full!” Although it took a little more than my calm, never-volatile doctor raising his voice, I knew it was time to relinquish my “control.”

Peggy

Date:: 04/24/00

Notes

Hmmm . . . didn't intend to be posting anything today, but the events of yesterday sure did bring 2 years ago swiftly flooding my memory banks. Yesterday was Easter, and East TN was sunny without a cloud in the sky. The cloud, however was hanging over my head, and today I am beginning to be able to see through it, but just slightly. Easter - whether or not you believe in the Resurrection of the Messiah, it means a rebirth or time of new life for the Earth. But there I was - feeling as if I was the topsoil that got turned under. I awakened Sunday morning to a rigid body and bradykinesia so terrible that it took me five attempts to get my pantyhose on (and only then with mu hubby's help). What was up? I was weepy for several days prior, but on Easter morning, you'd think I was one of the women who came to visit the empty tomb! (No disrespect intended.) I went on to church - I guess everyone thought I was really emotional hearing about the death, burial, and resurrection of Jesus. That should be happy thinking, but I puttered straight home, managed to get my dress and shoes off and literally fell into bed. I closed the blinds to block out whatever happiness was trying to creep in the room and turned on a fan to block out the noise of reality. I hate these days. What I hate so much is that they come so unexpectedly - there's absolutely no warning. As I lay there in a fetal position and tears for no reason streaming down my cheeks (and into one of my ears!), I was taken back to my first hospitalization since diagnosed with Parkinson's. I hardly knew who I was, much less where I was for the first three days. I would awaken from sleep and look around my hospital room as though it were my first time seeing it. One of the family members sitting there would orient me back into reality. Reality? What was reality anyway? It was on the final day of my hospital stay that I suddenly looked - really looked around the room. I had the blinds pulled, my door shut, and no TV or music going. The neurologist made his rounds late that evening and talked with me about discharge and a follow-up appointment. It was time to ask the big question, "When do you think I can go back to work?" Trust me, my neuro doc must have made straight A's in psychology, because he never flinched, scribbled something on my hospital chart, and looked me straight in the eye with a half-crooked smile and replied, "When do YOU think you can go back?" OK - I said. I can play this game, "Let me try it in about two weeks." Again, his body language gave me no signals, but in retrospect, I can imagine him chuckling to himself that day as he simply said, "O.K. We'll process you for discharge!" Two weeks? Even now I can't for the life of me figure out where that came from. (Cont. - Peggy)

Date:: 04/26/00

Notes

Kind of a sidetrack today. We had our PD Support Group meeting tonight. A neurologist discussed new medication (Comtan - which is not so new now), then we had a question/answer session about drug interactions and side effects. Guess what? I and some others were much more updated than the physician! I thank God every day for the internet - it's a library at your fingertips! I heard someone say once that the best education one could ever realize would be to spend the 4 years we put into college in the library. So true! While I'm in a thankful mood, I thank the good Lord for all of you - those "cyberpeople" I may never meet face-to-face, but with whom I have a tighter bond than my own flesh and blood. I ask, how can that be? I haven't quite figured the answer to that one out, but I'd defend that statement in any court! Thanks for always being there. Peggy

Date:: 04/28/00

Notes

Much too late to be up! I'll take an Ambien and rest 3-4 hours - good medication. It's in and out of your system fast without that "hangover" feeling. Two problems, however: 1) habit-forming, and 2) you build up an intolerance pretty fast (doesn't work as well). Today, I need to sleep - even if it is achieved synthetically. I visited a friend who is in the middle of chemotherapy for terminal brain cancer. She had fallen while trying to build some indepedence (even with her 4-prong cane). She's on Coumadin and could have done some serious damage if she had cut herself. Instead, she had a horrible black hematoma on her lower jaw. And you know what her husband said? He said, "There's good in everything - now we know her limitations." Now, why can't my husband be that positive? I don't mean to sell him short - PD is such a sly disease. When you have "good" days (or hours), others tend to forget you are still "sick." In fact, they forget you are ill. I almost wish it would be either good all the time, or bad all the time! No - not really - I am so thankful for the good times. I detest the bad - making the bad even worse. Maybe a good night's sleep (do I remember what that is?) will have me waking to an adjusted attitude. Let's hope so . . . good night, cyber-friends! Peggy

Date:: 04/29/00

Notes

Travel back in time again to Nov., 1998: “Control” is something I have always had to achieve. Put me in a room of people, and 30 minutes later I’m trying to organize the chairs, lead the topic, and pull everyone into the conversation. It’s my birthday’s fault – I’m a Scorpio – November 15- “Born leader.” Now, who was in charge? At the end of my initial hospitalization, I’m not only telling my neurologist that I’m going back to work in two weeks, I’m telling my body! “My” body? Not anymore. It is telling ME what to do – it is telling ME when to move and when to not. I don’t like it – not a bit – I’m relinquishing my control to this lurking evil – Parkinson’s. Speaking of birthdays, a few weeks after I was discharged from the hospital, my birthday came up. The entire school got together (parents included) and sent presents and cards. I remember some PTA mothers calling on the phone asking if they could drop by. November 15 wasn’t until a few days later, so I was taken by surprise. There must have been 1,000 cards (from a student body of 400 or so)! Some cards were bought at the local Wal-Mart; others meticulously created by sincere little hands. One card brought it all to a climax. It was from a first grader – Aaron. He had folded a piece of manila paper (Some kids called it “vanilla” paper) and had drawn a big red cross on the front. Inside he had taken a purple crayon and wrote, “i askt God to make you betr – i no he will.” I lost what composure I thought I had – the PTA ladies didn’t stay long after that, and I just couldn’t read any more cards until much, much later. Let’s just ask Him – God – why me? . . . why now? I was only 48 years old and at the height of my career. It was just in October, 1997, that I was named Tennessee Principal of the Year. Yeah, I showed this Parkinson’s thing that I could be better than ever at my job even after diagnosed! Yeah, right! As I was left alone with my hundreds of cards, cake, and small presents scattered all about the living room floor, that was the saddest birthday I ever remember. I believe it was even worse than the one when my parents moved to Miami to get established in a new job, and I stayed with my grandmother in Tennessee. For the moment, it was just me – memories, regret – and anger. Can I, will I ever be able to cope with this radical change? Do I have a choice? (Cont.)

Date:: 05/02/00

Notes

Filing for Disability:

Choices? Indeed we all have choices – it’s our options that seem to dissatisfy us. In the days that followed, I had to learn many new roles. For example, this 120 words-a-minute typing award winner had to relearn how to type with one hand. Buttons, zippers, and hair-drying challenges replaced busy schedules and faculty agendas. And acceptance of it all wasn’t easy. Then slowly, step-by-step I changed roles from a face-paced principal and active wife and mother of three to a disabled citizen. Then something wonderful happened. My strength to continue in this new role came from my hope someday for a cure, “people” support, and my faith in God. Friends from the past surfaced, people in need shared ways to help with me, and my husband bought me a computer! I began to write my feelings – through journaling, short stories, devotionals, and poetry. Some I shared – some I never will (Emily Dickenson and I may have something in common!) And research . . . I read, copied, searched and bought everything in print imaginable on Parkinson’s! I know the doctors hated to see me coming because I had a list of questions and handed them 2-3 articles at each visit. I waited three months before even beginning to apply for disability. Although “vested” after 5 years working for the State (Tenn.), I decided to wait on filing with them until Social Security was approved. I heard more than once, “Get a good lawyer; Social Security always turns you down!” So, I called around. Each one told me to call back after I was disapproved. Then the mountains of papers came flowing in! It was like an abyss! I thought they would never quit coming! “Have your physician fill out this one; take this to your employer; give these to people you have worked with or who can vouch for your work abilities.” It sickened me and took my entire family’s help, but we went through the ritual. Some people hire a lawyer just for this part! I had my aunt drive me to the local SS office just so they could “see” my disabilities. I hesitated at first to apply, then thought “Who am I kidding? I worked my rear-end off for years – why let someone else reap the benefits?” There is a five-month waiting period to see if your symptoms improve. My disability for social security went straight through – no appeal would be needed. I have a 3-year renewal clause. My pension was based on my top five annual salaries earned. It was then that I filled out the State papers, and received approval within 4 weeks! More tips will follow my next post. (Cont. – Peggy)

Date:: 05/11/00

Notes

Hello! After a lengthy hiatus, I'm back online. It seems that a technological something-or-other took out my modem, disabled my mouse, and shut down my computer for 3 days. I said 3 days! It seemed like an eternity to not have access to one of my lifelines. Ahhhhh . . . technology! It allows me to "connect" with others when those surrounding me are disconnected. Didn't realize how much that filled a void in my life until it was removed. The last time I journaled, I promised to reveal some tips in filing for Social Security disability. I had been warned that "they" always disapproved, resulting in having to secure a lawyer and filing an appeal. Not so in my case - so I must have done something right. Where to begin??? Let's begin at the beginning! I DID NOT want to quit work - so the "tone" of all my meetings with SS personnel (face-to-face and via telephone) was that I didn't want to resort to disability. But I had come to grips with the fact that I simply could not function as a good solid employee. Remember, that you must be unable to work at ANY gainful employment in order to secure SS benefits. It is not a "job specific" disability. First, you must not be working at the time you file. I used up my sick leave and went to my school system's sick leave bank in order to complete the school year. My neurologist wrote a letter TO WHOM IT MAY CONCERN that I used in numerous instances. Basically, the letter stated that I suffered from Parkinson's, which was labile and difficult to control. He stated that due to the progression of the disease, it was his opinion that I would be unable to work in an area for which I had been trained on an "indefinite basis." This is step one - getting a good letter from your physician. Contacting SS locally was useless - our local SS office was next to impossible to contact. They receive hundreds of calls daily, so I used the welsite http://www.ssa.gov/reach.htm or the toll-free telephone: 1-800-325-0778, a very efficient and timely system. At the website, one can "read up" on the legal jargon of "disability" defined and gain a wealth of information on protocol. Releases forms must be signed authorizing those-who-need-to-know access to your medical files. That part I was not keenly fond of, but so goes the ways of the world! Lots of forms (which for a while was an abyss of forms!) will start coming to you. I suggest that you or someone who knows your situation well, complete these forms, keep copies, and return to SS immediately. This definitely speeds up the process. Your birth certificate and a pay stub from your last check must be taken when you make your initial SS office visit.Let me warn you now that when you are under 55, a lot more "proof" of your disability is required! As I think back on it now, I got more and more depressed with each form I completed. It was the "end" - the final chapter in not only my career, but in succumbing to the disease that had held my body, my emotions, my very soul at bay for four years. I thought I could beat this thing, but it was not to be - and I was NOT accepting it well! (Cont.) Peggy

Date:: 05/13/00

Notes

Like Mischief, I should "listen" to my body - it's 10:45 PM, and I sit here typing in s-l-o-w motion. My body is screaming "GO TO BED!," but my mind is racing too much. My right hand (the "good" side) is slow, but not as pronounced as the left. It keeps getting impatient with the left hand and jumps over and helps it finish spelling out words! Kinda gets to me the way it takes over without me giving it much thought.

Yesterday was a day and a half! There's a threesome of young-onset PD'ers who check on each other 2-3 times a week. We're "three P's in a pod," Pat E., Pat M., and moi - Peggy. We met at a PD support meeting and have been "accountable" to each other since then. Pat M. is 57, the oldest, but has only been diagnosed for 3 1/2 years; yet, she is the most advanced. Her hubby had to go out of town and asked Pat E. and I to stay with her.

We did fine, until about 4:30 in the afternoon when the meds ran out on all of us! What a mess! I had just pushed Pat M. in the wheelchair to the bathroom, where the other Pat and I helped her transfer to the walker. Then she wanted to lie down in bed. Here comes the funny? part! We got her in bed and then began swinging her legs around. She was so stiff! She looked up at me and in her frail voice said, "I'm down too far." Her heels were hanging off the bed and we had moved her pillow to have contact with her head, leaving a clearance of about 2 feet above her pillow to the top of the mattress. I looked at her and replied, "I know you're down too far, but I don't quite know what to do!"

Wait! There's more! Pat E., tremoring to beat the band (or scrambled eggs!), climbed onto the mattress on one side and pushed her hand under Pat M's armpit, and I strategically found a like position for my hand on the opposite side. "Okay, I said - on three! One - two - heave!" We did it! As we sat there jubilantly admiring our accomplishment, we all looked at each other and burst into laughter! What a pitiful crew!

This threesome friendship has meant so much. We can share stuff we could never tell others - not even family. We were interviewed by an area newspaper last week. The feature editor thought we had a good story. It's to be published May 21. I don't know if "good" is the right word! Our relationship is certainly unique - each bringing our own strengths to the table - and each our own weaknesses. I'm pushing for writing a book about us - and already have the first two chapters written. Guess what the title is? Yep, "Three P's in a Pod;" compliments of Pat M., the eldest.

I've digressed from my disability story - but thought you would find this post interesting. Yeah - yeah - I hear you, body! I'm going to bed as soon as visit the MGH forum! Promise! G-nite! (cont) Peggy

Date:: 05/15/00

Notes

How's my day? Started out relatively well - chatted at PLWP chat room this morning - Bren, Hazel (a former psychiatric nurse), Tina (from Belgium!), and Stephan and Nancy. 'Twas a good sharing time. But later in the morning (and right now!), meds not working so well. Wondering if I have a bladder infection or URI (sorry - used to be a medical secretary - URI is Upper Respiratory Infection or a good ole cold). When PDers have an infection, seems the meds just quit working as well. Hold on - my typing seems to not be wrapping just right - I'm in Netscape, so will go out and come back under Explorer. Continued . . .

Date:: 05/15/00

Notes

Hello again! Hmmm - Netscape showed nothing after last entry, but it was there with Explorer. At least typed words are returning OK. Anyhow, days like today are why I'm on disability - couldn't possibly work in this condition. Can't tell you how s-l-o-w I'm moving, severe back and neck pain, biting into my lower lip, and an effort to push computer keys. Thank God we don't have manual typewriters to bang on and pushs the carriage to return! We truly have come a long way.

I want to continue with the filing for disability saga as some of you may be at that point (or are considering it). I was looking at my discharge summary from my first hospitalization - remember I told you that the neuro doc asked how long I thought I needed off from work on discharge? (See post of 4/24). I thought I said two weeks, but the summary said one week! I recall now that it was fall break time (Oct. 1998), and I thought all would be well in 2 weeks - HA! I never returned to work. I asked the doctor why he didn't tell me I needed to stop working earlier - he said that's something we have to individually settle in our minds. Know what? He was so on the mark! I fought PD symptoms far longer than the norm - only a few years in time, but the stress of working (especially when you're the number one "troubleshooter") made the severity of my symptoms so intense.

I digress - back to filing for disability. Be sure to get copies of your medical records - office visits, hospital discharge records, medication records, dates of visits and diagnosis of each, and on and on. In other words, be sure you're reading the same stuff that your disability examiner is - you want to be on the same page. I have this humongous file of forms I completed and medical records. Be as knowledgeable as your physician - they fill out forms from your records.

My doctors wwere kind enough to complete my disability insurance forms right there during my office visits. It was just a checklist sort of form. I didn't have to worry about it getting lost in the mountains of papers he has to complete daily. I'm lookin at my old insurance form now . . . There's a place that asks "When will patient be able to return to work?" or "Extent of Disability". Do you think it says "one week" or "two weeks?" Not! He marked "Never" for "Any Occupation" and "Never" for "Patient's Regular Occupation." Never . . . never . . . never. It's all flooding back through my river of memories now - that "Never" is so finite. It leaves no room for a cure - which I believe WILL be in my lifetime! But it's was what the insurance folks wanted to hear.

Those aggravating disability insurance forms had to be completed every month! Finally, after three months, they just sent me a batch of them for me to say each month that I was still disabled - didn't even have to take them back to the doctor. Guess that "Never" finally soaked into their heads!

Well, well! My meds are "kicking in" now! Only 2 hours since I took a pill - and time for my Requip (an agonist). I take Sinemet one time, and two hours later Requip. An "agonist" defined in simplistic terms, is a chemical that "perks up" your receptors or "little fingers" on those neurotransmitters (or that's how somebody explained it to me). Just wish my life didn't revolve around that medicine bottle! I can see me working now - right in the middle of a parent conference, "Excuse me; it's time for my neurotransmitter stimulator!" Can you imagine what looks I would get!!!

I think I'll close out for now - take my Requip, and enjoy about an hour of "normalcy" - and if you believe living with PD is normalcy, I have some oceanfront property in Arizonia to sell you! Good night friends.

Peggy (cont)

Date:: 05/18/00

Notes

In a word . . . "beautiful.' That's how I would descrive Diane Sawyer's interview with Michael J. Fox on 20/20 tonight. If you missed it, you can read the transcript at www.abcnews.com.

Letting go - of a job that has been your life - does not mean giving up. But it feels that way at first. I watched as Michael struggled with the dyskinesias from the meds - at one point having to excuse himself to take another dose. To the "inexperienced" eye, Michael appeared fidigity and hyperactive. However, someone who has been there could easily spot his strategies to "conceal" his hands, legs, and his facial expressions.

But michael spoke from the heart tonight - just as we do here. It is a good thing to get it out - kept inside it eats at you like cancer. Outside of the body we no longer control, we can begin to deal with the issues - just by stating them.

Michael J. Fox reiterated that one thing no one can take from us - hope. And I thank him for reminding me. Peggy

Date:: 05/20/00

Notes

Here I sit - 12:04 AM. Insomnia is so difficult to understand! My body is rigid, heaad shaking, and the rest of my body - especially my hands - in slow motion. I popped a sleeping pill - gave up on that counting sheep thing. So until it takes effect, I'll enter a few words today.

Met lavenderlou in PLWP chat room a while back. I often saw her posting at MGH forum, so I felt as if I already knew her. Anyway, one day I noticed a post of hers saying something about a move to Tennessee. Surely - I thought - she wouldn't be in my neck of the woods. But this world IS a small place - she's possibly moving about 20 minutes from me! Will eat lunch with lav and husband tomorrow. They have a rough drive from Nashville, where they flew in to this morning. Bad storms and torrential rains today.

Can't believe I'm actually eating lunch with a couple I met over the internet! Not real smart sometimes, but there's something about PLWP. We share a bond unique to all other disorders. It must be our insatiable desire to find something that helps - something that cures. It's that hope we cling to like a security blanket that keeps us going.

Talked to laverderlou and hubby over the phone tonight. We'll go househunting tomorrow. Hope my meds perform - better yet, hope I can sleep! Good night (I hope). Peggy

Date:: 05/21/00

Notes

A SPECIAL MEETING

May 20,2000

3:00 PM, and no call. Well, it was a little early to begin worrying. They were to catch a flight that morning and drive on from Nashville. I told them that it was a 5-hour drive from Nashville; the lady booking their flight had told them it took 4 hours.

5:00 PM, and no call. Maybe I had misunderstood about the schedule. Maybe they had decided not to move to Tennessee after all. I mean, Lavenderlou had told me she would be leaving family in Missouri if they took this new position for her husband.

7:00 PM, and no call. OK; I was calling the hotel where she said they would be staying. Maybe she had lost my number. There; I left my name and number. At least they (Lavender & hubby) were on the hotel reservation list. I felt better now.

9:00 PM, and still no call. Who was I kidding anyway? Did I really think a couple I had never met would actually want to meet me? How silly of me! I had read Lavenderlou’s many posts at the MGH forum. We had even voice-chatted at the PLWP site. I felt like I knew her already. But who was I kidding?

I learned that Lavender (her forum name) was thinking about a move near my hometown. She would only be 20 minutes away. We couldn’t pass up this opportunity to meet, and I could even show them around town. But no call was beginning to look like I had imagined that we had a desire to meet. Heck; we were total strangers! I knew what she looked like because her picture was on the chat family site. I hadn’t figured out my scanner yet, so she had no idea what I looked like.

I decided by 10:00 PM that I had anxiously waited for this opportunity for nothing. They had either changed their minds about coming or just decided it wasn’t wise to call.

Then I began to imagine stuff. Maybe they had a wreck? The plane might have even crashed! There were severe thunderstorms out west. I began to feel like a doting mother hen! Just when I had nearly convinced myself that I needed to put out an APB, the phone rang.

“Hi, Peggy. We finally made it!” It was the familiar voice of my cyberfriend, Lavenderlou. All former fears melted away, and we talked for nearly 20 minutes. First, she and her husband got bumped from their first flight. They hadn’t even left until late that afternoon. Then the drive from Nashville was analogous to the drive through the movie, “Twister.” Since it was going on 11:00 PM, we made plans to meet at lunch the next day. Lavender’s husband got on the phone for directions. That was my first time to ever speak with him. He sounded like a very nice guy. We made arrangements to meet at Olive Garden at noon. “I’ll be driving a white Mercury Mountaineer. I have blonde hair.” That was the extent of my description.

As I pulled into the parking lot of the selected eatery, I found all new meaning in the phrase, “baited breath.” I was so anxious to meet this person, but felt as if I already knew her. I started to think about how my newfound internet friend would welcome me. Would we shake hands? Would she feel awkward talking to a stranger? In a few seconds, I would know. I spotted their rental car.

I pulled into the handicapped spot and began to go through my ritual. I carried a flat-type pocketbook with a long strap in order to wrap it around my neck and left shoulder. This left my right hand free to maneuver my walking cane, which steadied my balance. The entire process of “dismounting” my SUV’s raised seat took 2-3 minutes. I was pretty good at it when my meds were “on.”

It was as I swung my legs around and planted them on the pavement and began to pull my frame to a walking position that it hit me. I could have described myself as the “person with the leg brace and the cane,” instead of, “I’m a blonde.” I had forgotten that I was handicapped.

As I shut the car door and made my way to the restaurant entrance, I heard my name called, “Peggy!” I looked up to be greeted by a beautiful, young lady in her late 30’s. Laverderlou’s sweet smile was more than I could have imagined. Her handsome husband was right behind her.

As I fell into open arms in the parking lot of Olive Garden, we both became oblivious of all of the possibilities of meeting “strangers” over the internet. Suddenly, we were “old” friends, and our conversation during the remainder of our visit didn’t skip a beat. There were no periods of awkwardness or “What do I say now?” periods. We bonded.

The beauty of it all was that we were “people.” We were “People Living With Parkinson’s.” When you think about all of the “support” organizations for illnesses, they usually begin with or have as their central focus the name of the disorder: National Parkinson’s Foundation, American Parkinson’s Disease Association, United Parkinson’s Disease Association, and so on. But that was not the case with our newfound organization.

With PLWP, the first word is “people.” We can surely always remember our limitations because of this disabling malady, but must never forget that first and foremost, we are “people.” And there in that parking lot; when age, etiquette, time, and all the “rules” of safety transcended into true friendship; Lavenderlou and I became identified as “people” first, and victims of Parkinson’s next. Peggy

Date:: 05/23/00

Notes

Soooo tired tonight, but just wanted all of you to know that I am an addict. I check out this site as often as I do my own e-mail. It's a place for "people" first (as I said in journal entry last time; and it's for Parkinson's "people" next.

Don't ever give up - hope is the one thing to which we must cling~ Just when I was about to give up one day, the strangest thing happened.I had been out running around and parked in the driveway. Then I literally "fell" out of the car and lumbered my way into the kitchen via the back door. My legs felt like jello and the remaainder of my body was kinda "doing its own thing."

I sat down (excuse me I flopped down) in my favorite chair that reclines. I was so give out and in slow motion that I couldn't even make it recline! So I just sat there - letting life breathe back into my body.

I dozed off enough to regain a micro-chip of energy, which I used to retrieve my cordless phone from the bedroom. The bed was too inviting! I spilled myself crossways onto the bed and finally managed to get on my back. Then I punched in all the necessary codes to listen to my phone messages. That's when it happened.

There was a message from a research nurse at a PD center of excellence asking me if I would be interested in participating in an experimental study. Oh yeah - probably a brain transplant or something. I saved the message.

I had nearly fotten about the saved message until the next day. I guess I could at least return the call. An R.N. answered and told me a movement specialist I had seen had referred my name to her. She gave a brief overview of the stereotactic procedure (the halo and drill show) and said she would be mailing info to me.

Life with PD went on (as it does), and my neuro started me on Comtan to help make my other meds more effective. It immediately started working. I had more "on" time and was flying high. As has been the case with me, however, after 6 months to 1 year with my meds, the efficacy wears down. And then the info on the research project arrived in the mail.

After reading the 10-page document, I sat down in the same recliner I had fallen into days ago and cried. Really cried! This sounded too good to be true! No cost - little risk - no ethical issues -a 90% success rate thus far, and the promise of no PD (if it worked)! It claims, in fact, to reverse some of the damage done by PD.

The catch? The surgery had never been done on humans - only primates (NOW I knew why they contacted me! My genetic code and primates must be very similar! LOL)

I've checked it out and can find no loopholes thus far. And yes, I'm willing to pay the sacrificial price if it means a possible cure for someone else. I will hopefully receive a call for a screening appointment in late summer. And the screening is very extensive - my prayer is that I will pass screening as I have other health issues. If I pass, I could POSSIBLY be the second human to have this procedure done.

I may sound clandestine about all this, because I don't know how much I should be telling. And I definitely do not want to do anything to deter my number getting called! So bear with me - I will share it ALL when I know what I can share.

Lift your glasses now (clink!) "TO THE CURE!" Peggy

Date:: 05/25/00

Notes

My grandmother would have been 99 today. She passed away a few months after her 98th birthday last year. I taped a conversation with her shortly before she joined the choir of angels. She kept reiterating how "things have changed" during her lifetime of almost a century.

I watched the final "Spin City" show with Michael J.Fox. I didn't shed a single tear during his interview the other night on "20/20." I bawled tonight. It was those momentous scenes that had that deep, underlying meaning that only a PD person could empathize with (Yes - I ended the sentence with a preposition! I'm not grading papers anymore!)

It was May of 1999 that I closed a chapter in my life. I gave up my job as an elementary principal because of Parkinson's. Granny was right - things do change. And it doesn't take a century for change to occur.

I read Toad's journal entry today and wept. (This must be my day for crying!) I sensed his defeated feelings . . . been there, done that. What's even sadder (?more sad?), is I know I'll go there again. As in Toad's words, I'll lose my "want to" sometimes.

Since Michael J. Fox is not only the star (WAS the star) of Spin City and is also producer, I'm sure it wasn't happenstance that some of the lines from those previously mentioned scenes were profound. "This has been my passion; It's going to be OK; I don't know if you guys realize what a great team we are; and My greatest accomplishment is sitting around this table." Those statements seem so finite, when in reality they are not.

In one great scene, he's sitting at the bar with his former girlfriend and they're surfing TV channels but find nothing but bad news. The girl says, "Looking for a happy ending;" to which he responds, "That'll be the end of the world." I'll have to disagree. The happy ending comes when you regain your "want to." Every cloud has a silver lining, and all sunshine and no rain makes a desert.

Michael chose the song "Glory Days" to end his era of star role in Spin City. Don't look back on your "glory days" to lament how is was. . . look instead at what is and what can be. My guess is your "want to" will be revived. Granny's right - "things do change" and always will. And sometimes that includes giving up your "passion," but nothing has to be finite. If I might borrow a line from a guy who's got that all figured out . . . "It's going to be OK."

Date:: 05/25/00

Notes

Hi Peggy, Thanks for the link. I'll go and read your other entry now. Paul PNFFL

Date:: 05/25/00

Notes

Hey - seems Paul made a little editorial comment here! Paul is a retired teacher (just recently) and maintains the site "Parkinson's News - From the Front Line." Peggy

Date:: 05/26/00

Notes

Well - it's 5:16 AM in Tennessee. . . been up since 3:00, so might as well journal.

I noticed the counter for visits to this page is fast approaching 1,000. I recall that it was added after the site had been up and running a while, so the milestone has most likely already been reached. Pretty impressive - I know I come here to read journals every morning.

I wanted to share something with you. I'm president of the local Northeast Tenn. PD Support Group which meets in Johnson City. Counting "caregivers" (I'm gonna change that title to "partners"), we have 40-50 pretty active members. The "old faithfuls" number about 30.

At our meeting last Tuesday, we had a speech pathologist discuss swallowing and voice problems. It was pretty informative, but then we usually have what's called "Break-out" sessions, where the PD folks separate from their "partners" for more intimate discussions or specific activities like exercises, proper lifting techniques, etc.

We stayed together this time and everyone was requested to talk about some activity or hobby they do to help cope. They were to bring photos or a sample of their hobby (since my husband couldn't bring the entire golf course!). It was amazing what occurred!

Everyone really got into it! We had goat farmers, artists, clock collectors, computer nerds, readers, antique car buffs, poets, and on and on. Partners stayed and shared, too, and it was so refreshing to hear couples bragging on each other!

A sense of pride, self-worth, and "I am somebody" filled the room like an expensive perfume. It was wonderful! Try it - it helps to focus on being a person first - a person with Pd second. (forgive any typos - fingers are on another time zone!) Peggy

Date:: 05/27/00

Notes

Friday night, and I'm here journaling. Fingers (especially left) very s-l-o-w. Head is shaking, biting into lower lip, stiff as a poker, and probably incoherent. I'm not going to take more meds because I haven't had over 4 hour's sleep over the past 3 days. Why? I wish I knew! But I'm not complaining - just "wishing" things were different.

"I wish I had that voice back," my friend whispered last night as we watched a video of her family reunion in 1991. My friend picked out our entertainment for the evening. She was organizer of the bi-annual reunion and was announcing the debute of all babies born since the last gathering. She even sang "Don't You Step on My Blue Suede Shoes" well enough to make even Elvis proud! I had never heard her voice - her real voice - until last night. In 1994, she was diagnosed with PD.

My friend had not communicated with anyone except for brief "have to's" for nearly 2 1/2 years when we met. That lady making the announcements over the microphone on the video had crawled up into her self-made shell and was going to stay there. She thought no one cared anymore. They really did - they cared so much that they were at a loss of how to comfort her. They were too emotionally connected.

Now, I'm not saying I rode in there on my white horse in shining armor - no way! But I'm convinced that the great architect wrote this meeting into the blueprints of our lives. If I had turned my back on this "preplanned" friendship, the whole house might have been trashed. I wish the circumstances were different, but they're not.

Wishes - you know where wishing got King Midas. As the story goes, he and "wished" that everything he touched would turn to gold. Then the one person he loved more than riches turned to gold at the fate of his greedy touch. I used to think that story was about greed - but I now believe it's about wishes.

I wish my friend had her voice baack - and her balance - her body - and her smile. She told me once that she wished that she had finished her college educataion. I went back ata age 31 and with 3 kids because I had a husband who loved me enough to see that my wishes were fulfilled.

One day I thought about how the great blueprint of our lives doesn't have "specs" written into it. You know, that means the "specifics" like what changes might happen because of the many "tools" God places around. If the right people pick up those tools and use them right, amazing events take a turn (that can be a turn for the worse if the tool is used improperly or ignored altogether).

I wished once that I could give my voice to my friend. I've had such a good life. I just wish now that our paths had crossed much earlier. I've learned a lesson from her far greater than any old college degree could ever claim. I've learned perseverance. I wish you could learn it, too. Sleep well. Peggy

Date:: 05/29/00

Notes

Whew! This bedroom may have to have an extension built on to it! That's OK, because we're such good roommates. (This is unlike when I shared rooms with my brother many years ago. Even with bunkbeds, we had to draw imaginary territorial lines! None of that stuff here.)

I want to talk briefly abaout Alkaseltzer - remember the old commercial? "Plop, plop - fizz, fizz. Oh, what a relief it is!"? I believe these journals are the Alkaseltzers of our lives. It's such a relief to come here and write your thoughts. But more than that, it's such a relief to know that we all share such similar feelings and symptoms.

A short post tonight - just finding a little relief - "Plop, plop . . . Fizz, fizz." Peggy

Date:: 05/31/00

Notes

(Today's posting is really for yesterday, but you'll never know the difference!)

Today has been a horrendous “on” and “off” day! For those of you who might not know about this phenomena, for some reason after PD advances and after you’ve been on meds for a while, you have a very difficult time making it from dose to dose. Now, when I say “making it,” I want to get graphic as to the definition. Usually, a dose of meds lasts approximately 4 hours (like the 4-hour schedule of feeding a baby). For some unknown reason, that feeding schedule vanishes into thin air. I may take my pills and get worse a half hour after doing so. Or I may be completely “normal” one minute and moving like the Hunchback of Notre Dame the next! It’s very unpredictable – reminds me of living with an alcoholic. You’re afraid to plan anything, because you don’t know what shape you’ll be in when called upon to perform. In a word (inspired by my husband), it’s been a crappy day.

Today was a classic “on and off” day. It may have had something to do with the fact that I was trying to help my husband clean out the basement. Not that I did anything all that physical, but subconsciously, there was a lot of emotion involved, too. Hubby (Darrell) wanted me to “get rid of all that crap.” But some of that crap was sentimental. You know what stuff I’m talking about: old trophies of the kids from Little League days, birthday cards from Darrell’s 50th birthday, wallpaper scraps from when we first built the house 23 years ago . . . good stuff!

And then there was all of that “school stuff.” There was the Mother’s Day Recipe Book sample made by my son’s friend of 23 years ago, those “See and Say” books on every subject imagineable, and those boxes of “principal” stuff. I dug through several boxes, purging those memories that my husband called “crap.” There’s no way I’ll finish between now and next July. But at least I got started. I just wish I felt better about it.

Either today or tomorrow, PLWP will “archive the journalists postings. “Archive” – such an important word. It means something is worth saving or kept for future reference. Sorta makes me feel like I’m contributing to society. There’s nothing crappy about that!

Date:: 06/01/00

Notes

“Wednesday – Lunch with Charlene.” There it was on my calendar where I had scribbled it last week. My calendar never makes mistakes, but I do. I had left a message on my friend’s answering machine, because I hadn’t heard from her. I even e-mailed her this morning, but no word. My thoughts ran rampantly . . . my memory had failed me again. This little blunder took me back to a time when loss of memory really bothered me.

In applying for Social Security disability, I have told you about the mountains of papers and forms one has to complete. It has to be whoever perseveres the most gets initial approval. I persevered. I made the mistake of mentioning on one of the forms that “sometimes I have a memory lapse” and, like a duck on a Junebug, they jumped on it.

Within a few days I received notification that I was to take a psychological test. It wasn’t enough that I could barely get around (I call it a snail’s pace), had trouble bathing, dressing, and feeding myself; and now they wanted to see if I had any sense! My in-laws took me on the assigned date.

The place for testing was a little hole in the wall in a remote part of town. We were met by an office with no receptionist and no sign of life whatsoever. My appointment was the first one of the day. Finally, a lady surfaced (who turned out to be the diagnostician (testing psychologist) and told us to “have a seat; the receptionist was late arriving.” Finding out that the testing would take about 2-2 ½ hours, I sent my in-laws to the Wal-Mart. They were being so supportive.

I waited about 15 minutes, dreading the imminent situation more by the minute. Finally, she came to escort me to the testing area. This room was a little 8’ X 10’ recycled “closet” with overpowering furniture needing a paint job. I was asked to be seated across the table from the psychologist. From that point on I felt like I was a total idiot.

Intelligence - IQ (mental age over chronological age) - common sense - emotional stability . . . being an educator, I was well aware of the terminology. The test seemed so trite, yet I had difficulty "recalling" answers. It was all timed, which added to the frustration. By the time we got to the dexterity and encoding part (where you use your hands), I was a total wreck!

I burst into tears, and at one point the psychologist had to stop. "How long have you had your depression?" she asked.

Depression? Depression! I didn't know I was depressed! I was just feeling degraded and stupid, thank you! I must tell you that I have horror attacks when I drive by that place to this day! The timing of the Social Security Administration stinks to high heaven! I did not enjoy the fact that my one prized possession, my mind, was slipping from me.

That was nearly two years ago, but I still have nightmares about the experience. Maybe I over-reacted - but I don't think so. At any rate, I write it here to prepare any of you going through the process.

I was approved for disability without having to appeal. Thank the good Lord I didn't have to go through what many of you had to with appealing a decision. It's a demeaning requirement, but stick to it! Peggy