Date:

04/17/00

Notes

Welcome Peggy! Thanks for sharing!

.

Date:

09/04/00

Notes

Gee thanks for archiving, Bren, but where did July & August go??? lol

Date:

09/04/00

Notes

Lest you came here looking for my entries . . . they've all been "archived." Just click on the month desired to the right of my name, and I'll try to have something for you to read when you return! Happy Labor Day!

Date:

09/05/00

Notes

Last night I chatted with toad at length. We hadn't "talked" since my surgery, and we plan on doing some things together in New York at the Unity Walk. (Yes, I plan to be there.) We hope to let Nanny and my daughter, Renee, do some shopping or sight-seeig together as neither toad nor I have the stamina to do so.

Toad always gives me a lift! I decided to post in my journal about 12:20. For some reason, I got real negative - thinking about Labor Day and schools all getting started back and all. I began to recant publicly for the first time how my employer didn't work well with me prior to having to go on disability. Boy, I was letting them have it verbally! Then - POOF! The house went black - I mean black! Our power was off for nearly two hours.

As soon as the electricity came back on, I went to the computer in hopes of saving the work I had done on my entry. Not to be found. So, it was one of those "BB's" - you know "Brick Bangers" is what I call them, where the Lord sends you a flagrant sign about something. I took it as he didn't want me posting that negative stuff. (I already did my share of that once!)

So I will just reminesce about school opening and how teachers (we have several here) will always miss the school bell ringing no matter how difficult things were. There's something so intrinsicly rewarding about seeing "Aha!" moments in a child's eyes when he finally figures something out. There's something heartwarming when a student from the past sees you years later and remembers the most insignificant thing you once did in the classroom (to YOU it was insignificant).

And so, let the bells continue to ring, but let's take that same approach and love for teaching-learning and apply it to our PLWP group. The bell is ringing and new "students" in the PLWP class are registering each day. They come here looking for knowledge, understand, and compassion. They come here worried and not knowing what the future holds (much like those kids in class).

So let us become the guide that these folks need - let us share our wisdome and compassion with them. We are so privileged to have had the experience as real "teachers" - and now God has another chance for us to "show our stuff." Do you need a "BB" call to figure out this one???

Date:

09/09/00

Notes

I took a short walk in my yard yesterday. Fall temps had already signaled the photosynthesis to sluggish speeds as I noted leaves “changing colors.” I love fall! It’s like Baby Bear says in the story of The Three Bears; “It’s not too hot and not too cold – it’s just right!”

The animal kingdom senses that winter is near as birds fly south, and squirrels and other animals hoarding up “extra” food. I, too, must be preparing for hybernation . . . (if you could see these layers of fat I’ve developed!)

As I ascended my deck steps, I accidentally stuck my hand in what was a simply beautiful spider web – believe they’re called an orb –you know - the ones like those in “Charlotte’s Web?” I thought about how hard that spider had to work to complete what he thought was his “retirement” home. Then, ole serious “Pag” made an analogy.

Sometimes we weave a delicate web around ourselves in preparation for the future. We set up traps for certain comforts to surround us. There’s retirement, Christmas Club, plans for travel, health, etc. But just like that spider, sometimes a big monster (such as I was to “Charlotte”) comes along and destroys all of your plans. That “web of comfort” gets ruined by an “unexpected visitor” like PD. So what’s a mother to do?

Well, take a lesson from “Charlotte!” I went back today and low and behold … the web was repaired and was good as new (but then I’m not a very good Web Inspector!). The point is that the spider didn’t throw up “her” legs (lol) and say “Woe is me!,” she went right back to work to make things as much like the original as possible. Now, that’s what I want to be like!

Try to envision Charlotte the Spider with Parkinson’s. First, picture her having mood swings. One day she’s happy to be weaving her web; the next she hides and won’t come out. And tremor – I can see her now in the middle of that web shaking the entire web! Then there’s the bradykinesia – she weaves ever so slowly – looks like she’ll be here this time next year trying to finish that web! Same thing with her rigidity – she gets stiff and can barely move to center web. Then along comes some treatment (meds, supplement, whatever). And Charlotte has trouble adjusting to this dopamine and gets dyskinetic! Her legs (all eight of them) start jumping around and before long, her web is a mess!

Understand that I’m not being disrespectful of PD. Sometimes I just have to laugh … to keep from crying. I’ve met a whole new group of friends with a whole new perspective on life. My “web” used to be selfishly created to catch comforts for me and me alone. Now, my joy comes from trapping comforts for others. And “looking good” is not nearly as important as it used to be. I’ll settle for just a good, productive day of movement.

I might look out on my porch tomorrow and see something spectacular. I might peer closely at that web and see … yep, sure enough … that spider has spun out some words … no mistaking it. The web says “Some Peg!”

Date:

11 Sep 2000

Notes

test

Date:

11 Sep 2000

Notes

God: (Puts microphone to Peg's mouth) Tell me about your day. (As if He doesn’t already know) Peg: Bummer! Not feeling real well.

God: And your mood?

Peg: Double bummer! Been trying to have a pity party all day, but nobody will cooperate!

God: Good.

Peg: But why am I feeling so low? And my PD symptoms are acting up!

God: Your mood and PD go hand-in-hand you know.

Peg: I’m finding that out … thanks for the reminder.

God: Told anybody how you feel?

Peg: Oh yes! Hope to go to local doctor tomorrow … if I find somebody to drive me.

God: You have three kids ho live close, don’t you?

Peg: Yeah, but they all have jobs and such busy lives….

God: What about all those church friends who say, “If you ever need anything …?”

Peg: Oh, they don’t really mean it ….

God: How do you know if you don’t ask?

Peg: I guess you’re right ….. I mean, I KNOW you’re right!

God: Now that we’ve settled that…what else is causing your “mood swings?”

Peg: I guess I just want to be better …

God: Give yourself time, Peg…you’re just 3 weeks’ post-op!

Peg: I know – I know! It seems like nobody notices that I’m having hard times around the house anymore ….

God: Missing all that focused attention, aren’t you?

Peg: Well … sorta. It’s just like meeting my new friend, Bobby, the other day. Now, HE understands! He’s young and had this gosh-awful disease for 11 years! He understands what I mean about having hard times with other family members understanding …. You know, your ups and downs!

God: Yes, I know … I sent him.

Peg: I figured you had something to do with that. He needed somebody who understood, too. Thanks … I like to help others.

God: Peg, do me a favor.

Peg: For you – anything!

God: Help yourself for a while.

Peg: Like how?

God: Let all those folks who offer do something or you.

Peg: I guess you’re right … Oops! There I go again. I KNOW you’re right!

God: Now, get back in bed … it’s 3:00 a.m.! (He starts to wind up the microphone cord)

Peg: By the way… who’s listening to this conversation?

God: Oh, this is for all the angels who had Parkinson’s on earth. They love re-runs!

Date:

13 Sep 2000

Notes

Thank the good Lord for those with perceptive, empathetic eyes and ears - for they often zero in on others' mood swings. They can sense from your tone of voice or even your written words when "things aren't right."

Such occurred when I recently had a respiratory illness. I ached all over - I could barely move - I had a major "downer." "Me, get down?" you ask. "YES, ME!" But there are folks who can see beyond my "facade;" who read my soul through my words.

Thank you to Charlie, Chosh (Chris), Ryan, Jes (Joan), Bobby, and Pat E. And you, too, Jacinta & Kathleen! (And Pwnkle - Carol - whose gift of 6 vintage hats made my heart soar!) And those who always keep you uplifted - Michael and Toad. (If I forgot you - thank you, too!)

Our emotions hang on pegs from our past ... things we just can't let go - "monsters under our beds." I wrote this poem a while back - it was published but I'm plagerizing it for here and now! (I won't sue myself!) Do you have "monsters?" Mine just won't go away!

A Monster Under My Bed My room where I grew up - such bitter memories hold. It seems so foolish now, as I am growing old. I always thought when young, 'A monster under my bed!' And every night I lingered to enter my room of dread. 'A monster under my bed!' I loudly would protest. Coerced to enter doom, my waking soul attest. The fear grew less as I determined what I feared. I feared what was unknown; what never had appeared. And now that I am grown, still underneath my bed, Lie insecurities; solutions that I dread. I learned instead of shouts to plead my point & case, To put on my facade; my wise & fearless face. But there are those who know, no matter how I try, 'A monster under my bed!' remains my inner cry.

Date:

13 Sep 2000

Notes

(Poem from last entry re-posted for better formatting)

A Monster Under My Bed My room where I grew up - such bitter memories hold. It seems so foolish now, as I am growing old. I always thought when young, 'A monster under my bed!' And every night I lingered to enter my room of dread. 'A monster under my bed!' I loudly would protest. Coerced to enter doom, my waking soul attest. The fear grew less as I determined what I feared. I feared what was unknown; what never had appeared. And now that I am grown, still underneath my bed, Lie insecurities; solutions that I dread. I learned instead of shouts to plead my point & case, To put on my facade; my wise & fearless face. But there are those who know, no matter how I try, 'A monster under my bed!' remains my inner cry. (c) PWillocks

Date:

13 Sep 2000

Notes

oh well ... so much for formatting! This program has a mind of its own. Kathleen -rading you loud and clear - two more weeks of "family dynamics" or longer, huh?(groan)

Date:

14 Sep 2000

Notes

Have you ever been to a “rally?” There are “Youth rallies” that I used to attend associated with my church. We’d go off somewhere for a few hours of just youth gatherings and had motivational speakers and sang choruses in an attempt to meet the spiritual needs of young people. I recall serving as President of the Youth Rally group back in high school. Then in high school, we often had “Pep rallies” the day of the big football or basketball games. The entire student body would get together and cheer for our team to beat whomever they were scheduled to play that night. We’d go away believing we could beat the socks off of anybody! But have you ever been to a “real” rally? I’m talking about a “Parkie Rally” . . . where you go away believing you can beat whatever Parkinson’s deals you.

I recently had a “Parkie Rally” of another sense. I had a mood dip (and that’s not some new food to dip your veggies or chips in!). For various and sundry reasons, my mood took a nose-dive. I didn’t really say anything to anybody, but when one journals online, there are few secrets.

Within a few hours, I was getting phonecall after phonecall of PLWP “family” members who sensed something was not right. There’s Nan and Bren, who ALWAYS have a listening ear. And Chosh was the first to zero in on the dip. (She called it “pay-back” time.) And then Charlie, Joan, Pat, and Bobby followed with an uplifting chat. But when Ryan called, I couldn’t believe it! Just days ago, I was checking on him after a “dip” so severe that he had to be hospitalized! Others made comments online.

Incredible is about the only way to describe it! Now, we all know that a phonecall can’t always “fix” a depressed state, but it sure does help one to refocus! The first definition for “rally” is “(according to Mr. Webster) to bring back together, or “come back in a state of order.”Another definition for “rally” is “to revive; recover.” I’m “revived” by those who “rallied” to “bring me back in a state of order.” Are you guilty of having a Parkie Rally for one of our PLWP family? I hope so!

Date:

15 Sep 2000

Notes

NEW YORK OR BUST! Here we come! Just about this time next week . . . so many faces to put to nicknames ... old faces to recognize (YOU know what I mean!) . . . and time to "drink coffee and make memories (to borrow a quote from toad).

I am soooo fortnate! Talking with Dcee fom New Zealand last night - he/she (forgo to ask!) was lamenting that nothing as "unifying" as th Unity Walk was available in New Zealand) ... just kiwi fruit and SHEEP! LOL

We do live in a land of opportuniy! Yes, there are restrictions, but it's a land where a "VOICE" makes a difference! Sometimes the one right voice makes a differnce, but there is more strength in numbers.

After Michael J. Fox's testimony at Senate hearings yesterday, this "voice" is going to contact my Senators/Representatives about research. 202/224-3121.

Oh yes, if PD has robbed you of your real voice, SAY IT THOUGH YOUR FINGERS - let your fingers do the walking and talking!

(Climbing down off my political soapbox now)

Date:

16 Sep 2000

Notes

Morning! Took an Ambien and slept unil 7:00 AM (with only one potty break!)Ambien is this tiny hite pill that packs a powerful punch! Within a half hour after swalloing it, you're ot like a downed boxer! And after the count of 10, you're not up again! BUT, you awaken so refreshed and NO HANGOVER! The only drawback of Ambien is "It's habit-forming." (Well, yes, I can understand that!) But (Michael, take note), before you crash and burn from lack of sleep, I would suggest you give Ambien a try. (If there's any pharmaceutical reps out there, I'll take my advertising fee in pills, please! LOL

Just sitting here waiting for meds to kick in (Nope, no miracles yet), but I'm more "on" than usual when I first awaken (which could be due to the sleep I hadn't been getting).My computer room has a window that faces the east - there's a beautifu sunrise this morning! I can choose to look for the good in that, or I can focus on the fact that it has hues and tints of red - indicative or the forecasted rain later today. I choose to enjoy its beauty - a little rain won't dampen my spirits today.

My daily Bible verse says this little poem by Helen Steiner Rice, "Love works in ways that are wondrous and strange -- There's nothing in life that love cannot change." And at the bottom it says this profound command: Today, be an example of agape love. (The kind of love God has for us - unconditional and unmerited), Be patient, kind, forgiving, and humble.

I like that, and I believe I'll live to that today. You might give it a try, too. Peggy

Date:

17 Sep 2000

Notes

Well... (deep subject), this time next week we'll be recuperating from staying up too late for the John Lester Roast in New York City...our pocketbooks will be waining from boadway musicals, sight-seeing, and long-distance calls back home ... and our energy (if any is left) will be renewed when we meet at Central Park!

I envision hugs, smiles, an back-slapping from faces we only know through posted pictures on PLWP,or maybe just a voice... or those we've casually met at other Parkie functions, AND reunions with those we've come to love over the past few months. I can't wait!!

For those unable o come - health or financial reasons - we will try to meet another time for sure. Let's not wait an entire year.

And remember our purpose - to raise money fo PD reseach! Let's pray for a record-breaking collection!!! Thousands to squelch the PD Monster - no mercy on it !!

Meet you at the Big Apple! (And a special THANKK YOU to my husband who is funding the trip for my birthday present (November) - knowing how much it means to me. And thanks to daughter, Renee, who will be traveling with me!

Look for the two clones - about 20 years apart in age - on with a bald spot on top! That will be the Pegleg Pair!

Date:

20 Sep 2000

Notes

I've been a bit negligent of posting here. I know I have "followers," as many have e-mailed me, so that's my cue to post regularly!

Our local support group had a carry-in picnic last night. It was wll attended with nearly 40 there! Everyone was watching "Peg" to see how her surgery went. Too soon to tell but . . . does walking without cane count? ... or more quality "On" time? ... or longer periods of "On" time? . . . or getting up and actually walking to bathroom at night??? Time will tell!

Right now I want to give evryone this advice, "DO NOT GIVE UP HOPE!" My friend got his license back - that was hope fulfilled! Another friend was going strong last night on only 2 Sinemet for the day and completing lots of tasks! And another was making plans to get to NY! And two more dear friends eager to help one in trouble financially!

This is one big happy family here! Oh we fuss and get our feelings miffed, but overall, we stick together!

I like that! Keep the comments coming - it makes my day! tnpeg@yahoo.com Love you all!

Date:

21 Sep 2000

Notes

Well ... (deep subject), today is final packing day. It's New York City or bust! Thi trip is going to be more expensive than anticipated! My daughter (who was just there recently) sai "Better take $200 just for cab fares, tips, and miscellaneous stuff." She's probably right . . . maybe I'll lose weight while there (can't afford to eat!)

Our local newspaper ran a nice article about my daughter and I going to the Unity Walk. I still haven't been swamped with donations. People just don't give until they are personally hit - but at 60,000 new cases diagnosed each year with Parkinson's, it sure won't be long!

This must be dystonia month - I notice that Kathleen and others (including myself)are having more of the painful writhing of joints and limbs! OUCH! It's usually a sign of too much dopamine in one's system, but not always. I have this brace for my left leg/ankle . . . hence, my "other" nickname of Pegleg!

Well (there's that deep subject again!), lots of folks will be traveling to NYC this weekend. We need prayers for safe trips and for safety while there. Thanks; I knew I could count on you. I've got a friend facing possible colon cancer surgery this morning. So while you're on your knees, Roberta needs a few words, too.

I won't post for several days . . . but know that I'm thinking of you. You're in my head, you know! God bless the Walk! TO THE CURE! Peggy

Date:

25 Sep 2000

Notes

New York Update! My first Unity Walk resulted in strengthened relationships, renewed understanding, new friendships, and a promise to attend every one hereafter for as long as possible. Imagine some 5,000 people congregating in New York City’s Central Park on a beautiful Sunday to show support for Parkinson’s Disease research!

“Teams” congregated at various stations and donned tee-shirts bearing their own special logo. Music and motivational speeches blared from the bandstand, but not loudly enough to drown out the squeals of excitement of reunited friends who obviously use this event as an annual gathering of supporters. I met up with "old" friends, Chosh and husband, Chris, Janemartha and daughter Lisa; and meet new friends, (whom I already feel like I know!)Ryan, Madmaxx, aj & Greg, Janemartha's husband Casy & daughter, Chrissie, and others.

Banners of the various teams mark their team’s gathering spots as the “march” against Parkinson’s Disease readies. A large balloon arch of the Unity Walk’s colors of purple and teal marks the starting point of the walk. Team members are dressed in their tee-shirts as others are pulling them over their heads at the final moments. It seems strange to see John Lester pulling his white shirt over his familiar “man in black” outfit.

The grand marshal takes the stage and a roar of applause and shouts of support arises from the crowd. You can hear the “wave” of recognition comments move through the crowd, “It’s Michael J. Fox!” With casual dress, complete with sunglasses and a reversed ballcap, Michael makes a few motivational comments then leads the mass of walkers.

A sea of PLWP logos on the backs of tee-shirts soon disperses into individual spots as the varying speeds of the team members become evident. I soon pass and am encouraged by those that leave me wondering how they are even able to be here, much less think of making this 2-mile trek! Hand-made signs are raised and fill me with emotion as young people announce “I’m Walking for Grandpa” or “I’m Walking in Memory of Mother.” I look over at my own daughter’s sign that reads, “I’m Walking for PegLeg,” and mine makes a boast, “I’m Walking Because I Can!”

I chat with various walkers as I step with renewed enthusiasm. I am sensitive to those around me struggling to stand upright as their steps are laboriously taken. Although feeling I could sprint the remainder of the course, I stop at the halfway mark, knowing from experience what pushing too far can mean later. I haven’t heard how much money was collected from the Unity Walk, but it’s that much closer to a cure . . . and that’s encouraging. The Walk was well organized and well attended.

As we left to attend the book signing of Joan Snyder and Dennis Greene’s Voices from the Parking Lot, I am so happy to share the final years of my life with this wonderful group of people. They may be People With Parkinson’s and their supporters and carepartners second, but first and foremost, they are sensitive people who care about life and live it helping one another. I don’t have to wait for a walk down streets of gold to experience the same unity I saw on those paved streets of NYC’s Central Park! Now, tell me, who wouldn’t want to join a Unity Walk like that?

Date:

25 Sep 2000

Notes

New York City Update, Again! Where do I begin? At the beginning would be a great place. We (my daughter and I) made connections with our airline accommodations with little problem. We did have a turbulent ride from Atlanta to the Big Apple, which didn’t go well with the “Off” I was experiencing. But the help in Atlanta with wheelchair assistance made for a quick connection. I’ve lots my pride and quit worrying about what people think when you can board the plane walking just fine at one location and have to nearly be carried at the next. Such is the nature of the beast – Parkinson’s.

We arrive at La Guardia (and I’ve found at least 50 different pronunciations for this place!) and secure a cab immediately. The gentleman who run down the cab said “You’re in luck! You have an Explorer to ride in today!” And indeed, we were in luck! The driver was from Haiti and was so friendly. I was beginning to think all those rumors about New York people were inaccurate when the cabbie swerved from one lane to another. We had our windows down, and the oaths and names that came from drivers behind him turned New York City air blue. The cab driver looked at us and smiled and said as matter of factly, “You’re in New York!”

We arrived at the New Yorker and got registered without a hitch. The rooms were somewhat small and expensive, but that’s New York! PLWP got us a nice group discount and we felt safe and clean there. Everyone was so helpful at the hotel! Even the adjoining restaurant, “Tick-Tock Restaurant,” served excellent food! I had one of the best Grecian salads I’ve ever put in my mouth!

PLWP members were coming in sporadically all day Friday, and Saturday. After unloading luggage in the room, I attempted to connect with some of the gang. I was ready to give up when got a phonecall from Janemartha beckoning me to the lobby. Excitement filled me as I rushed downstairs from the 28th floor and fell into the arms of my long-time-no-see friend, Janemartha. Then it was like a reunion! I was putting faces with online nicknames and voices so rapidly that my head was spinning! Toad, Nanny, WeCan, Bea, Suebee, Mischief, Tambra and daughter, Dawn, Frank and Ellen, Puff, etc! We all meshed into hugs while cameras flashed and squeals of excitement arose. The hotel management had to politely ask us to move out of the main thoroughfare of the lobby as our number grew!

Later, we all met up and went as a group, led by the infamous Lil, to find a late supper. Surprisingly, many eating establishments were closing by 9:00 p.m. Then a nice looking young man told us, “Go down to the subway . . . it’s open all night.” So we treked down the designated stairway to another world in New York City. It was amazing! There were at least as many places to dine as there were people mingling in the spacious hallways! After deciding on pizza (how novel!), we made our way back to the hotel, where those depleted of energy went to bed while the others were just beginning a night on the town.

Saturday, each group did their own thing. Some went shopping, others sightseeing, and some took in a Broadway musical. But most everyone’s evening culminated in the John Lester Roast at 6:00 p.m. Saturday night.

I rushed from seeing “The Phantom of the Opera” to get dressed and go down to help with last-minute decorating. As I entered the foyer of the Ballroom, I had to squint my eyes from the illumination from the crystal chandeliers, once above me in the lobby, that were now at eyelevel. Such glorious beauty! But like an experienced wife, I secretly wondered who had the task of cleaning them!

Entering the Ballroom, I found everything already set up – tables, place settings, sign-in sheets, etc. Over in the corner was Gary, Bren’s husband, diligently working on the computer presentation. What a committed husband, as was Tom, Nan’s husband, - Carl, pwnkle's husband, and Ron - Patti's husband; in getting everything set up.

As I entered the Ballroom in awe at the enormous chandeliers hanging from the ornate tray ceiling, I saw a couple standing in the shadows. The attractive blonde I didn’t recognize. But there was no doubting the young man all dressed in black with long hair and lots of silver jewelry. I extended my hand and said, "Allow me to introduce myself, John Lester. I’m Pegleg.” John smiled coyly and nearly bowed as he shook my hand. He introduced me to his girlfriend and explained that he had just gotten in and was “checking things out.” It was apparent that he was having trouble being the focus of attention for this function. John left to get ready and I scurried around to help with nametags as people were beginning to arrive. My first registering guest was a delightful lady nicknamed, jjjane, and her husband. In no time at all the crowd began to swell as familiar faces appeared followed by reuniting hugs.

Bren had worked out such a wonderful computer presentation (along with Pwnkle’s excellently tied-in music). Photos of various activities and PLWP faces were flashing on a screen before us. Later, even more phenomenal presentations about John Lester and who he is and where he’s coming from.

Bella from Australia called during the opening of the program and “talked” to the audience about the Unity Walk, PLWP, and John Lester. She had the crowd roaring with applause. Puff courageously told of her 100-mile walk to get there as we all marveled at her commitment to the challenge. Then Ron and Patti presented PLWP with a most sizeable check as a result of a successful golf tournament held recently in Kentucky. Carol, pwnkle, announced the fund-raiser of the PLWP “What’s Cooking?” cookbooks soon to be available, as I watched her husband, Carl assist every trainsition of speakers and presentations.

Songs were sung by Suebee, Tambra, and Dawn to start us rolling with the Roast. Toad read his wonderful poems he had written about MGH Chat and John. And even John’s own mother had some moving words to share. Mrs. Lester ended her moving comments with a heart-warming, humorous statement, “And I forgive you for the 13 hours of labor!.” I watched as John Lester blushed at being the focus all of the limelight. Then some humorous skits and poems were shared by Bea, lil, Mischief and others. And the house was brought down by Chy’s “object” talk and Greg and aj’s “love” story from MGH Chat!

Then Pegleg’s turn! Funny how you are as cool as a cucumber until you stand before a crowd . . . then SHAKEROO TIME! PD and adrenaline DO NOT mix! I fumbled through a poem I had written for John that nearly brought tears to his eyes (not intended – but just to show how appreciative). While I had the floor, Nan and Bren were recognized for their relentless efforts and time put into PLWP. Plaques and bouquets of lovely flowers were awarded the pair (through the help of patti and pwnkle and husbands Carl and Ron). Of course, this brought tears to their eyes and words of appreciation for our support at PLWP.

John Lester lastly received the “Domino Award” from PLWP. This perpetual award will be given to someone who has made a big difference in the lives of PLWP’s and will have engraved plates added each year bearing the name of the award winner.

John Lester was given the floor at last. He was moved to swallowing large lumps in his throat and sniffing held-back tears from the thoughts shared throughout the evening. Although not a direct quote, John again took little credit for the monumental task he has undertaken in setting up MGH Neurology Forums and chatrooms. He said, “I just create space, like a big hotel . . sort of like rooms for people. I put in furniture and bad art. It’s you people who actually create the rooms into what they are.”

As an editor’s note, let me say that I have never met a more sensitive young man in my entire life than John Lester. He has “puppydog eyes” that cry for attention, yet he is uncomfortable with compliments. He reeks with sincerity in what he does and how he spends his time, both on and off the job. And Nan and Bren of PLWP did a fabulous job of showing him how much he means to us all. But if I might use a statement I used at the Roast in my closing statement, I want to say, “There’s one thing for certain. In Heaven there will be one angel dressed all in black . . . and that will be John Lester.”

Date:

30 Sep 2000

Notes

My days are great thank you and thank God. Your trip story was great. There were emotions by me from those who made the walk. Thanks so much for your report. See you soon.

Date:

02 Oct 2000

Notes

For those who follow my journal, you’ve probably wondered where I’ve been and what I’ve been doing! I don’t like not posting on a regular basis, but just haven’t had time. Now, who would have thought I’d be saying that? It seems that everything after New York City’s Unity Walk has been anti-climactic.

It was nearly two years ago that I had such difficulty completing a day’s work. As an elementary principal, it wasn’t uncommon for me to log in 10-12 hours daily with weekends as “catch up” days. Now that I look back, I could see my “crash” coming.

After I took disability, the transition time was extremely difficult. Transition can best be explained through a song one of my friends played for me. The song talks of being on a trapeze bar. You’re swinging away when suddenly you must change to an on-coming bar that is empty. Imagine the anxiety of letting go to grab that on-coming bar. For a few seconds, you will be totally airborn and that’s analogous to the feeling you have during life’s transitions.

Life’s transitions often leave us in a very vulnerable situation. We rely or trust ourselves enough to reach out and take hold of an oncoming challenge. Little heed is paid to whether or not a safety net is in place – and we sometimes fall. But more often than not, we boldly take hold of the new bar and pull ourselves up and into a new phase of life.

I’m still reminiscing about all of the wonderful friends I met last weekend. And now I’m in my transition time. It’s a sort of lull before taking on a new challenge.

Speaking of new challenge, Michael (Serendipity) and Joan Snyder have inspired me to get busy with preparing the manuscript for my book. If you don’t recall, Three P’s in a Pod is a true story about how three women with young onset PD manage to find each other making a threesome that supports each other. It’s a story that is still in progress.

It takes so much effort to write – even with the computer. For that reason, I won’t be posting nearly as often. I’m jumping in mid-air trusting that another trapeze bar will come along. Bear with me during this “transition” time.

Peggy

Date:

05 Oct 2000

Notes

It's 2:10 a.m. . . . and guess what? I cannot sleep! Downed a sleeping a few seconds ago, so I may slip off into lullaby land soon.

Just read Chosh's journal entry about donating her brain . . . after her death of course! And guess what? I made that decision long ago. Research scientists don't get many "brains," especially messed up ones, to study. What do I care after I leave this body? I'm sure they'll stuff my head with cotton or something so I can hear those at the wake pass by and sayone last time, "But she LOOKS so GOOD!" (LOL)

Seriously, we, the living, need to make better aarrangements for "recycling" our parts. For instance, did you know that you can "donate" your baby's "throwaway parts for research? That would things like the umbilical cord, placenta, etc. But set it up in advance. Lots of potential here.

I would never tell you how to think morally, ethically, or even personally about how YOU want to deal with your body after it's served its purpose. That's a VERY individualistic decision.

So why would I suggest what you should think about using parts of somebody else's body? Mainly, because that body - tagged for disposal, could mean another life saved. If that's what the parent or people themselves want, then so be it!

To continue research for a myriad of neurological disorders, we need humans - we need their parts - but never coercion - only how God leads you. I'm donating "the whole thing!" I consider myself religious, and do not see jeopardizing the sanctity of life in doing so.

I know that Christ sacrificed Himself for us - that's not much different. He was beaten, wore thorns in His brow, nails in His hands and feet, and was stabbed. They never found a "cure" for Him, but there was a "cure" for those who followed Him! It's called "eternal life."

Why does it seem so unethical to use disposed of body parts of babies??? It's your decision - but read the facts . . . it will result in saved lives - quality of saved lives - maybe yours. Don't be closed minded about this one - it's simply recycling what God created. Isn't that pleasing to Him? Pray about it. . . I sure have.

Date:

07 Oct 2000

Notes

Just outside my front door is a small concrete porch. On either side are shrubs (which need trimming, by the way!) and mulch all around. My pet dog, Festus, has been known to “christen” shrubs then do what I call the “macho kick.” He will throw his proud head back after having marked his territory and will kick or scratch off whatever substance underlies him (be it grass or mulch). Well, I kept finding mulch slung all over the front porch and assumed it to be Festus !Tonight, I found the REAL Mulch-slinging culprit!

Science lesson 101 Frogs vs Toads: here we learn that toads are “warty” and frogs are smooth. Well, this one on my front porch was a warty specimen of a toad! It was he who had been spreading mulch in his attempt to hide. I observed, even “booted” this brownish-green creature with my cane applied to his rear end, but he still sat there. He remained steadfast even after I passed over him. What was he doing claiming my porch?

The next time I let Festus outside, there was that toad again! Festus stopped for a quick sniff, then went on his merry way. Then I figured it out! This toad was catching his late night snack under the porch light - bugs!

I was reminded of a good friend whose name appropriately is called “toad.” He explained once why the handle, but I cannot go into detail here. Big toad has life all figured out. He lives to hunt and enjoys it immensely! Big toad has had his problems: adopted, polio as a child, Parkinson’s, shot, in a freak motorcycle accident beaten with a baseball bat, fell out of a tree, ran over with a truck by his wife, had a pallidotomy and deep brain stimulator (DBS). and more than you care to know. In other words, his stories are hard to top at parties!

At first I only knew toad online – from his journal entries, then yahoo chats. Then I had the opportunity to meet “the toad” in New York City at the Unity Walk. He’s bigger than life itself! He’s sensitive, yet has a powerful way of holding this Parkinson’s thing at bay while he enjoys life.

Toad and my toad on the front porch are very similar. Neither will budge with a little nudge if it’s not what they want to do. Neither lets a “big thing” rattle them. They both know their story and they’re sticking to it! Yet, they both are trusting enough of the “Big Guy” to not leave their commitments. They both know what they want out of life. And I don’t know how sensitive my front porch toad is, but Toad from Arkansas is the most sensitive man I have EVER run up against. Right now, Toad is out there bow hunting for deer – got a 6-point buck yesterday. He may shake, his DBS incision may be leaking, and he may have to have his “hardwear” removed and return to a nearly impossible life of shaking for 2-3 months, but I KNOW His faith will not waiver!

Toad shared a collection of poems he has written which I will treasure to eternity. One particular poem is called “God Is Always Listening.” Toad & I are setting the poem to music . . . it helps me make it through my rough days by singing the chorus. It goes like this:

“God is always listening. His burdens He’ll share. There’s joy in salvation; Peace of mind in prayer. So make a commitment. Get started today. For how can God answer? If you never pray???”

Ribbitt (translated AMEN!) Your friend for life – Pegleg aka tnpeg aka Peg

Date:

10 Oct 2000

Notes

I need to be picking up the house - which by the way is a total disaster! But here I sit "journaling." You see, I've been hit with the flu-bug, and let me warn you, it's not been pretty! My PD symptoms exacerbated to nearly putting me back to square one! Isn't that strange? I mean the flu in itself is enough, but when you have Parkinson's on top of that . . . well, the two are like water and electricity - they don't mix!

I can feel my left side going "off" now, but I'll hurry and type a few words before it totally succumbs. I don't know about other folks with PD, but I compare it to being like you've just had a stroke - nothing works on your "bad" side, and the "good" side ain't nothing to write home about! Then you get this generalized weakness all over, and those feet and legs (groan) - they feel like you have on leaded boots plus walking in half-settled cement.

"Peggy, take 15 baby steps" I hear my brain say. "Mother (brain) - May I?" Then old brain replies, "Yes you may," but then your body doesn't get the message. "I SAID - YES you may!" the brain says; yet still no response. Finally, the feet start to move, but my gosh! The baby steps my body is producing will get me from one end of the hall to the other - oh. . . let's say about two weeks from now!

That may seem like an exaggeration, but trust me, it's worse at times! At any rate, I don't wish this "bug" on anyone, and especially not people with PD! So advice #1006 for today - GET YOUR FLU SHOT! "Mother may I?" you ask - "ABSOLUTELY - POSITIVELY - WITHOUT DELAY!" your brain replies! (Or as Joan Snyder would say _"Absotively!")

Date:

11 Oct 2000

Notes

This story was emailed to me by a good friend. It struck at my heart strings - it says it all. Enjoy and "think about it:"

A frail old man went to live with his son, daughter-in-law,and four-year old grandson. The old man's hands trembled, his eyesight was blurred, and his step faltered.

The family ate together at the table. But the elderly grandfather's shaky hands and failing sight made eating difficult. Peas rolled off his spoon onto the floor. When he grasped the glass, milk spilled on the tablecloth.

The son and daughter-in-law became irritated with the mess. "We must do something about Grandfather," said the son. I've had enough of his spilled milk, noisy eating,and food on the floor. So the husband and wife set a small table in the corner. There, Grandfather ate alone while the rest of the family enjoyed dinner.

Since Grandfather had broken a dish or two, his food was served in a wooden bowl. When the family glanced in Grandfather's direction, sometimes he had a tear in his eye as he sat alone. Still, the only words the couple had for him were sharp admonitions when he dropped a fork or spilled food.

The four-year-old watched it all in silence. One evening before supper, The father noticed his son playing with wood scraps on the floor. He asked the child sweetly, "What are you making?" Just as sweetly, the boy responded, "Oh, I am making a little bowl for you and Mama to eat your food when I grow up."

The four-year-old smiled and went back to work. The words so struck the parents that they were speechless. Then tears started to stream down their cheeks. Though no word was spoken, both knew what must be done. That evening the husband took Grandfather's hand and gently led him back to the family table. For the remainder of his days he ate every meal with the family. And for some reason, neither husband nor wife seemed to care any longer when a fork was dropped, milk spilled, or the tablecloth soiled.

Date:

14 Oct 2000

Notes

WARNING: This post today is filled with explicit descriptions and emotions! “The light we see reflected is that of the sun.”

The full moon illuminated our surroundings so brightly that we nearly could have driven without headlights. I turned my head toward the car’s window, but he knew I was crying from my sporadic sniffles. I finally gave up trying to hide my fears, “That’s what eventually happens to all of us.” I had just visited my friend, Pat M.. . . she was in the final stages of Parkinson’s Disease.

The moments of silence that followed were deafening. My husband had no response to this harsh but true statement. My mental picture of my friend kept flashing in my mind. She had been unable to swallow since Tuesday; today was Friday.

I had been out of town for a medical check-up, but had kept up with Pat’s progress (or lack of) through email and the telephone. At the hospital Darrell insisted that I be pushed in a wheelchair, as my meds had not fully kicked in yet. As usual I balked, but was thankful when I saw that her room was the last down the long hospital wing.

The hospital room was filled with talkative family members, but silence loomed and all eyes fell on me as my chauffeur parked my chair in the doorway. As I entered Pat’s room, I saw an NG tube was attached to her bottle of milky nourishment. Her frail body was covered to her waist by a sheet with her bare folded arms forming the top border. Her mouth was gaping open to allow breathing around the tube, which obstructed one of her nostrils.

As bodies peeled back for my entry, I was cordially greeted by Pat’s husband, “How was your trip?” I think I responded “Fine,” but was focused on two things: 1) staying balanced enough to make it to my friend’s bedside, and 2) thinking of my response to her. I took the bony hand, warm from a slight fever, and gazed into Pat’s searching eyes. She was glad to see me.

Finally, words came, “What are we going to do with you?” Meant in half-jest, those words rang true. Pat knew that if she survived this, a long-term facility was her only option. She had not been able to normally eat for four days. A swallowing test revealed that she was aspirating food into her lungs. Although she has been unable to speak for years, through her pointing to letters on her “communication board” and trial and error; she was able to tell me that a feeding tube had been refused. I wondered if she really knew what this meant.

Then, Pat’s unrelenting love was manifested. She wanted to know how I was. She wanted to touch my recent surgical scar and asked how my tests went. I think I repeated that same one-word response, “Fine,” but quickly left the subject. How could I feel good about my progress at this moment?

Some family left, others arrived. But Pat and I were in our own little world, which was not unusual. I was doing well; I was being strong for her. Then she asked me to pray. I did so . . . from the heart. And secretly under my breath I asked God to not let her suffer any more. That was when my emotions took control over me. I sobbed incessantly and had to exit quickly.

The next day I asked a young friend to take me back to see her. The nurses had sat Pat up in a chair in the corner. A strange raspy cough was coming from deep in her throat, and she was being suctioned by her husband. She never opened her eyes but squeezed my hand to acknowledge my presence. Again, I secretly prayed for God to not let her suffer much longer. The nourishment drip had been stopped. A respiratory therapist arrived to remove the mucous plug obstructing her airway.

My friend and I shed tears, then we departed. It surely cannot be much longer. At least that was our prayer. Pat must weigh less than 100 pounds now and it appeared that her skin had been loosely stretched over her bones.

I retell this horrendous story for two reasons: 1) everyone should have a living will, and 2) we must do ALL within our power to find a cure for this and other neurological diseases. For the last few months Pat has been at the mercy of her caregivers. Wherever they placed her was where she stayed until moved. Whatever they fed her was what she attempted to eat; whatever clothing they put on her was what she wore.

When Pat passes from this life into eternity, Pat’s death certificate won’t say “Parkinson’s Disease,” but it will say “Pneumonia.” This lady has a strong Christian faith, which has sustained her this far. She has been a source of strength for my other friend, also a young onset PD victim, and for me. Whenever we feel like complaining or whining because our meds are not working, we just have to think of Pat M. who rarely experienced an “On” period.

We question why Pat has existed this long – definitely an example of perseverance. But maybe she was there to reflect the power of prayer through her unwaivering faith. That moon will shine brightly again tonight, and Pat may or may not be here at sunrise.

“The light we see is reflected is that of the Son.” (Please note the spelling of the last word in that previous sentence.)

Date:

16 Oct 2000

Notes

Tenacity . . . the first time heard that word was in a sermon. I wasn't sure of its meaning then, but I am now. My young friend, JoEllen, drove me back to visit my frail Patricia, who showed me the true meaning of tenacity.

Tonight, Pat was more alert. We interrupted a bedside conversation between Pat and her only daughter. Sheri. After our casual greetings, her daughter dismissed herself to take care of a tearstained face. Although the talk of refusing a feeding tube stood firm yesterday, today it was discussed as a possibility.

Pat wanted her nails done . . . a good sign. I was a bit off, so my back was killing me. JoEllen sensed the pain and retrieved a stool. This helped relieve the pain from my rigidity somewhat, but it “hurt so good.” As I cut, filed, and painted; I joked and kept a cheerful disposition as Pat’s eyes searched my face for sincerity.

JoEllen interrupted us to remind Pat of my upcoming birthday. It was clear that the two had discussed it before, but I announced that I wasn’t having one this year! JoEllen reminded her it was the Big 5-0, which I denied. Pat’s eyes sparkled at the prospect. Then it happened.

Pat requested her “communication board – a chart of letters an numerals made from the back of a file folder. She took her shaky index finger and spelled out “I am going to …” and then we all became confused about the remainder of her sentence. Pat repeated the spelling. We got a little further, “I am going to get . . .” JoEllen quickly left the room and Sheri, her daughter was zeroed in on our one-way conversation.

I cocked my head and said, “You’re not trying to say what I think you are, I hope?” Pat returned a puzzled look and halfway shrugged her shoulders. In my mind were words to complete her sentence, “dead,” “die,” “not be here,” “heaven,” etc. Imagine our shock when she spelled out “black dress!”

That’s when the word “tenacity’ came to fruition. This lady was not finished fighting! I felt, we all felt humiliated as we assumed Pat to be thinking of death when she was planning to celebrate my birthday in her black dress!

Tears came to my eyes as JoEllen explained in the car that Pat had been secretly planning a birthday party for me prior to her hospitalization. I knew how doubting Thomas must have felt. By the way, the feeding tube issue comes up in the next day or two. I may have to label that tube “The tenacious tube that turned time.” By the way, a synonym for tenacity is “perseverance.” Are you surprised?

Date:

16 Oct 2000

Notes

Tenacity . . . the first time I heard that word was in a sermon. I wasn't sure of its meaning then, but I am now. My young friend, JoEllen, drove me back to visit my frail Patricia, who has shown me the true meaning of tenacity time after time.

Tonight, Pat was more alert. We interrupted a bedside conversation between Pat and her only daughter, Sheri. After our casual greetings, her daughter dismissed herself to take care of a tearstained face. Although the talk of refusing a feeding tube stood firm yesterday, today it was discussed as a possibility.

Pat wanted her nails done . . . a good sign. I was a bit off, so my back was killing me. JoEllen sensed the pain and retrieved a stool. This helped relieve the pain from my rigidity somewhat, but it “hurt so good.” As I cut, filed, and painted; I joked and kept a cheerful disposition as Pat’s eyes searched my face for sincerity.

JoEllen interrupted us to remind Pat of my upcoming birthday. It was clear that the two had discussed it before, but I announced that I wasn’t having one this year! JoEllen reminded her it was he Big 5-0, which I denied. Pat’s eyes sparkled at the prospect. Then it happened.

Pat requested her “communication board – a chart of letters an numerals made from the back of a file folder. She took her shaky index finger and spelled out “I am going to …” and then we all became confused about the remainder of her sentence. Pat repeated the spelling. We got a little further, “I am going to get . . .” JoEllen quickly left the room and Sheri, her daughter was zeroed in on our one-way conversation.

I cocked my head and said, “You’re not trying to say what I think you are, I hope?” Pat returned a puzzled look and halfway shrugged her shoulders. In my mind were words to complete her sentence, “dead,” “die,” “not be here,” “heaven,” etc. Imagine our shock when she spelled out “black dress!”

That’s when the word “tenacity’ came to fruition. This lady was not finished fighting! I felt, we all felt humiliated as we assumed Pat to be thinking of death when she was planning to celebrate my birthday in her black dress!

Tears came to my eyes as JoEllen explained in the car that Pat had been secretly planning a birthday party for me prior to her hospitalization. I knew how doubting Thomas must have felt. By the way, the feeding tube issue comes up in the next day or two. I may have to label that tube “The tenacious tube that turned time.” By the way, a synonym for tenacity is “perseverance.” Are you surprised?

Date:

19 Oct 2000

Notes

It's 3:09 a.m. - I'm still battling a sinus infection and finally am on an antibiotic my son assures me will help (he's a pharmaceutical consultant). The drawback is that it interacts with the PD meds and unexpected "Off time" occurred yesterday. But I'd do about anything to shake this lingering flu stuff! But enough about me! I'm so concerned about some PD friends. Let me share here.

Take my friend, Pat M. She's awaiting surgery to put in a feeding tube. She aspirates food and liquids into her lungs each time she swallows. In brief, she no longer has the ability to swallow properly due to PD. A slight fever has kept the surgery postponed for 24 hours. Then there's Bobby. He drove himself 6-7 hours for a doctor's checkup only to find himself stuck after a night with no meds (doctor's request). I pleaded with him to not go alone! And Tim is going through so much right now. Read his journal to find out his physical, emotional, and financial woes! Then our own Toad is facing the strong possibility of having his deep brain stimulator removed due to infection! And Blu who has been diagnosed with cancer on top o PD, and on and on ... Makes you feel like giving up!

Then God (who's there watching ... and waiting ... and knows the overall plan) has someone send this story by e-mail. I share it with you now, as I believe that is why God had someone send it to me. Pay particular attention to the last lines:

> > "I WON'T GIVE UP ON HIM" > > I recently heard about a father who was working outside his home when he noticed his 5-year-old daughter sprawled on the driveway, completely focused on the cement in front of her.

> Curious, he strolled up behind her to see what was so mesmerizing. There on the driveway a caterpillar was making its way across what, for it, was a vast expanse, fraught with obstacle and danger. The girl was > absolutely spellbound, watching as the creature's tiny legs and body propelled its slinky way to... well, wherever it was going.

> "Caterpillars sure are interesting, aren't they?" the father said at last.

> The little girl didn't take her eyes off the driveway. She just grunted: "Uh-huh."

> "It looks like it would take a lot of work to move like that, doesn't it?" Dad asked.

> "Uh-huh."

> He understood. He remembered the fascination of watching creeping things crawl as a boy. They quietly watched for a few minutes, as the caterpillar struggled to negotiate a wide crack in the pavement. "Before > too long," the father noted, "he won't have to worry about big cracks like > that."

> "Why not?" the girl wondered.

> "He'll just fly over the top of it," Dad said.

> For the first time, the little girl looked up. "Nuh-uhhhh," she said. > "Caterpillars don't fly."

> "You're right -- they don't," Dad replied. "But they turn into butterflies, and you've seen how well butterflies can fly."

> "Nuh-uhhhhh," the little girl said. "You're teasing."

> "It's the truth," Dad said. "You can ask Mom. One of these days this caterpillar will build a little home for itself called a cocoon, and then he'll go to sleep for a while. When he wakes up he'll crawl out of his > cocoon, only by then he will have turned into a butterfly, and he'll fly away."

> His daughter was suspicious. "Daddy, is this sort of like that tooth fairy story?"

> "No, sweetheart," he replied, "this is true. It's really going to happen. Honest."

> "Well, OK," she said. Then she smiled and turned her attention back to the caterpillar.

"I was worried about him," she said. "But if he's really going to be able to fly, I won't give up on him."

> All of us find ourselves occasionally limited by mortality. Sometimes we're forced by circumstances to move slowly, struggling to overcome each new obstacle in our way. At other times we encounter limitations that are > even more restrictive, binding us in a cocoon of disability, depression or hardship. At such times the easiest solution would be to simply give up.

> And while I understand why some choose to do exactly that, I am in awe of those who refuse to surrender to life's vicissitudes. Like the caterpillar that emerges from its confining chrysalis to spread its wings as a beautiful butterfly, they burst free of the constraints mortality imposes upon them. And they fly.

> Which is not to imply that one who refuses to give up in the face of adversity will always emerge victorious. That would be unrealistic, and reality must occasionally have its due. But an amazing number of courageous folks do overcome, even though it's impossible to know in > advance which ones will. And the funny thing is, those who "lose" still gain much from trying -- so who's to say they haven't really won, after all?

> In a world where earth-bound caterpillars end up soaring with the birds, you learn not to give up on anyone who hasn't already given up on themselves. > > -- Joseph B Walker <ValuesCom@airswitch.net> >

Date:

22 Oct 2000

Notes

I'm visiting at pwnkle and husband, Carl's home in KY. What a gracious host & hostess! I have had a fabulous time - there are four Parkies gathered here. We just hang out - cook a little, watch movies, roast marshmallows on an outdoor fire,eat, etc. Sometimes we even talak about Parkinson's.

Carl is a carepartner. The last time I visited here, he was exceptionally nice; but now is very involved in his wife's illness and circle of friends. He's registered with PLWP and MGH forums and regularly reads and posts. He's a role model for spouses of PD folks!

I will leave for home tomorrow afternoon. I need to check on my friend. She had her feeding tube put in - hope she's discharged by now. Better get some sleep for now. Loving my vacation - Peg

Date:

27 Oct 2000

Notes

What can I say? I am in tears. These are not sad tears, but tears of joy when someone realizes what a great influence they have on people. It truly is a gift from God, and we must use our gifts for His glory.

Today, I know what hate means. I hate this disease. I hate the feeling of despair and immobility. I hate the strain it puts on once good relationships. I hate the doubting it causes in my mind. And I hate to think about it going on to take another person victim.

Then there's those phonecalls from those who know what this hate feels like. And I begin to see the silver lining in the cloud. I peer in the mirror at sad eyes and catch a glimpse of silver in my own hair. Is it a vivid reminder that my days are limited? Yes. Is it something else to hate? No. It is the silver lining I am looking for. It is a reminder of all the accomplishments I have made and those that are yet to come. It is the promise that God is always near - and God is always listening. Toad has written a song on that very topic.

I watched a glorious fall sunset last night while on my way to Bible study. The fiery orange ball was resting low on the horizon of East Tennessee rolling hills. At several points of my trip I thought, "I need to stop and take a picture." But I kept thinking, "I'll wait until we get to this clearing - and that will make an even better photo." But instead, when we reached the clearing, the brillant ball of fire had bowed its head and kissed the world good night. I had missed the opportunity. It might return in a similar fashion, but that one opportunity is gone.

Today, that beautiful sunset horizon keeps popping in my head. I will never let an opportunity pass me by again to share in the beauty of life. Although it's temporary in this world, and hardships, trials, and tribulations abound; I have the promise of an eternal life in a place far more radiant than an East Tennessee sunset. And nothing . . . nothing can take that away from me. I am thankful for friends who remind me of that promise.

Peggy

Date:

30 Oct 2000

Notes

Today was not so good (what? again!!??) Now I could choose to let it drive me crazy (?crazier?), or ignore it (you can only supress so much!), or I could laugh at it! I chose the latter.

I recall a 90-year-old woman named Sarah who guffawed in God's face at being told she would get pregnant and have her first child. (NOT a smart thing to do! What's that about "He who laughs last?")

Anyway, I just read a reply to a post by Mischief in the MGH forums. She was retrieving a magazine in a store from a lower shelf and froze (couldn't get back up). So, she looked through every magazine while down there, as if she intended to be there, until mobility returned. That's funny, but not funny!

I get a kick out of going to Wal-Mart. You know, first you park a mile away from the door because every handicapped space is taken. Then you think, "If I can just shuffle to the buggy, then I will hold onto it and look completely normal." But that sweet little greeter chases you two aisles down trying to persuade you to use the electric cart, and your disguise is foiled!

Sometimes you've just gotta laugh to keep from crying. And sometimes I get mischievous (mischief - are we from the same mold?) and like to create a sensation. Like while returning from a recent doctor visit. My husband and I were flying stand-by back home as we finished earlier than expected. Our seating got separated, but I settled near the back, shoving my cane under the seat. This nice gentleman sits down beside me, and we make small conversation.

Beverage service comes along and I order a cranapple drink. The stewardess is trying to be kind and hands me the whole can. I can't open the pop-top after she leaves so I'm forced into requesting help from the stranger next to me. He obliges and I feel compelled to remark, "Thank you. I just had brain surgery a few weeks ago." Being considerate, he doesn't ask why, which was a mistake!

I don't know what came over me, but I gave him my most serious look and said, "I was a psychopath!" I'd give anything to have captured the blood-draining look on his face! I let it ride for a few seconds and chuckled while truthfully revealing that I had Parkinson's. Then the laugh was on me! He turns out to be a pilot for the airlines we were on! How funny would it have been if he had summonsed for help?!?

I ramble on today to remind those reading that it can always be worse . . . even when you cannot imagine how! Just try to laugh it off . . . people will then you're crazy and leave you alone! lol Peggy

Date:

31 Oct 2000

Notes

As I read today's journal entries, I felt a bit of melancholy. Then I reread them again and came up with a far better word. Each entry shows such compassion for others that I was moved to sit down and write a lengthy analogy of a recent visit to Kentucky for an end-of-fall picnic with Parkie friends pwinkle, pattiz, and janemartha. I apologize for the length of the entry, but I do not apologize for the message. It's days like today that I say "thank you" for having Parkinson's Disease:

Picture in your mind a gigantic picnic blanket, larger than you have ever seen. There are plenty of angels sitting at reserved spots on this blanket all around the perimeter. The dishes of “food” are in the center on brilliantly polished gold platters. The Creator is the host; He begins passing the main dish around to the heavenly hosts. One angel called Perspective is seated at midpoint of the circle, far across the blanket from the Lord.

The Lord speaks, “Here is the main dish of life. Take only what you need and pass it on.” The first person scoops out a moderate amount of “life,” gingerly placing the contents of the spoon on his plate. He then passes the dish to the next angel.

The second angel dishes out a comparable amount of the entrée. She then looks at her neighbor’s plate, checks that her serving is about the same as the first, and passes the dish on. This continues as the main dish of “life” makes its way around the blanket of angels.

Finally, the dish gets to Perspective. She sees that the dish is halfway empty and realizes that at this rate, there will not be enough left for the remaining ones seated around the blanket. Perspective reluctantly dishes out a smaller portion and passes the rest to her neighbor. Within minutes, the dish of “life” is emptied, leaving several angels with nothing on their plates.

The Creator notes what has happened and explains, “I have plenty more – there’s enough for everyone. But first, I want to pass around this bowl of “joy.” The bowl quickly arrives in front of Perspective, as most angels take a hasty spoonful and quickly send the bowl on its way. There is plenty enough to serve everyone, and in fact some is left over.

The Creator continues with other dishes, to include: “peace,” “patience,” “kindness,” “goodness,” “faithfulness,” “gentleness,” and “self-control.” Each dish was quickly passed in anticipation of more of the entrée of “life” being served. Each time, there was ample to supply everyone with a small serving and some left in the bowl at the end of its rounds.

At last the eager crowd sees the Creator bring out a replenished dish of “life,” heaped to near overflow in its golden bowl. The Creator speaks, “The main dish will again be passed in the same manner as it originally was. We will begin at my left.” Perspective impulsively blurts out his thoughts, “Excuse me, my Lord! But will not the exact situation occur if we begin passing the dish in the original manner? I mean, the same angels will have nothing!”

The Creator smiles with great wisdom and continues, “Excellent observation, Perspective! I was about to complete my instructions by telling that you may not place any servings on top of one another, and the rim of everyone’s plate must be showing to pass inspection.” All eyes immediately surveyed their individual plates, and a few heads drop in disappointment. As the “life” was passed several could not place even a small serving on their plates without breaking the Creator’s rules. But those angels who had been shortchanged during the first passing had room for plenty, if not more, than when the entrée was first passed.

All heads bowed and the Creator blessed the “food.” The angelic group completed their meal with satisfaction. The Creator noticed that Perspective had been watching with questioning eyes during the entire meal. “What is it you wish to know, Perspective?” Startled by both the Creator’s great wisdom and voice, He replied, “There has been no “love” served . . . how can any of us exist without love?” “Alas, we cannot,” the wise one replied. The Creator’s giant hands clapped and servants appeared from the perimeter with large gold trays of “love” for dessert.

Then the Creator gave a summation of the picnic. “This will serve as your only lesson before you depart to Earth. You have had the tools served to you today to handle any situation – any situation at all.” Gesturing to Perspective seated in the half-way mark of the circle, the Creator continued. “You will often not learn to be as wise as Perspective until far into your game of life. It is then you will begin to assess situations and make judgments for the good of others and not just yourself.”

The Creator then moved behind those who had been served first, “Sometimes, you will greedily take your serving of life, giving little thought to how it may affect others. Then you hastily participate in the fruits of the spirit such as “joy,” “peace,” and “”patience.” Those who wait find that there is a more bountiful life when you put others before you in service.” The Almighty Creator then motioned for the heavenly host to arise, and they complied. “As you depart for your mission on Earth, I will give each of you three after-dinner mints. Use them wisely before your return.”

Before disappearing into the heavenly floor of clouds, each of the angels filed past the Creator who handed them the three pieces of candy. Two pieces were the same size, with the third significantly larger. As Perspective readied to disappear into the clouds, He read the labels on the pieces. They read “faith,” and “hope.” But the largest piece read “love.”

Date:

02 Nov 2000

Notes

A soft voice from a little girl answered the phone. "Hi, honey, Can I speak to your daddy? This is Peggy." I heard her gingerly put the phone down and call for her father, "Daddy, it's your friend, Peggy!"

There was a pause as I imagined the father pulling his uncooperative body up from the sofa. The voice told me he was dyskinetic as it faded in and out. "Guess what's sitting in my house?" He gave up, "Your computer is ready to assemble!" My friend was moved to tears but quickly switched to ecstacy at the thought of getting back online - one of his strongest lifelines.

We arranged a date/time for my son-in-law to set up his new system, which was only a dream a few weeks ago. Tim, Charlie, and I stepped out on faith in requesting small $5 donations to help this Parkie friend who was in the midst of a divorce and presenly had his 7-year-old as his caregiver. Then the miracle happened.

Carl, pwnkle's husband, was a computer wiz. He had followed his wife's interest in PLWP and MGH and began reading posts for himself. Carl read about this particular need and took the challenge. He took his time and expertise and built my friend a fabulous system - not brand new - but in many ways better than the purchase of all new. Tim found a monitor and other peripherals. Donations came from as far away as Australia and in increments as large as $200. People who had been struggling financially themselves contributed. It truly was a miracle.

My friend's voice broke the silence, "I may have to move away to be closer to my daughter if the house sells." I inquired, "How far away?" and found he would be about 100 miles away.

"You know," I finally managed, "It doesn't matter now." I wiped a tear of joy from my eye, "You're part of big family now ... the PLWP family." And I knew he was smiling!

Date:

05 Nov 2000

Notes

It's Michael's fault for today's entry! He threw out the creativity bait in MGH forums, and I swallowed it. In case you don't get it, it has to do with our meds!Imagine this in comicbook form, illustrated for kids! Mischief, where are you?????? **************************************** PD Land was winding down from a busy summer. The brisk winds and naked trees announced that winter wasn’t far away. The small community, nestled just north of Nowhere, was buzzing with people outdoors readying their lawns and homes for the cold days ahead.

Requip, the Rejuvenator, was raking the mountain of leaves deposited by his sleepy trees. He had labored for days, often unexpectedly dozing off, before arriving at a perfectly manicured lawn. As Requip stepped back and viewed his work with pride, he looked in the direction of his neighbor’s yard. There sat Mildred Miserable on her front porch, sitting motionless with a frown plastered on her face, unable to speak above a whisper.

Requip waved at Mildred, but got no response. No….wait! Mildred was now s-l-o-w-l-y raising her hand and managed a slight wave! Requip would have called out to ask how she was, but he forgot her name (and the question!). Mirapex Maiden had discussed the issue or “forgetfulness” often, but neither could recall what was said! Both couldn’t even remember to tell their neurologists, so the problem continued!

Suddenly, a car whizzed by at breakneck speed! Requip’s mountain of leaves were flattened by the rush of wind from the speedster! “Hey! I just spent hours on that! I’m in great AGONY!” (Being an agonist, she was often in this frame of mind!)

Requip spied Herman Helpless shuffling to his mailbox, which was at the end of his sidewalk. The speeding car had spun his frail body around in an about face, scattering his mail across the sidewalk! “Hey! That’s my friend you nearly wiped out there!” she yelled. Then she had a wave of fear overcome her as she recognized the three occupants in the speedster!

Out of the car climbed the most dreaded threesome in the town! Rigid Rapscallion could barely get out of the sporty, black car, but made it. Knurly Gaits climbed out of the back seat, leaving little speculation as to why Knurly had acquired the nickname as he stumbled and zig-zagged. Lastly, Shakes the Shyster was ready in anticipation of creating the debilitating disorder for someone else.

As Herman Helpless continued to gather his scattered mail, the three villains were plotting their next moves. Just as Herman was rising from his gathering task, Rigid, Knurley, and Shakes approached his property. “We s-s-seem to be having c-c-car t-t-trouble,” Shakes managed. Herman’s body sensed danger, but this body was out of control!! He shook violently from head to toe, and stiffness fell upon him as if he had fallen into a vat of hardening cement! Herman tried to run, but every move he attempted was in slow motion and with great unsteadiness!

Requip dashed across the street to his neighbor’s rescue, and Mirapex joins her friend. But alas, Herman was frozen in time! The dastardly threesome were about to claim another victim when Requip & Mirapex simultaneously produced spray bottles marked with “S!” They showered poor frozen Herman with the mysterious substance (which came in yellow, brown, gray, and pink. Today was pink and marked with the unknown code of 50/200 CR – the most potent!)

Generous mistings produced a nauseous Herman. However, within moments something phenomenal occurred. Herman’s once slumped posture rose to the occasion! His rigid body loosened up and his shaking ceased! He spun around on his heels and took a deep breath, proudly displaying his chest.

Then it happened! Buttons on the front of Herman’s shirt broke loose! B-O-I-N-G! B-O-I-N-G! Each button turned double axles in the air exposing his chest! Wait! Expecting to see white bleached undies, Herman surprised everyone with a gigantic red letter peering through his now buttonless shirt! Herman effortlessly grasped each side of his shirt ripping it off his chest! Could it be? Surely, it was an error! But the glaring “S” gave no denying … it was SINEMET MAN!

The shady characters were overcome with fear and pulled back in astonishment! But Herm… er….Sinemet Man had a job to do! Sinemet Man (with the helping boosts of Requip the Rejuvenator and Mirapex Maiden) tossed the threesome into oblivion! The battle was won!

By this time a large crowd of folks had accumulated, curiously cheering on The Three Defenders! Students of the now retired Herman Helpless stood in amazement at the transformation of their once wimpy teacher. The loathsome three had been banished…at least for now!

As the crowd lifted Sinemet to their shoulders and headed toward the bakery in celebration, Requip and Mirapex Maiden’s smiles began to fade. They looked rejectedly at the meager contents of the spray bottles that once blanketed the hero. Mirapex finally spoke, “I forget, but didn’t we have something to do with the banishing of those guys?” Requip sounded disappointed, “I’m afraid we don’t get much credit…he’s been around a long time.”

Tossing their bottles aside, the forgotten hero and heroine made their way through the scattered leaves to their homes (a cool, dry place with childproof doors and windows). The silence was broken by the Rejuvenator, “I don’t understand what the words on Sinemet Man’s shirt meant.” With a puzzled look, the Maiden asked, “What words?”

He replied, “Oh, I don’t know … something about OFF & ON.”

Date:

05 Nov 2000

Notes

Good morning Peg,

Date:

05 Nov 2000

Notes

Good morning Peg,

Date:

05 Nov 2000

Notes

Good morning Peg,

Date:

05 Nov 2000

Notes

Good Morning Peg, I was hitting the tab and now you have three good mornings. I tuned into the 9:30 chat and it sounded like the 8:00 o'clock one. I was wondering if people want to say what medicans they take? I say this, because those who don't take a lot might feel that they are not as bad off as others and feel guilty about it. When they should feel blessed. It would be good to know what others are taking and what response they are recieveing from it. I know that each individuel will have a diffrent one. I wish I could get everyone wieght lifting because I feel it helps me. I have some things happening to me like short stepping every once in a while and I lose my balance once in a while and I believe it is letting me know it's there but wieght traiining is helping to hold it back. This is all for now will see you TuesdaY. bob37643.

Date:

06 Nov 2000

Notes

I'm soooo afraid to do this today, but when you feel good, you need to say it (especially since my journal can be so depressing sometimes)!

I think after 4 antibiotic therapies, I (the doctors and I) have beaten this sinus/chest/flu thing! If meet Mr. Flubug again, I've got a thing or two to tell him!

Today, and yesterday have been W_O_N_D_E_R_F_U_L! Not much sleep, busy writing a grant most of night, getting ready for a special visitor in November, setting up computer system tonight for Parkie friend in need, AND went to court for little boy (16 yrs old), who was former student and in trouble with the law! His mom asked me to go, because he's been helping me out while so sick. He's got a heart of gold - just hasn't quite figured out how to show it.

My "little societal mess-up" told me once, "Mrs. Peggy, I pray every night for God to help me understand." "Understand what?" I asked. "To understand why good people like you get sick." Good people? How precious - but I'm not that good. I just think behind every bad kid is an aching heart for some reason or another. Trying to sort through the reasons is the difficult thing!

Anyway, this kid had to appear in court today - so many charges that I won't go into them here). The judge asked me if I felt he had room for change, to which I affirmed. He really IS trying! I did tell him that this was it! I told him I would be like Pontius Pilate if he got in trouble any more - I will "wash my hands!" He told me not to worry (don't worry - be happy!)

Then I got to talk with some of my favorite PLWP people today (won't name names). And I had the energy to do it all!

Thank you God for "good" days! Working on that new attitude I used to preach to my students about! Hope yours was great, too!

Date:

08 Nov 2000

Notes

We are human ... we tend to question God's infinite wisdom or His ultimate plan. But sometimes that's what He wants us to do ... question. Otherwise we go through life with no purpose; no thought about how unique we are; and no challenge of what we can be.

I am responding today to the "questioning' of a friend, who said, "What I do, or do not do, is not who I am. But that short sentence is far easier to write than it is to internalize and believe. My job, at least for the present, is to internalize and believe that I am more than what I used to do for a living."

Oct. 26 marked 2 years since I closed the schoolhouse doors to a rural family of 400 kids and a faculty/staff of around 55. For 7 years I had made that little school my home - pouring my time, resources, and heart into it. Just two days ago my husband reminded me how much time I had spent there as principal.

That was my first love ... looking back now seems it so ludicrous. I tried to squelch this disease by ignoring its symptoms, by drowning it with medication, by "Wishing & praying" it away. All resulted in failure. I was hospitalized twice, found it a challenge to sit up for 2 hours at a time, experienced constant pain, gave up driving, and withdrew into the shell of what I thought was me.

Then I stumbled upon the MGH Forums and PLWP (People Living wih Parkinson's). I found that my egocentric feelings were shared by others ... I found fighters who would give up at nothing... I found knowledge about the disease itself and its effects...I found others just as devastated, if not more ... and I found understanding.

It was then that I realized , "I am a whole person," not by my profession or civic awards on the wall, not by what I used to be, but by "who I am and what I can still be." I still can contribute to society, but now with an even far more outreaching manner than in my "healthy" body. I am given the luxury of "time" to enjoy the sunrises, hear the birds, and smell the roses. And most importantly, I have had time to reflect on the role I play in this great universe.

We are not to be pitied ... we are to be envied! And now, two years after I thought life was not worth living, I have finally been born with a purpose. To just say it negates its power ... but I believe you have arrived.

Don't look back except to remember how confused you were or what could be changed for the better. And for heaven's sake, don't look to the future for what might be or could have been in a progressive disease, except to fight this with everything left in you! To plagarize an already coined but so appropriate phrase, we must go "BACK TO THE FUTURE." And we do so only because of where we are and who we are, with God's power, our will, and the potential blessing we are for someone else. Peggy