Results from Form 1 of Peggys journal.htm

Date:: 04/17/00

Notes

Welcome Peggy! Thanks for sharing!

Date:: 07/01/00

Notes

Just returned from MJFox/PAN Forum in Washington DC and screening for clinical study, and what do I find? Archived again! LOL

Feeling "on top of the world" today, but so exhausted and piles of dirty laundry, so my entry will be detained until tomorrow.

Soooo much to tell you - so as they say in TV land "Stay tuned!" Peggy

Date:: 07/02/00

Notes

The “One” Difference Can “one” person make a difference? The answer is a resounding “Yes!” How do I know? Well, read on, and decide for yourself. The “Parkies” invaded Capitol Hill at the Forum 2000 in June. It was the merger of the Parkinson’s Action Network and the Michael J. Fox Foundation. MJF had been such an advocate of obtaining research funds for Parkinson’s Disease, that the MJFox Foundation became the new title. I had the privilege of attending the lobbyist training in Washington, D.C. this year. I had thought about going earlier, but felt the airfare was a bit steep. But when you don’t honor the 14-day advance ticket purchase, the airfare rapidly approaches a 90 degree angle in “steepness.” The cost from Tennessee to D.C. was quoted at nearly $600! No way to do that now! Then someone said, “How about priceline.com?” I had heard of it, but never attempted its use. But as many of you know, I’m a risk-taker! So I posted a price at less than what they had originally quoted me within the 14-day advance discount period. Within one hour, I was on my way to Washington! I roomed with two great gals I met through either the internet MGH Forums or PLWP – Lavenderlou and Janemartha. We tolerated each other’s messes, idiosyncrasies, and mood swings. We all sometimes regressed to the point that I could have sworn we were teens at a PJ party again! But we had a blast! The camaraderie of meeting other PD friends was fabulous from the opening night’s activities. Then the mood of the evening was spoiled with the announcement of a 31-year old Paige, once active in Parkinson’s advocacy, who decided that life wasn’t worth living anymore. This was a vivid reminder of how devastating the disease can be. The training was intense. Workshops updated us on PD statistics, how to approach the members of the Senate and House, and pending bills and how to influence our legislators of their validity in conquering Parkinson’s. The trek on Capitol Hill arrived the final day. The teams were formed and the pep talk led by Michael J. Fox himself began in the Caucus room of the Capitol Building. Strategies were discussed and prayers offered up in anticipation of the afternoon visits. My team consisted of Bren of PLWP, Greg and A.J. – defectors of CA and NY, respectively; and myself. And whatta team! Our first visit was with an attractive Rachel, Administrative Assistant for Senator Fred Thompson. We began our rehearsed introductions of how PD had affected our lives. Then the body language of sighs of relief were comforting when Rachel announced how she could empathize as her uncle had died of PD complications I the 1980’s. The visit was a “piece of cake” from that point on. We ate the provided box lunches, then made our way to Congressman Bill Jenkin’s office. We were either getting extremely tired or felt totally relaxed as we reminisced stanzas of “Stand By Me” while waiting to talk with the Congressman. Imagine our surprise when the Congressman himself came to the reception area to greet us! We weren’t so lucky this time. The Congressman was quick to tell us that his interest was with us, but his own father had been a victim of cancer; thus, therein his interest. He quizzed us on PD stats to see if we had done our homework. Fortunately, we had; and didn’t skip a beat. Then something happened. It wasn’t a one-man show, but each one began to contribute personally how the disease had impacted us. We discussed the impact on our finances, our bodies, and our relationships. We convinced our Washington friend “if we found the cure for Parkinson’s, the cure for cancer would likely have similarities.” He must have felt our visit was worthwhile, because he spent 45 minutes with us and missed two calls for Committee votes! We left D.C. elated – elated to know that “one person does make a difference.” This was reinforced during the awards banquet when Michael J. Fox acknowledged “Bren of Tennessee” and “Nan of Rochester, NY” as online supporters of him when “first diagnosed and searching for answers.” The point of one person impacting destiny was driven home when Michael also mentioned the posts of “pegleg” in his awards banquet speech. I was moved to tears . . . not that of sadness; but tears of emotional joy. You never know who you might influence when you’re chatting or posting online. Yes, one person does make a difference!

Date:: 07/02/00

Notes

Where but in America could I visit a legislator, give my honest opinion of how he should vote, and leave without getting hauled off for execution?

Where but in America can I choose the doctor I think is best (within insurance guidelines!) to treat me tell him when I've been treated unfairly?

Where but in America can I make so many choices for myself - like what I eat, drink, wear, which religion I believe, and where I want to live?

Where but in America can I journal my innermost feelings online and sound off in whatever manner I please?

Where but in America can I surpass all probability to find a cure for my disease if I am willing to put the time, effort, money, and prayers into the cause?

Happy Birthday America - I'm glad I live here. Peggy

Date:: 07/04/00

Notes

My hubby just stuck his head in my computer room to see what was going on....it's 4:00 AM and here I sit reading your journals and MGH posts. And Bea, I aapplaud your last entry about "freedom of speech" not giving one the right to be hurtful with their words. I always try to re-read my posts to avoid sounding harsh of anyone. Still, it's difficult at best as body language has much to do with how one is perceived.

So good to see Michael ("Come on Serendipity") posting regularly - I've been following his posts at MGH for some time now. He's a wealth of info on nutrition and supplement therapy!(and such a strong Christian).

And Toad, sweet Toad. As my grandpaw used to say, "It pains my heart" to know that you're having such a hard time. I think I've said it before (somewhere), but we are the temple of God (or a Higher Being - whatever you believe). Nothing dark, ugly, of painful can reside in the temple without doing some damage. Bad thoughts eat away at your soul like cancer. Get it out - journal it, tell it to a trusted friend, share it on paper with yourself, pray about it to God. Then and only then can you deal with it. And in sharing it with others, we use our experiences and strengths to help you through it.

God's great plan is so comprehensive that we cannot fathom how it works - the bad and the good keep us "balanced." I thank my God every day for friends - those whom I only know by posting here or by voice only, and those with whom I've walked on this Earth for nearly half a century (ugh!).

Stop and be thankful of friends - and remember today those who gave their lives for us to live in freedom - and they never even knew our names. Be a friend today - and remember the power you carry in your words. Use them wisely. Peggy

Date:: 07/06/00

Notes

Do you recall reading about one of those experiments where the scientists force-feed rats some drug, then publish how that drug will kill you? Well, I am of the impression that too much of ANYTHING can kill you! I mean, if you were to force-feed a turkey dry popcorn, he would eventually explode (especially after you put Tom-turkey in the oven - POW!!) My point in this silly post is to drive home a point . . . too much of the internet can kill you.

Excessive use of the net might not cause one to "literally" succumb to death, but you can certainly kill relationships. People come to the net for a variety of reasons: for information, for conversation, for comfort, for new relationships, etc. But let's not forget that we must maintain REAL relationships in the REAL world. I was recently reminded of this fact when I was on a trip.

While in Washington at the MJFox Forum 2000, only one of our "group" had brought a laptop. A roomie and I ventured one evening into the room where the infamous laptop was humming away. There was a loose connection both in the wall and in the cord that connected to the laptop. The doublebed became the "desk" upon which the laptop resided.

Now it had been two days since my roomie and I had peered into cyberspace . . . and frankly, we were having withdrawal symptoms! "I wonder who's on line right now?" we questioned. "I wish I could just catch up on the journals," we lamented. So there we sat, humped over this laptop trying to get the aol connection.

"We're in!" my roomie shouted. She was kind enough to offer to let me check my e-mail, but I declined, knowing how she was drooling at the mouth to be first. I Patiently awaited my turn, then mid-way through her search, she offered to let me have my turn. (I believe she secretly had intended to spend the night with the laptop!)

Just as I got through all the untimely clicks and was about to read my mail, my roomie sat down on the edge of the bed . . . and "poof!" The loose cord disconnected! Needless to say, I was disappointed, because the user had left the room and we didn't know the password!

What occurred next was phenomenal! After we both screamed to the top of our lungs with anguish, my roomie had an alternative way of working off her frustrations. She began to "clean" up the room . . . and I mean visciously CLEAN! She slammed and knocked empty 2-liters into the trashcan, slammed books on the table, threw clothing into suitcases, and stuffed used towels into a corner. It was exhausting watching her work!

Then I realized how addicted we were! We had relinquished an early start to a banquet to stare into this little screen that wasn't even working properly. Our priorities were out of whack!

I recant this funny story to show the ludicrousness of our actions. Please remember that although the net is a valuable tool in becoming a part of something bigger, it is not and cannot replace real relationships. Now, how about signing off for an hour or so and go hug that kid of yours, or snuggle up to your spouse (or whomever). That's Reality!!

Date:: 07/08/00

Notes

Sleep? I just missed an entire night. Can't say that anything is really bothering me, but might be. But you must have sleep.

I saw 52,000 visitors roll over on the counter at MGH forums. Quite impressive! So is 4000 hits for this page!! But that doesn't help me sleep.

I'm so stiff now that I can't sleep. Typing one-handed. Gotta dog-sit for my son tomorrow ... tomorrow? It IS tomorrow!

You know, the world never sleeps. There's news being made right this moment. In one part of the world people are waking up; in another they're going to bed. Somewhere a baby is born; elsewhere someone is dying.

I even took a sleeping pill! Only half of a 10 mg Ambien - usually works. I had tea for lunch - no caffeine after that. I just can't understand. . .

Sleep? Who needs it? My jaws are already locked and I'm biting into my lip . . . and I'm so rigid that I snap, crackle, and pop when I move. (singing that Rice Krispies tune now!)

Wait . . . my fingers are moving slower! Better take that levadopaa sooon. OOOps! I'm not drunk, justt having trouble typing. Funny, this keyboard is looking fuzzy ... I (yawn) can't figure it out .... I don't think I'll ever be able tooo sleeepp ag....Zzzzzzzzz

Date:: 07/10/00

Notes

I'm a self-taught techno-gal (not knowledgeable enough to be a techno-nerd!). But the other night, it was driven home how much I DON'T know! My friend, Chas, was walking me through, via the net, how to scan my C-drive for problem areas. Not an easy task from a techno-nerd to a dingy blonde! (That’s a compliment, Charlie). It made me create this story of a dingy blonde on one end of the telephone trying to be “talked” through a procedure. (“The story is real … only the names have been changed to protect the innocent” showing my age! I think that came from the old TB series, “Dragnet.”)! Here goes …….

Tech: Troubleshooting. Blonde: Oh! I must have dialed wrong . . don’t even own a gun. Tech: No - wait, maa’m; that’s why I’m answering the phone – are you having trouble with your computer? Blonde: Do you have ESP? I AM having trouble. Tech: Maa’m, you called me! Blonde: Yes. Called you what? Tech: (sigh) What seems to be the problem? Blonde: Oh, it’s this crazy computer! Tech: Uh, could you be a little more specific? Blonde: Yes, I can. Tech: (groan) Tell me what your computer is doing? Blonde: Oh, it’s what it’s NOT doing! Tech: OK . . tell me what it’s NOT doing! Blonde: Well, it’s just not working!

Tech: (Pounding head on keyboard) Maa’m, is your screen on? Blonde: On what? Tech: Is your computer screen turned on? Blonde: No, that’s why I’m calling you!

Tech: (deep sigh) OK, we’ve established that your computer is not working. Do you have power? Blonde: A little. Tech: What do you mean “a little?” Blonde: Well, I get to order paper supplies each week and can sign time cards . . .

Tech: (head buried in arms) I mean, do you have a source of electricity right now? Blonde: Oh, of course! Tech: Could you double-check that, please? Blonde: Yes, it’s there. Tech: Did you wiggle it? Blonde: I try to walk pretty straight Tech: I’m talking about your computer cord! Blonde: Oh! One sec . . . there! Wiggled the cord. Tech: And nothing happened? Blonde: Nope! Tech: Well … let’s check the outlet for power …

Blonde: OK. Now I KNOW how to turn it on! Lemme push this little button …. There! Tech: Now, are you booted up? Blonde: No – I’m wearing my Keds.

Tech: Nothing? Did you put a CD in the drive? Blonde: I have a CD at the bank Tech: I mean, do you have a CD in the holder on the front of the computer? Blonde: oh! You mean that’s not a coffee cup holder?!?!?

Tech: (Making sign of cross on heart). Just tell me what your screen looks like . . . Blonde: Hard to tell . . . there’s so much White-out on the screen . . . Tech: What?!?! Blonde: Well EVERYBODY makes mistakes!

Tech: Lady, just try the cord again. . . Blonde: Oh…Should I plug this cord into the wall and see? Tech: What cord? Blonde: The one in my hand that goes to the computer. Tech: (Bangs head on monitor) YES!!!

Blonde: Oh, goodie! The light’s coming on! What next? Tech: Just click on “Start” Blonde: Click? Tech: Yes, use your mouse. Blonde: Oh, I think it’s broken.

Tech: Do you know how to clean a mouse?? Blonde: I guess you cut it’s little head off first, . . . then degut it . . . Tech: (Rolling eyes into head) Why do you think your mouse is broken?

Blonde: Are you talking about the pedal? Tech: Pedal? Blonde: The thing in the floor that makes it go! Tech: Your mouse is in the floor? Blonde: Well I should think so! Tech: Put it on your desk, PLEASE!

Blonde: The pedal? Or the mouse? Tech: The mouse!!! Blonde: Are you mad?

Tech: I soon will be! Blonde: Well, I’d better get off the phone! (clink)

Tech: THUMP! (fainted)

Date:: 07/11/00

Notes

Today, I dedicate my entry to Kathleen - fellow journal. Kathleen, we'll be thinking of you on the 18th as you have your surgery.

Over 4,000 hits to this page since May! Imagine the influence we have if each visitor here spreads a little message to just one more ... then that group to another ... and another. "It only takes a spark to get a fire going."

Kathleen, you spoke of Circle of Friends. One of theme songs is that song of the same name by Point of Grace, a contemporary Christian piece. Here are the words in part:

CIRCLE OF FRIENDS

We were made to love and be loved. But the price this world demands Will cost us far too much! Spent so many lonely years Just trying to fit in. Now I've found a place in this CIRCLE OF FRIENDS.

In a Circle of Friends, We have one Father. In a Circle of Friends We share this prayer . . . That every one and soul will know And all will enter in to the In this CIRCLE OF FRIENDS.

You will be in our prayers, Kathleen. And Mimi, we have been praying for you too - hope you are doing well.

Date:: 07/12/00

Notes

Oops! I slaughtered the song posted yesterday! Wanted to include it in its entirity because of the dynamic impact it plays with its words.

So many of this "Circle" are having troubles . trials . "growing periods" at this time. I especially want us to remember the Wife of a PLWP, who once journaled here. Remember my doctor's 4-yr-old son, Nathan, who continues to battle neuroblastoma, a terminal cancer. Remember many friends who struggle every day with teens and sometimes wee ones who rebel and cause such heartache. Remember those who have recently lost loved ones - parting if such sweet sorrow.

So much ugliness in the world . . .and then Parkinson's on top of that. We must keep our focus - fight for the cure - do ALL that you can do - even if you are willing to sacrifice yourself for the cause. And find comfort in knowing that you'll be heard, strengthened, and loved in this "Circle of Friends."

CIRCLE OF FRIENDS

We were made to love – and be loved. But the price this world demands will cost you far too much. I spent so many lonely years just trying to fit in, Now I’ve found a place in this Circle of Friends.

In a Circle of Friends, we have one Father. In a Circle of Friends, we share this prayer: That every orphaned soul will win know And all will enter in to the shelter of this Circle of Friends.

If you weep, I will weep with you. If you sing for joy, the rest of us will lift our voices, too. But no matter what you feel inside, there’s no need to pretend. That’s the way it is in this Circle of Friends.

In a Circle of Friends, we have one Father. In a Circle of friends, we share this prayer. That we’ll gather together, no matter how the highway bends. I will not lose this Circle of Friends.

Among the nations, tribes and tongues, We have sisters and brothers. And when we meet in heaven, we will recognize each other With joy so deep, and love so sweet. Oh, we’ll celebrate these friends and a life that never ends.

In a Circle of Friends, we have one Father. In a Circle of Friends, we share this prayer. That it will not be long before all will enter in To the shelter of this Circle of Friends.

Date:: 07/13/00

Notes

Recently, I received a caall from the rehab facility where our Parkinson's support group meets. The lady gave me a name of a person who "needed to be contacted" and showed an interest in joining the group. I took the number and forgot about it for a day or so. As I started making plans for our annual picnic, I saw the sticky note on my roster of members and decided to give "Bobby" a call. I'm so glad I didn't pass up this opportunity.

A child answered, with a lengthy pause before speaking to my intended party. Bobby's voice was weak and nervous-sounding. After a few of the "formalities" of informing him when we met, membership, programs, etc., we got to the meat of the conversation. "I'm 49 - honestly- and have been diagnosed since 1994," I shared. Bobby's response left my mouth gaping.

At 27, Bobby was diagnosed, and he was now only 38. He had been through DBS (deep brain stimulation) and was still having difficulty with tremors and dyskinesias. He was also in the midst of a divorce and custody battles.

"Bobby!" I lamented, "You've been enduring this battle all alone?" He then shared how he had become somewhat a "recluse" for the past 11 years. For 11 years, Bobby had been trying to fight the war of severe tremors plus all the other PD symptoms, was disabled and having financial difficulties, and was now fighting the losing battle of divorce . . . all of this alone! What's so sad is that Bobby lived within 10 miles of my home.

After swallowing the lump in my throat, I qquickly shared with him some online sites for information and support. Then I invited him to our picnic and exchanged e-mail addresses. My heart melted as he told his story - one that needed to be shared immediately after his diagnosis was given, not 11 years later.

I was an elementary principal - in the limelight of the community's eyes. My symptoms, diagnosis, and battle with Parkinson's were followed by many from the onset until my disability retirement. Even then, my network of support was insufficient to beat the depression that followed. It has only been the past year that I feel that I have overcome the inevitable depression monster.

As I hung up the phone and immediately sent a follow-up e-mail I wondered, how many other young onset victims were out there? How many were becoming a "recluse' as Bobby had described? How many could/would have benefitted emotionally from being able to share their battle with job security, raising children, weathering relationship changes or treatment options? I shuttered to think. Although I was thankful that I had opened this door of opportunity, I still shed a tear of remorse for not finding it earlier.

Date:: 07/14/00

Notes

Who on earth would have thought I would be treking about the states in search of applying faces to internet handles . . . all in the name of Parkinson's research?? Yep, this sometimes cautious personality has tossed fate to the windd. Tonight I go to Bren's, and the next day make a trip to northern KY where we connect with pwnkl, oschosh, patti, and possibly a visit from Chasmob. (In the name of PD research? I don't think so!)But what fun we'll have!

Been having those darned sleep attacks again! They only last a few seconds, but those who have experienced them know how frightening they can be! You nod off a few and awaken in the wrong lane or wrapped around a tree. Not my idea of a Sunday afternoon drive! I know the driving saga will have to end if this keeps up. That will be like being a teen and getting grounded!

So much to do . . . and so little time. We had prayer meeting in an IM chat box last night - Toad was resident minister. Not many attended, mainly because it was off the cuff. Not much order in my life now - used to really bother me.

Need to get a little more shut-eye ... big day today ; big weekend! Hope you enjoyed the potpourri! Peg

Date:: 07/16/00

Notes

Half of anything is less than whole. My dad always taught me to do my best. Shouldn't others practice the same? One of our journalers, Kathleen, has anxiously been anticipating deep brain stimulation (DBS) for some time now. We must assume that when she was told by hr physicians that she should have bilateral DBS (both sides), that it was needed. Much to her dismay, she now learns that insurance will only cover unilateral DBS - or one side. In other words, they will only pay for half sugery. Let's see how they came up with this halfway decision.

Now, if you had tuberculosis in both lungs, would they fund treatment in only one lung? How about cateracts- would you only need to see from one eye? Or maybe both heart valves have a malfunction. Would they only pick one side to repair? Let's consider the premature birth of twins. Would the hospital only keep one twin in the intensive care unit? I think you see how totally ludicrous this half surgery idea is!!

If one is bad enough to operate bilaterally- why even risk invasive surgery twice just to satisfy the insurance company's ridiculous limit. Why, I've half a mind to half my premium should someone remotely suggest such a thing! Bottom line is we have got to stop fighting these inequities half-way . . . let's give it our all! That half might someday be you!!

Date:: 07/17/00

Notes

Ever had a "perfect" day? I wasn't certain what criteria made up such a day . . . that is until today.

A perfect day starts out like this: You awaken to sun shining its glory on beautiful flowers and lush foliage. Soft breezes play a melodious tune in wind chimes on a friend's back porch as nature plays adds harmony in the birds' song. All this as I sipped coffee and soak in God's creation at its best at the home of my gracious host & hostess, Mr. & Mrs. Pwnkle. The "Mirapex Moments" occur,the shuffling feet abound, unsteady bodies use the walls to regain balance . . . but no one is uneasy, because we are among friends who understand.

Our day moves to a lighter mode as we don clothing, hats, and kitchen props for a photographing session for the PLWP cookbook. Pwnkle's creativity abounds and we enjoy the "fruits" of her labor and laugh at our finished products while gathered around her computer screen. We rest, clean up, discuss philosophies, then prepare to travel to Patti' home for meeting more friends.

At Patti's (and hubby), we greet new faces, new fellowships, new families. The hugs, laughs, food, and inevitable gatherings in the computer room is captured by flashing cameras. The group migrates into sessions of mini-groups as we learn more about our newfound friendships - Chasmo, Chosh, Patti, and spouses. Then the evening meal culminates into our "new" family all present by choice at the table of life. But dessert turns out far sweeter than ever imagined.

Something signaled in my head that the time was right. I shared my story of life's pathways initiated in Heaven for our choices of action in this life. I share my story of how three women with early onset PD find complementary strength in combining patience, persistence, and perseverence in our walk of life. I share how our choice to take these paths are just that . . . our choice. And we know it is the right choice by the energy felt in the room - by the calm that flows as we view moistened eyes around the table - by the once dyskinetic flailing of arms and legs that now remain motionless and calm.

The mode then moves to seriousness - for living with PD IS serious, for both the victim - the spous - and the family. The best bottle of wine is toasted to this renewed friendship - not possible excpt through our choice to be here, but prepared in Heaven for the asking. We use more "P" words, like purpose, puzzle, peace, and plan; as each contributes to the toast of this new friendship.

This brings me to share our "fruits of labor" by culminating the evening with this statement:

This day has been predestined - part of our great plan designed by God. We could have chosen not to be here at this time, but here we are. The puzzle of life is made more complete by our sharing of our pieces of this puzzle of life. Together, this part of the great plan gives us renewed peace, purpose, and makes for the definition of a PERFECT DAY.

So I end this perfect day with prayer.

Peggy

Date:: 07/21/00

Notes

I hope my fingers hold out for this post. I have had a most interesting day.

A friend that I hadn't seen in a while brought lunch over. We talked until nearly 4:00. Just prior to her departure, I was trying to explain how God uses you "right where you are." I used to think you had to seek out people with needs or troubles. But if you truly turn it over to Him, the folks will come to you.

Just as I was attempting to explain, the phone rang. It was my "challenge" - a 16 yr-old I had in school who's a fugitive from the law. He called to tell me he had a job and to say he "loved" me. He's planning a visit soon. And I didn't ask for that one!

Then I got all involved in trying to get my friend some home health care. Seems she is wasting away rapidly and so much is left to try.

For some reason, I scheduled a live chat at PLWP Hotel. About 10 folks showed up! We discussed emotions, depression, meds, and relationships. It was great! It was suggested that we have regularly scheduled chats and even one for "carepartners."

Hubby caught me just at the end of the chat signing off. his comment was, "You're obsessed with that internet!" He said this, of course, after coming in from an after-work game of golf. Wanna talk obsession??

Nite - going on a couples retreat this weekend with church - and NO computer! Obsessed? Who me? Nahhhhhhh!

Date:: 07/23/00

Notes

Today I will attend church at a small country church where I was baptized and married . . . two major life events.

The couples' retreat Darrell and I attended was relaxing. We slept in a bed in a house built in 1832. The headboard reached to the 10' ceiling! Dark, warm colors and heavy tapestries surrounded us all weekend. We sat on a gigantic front porch at night that overlooked a lighted water fountain. A horse and buggy ride was available, but didn't take advantage of it - too much trouble to climb in and out. Good food - quiet time - and "snuggling" made for a renewed commitment to marriage. Something everyone needs on occasion.

After church today, my 90-year-old uncle from Oakahome City will celebrate his birthday. He really "looks good" for his age. Then after church I'll pack to be away for 3 days.

I've not said much about it here, mainly because I can't, but I'll be traveling to a large medical center to take part in a clinical study. Everything must be clandestine so as not to spoil the research results. I can tell you that I will take your prayers. That always helps, you know.

My husband is going with me. I'll have to be off meds for 12 + hours - never a pleasant thing. But in the name of finding a cure, it will be worth it. Mark August 16 on your calendars to pray a BIG prayer - the day the actual experimental procedure will be done. Other than telling you here, I won't be able to say much thereafter.

I'll be praying too, for those of you who might never see a cure - to those of you who might never have the chance to take part in a study - to those of you who are resolved to hopelessness. My prayer is that God will use me - however He sees fit - to help eradicate Parkinson's Disease.

Into His hands I commit my spirit - and your hope. Amen. Peggy

Date:: 07/26/00

Notes

I haven't posted in a few days - several people have brought that to my attention. The reasons have been varied: 1) I needed a break, 2)I've been traveling quite and bit, and 3) I'm not sure just what to post.

You see, I have this "problem" with "control." Do you know what I mean? I have this personality type that wants to "control" situations. There have been several situations in my life lately over which I have no control, so it has been upsetting to me. But I've finally realized one thing, I CAN control my thoughts. So I plan to share those with you now.

We took a plane to Atlanta recently . . . needless to say we were delayed both going and returning. I had no control over that, but I chose to use the time wisely. I met such a neat guy named Scott - a relatively young pharmaceutical representative. We talked at length (since my son just took a similar job, having worked 4 years as a physical therapist). This "kid" told me that he didn't let anything worry him. "Why worry? It doesn't change a thing? I figure that everything happens for a reason, so just make the best of it and you don't get ulcers for it in the meantime." What great advice! I really already knew it, but just needed a vivid reminder. By the way, he doesn't take any medicine and hasn't been to the doctor in years! Hmmmmmm.....!

Next, on our trip I had some "off" time on several occasions. Those of you out there fortunate enough to have this infamous phenomena know what I'm talking about - one minute you're flying high . . . the next you're a near invalid. My On/OFF periods are so unpredictable, too. There's an end-of-dose wearing off, but the "OFF" period may be mid-dose or whatever. So why worry? Just go with the flow. Sit down, lie down, listen to some soothing music, whatever until it passed. "And this too shall pass," I say to myself. The more you get upset about it, the worse your symptoms.

Then there's the homelife thing. Hubby gets upset and sounds off about something or one of the kids disappoints you. . . I could go on and on. But all of the worry in the world won't change things. I just need to change my reaction to circumstances, and things move quite a bit smoother.

Now, the biggy. I learned on the return from my trip that two very good friends have received bleak reports medically. One friend has been battling melanoma for about a year. She did everything to stop the vicious cancer from growing. She did chemo, radiation, and a new drug that allows the chemo to reach her brain where she had a number of lesions. She tried it all, yet she now lies in a comma in the hospital with a rather uncertain prognosis. Her family has rallied around her so much for the past year, and now this. They've had a year to prepare, but who's ever prepared for death?

My other friend is one of the Three P's you've heard me mention, Pat. She was told by her neurologist that she has Multiple System Atrophy (MSA). It's one of the Parkinson's Plus diseases for which there is no cure. The sad part is there isn't much one can do to make the end times more comfortable. I worry how she will take this, since I have been pumping her up to hang on, a cure is imminent! But I'm not sure about this situation. How does one prepare for such a sordid future?

Someone told me just today, "I wish I were like you." I had to ask what they meant, to which she replied, "You just accept your family situation, your PD, and everything and have such a strong faith." Oh, if she could but climb into my mind! I often question why - have even shook my fist at God and said, "Give this person a break here!" That's why He's in control instead of me.

If we could see the future . . . we might be able to understand the "why's" and "when's." I must admit that my faith has sustained me through much. I've only had PD for 7 years and have advanced rather rapidly. But today I am so much more comfortable with my "condition" than a year or so ago. And why? Attitude. Attitudes are built through faith. When you learn to relinquish your "control" to one who knows the big picture, one who put all of this life in motion, then there's no need to worry.

Psalms 107:28-29 says:"Then they cried to the Lord in their trouble, and he delivered them from their distress; he made the storm be still, and the waves of the sea were hushed." Maybe the calm of many storms comes through death. That one thing and taxes are all that are inevitable in this life.

The sweet smell of victory, however, comes if your relationship with the Creator and fellowman has been enough for Him to say as He opens the pearly gates, "Well done thy good and faithful servant . . ." Today remember this, that with only one tiny stroke, a minus (-) can be turned into a plus (+). Pick up the pieces of your shattered life's minuses and start making pluses out of them. Peggy

Date:: 07/27/00

Notes

My good friend, Lou, passed away last evening. She was only in her 50's. She fought cancer violently during the past few months, but she really didn't lose the battle. She left little victory signs all over the place . . . little pluses (refer to my previous post - last line).

I was strengthened by Lou's fortitude - her stamina - and especially by her carepartner. Lou's husband, Bo, is a vivid example of how I would hope every person charged with caring for a loved one would be.

Below, in part, is an e-mail message I sent him. May those carepartners out there find something in the message to help you know how much you are appreciated . . . and needed. But more than anything, may you carepartners realize that some of us understand the difficulty you have in making it through the storms of life:

"Although we will miss her, God has opened the pearly gates to a beautiful angel. . This angel comes full of grace and love, clothed in a new body. She moves fluidly through the gates onto streets of gold illuminated by His radiance. Her face displays a warm smile that exudes sensitivity. Still, she will be so missed in this life.

I want God to know this angel is special. She expressed love while she could both in word and deed. And when she no longer could, all she ever asked was for me to “Just be (her) friend.” I am remorseful that I was not a better friend. But I am so thankful our paths on this earth crossed, for I am strengthened by her fight until the very end. And I understand more the word "compassion" by the loving care her husband, Bo, so freely gave.

“The Lord is my Shepherd,” and I will want for nothing. But I long for understanding and am impatient for answers. That shall remain my weakness until I meet Him face-face in eternity. But then it won’t matter – because I will be reunited with my friend, Lou Deaton.

+++++++++++

This poem is inspired by you, Bo:

IT'S IN KNOWING

It’s in knowing that you stood by her side that should comfort you….

Your love never waivered, though you questioned “why” so often.

It’s in knowing that her final days were surrounded by angels. . .

Both heavenly and earthly; and you were the closest.

It’s in knowing that you did all that you could do . . .

And even that was not enough, because God has other plans.

It’s in knowing that she could count on you . . .

Just like you would want her to treat you, had it been different.

It’s in knowing that God held her in his hands sheltering her from pain . . .

And used you as an instrument of peace as He breathed new life into her.

It’s in knowing that you can now rest, but not without questioning . . .

As to all the things you wish you had or had not done in her life.

It’s in knowing that God holds you in His hands now . . .

And is breathing new life into you .

It’s in knowing that this is His reward to a servant . . .

As he says, “Well done, thy good and faithful servant. " By Peggy Willocks 7/2000

Thank you, Bo.

Date:: 07/30/00

Notes

I don't do this often, but this is too "spine tingling" to not post here. I had this "vision" in my head and posted under the "Rendezvous" thread in MGH forums. What transpired was that Michael (our Serendipity journaler) translated that vision from something he read from a man - and honest! I didn't read this anywhere - it just came into my head (I would remember this one!)

Just read for yourself - and I dedicate this post to Toad, who is a friend I believe "has arrived:"

What's the difference between dreams and visions? I get these pictures in my head (usually pertaining to my place in life) and I have to drop everything and go to the computer. Here's the "vision" of today - pretty deep, even for me! I hope you can get the deep meaning:

The world is a great symphony. The orchestra is composed of all elements of nature, created in harmony. The Creator set this symphonic blend of music into motion with the wave of His hand. Any deviation from total bliss was not the artist’s desire. He was there at my birth, and today He hands the baton to me.

I raise my hands as thousands of spectators await the melodious sounds to commence. The backdrop is the horizon with its firey-orange illumination reflected in the waters. The silence is deafening. The canopy is the stars above. I have no boundaries other than those I set for myself.

The instruments are also the players. On my left are the breakers of the stilled seas lying in low range. When called upon, these same breakers will rise high above my head for a resounding note. Below my feet are zillions of notes just waiting to be played. These notes take the visual form of abundant flowers and foliage. The rests, or periods of silence, are rocks which equate their length of time to their size, building into boulders and even sizeable mountains.

And I am the conductor. Motionless, I prepare for my great symphonic debute. My hands tremble in anticipation, and I hold my breath momentarily. As I come down with my arms, the flow of the beautiful music is beyond description. I close my eyes and savor the moment.

Then I open my eyes to a most fearful sight. The instruments, who are also the players, have performed differently than what I had envisioned. The lush green beneath my feet has become shifting sands. The waves rise to tsunamic heights. The boulders are thrown sporadically about my orchestra. And there is no harmony.

I could cover my eyes and wish this discord away. I could flee my stage in haste. But I am the conductor. I raise my baton once more to even greater heights and inhale deep within my soul. As I bring my arms down, the dynamics of the melody builds with extreme volume! As quickly as the sound heightens, it diminishes. The elements of nature continue on their own, making up the score as they go. Yet, I hear no discord, for I am the conductor. I am in control.

Peggy

PS Don't call for the straight-jacket just yet!

IP: Logged

michael7733 Member Posts: 629 From:baton rouge, louisiana, usa Registered: Feb 2000 posted July 28, 2000 11:21 PM -------------------------------------------------------------------------------- Peggy, I once read the testimony of a man who had fallen from a balcony and died. When his life was restored to him by a miracle he told of what he had seen. He reported that when he was in heaven he heard beautiful, harmonious music, but he saw no instruments. Upon asking where the music was coming from, his attention was directed to all of the objects that were present. He discovered that every flower, tree, blade of grass, etc. was so pure that they were filled with transparent color and each produce a pure, harmonious music free from the polution of sin. He also noticed that there seemed to be no meter to the music. He inquired as to why it was without meter. He was told that since time was non existent in eternity there could be no meter since meter is but division of time. For the present, however, we are told in Romans chapter 8 that the whole creation as well as the creature groans and travails awaiting the manifestation of the sons of God. Hence, until you lifted your baton to its highest point you had not manifested yourself enough to get the attention of creation. Upon manifesting yourself(making your presence known) the creation returned to a harmonious state.

So it must go with each of our lives. Until we make our presence known and take charge, there will be disharmony. But ah the sweet music each of us can conduct when we flow together in unity with the creator. We are all truly miracles in the making.

michael

IP: Logged

pegleg Member Posts: 705 From:TN USA Registered: Dec 1999 posted July 29, 2000 03:11 AM -------------------------------------------------------------------------------- Ohhhh -- michael! Thank you for translating my vision! I honestly didn't read that gentlemen's story ... that came totally out of my head! Peggy IP: Logged

michael7733 Member Posts: 629 From:baton rouge, louisiana, usa Registered: Feb 2000 posted July 29, 2000 09:11 AM -------------------------------------------------------------------------------- It kind of sends chills up your spine, doesn't it, Peg. Good morning everyone. I hope that you all have a blessed day full of laughter and friends. Call someone you love, and tell them so.

michael

THANKS TO MICHAEL FOR THIS ONE!

Date:: 07/31/00

Notes

Short journal entries . . . . that's my new motto. Nobody has the time to read long entries (and it's a challebge for me to be "woman of few words!").

I've been "down" for a few days . . . nowhere in the vicinity of a place called Rockbottom, but nonetheless "down."

Could it be that at our PD Support Group picnic, they messed up on assigning pavilions? I attempted to use my "Principal" skills and smiley charm to get the reunion group settling into "our" pavilion to change places. I must have lost my influence - one lady was adamant about not budging! So I watched as family members buried up wheelchair wheels in the walking trails and nearly stroked out pushing their loved ones to the "next" pavilion! I hope that lady was watching!

Or maybe it was attending the funeral of a good friend who fought and lost the battle of cancer. Did I say "lost?" I stand corrected. She had a "praise celebration" at church - sang all her favorite hymns and read favorite scriptures. And when her husband got up and spoke, I cried my heart out. What courage!

It might be the "family issues" we're dealing with at the present. You know . . . everybody has them.

Nahhh . . . couldn't be any of that. I'm supposed to always be "up," even if a friend told me "everynody can't be up all the time!'

So it must be PMS . . . (Pretty Miserable Situation). What do you think?

Date:: 07/31/00

Notes

LESSON 101: NEVER TRY TO DO A JOURNAL ENTRY AT 4:00 AM! (Did you see all those typos in the previous entry?)

Date:: 08/01/00

Notes

OK - I'm up today! My mood pendulum hath swung back to the "Happy to be alive" side! Scared you there for a day or so, didn't I? You know, I think that's just part of day-to-day living (especially if you're a 49-year-old female . . . if you know what I mean!).

Friends - what would we do without them?

When you're feeling low, just click on to PLWP for a chat or two and things begin to change. First, Periwinkle tries to cheer me up by empathizing (her mood pendulum was stuck on the bad side, too). Then there were Chas and Bren - both pulling the cords of gloom and doom so I would talk my feelings out.And Janemartha - keeps me pumped up just anticipating her visit with me this month! And my new friend, David - he's invited me to give my testimony at his church. And my, oh, my! Sunshine - sweet sunshine! I know why she has that nickname! She always sounds up! Then I go to the mailbox and local folks send cards just telling me that they're praying for me. Lastly, there's Johnny. He owns a greenhouse in my hometown. He was a big UT running back years back. Now there's a friend - calls periodically and checks on me and has me in stitches within moments.

Friends . . . where would we be without them? Probably at the bottom of Poe's pit! I've gotta do something about that pendulum . . . maybe a little oiling might help.

Date:: 08/03/00

Notes

Depression . . . I once described it as sitting atop a ball of clay. Then somebody or something comes along and takes a giant finger and pushes you deep down into the middle. It seems as if you're stuck there forever. But if you don't let the sides of your "hole" cave in, you can always look up and see light.

Reminds me of a true story when I was at school as principal. The ladies' bathroom was a great place to post notices, because everybody visited there at least once a day. (The men - only two - had to hear it through the grapevine!) Anyway, this one teacher was brillant, but was lacking in "walk-around sense."

I posted this sign that looked real official and went something like this: "NOTICE! On Friday of this week the light at the end of the tunnel will be extinguished!" Several teachers chucked about it. This one teacher, however, came to the secretary and asked, "Do you know what time the power is going to be turned off on Friday? Do you think my fish in the aquarium will be okay?" (God bless her!)

Point in brief (remember, I promised!), although chemical imbalances are a given with PD, and although external circumstances and reactions by those around us are often less than desirable, one has to but look up for light at the end of the tunnel. It's within our power to do so. (With a little help from our faith!)

Remember, whether it be Michael, toad, Kathleen, Jan, Catluv, Bea,Julia, Mischief, Mimi, Jes (Joan), Chosh, or any of the hundreds who read here . . . just the realization that the "depression" in the ball of clay WILL come is half the battle. Be prepared for it - warn family members and loved ones. Build up your faith in whatever higher being you choose, but be strong in it.

And remember that you NEVER have to look for the light at the end of the tunnel alone . . . just read somebody's journal and know that we're all in this together. And we're here . . . 24 hours a day . . . just waiting to help you.

Date:: 08/06/00

Notes

It's 4:45 AM Sunday morn . . . been up since 3:00! Chas up in California, so spoke a few lines, but might as well stay up since we go to early church service (8:30 AM). I need to wash my hair but don't know how well arms will work. Took 1 mg Requip which might help. I don't like to take Sinemet until regular 7:00 AM dose.

Gotta work more on my book! I jot down ideas, but haven't committed to manuscript style as yet! (Proscrastination is my middle name of late. lil had a good post on that in the MGH PD forum).

Speaking of MGH, hope everyone that possibly can will attend the John Lester Roast (Administrator/Webspinner of MGH). When you first enter PLWP, click on the info below the Navigator bar.

You know, MGH is where many here first "connected." I'm still highly addicted to the MGH forums, as I note that many of you still frequent the place. But we need to get the forum going at PLWP! I know it's different, but a great place to post info interesting to others, or just to say "howdy" to friends. I'm registered as "tnpeg" - but "pegleg" is the favored handle. Gotta change that soon.

And guess what? I'm a Toad now! We need to revive the "Ask a Toad" forum. Go back to the floorplan and check it out. You ask a question, and one of the "toad's" will answer. Kinda a fun way to dig into our pea-brains. (Speaking of peas, my toad has the "g's" in Pegleg cut off - so it looks like Pealea!)

Well . . . (deep subject), this was a nonsense post. Just letting you know I'm still here and hope I made you smile . . . it's the universal language! :)

Date:: 08/07/00

Notes

Procrastination! See where it gets you! I meant to oil that darn pendulum. Now it's swung back to the low side of mood.

Endogenous? Hmmm? Could be! But chemical imbalances are a given with PD and I've faired pretty well in that department. I don't even take hormones - just 23 other types of pills!

Exogenous? Highly likely! My friend, Lou, passed away last week from Cancer. Today, a guy in his 40's left this life due to the same culprit. He was a high school ball coach and a Methodist minister. And his 14-year-old son has a terminal illness, also. On top of that, my friend, Pat, one of the threesome in my book Three P's, is getting worse. It may be that she's tired of fighting her Parkinson's Plus disease.

Lesson or moral for today from Peggy's Tales (eat your heart out, Aesop!) is this: Don't procrastinate. Do what's right in your heart for fellow man. Remember, the road to Hell is paved with good intentions. I believe it was the marketing researchers from Nike ompany that put it so well . . . "JUST DO IT!" And I suggest doing it NOW.

Date:: 08/09/00

Notes

"Summer-time! And the Liv-ing is Easy!" la la la la. Whoever wrote that should walk a mile in my shoes!

This has NOT been an easy summer! I've done more traveling than in the past. Haven't been a good "passenger" since last 2 years of Parkinson's. You know - stiffness, have to have potty breaks often, thirsty. I'm not much for traveling! Can you hold a sec?

There! Had to remove an article of clothing that was binding me. Guess which one, ladies? Men have it made, you know.

Anyway, traveling can be less of a problem by doing some planning: *Take meds at regular times (not a time to mess with readjustments) *Relax! Don't try to pack the kitchen sink! *Make frequent stretching stops. *Make bathroom breaks count! Stay on potty until bladder is completely empty. This tip requires practice! *Have an area in vehicle where you can stretch out. Important!

I am blessed - I have friends all over the U.S. Some I met only through PLWP - others through church's influence, etc. I'm available most any time to talk (or chat). E-mail is tnpeg@yahoo.com

Whenever I arrange a pity party for myself, it's good to turn down the invitation. Lots going through my head lately. House wrap-up for year, surgery, informed, insomnia, speech at a guest church tomorrow - but I woke up this morning!

I have a good network of friends too. Even with my sudden traumatic cessation of work,my friend network came through. But the network is only as strong as the weakest part of the net.

oOPS! jUST ABOUT LOST MY POST WITH THE PUSHING OF A WRONG BUTTON! NOT a good feeling.

Thought for today - "If people see God in you. . . are they for Him or against Him?"

Talk about rambling . . .!

Date:: 08/09/00

Notes

"You have a piece of my heart." A friend told me that late last night. What does that mean? I'm not sure.

As I poured my guts out - two young people dying within two weeks of each other - one a close friend; the other closeness was with the family - I realized I hadn't cried. One needs to cry - it's cleansing. And I don't mean cleansing to the eyes. It's cleansing to the soul.

Visited my friend, too. She's getting worse. Her speech is worse. Makes such effort to talk that she snarls her pretty face up like she's yelling . . . but nothing comes out. It took her 2 minutes to get her pills down. I watched her sipping through her straw. It reminded me of a baby learning to suck through a straw. The liquid would almost make it to her lips, then fell back down. I found myself right in her face coaching her, "You're about to make it - go girl!" We laugh - on the outside.

I guess that's what friendship is all about - someone recognizing your need and being there. It's easy for those around you to miss the signs that you have a need. You know all the disguises you wear - laughter - projects to finish - helping others. But what it boils down to is this - will the REAL friends be able to tell what you're really thinking?

The answer is - yep. And when you cry together, you suddenly have this divine revelation . . . "they have a piece of your heart." And "You have a piee of theirs."

Date:: 08/10/00

Notes

Have you ever had a “symptom” of a disease be worse than the disease itself? Well, I’m here to tell you that there’s a devastating “symptom” of PD that saps your already weakened body to near death. This “symptom’ gnaws at you day and night. There’s no relief from its toll on your very existence. It makes you so that you can’t even think straight! It poisons your body – and it is inevitable at one time or another. And it’s not what you want – you don’t wish this ‘symptom’ upon yourself – and it’s definitely not your fault. Sometimes this ‘symptom’ comes on and is heightened by things going on in your environment – some traumatic event in your life – an injury to your body – circumstances beyond your control. And sometimes this “symptom” is due to the chemical imbalance in your brain. So when someone says, “It’s all in your head. . . .” they’re right!

Have you guessed what this “symptom” is yet? Surely you have . . . it’s depression. About two years ago, I would never have made this profession publicly . . . but now I boldly can stand and say “I’ve had depression before, and it’s not a picnic!”

You see, we’re never promised a rose garden. And although there ARE roses in this lifetime, there are also a lot of thorns. But these thorns can be removed – they can be trimmed down in your life, but it takes the help of those who understand to work on it.

How do you “work on it?” That’s where all of you PLWP’s come into play. Don’t ever play off a negative comment about how one is feeling from a Parkie. Each comment is highly significant. If you sense a fellow Parkie as being down, you will more times than likely be correct.

So lift up your fellow PLWP’s. You guys do it for me every day. I’ll get messages or e-mail trying to help. Sometimes I find fellow Parkies on the messenger at 3 and 4:00 am! And what a difference it makes to know someone cares.

I care – and the feeling is reciprocal by many of you. Thank you Ryan, for making my heart soar with your kind words about my upcoming surgery. Thank you for believing in me for my new friend, David. Thank you, Sunshine, for . . . your “sunshine!” Thank you ,Bren and Charlie, for sensing when I’m down and calling your little “conferences” to give me a boost. Thanks, Chas, for the continuous follow-up. Thank you Jane Martha, for making me giggle and just feel good all over by talking to you. Thank you Pwnkle and Lil for our crazy chats on the most outlandish topics! Thank you, Nan, for our 2:00 and 3:00 AM conversations on the phone! And thank you, Toad, for your spiritual connectedness!

One thread in our web of life is only as strong as its weakest point. Bind those threads together and you will weave a cloth strong enough to withstand a whole lotta misery! (You go first!) Peggy

Date:: 08/13/00

Notes

Remember the '60's? There was a move that insinuated that God was dead . . . this Creator had set the world in motion, then went off to another solar system leaving us to "fend for ourselves." I think He was here in the '60's . . . and He's here today. His "cape of light" surrounds and protects us (so well put by my friend pwnkle) and is ours for the asking. Is God apathetic? You tell me.

This morning - after a great "cyber-reunion in Tennessee" of Nan, Bren, Janemartha & two kids, Pwnkle, Patti & husband Ron, we had an "internet reunion" with two more friends. We have two in our midst so in need of uplifting for health reasons. We literally touched the computer screen and prayed for them. We weeped for them.

There's a new sunrise this morning in Tennessee - a glorious one. It fills my eastview window as we prayed for our friends. And it fills my heart as we sense each other's needs and rally around them.

After our online prayers, we felt that cape of light suround us; we felt warmth. Then, as if to validate that it wasn't just an emotional experience, Bren checked on messenger. The spark was started - the fire of friendship would be ablaze by noon for our two friends in need.

And to add to the truth of the situation this morning, just as the prayers were ended, janemartha began to play her harp in another parat of the house. Somehow that validated the entire event.

God is dead? Not mine.

Date:: 08/15/00

Notes

I am sailing into uncharted seas. The fog is thick, and the barriers unknown.

Like the Titanic, I cannot clearly see what lies ahead, and the captain selfishly forges on at full speed. But remember that the Titanic's fate was due to two watchmen being momentarily offguard. This is unlikely with my watchcrew.

I have so many "watching" over me - from border to border - from sea to sea. And my captain is not selfishly forging on. My captain has a purpose.

I believe with all my heart that my "Grand Opening" is going to be the start of something wonderful for Parkinson's Disease. My surgery is August 16, so I may not post here for a while. But I know that my watchmen will not be offguard.

Keep in touch with the members of our "family" at PLWP. Don't let a single person walk this walk alone. I know I haven't.

God bless us all. I'm so glad that I will be makinging a difference - for me, and for you - on the anniversary date of the birth of PLWP.

Thank you, Bren and Nan - for adopting me! Your sister - Peggy

Date:: 08/22/00

Notes

I’m going to break my new rule about short posts here today – I guess that’s permissible since I’ve been away for a while. A friend of mine who’s not afraid to “tell it like it is” gave me some advice. He said, “Pag – you write so well. Why are you always so serious? Lighten up a little!” For you, Johnny, I want this post to be my most positive, and I want to say all the right things. After all, I have so much about which to be “positive.” I just survived brain surgery. I also survived a test of compassion.

Let’s begin with the brain surgery. What mental images will I forever remember? I ran into kids from school before the operation. They would be all smiles as they hugged their former principal. Then I’d say, “Keep me in your prayers . . . I’m having brain surgery next week.” Their faces would drop like a 50 lb. Rock! Maybe they weren’t quite ready for such a report. “Brain surgery” sounds so lethal! Oh, I had all the cracks, “If they find anything in there. . . “or , “Well, once they get in there, they’ll see your whole problem . . there’s nothing there!,” etc., but all in all everyone was concerned. My mental image will be the looks on those kids faces!

From the time the prayer requests went out, which was weeks before the surgery, I was at complete peace – no apprehension – no turning back. And I must have radiated my peace. Even the bellhop followed me to the hotel room telling me that God was with me all the way. He “knew” I would be just fine. I got card after card, bulletin after bulletin, and call after call stating how I was on people’s prayer list. Imagine being wheeled to the OR with that kind of feeling! And my three grown children and husband joining hands in prayer around my hospital bed just before being taken to surgery. I’ll always visualize the brush of angels’ wings around that operating table.

Why, even the research physician himself made this comment, “She HAS to do fine; she’s got the Big Guy on her side!” And he didn’t mean the surgeon, although he was a really large fellow. All I wanted from him was a summa cum laude graduation certificate and a steady hand! He was fantastic – not much personality, but knew his stuff. (What kind of personality would you have if you drilled holes in peoples’ heads?!?!?”). Usually I only saw the neurosurgeon in the office or the OR. But I’ll never forget him making rounds at 11:30 PM one night, post-operatively (it was shortly after Gore’s Presidential Election Convention speech). As he left, he gave my knee two pats and said, “Good job!” (And I thought HE did all the work!) That’s a mental image to which I’ll cling.

I will remember Jeremy, the nurse in the Recovery Room, who was so understanding (and cute! ). I told him every corny joke my mind could think of, mainly to see if the surgeon had nicked off any of my brain connections! My visual image will be of him on the phone arguing with the neurosurgeon about whether to send me to ICU or not. I overheard, “But I CAN’T send her to ICU! She’s sitting up telling jokes!”

And the care from the nursing staff . . . outstanding! . . . specially the Research Nurse. She was like a sister through this entire ordeal – even giving out hugs before and after the surgery. My mental image of her is with angel wings sprouting from her back.

Another mental image I’ll “cherish” will be my youngest daughter, seeing me for the first time after surgery. Including the halo, Pre-MRI and post-MRI, my family (three kids, husband, mother and brother and neice) waited patiently from 6:00 AM until nearly 6:00 PM! When my daughter saw me, she said, “You’re hair’s all matted with blood!” I needed that! And although it is requested that you wait one week post-op to “wash” your hair, that same daughter used washcloths and a comb to remove my new red “Punk-Rock” hairstyle.

And although I wasn’t able to get online (I tried! Took my laptop to the hotel!), my mental image will be of names on the left of my screen, going into the PLWP chatroom with prayers being lifted up for my successful surgery. Hmmm . . . gives a whole new meaning to “chat” doesn’t it? It really doesn’t matter what happens from here on – enough “good’ has come from this to last a lifetime.

There’s a very thin line between “mind” and “soul.” In a way they are synonymous. God gives us free choice – our destiny is predetermined – He wants eternity for all of us. How we get there is up to us – our mind (or soul). I can see in my mind the “Big Guy” in the sky smiling right now . . . He kinda might look like that towering neurosurgeon I had – a large frame, white beard, white jacket – who hands you the written rules and stands on his reputation – otherwise, not saying much. I can picture God now as my surgery was completed . He pats me on the knee two times and says, “Good job!” But I didn’t do the work . . . He did. . . and I thank Him. And I thank you for the confidence and compassion you placed in His guidance.

(I tried, Johnny! That’s about as light as I can get right now. It’s just that serious streak in me!)

Date:: 08/27/00

Notes

Just the Terminator movie ... "I'm baaackk!" Don't let anybody tell you opening your head is "minor" surgery! But although we won't know for 3-12 months just how well the procedure worked, as I said to my friend, Charlie, tonight, "I'd do it again!"

My friend just left, Pat E., one of the three P's. She's tring to forego the Sinemet with IV Glutathione. (?SP) Not the most stable I've seen her, but I admire her fortitude (or was that persistance?). She brought me soy yogurt, sprouted raisin bread, and tofutti soy spread (have you tried it? it's better than cream cheese!)Such a thoughtful person - and so health-oriented with nutrition!

Last Thursday, I answered the doorbell. A lady handed me a half-dozen roses beautifully arranged. Hmmm.... I thought ... who could these be from. I couldn't wait to open the card - then I just sat down and bawled. The delivery lady asked, "Are you okay, honey?" "No," I said, "I'm not! This is from two special litle angels." For those of you familiar with my book I'm writing, the card was signed "From Perseverance and Persistance."

You see, Pat E. couldn't drive to pick me up for our weekly visit with "Perseverence," our little Pat M. It was her birthday and we so wanted to be together! But driving is off limits for me for a few more weeks, too. Pat M. couldn't swallow the other day, but we talked (or I did the talking) on her birthday, something we can rarely do. Pat M. hasn't been able to talk on the phone for some time.

And although we couldn't be physically together (the Three P's), we were spiritually bound. I thought of another "angel" in my life today, Janemartha, who gave me a beautiful harp after her visit here! I LOVE IT! Practicing up for Heaven! And two angels in Kentucky (and hubbies) whose bouquet of peach roses has graced my dining room table since my return from surgery. PLWP is full of angels, you know.

I later was told by Pat E., that the roses she sent were identical to some she sent our other Pat. Since I couldn't be there to see them, she sent the same to me. And they were Peace roses. Imagine that?

Date:: 08/30/00

Notes

Why do people make the choices they make? You cannot see into my mind (thank goodness!), and I cannot see into yours. So many circumstances and outside factors contribute to the choice one makes. The decision should be yours, and yours alone. Why would one person choose to have a hole drilled into her head, when another thinks it incomprehensible??? It may depend on how far down the path one has walked.

We talk here about being “obsessed” WITH Parkinson’s; but as I have said before, a more fitting description is that we are “possessed” BY Parkinson’s. To see a career shattered in only days because of Parkinson’s Disease is tough to swallow. I’ve walked that path. Unless you have, you cannot possibly appreciate where I’m coming from. To go into deep depression because of Parkinson’s, being oblivious of all the good things going on around you, and not caring if they go on at all is my best description of hell on earth. I’ve walked that path. Have you? When I find some of you who have, we instantly bond, sharing our strategies to overcome it. To watch a friend’s family shatter into divorce, and to watch relationships become strained and indifferent in your own life because of Parkinson’s, angers me toward any semblance of the disease. Have you walked that path? To watch Parkinson’s rob a close friend of her voice, her strength, her mobility, and her dignity is almost more than I can handle. Have you walked that path? Has it been your friend sitting in that wheelchair, drooling, wanting to lift her fork from the piece of chocolate cake that someone sliced and sat down in front of her 30 minutes ago? And only you notice, and finally feed her. And she manages a smile. To find a place of refuge in Cyberland where people seem to care, and share – where there should be no competition among ourselves, only sensitivity and unity – my impression of PLWP and MGH forums. And I am so thankful you were here. So thankful that I wanted to share all the knowledge that I had from researching or actual first-hand experience, only to find it might have been more than you wanted to know. Have you walked that path? To become so engrossed in one “circle” of friends that one or the other is ignored or short-changed is not good. We must realize that there’s a group of people outside the internet who care about us, too. But we’re still “possessed” by PD. PD makes us paranoid of one another – it robs us of remembering to do something that is perceived as apathy by another. It moves us to tears or anger over the most insignificant things. Have you walked that path? What or how far would you go to eradicate this demon that possesses us? Would you run risks by allowing doctors to mess with your brain in the name of research? Would you swallow some pill that is unknown as to what it will do to your body years from now? Would you do some weird procedure or treatment (as perceived by some) not recognized by the scientific world or accepted by your peers? If you had walked my path … if you had one inkling of hope for a cure … if it could just slow the progression … you would say “Yes!” and never look back.

Date:: 08/30/00

Notes

To watch a friend’s family shatter into divorce, and to watch relationships become strained and indifferent in your own life because of Parkinson’s, angers me toward any semblance of the disease. Have you walked that path?

To watch Parkinson’s rob a close friend of her voice, her strength, her mobility, and her dignity is almost more than I can handle. Have you walked that path? Has it been your friend sitting in that wheelchair, drooling, wanting to lift her fork from the piece of chocolate cake that someone sliced and sat down in front of her 30 minutes ago? And only you notice, and finally feed her. And she manages a smile.

To find a place of refuge in Cyberland where people seem to care, and share – where there should be no competition among ourselves, only sensitivity and unity – my impression of PLWP and MGH forums. And I am so thankful you were here. So thankful that I wanted to share all the knowledge that I had from researching or actual first-hand experience, only to find it might have been more than you wanted to know. Have you walked that path?

To become so engrossed in one “circle” of friends that one or the other is ignored or short-changed is not good. We must realize that there’s a group of people outside the internet who care about us, too. But we’re still “possessed” by PD. PD makes us paranoid of one another – it robs us of remembering to do something that is perceived as apathy by another. It moves us to tears or anger over the most insignificant things. Have you walked that path? What or how far would you go to eradicate this demon that possesses us? Would you run risks by allowing doctors to mess with your brain in the name of research? Would you swallow some pill that is unknown as to what it will do to your body years from now? Would you do some weird procedure or treatment (as perceived by some) not recognized by the scientific world or accepted by your peers? If you had walked my path … if you had one inkling of hope for a cure … if it could just slow the progression … you would say “Yes!” and never look back.

Date:: 09/02/00

Notes

It's 4:08 AM, so let's ignore typos! Chatted with David - he couldn't sleep either. Which med is causing my insomnia? Eldepryl?? The Requqip causes sleep attacks - you know - you find yourself in the wrong lane when you nod off driving; or you open your eyes and think you're in Alphabet Land (only to realize your nose is on the computer keyboard!) Oh well, I might as well tell you what will long be revered as one of my favorite life stories . . . I'll call it "The Sunshine Birthday."

It was Tuesday, I believe. Wendell is the husband of one of the Three P's (Pat M.) The Three P's (Pat E., Pat M. and Peggy) always get together on each other's birthday. Pat M celebrated number (?not telling! but less than 60) last week. But I had just gotten home from my surgery and had this headache from you-know-where! And I wasn't ready to celebrate anyway -what with my puffy face, black eyes, and "new" hairdo! Anyway, Wendell brought lunch over and Pat and the other Pat came, too. (are we confused yet?)

Pat E. did all the running, as I'm not driving yet - she brought soup - cake, candles, and party hats. (This was no rinky-dink party!)Now Pat M. is totally dependent on her hubby, Wendell. She doesn't drive, must be dressed by him, and the whole nine yards. He's a busy community leader - on the county commission,church deacon (or elder) etc. so this was really a sacrifice. Especially when we tried to get him to put on a hat, too! What a sport!

Everything was so special! I sang Happy Birthday to Pat M in Espanol, remembering my limited Spanish from when I lived in Miami. Then we lit the (???) candles. I asked if they were the re-lighting kind, because it took all four of us to blow them out! I was tempted to do what I saw a 3-yr-old do on "America's Funniest Home Videos" - he couldn't get that last candle out - so he spit on it! Works for me!

And let me try to describe that cake (see if you can draw it in your mind ) - It was about 6" high - traditional round - bright yellow through and through, with 2" thick icing on top in big dollups all around the perimeter of its top - reminded me of big, puffy clouds encircling the top. BIG dollups - each about the diameter of a silver dollar.

The sides of the cake were rolled in some sugary orange crumbs. On the top (between those puffy dollups), I placed a fresh yellow rose someone had given me. Oh, how beautiful!

When you cut inside, the moistness of the cake was unreal - melted in your mouth! Two 3" layers were topped with that paler yellow puffy icing. Sandwiched between layers was this wonderfully delicately flavored lemon custard - added as a little surprise (and lots of calories!)No ice cream needed here - it was so rich and divine!

Got it drawn? Maybe you attempted it on paper - a good test of my descriptive skills. I asked Pat E. what kind of cake it was - and a very appropriate name - "Sunshine Cake."

Anyway, Wendell partied right along with us - for nearly 2 hours! We took pictures - stuffed the cake into Pat M's mouth (she's not very good with forks) and watched her savor each morsel. She loves sweets (that's a Parkie thing!).

Wendell surprised us talking about the little personal aquarium he got his wife. She spends a lot of time sitting in this one chair by the window in their huge bedroom. We watched a Mocking Bird go in and out of a bush on a recent visit there. It was making a nest, no doubt.

Wendell also talked about fixing the kitchen floor because Pat had trouble sliding her chair on the deeply grouted ceramic tiles. He talked about maybe getting her a caged bird to watch. I recalled how he seemed so much in denial before - but now was handling his wife's future quite well.

As the party broke up (I was getting awfully tired), and as Wendell pulled Pat up, helped her get her balance, and pulled her to the car,then tucked her legs inside, I began to think about carepartners. How hard it must be for him to do all those necessary things we take so for granted. His young wife was so dependent who should be playing ball with the grandkids, or they should be taking long trips somewhere.

I thought about how she must have felt looking at my surgical scar, realizing that she may never know a cure. I recalled a card I got in the mail from Wendell and Pat. He, of course, had to go buy it, sign it (she can't write), and mail it - little things we take for granated. And he had to endure three good Parkie friends talking about labor pains and "girl" stuff just so that his wife could share some "Sunshine" cake . . . and "Sunshine" smiles in her life. I really have a renewed respect for carepartners after that party.

Happy Sunshine Birthday, Pat M. - and thank you, Wendell.