The Tennessee River at Neyland Stadium
Welcome Peggy! Thanks for sharing!
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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!
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.”
Good morning Peg,
Good morning Peg,
Good morning Peg,
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.
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!
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
There seems to be a lot of thought being given to our "position" in life lately. Greg, a former lawyer now on disability due to PD, made this wonderful post on "Ghosts" in MGH Forums. He points out that he now identifies with 'ghosts' of his former position as a lawyer. You just needd to read it. Anyway, he inspired this poem on the same subject:
ONLY ME
"Just who are you anyway?" my reflection asked. The reply came loud & clear, "I'm the Ghost of Past." "I'm your birthplace, order, and time...." my reflection said. "I'm your parents, experiences & relatives now dead."
So life went on a decade or so, and on another day, I looked into the mirror again, not knowing what to say. Sensing my confusion, I heard the reflection's voice, "If you want to change your image, YOU should make the choice!" "And who are you?" I finally managed, sensing well a change. "Oh, I'm the Ghost they all call Future. I'll be what choice you claim."
So time went on (it always does), and no more ghosts did come. Till one day I was tired & weak, not happy ...overcome. Into my face I stared so long, probing each wrinkle of time. “And who are you?” I finally asked, not feeling in my prime. “I’m the Ghost that Always Was. I thought you’d never see!” “I’ve waited here through all your thoughts of what was meant to be.”
For once I rendered speechless, and self-absorbed in mind. I thought of all before me, of all I’d left behind. I turned from my reflection, and stared at shaking hands; Of all they had accomplished, of all my life’s demands. With pain and tear-stained lashes, I clenched my hands to fists! I sobbed for all my thinking of all of life I’d missed!
And thrusting hands toward Heaven, I fell down on my knees, And prayed for God’s forgiveness, for Him to hear my pleas. And time went by (it always does), as I arose in strife, I looked at my reflection in search of answers to life. This time conviction seized me, as I saw the Ghost ‘ore me, Fade into oblivion … till staring at only me. (c) Peggy W. 11/2000
Just got back from 2 day visit at Parkinson's Center of Excellence in Atlanta. There really are good places for PD treatment in this world. Today I celebrate half a century (Ryan and others have already plastered it everywhere they can think of, so why hide it?). I'm really grateful to be here - didn't think I'd live to age 40 a few years back. God must not be finished with me yet!
I think growing older (especially milestones like your 50th birthday) is something we can cherish from past experiences. I sometimes wish that I could climb mountains, race across meadows, or just have enough stamina to do the many things I love. I'm outdoorsy by nature. Give me a creek or an oceanside spot, and I'm tied up for the rest of the day!
I rarely do things outside now. I've got to make that a resolution, but can't wait until Christmas. I need to get out a putter in the yard more - even if I get nothing accomplished. The "busy" season begins now - candy, cookies, cards, gifts, etc. But this year, my 50th Christmas, I'm going to kick back and enjoy the season. You never know if this one will be your last - not because of death, but because it may be the last one where you can move on your own.
Won't you join me in the nostalgia of the smell of gingerbread, gifts under a tree you found in your father's field, visits to shut-ins, homemade candles burning in windowsills, and children's plays of their rendition of the Greatest Story Ever Told?? Sorta of an early start, bu I'm capturing the moment - day by day.
What did I do on my 50th birthday? Well, I did NOT have to experience big signs in my front yard announcing this milestone. However, a dear "?friend" whose name shall remain anonymous DID post the fact in MGH forums! Just wait, Ryan! I'll get you back! And another "?friend" posted a putdown under the post - something about how I was so old that I remembered when Grandma Moses was called Aunt Moses! True friend, Michael!
Seriously, I had a very nice birthday! The florist delivered three beautiful arrangements from dear friends - one of which I met over the internet. Thank you Canadian buddies! You can cross the border to deliver posies any time!
A retired teacher-friend called early yesterday to invite me to her inauguration onto the local school board. Then I got an invite to the local middle school to see a play, "Annie." I got to get loads of hugs from former students. I got a little weepy, but they were joyful tears.
My kids had a surprise when I went to the church's Thanksgiving dinner - they had this humongous cake made for me and another dear friend, Ann, who has been fighting cancer for some time. We didn't know we had the same birthday! Before we closed our eyes and blew out the question mark candles on opposite sides of this 3X3' cake, I saw her close her eyes and make a wish. I knew her wish was to be cured of the cancer and live longer. Mine was to lose 20 pounds over the next month - then I cut myself a huge piece of cake!
I've decided to not get too serious about this "life" thing. We're not promised amnesty from dreaded diseases and pain in this world, and we're told over and over again how it's only "temporary." Well, I can stand anything if it's temporary! I will continue to fight for a cure and better treatment, but I'm not going to make the "living" part miserable as a result of my search. Am I making sense?
My husband had a sleep study last night - so I got the bed all to myself. And know what? I couldn't sleep! I was up at 2:00 AM playing the harp - again at 4:00 trying to get online, which I did for an hour or so. Then server went down, costing me another hour or so.
Another friend is coming after me in an hour to continue my birthday celebration. It's the 3 P's day to celebrate (a group of three young onset ladies who have found strength through our friendship). I'm sure I'll eat more cake.
So much for that 20 lb. weight loss wish! I love sweets!
Thanks to all of you for the birthday wishes - I'll try to return the wish on yours, but know that I'm blonde - and VERY forgetful! Love ya! Peggy
Here I am still celebrating my big 5-0! I believe this was one of the nicest ever - I now know how to appreciate life, thanks to PD.
Wait a minute! Did I say "thanks to PD?" Yep, I went back and checked . . . it was tnpeg aka pegleg! And I'm sober! (Not medicated yet, but have all my faculties!)
Yesterday was birthday time for the 3 P's (the two Pat's & Peggy). The party was at my friend, Pat M's. You might recall I gave her up for dead a few months ago. Well, she may outlive us all! I watched her husband grind up her pills, stir them up in water & "shoot" them with a big syringe into her feeding tube. She actually had good color to her face - the nutrition must have helped.
We all came to the table, even her nurse's assistant. Irene is a little 70-year-old toothless wonder who has survived a heart attack and 3 bypass surgeries (or so she says). Irene laughs a lot, leaving me in a quandry as to her mental status! Anyway, the 23-yr-old journalist, JoEllen, who has befriended me since she wrote an article on me 2 years ago, brought Wendell's requested lunch - barbeque. Now, how Wendell(Pat M's husband) thought his wife could eat that sandwich is beyond me! But a half sandwich was placed on her plate.
I was surprised that Pat was eating anything by mouth, as the technician and doctor told her every time she swallowed some food particles would go into her lungs. Recall that she has extreme difficulty swallowing & hasn't talked in 3 years. But there she sat, sucking the juice out of a piece of pork barbeque! I figured, why not? She might as well enjoy her last days.
Pat M. brought Mardi gras beads, sunglasses, and those party whistles you blow. She must be showing her age, because the blowers didn't make noise. I like noise! I grabbed the edge of a piece of wrapping paper and made a whistle. I don't think Irene appreciated it - she didn't laugh and asked me how old I was.
We ate cake, then I opened presents - like I needed anything! I got a CD from my journalist friend, JoEllen - a basket of good things to eat from Pat E. - and a lotion set in a beautiful decanter from Wendell & Pat M. Wendell told me he picked it out (I knew that) and thought of me when he saw the decanter.
We chatted and I told corny jokes, then each had their own personal agendas. The party broke up - Irene & Wendell washed dishes - and I said my goodbyes to my friend. "Thanks for such as nice birthday party," I told her and hugged my frail friend. There she sat, having sucked on that piece of barbeque, dressed in black as she had promised she would be, unable to contribute anything to our conversation. Then Pat surprised me. She puckered up and planted a big smooch on my cheek and mouthed the words, "You're welcome."
Paul says in Romans 8:28, that "in all things God works for the good of those who love him, who have been called according to his purpose." I know that Pat M's "purpose" has been to strengthen the other Pat and me. But somehoe it seems that she got the short end of the stick, and I weep for her humbling strength.
Morning! And what a glorious morning it is! I bounced out of bed (Yes! Bounced!) and only slightly shuffled to let the dog out this morning. I slept well (with the help of a teeny pill known as "Ambien"), so I'm ready to roll today! I ran water to wash my hair and took my morning meds. But did I get busy cleaning up this messy house? NOT! Here I am typing away - and I've already been posting in the MGH forums!
By the way (BTW), have you checked out the new PLWP Forum John Lester set up in the MGH forums? Fabulous feeling to have our very own place now! Bren & Nan are the monitors, so they'll keep it real positive.
Do me a favor and go there, but let me warn you...there's some some pretty weird postings by Peggy, Michael, & lil - - the insomniacs! Actually, we've learned to be "uninhibited" in our creative writings. . . a good thing! And there are also some pretty good poets there, too. We can make it a creative, artistic, let it all hang out room AND still remain positive.
Being positive is the ey to survival, folks! I like to imagine myself as a big, shaggy dog. As I walk along through this life, my fur attracts and picks up trash - stickers, lint, soil, etc. all representative of the "down side" of things. When I get to feeling like this trash is burdening me down, I have to S-H-A-K-E furiously from head to toe and throw off all that unnecessary baggage! Can't you just picture it?
There, I feel much better! Have a "Shakey" day!
I could tell she was crying ... I could tell they were genuine tears... I could feel the compassion, the concern, the challenge.
"Peg, we can't lose any more!" she managed, "We've gotta fight this thing!" The "any more" was the latest victim of the Parkinson's monster . . . Paul Olander - paulguypd.
I couldn't agree more... this "thing" called PD is out of control. In my mind's eye, it creeps like a haunting fog into our lives and sucks the life energy out of our bodies ... and sometimes it does the same to our minds
The tears are real, because it could have been any one of us. And the one whose heart aches is why I feel so strongly about PLWP. Bren, you are so very special. Thank God for friends who watch out for one another, who sense in the tone of the voice or the words typed that something isn’t right. Yesterday, I made a new Parkie sister – Sandy, and tonight I rest well knowing she will be another set of eyes to see … another set of ears to listen … another mouth to say the right words … and another set of hands and feet to help.
Already I start each morning with regular chats with friends I met online and in person less than a year ago. And tonight I open my home and extend my family to Sandy Norris, Ryan Tripp, and John Lester. And my life will never be the same … because this IS the real world … this is the world created in the heart. And my heart aches for the loss of Paul, who just needed another set of eyes to see … another set of ears to listen … another mouth to say the right words … and another set of hands and feet to help. Open your hearts before another one is lost.
Lots has happened recently that made me write this - in keeping with John Lester's "sense of community" in MGH Forums (www.braintalk.org) and PLWP, that he wishes to preserve. Sorry it's so long, but worth "pondering."
From The Velveteen Rabbit: “For a long time he lived in the toy cupboard or on the nursery floor, and no one thought very much about him. He was naturally shy, and being only made of velveteen, some of the more expensive toys quite snubbed him. The mechanical toys were very superior, and looked down upon every one else; they were full of modern ideas, and pretended they were real. . . . . The Rabbit could not claim to be a model of anything, for he didn't know that real rabbits existed; he thought they were all stuffed with sawdust like himself. . .
The Skin Horse had lived longer in the nursery than any of the others. He was so old that his brown coat was bald in patches and showed the seams underneath, and most of the hairs in his tail had been pulled out to string bead necklaces . . .
"What is REAL?" asked the Rabbit one day …. "Does it mean having things that buzz inside you and a stick-out handle?"
"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."
"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
"Does it happen all at once, like being wound up," he asked, "or bit by bit?"
"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby.
But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand." *********************************************** ********************************************** What does this story have to do with my post today? Are cybernet people real? Are they any less real than those people who surround us every day . . . our family?. . . our co-workers?…people in our community? Join me in my quest for “What is real?”
This excerpt causes me to “ponder” the question (may I borrow your word, Bea?). I hear people talk about the “real” world and the “internet” world, as if they are separate entities. They are both very real … in fact, the internet world is powerfully real.
If I receive a telephone call from a bill collector telling me my payment is overdue, do I file it away and say, “It’s OK; it’s not real!” Not only was the person on the line real, but the debt is real, too! Or if I receive a letter, the person on the other end of the return address is as real as you or I. Why should the computer mode of communication be any different?
I receive a lot of email from people I have never met – they know me better than I know them from reading my journal entries. But after correspsonding a time or two, I get to know them . . . and they ARE real! Just as I am real. I would NEVER be ugly to them because I disagreed with something they said. I would be tactfully opinionated, expressing my views. Why do we think the internet gives us permission to be harsh and condescending in our responses to others? The same interpersonal rules apply!
I finally hooked up on ICQ Chat with Jacinta, my newfound friend from Australia. She is a teacher stuggling with advancing PD. We immediately “connected.” We talked about teaching, meds, coping strategies, and last but not least . . . our faith.
“You seem to have a strong faith,” Jacinta typed. Now talk about one-way communication! I was hopeful that my spiritual personality was showing through my journal entries and bouts of mood swings and busyness. And although Jacinta and I come from diverse backgrounds and faiths, I respected her, and vice versa. Jacinta has never been touched by me – I’ve never even heard her voice, but does that make her less real? Her real words of concern, of pain, of questions, and of sincerity make her real.
Just a few days ago, my house was full of people I met as a result of PLWP – only one had I not met previously. Ryan and I had emailed, typed and voice chatted, having met for the first time at the Unity Walk in NYC. I never stopped to ask I he was real – it was a given. I met John in NY, also. But I didn’t “really” know these two guys – for all I knew, they could have been psychopaths! (Seems I’ve heard that word before!) I trusted them because I valued their posts as real – coming from real people.
It was my first time to meet Sandy (of PLWP Parkie Porch), but we had chatted and corresponded. There was never a loss of what to say or do when we all met in person. We now end our chats and emails on a stronger note. “I love you,” Sandy said on the telephone letting me know that she had arrived safely home. And I return the closing, in a real sense of the word.
What makes for a real relationship? It’s not built overnight, for certain. But relationships built over the internet are strong. For we focus on the content of what people say and not how they look. Love makes you real, as our little story so vividly illustrates. Are you treating the person on the other end of your chat as real? … with real problems and needs … and real words to share … from the heart? I hope today’s post reminds us to treat others like we want to be treated … with love. ********************************************************************************************* And while the Boy was asleep, dreaming of the seaside, the little Rabbit lay among the old picture-books in the corner behind the fowl-house, and he felt very lonely. The sack had been left untied, and so by wriggling a bit he was able to get his head through the opening and look out. He was shivering a little, for he had always been used to sleeping in a proper bed, and by this time his coat had worn so thin and threadbare from hugging that it was no longer any protection to him. . . He thought of those long sunlit hours in the garden -- how happy they were -- and a great sadness came over him. He seemed to see them all pass before him, each more beautiful than the other … and … the wonderful day when he first knew that he was Real. He thought of the Skin Horse, so wise and gentle, and all that he had told him. Of what use was it to be loved and lose one's beauty and become Real if it all ended like this? And a tear, a real tear, trickled down his little shabby velvet nose and fell to the ground.
And then a strange thing happened. For where the tear had fallen a flower grew out of the ground, a mysterious flower, not at all like any that grew in the garden. . . It was so beautiful that the little Rabbit forgot to cry, and just lay there watching it. And presently the blossom opened, and out of it there stepped a fairy.
. . . And she came close to the little Rabbit and gathered him up in her arms and kissed him on his velveteen nose that was all damp from crying.
. . . "I am the nursery magic Fairy," she said. "I take care of all the playthings that the children have loved. When they are old and worn out, and the children don't need them any more, then I come and take them away with me and turn them into Real."
"Wasn't I Real before?" asked the little Rabbit.
"You were Real to the Boy," the Fairy said, "because he loved you. Now you shall be Real to every one."
And she held the little Rabbit close in her arms and flew with him into the wood.
Thank you, John, for the inspiration!
It's 11:30 PM. I have at least 1 million things I should be doing, but am drawn to this journal. I am off - major off! Rigidity is bad & typing with one hand - biting lower lip - head quivering.
So why am I here? Stubborn! I try to not take any pills after 7:00 just in case I get a chance to sleep. Sleep? Oh, I faintly recall that! Not much here lately. Thus, begins the vicious circle - no sleep - exacerbated symptoms - crash - sleep deprived for days - more bad symptoms - no sleep. Hate that! I could pop more pills, but there's a pay day!
My ON time, on the other hand, has greatly improved! Driving again - not wearing brace on leg (but may have to occasionally (some pain).
Go back to work? I cannot imagine! Never know how my day will go - least little thing throws me off kilter! Sinus thing, for instance ... swelling in face eyes again. Headaches from you-know-where at times! Throws PD into action - here we go again! I see an ENT man in a week or so - probably give me another pill!
Been doing lots of service projects. I was visiting a friend in the hospital last Sunday when the lady cleaning the room came in to mop. I spoke to her and went back to talking with my friend. In a few minutes this cleaning lady stuck her head in the door & asked to see me before I left. "OK," I said, thinking she might have caught me tramping across that wet floor on my way in! But she had heard me say something about "church" and wanted to know if my church fixed Thanksgiving baskets. She had waited too late to sign up for help. I told her I had "connections" and got her name.
It turned out my "connections" were Ryan, my visitor from Canada, and John Lester, MGH Harvard forums, who was speaking to the local support group. Ryan helped me pick up a basket filled with Thanksgiving foods and I fianlly got a turkey to top it off.
Well, my busy schedule didn't permit delivery until Wednesday on my way to take John Lester to the airport! I had no real good sense of where the lady lived but drove right to her door. John got the huge laundry basket full of food under one arm, and carried the turkey under the other. I sat in the car (it was cold and windy) and watched this man visiting me from Boston all dressed in black with his topcoat flapping in the breeze struggle to the door, knocked, and hand a complete stranger this stuff! The lady looked a mite puzzled, then recognized me, threw up her hand & mouthed "Thank you!"
That experience wasn't enough to make John question my sanity. I then wanted to show him the areas lakes. But I chose the one opposite the airport! It was record cold, but he tromped across the frozen terrain like a trooper, saw it . . . then back into the warm car.
John quietly looked at the clock and tactfully said, "I try to be at the airport an hour ahead of time, to which I justified, "It's a small airport!" We got there 5 minutes prior to boarding time!
But if you've ever read about Job in the Bible, that probably describes John Lester. But Job didn't live with me! At any rate I know I made a lasting impression!
Well, my episodes go on and on, but I met Sany of Parkie's Porch too, and what a big heart! What a great visit!
I must go to bed now - severe rigidity and pain. Tried Vioxx (anti-inflammatory) for a week with great results, but then my blood pressure crept up! Can't wait to trade this body in for a new model! G-nite.
Bea asked us to describe PD in 10 words ... ONLY 10 words! A real challenge for me, but it makes one think before speaking (er... typing!)
Now my 10 words must be translated by the readers without expression on my face, no intonation of my voice, and without any body language. OK - here goes:
PD devours souls, voids control - puzzles geniuses but humbles all.
Deep? I don't think I even understand! But I know it's made my life priorities radically change!
Toad - I like your idea of drawing names to share gifts of "love" for Christmas! And Carol, I'm sitting among the same craft & project supplies! Let's get off our duffs and do something "randomly kind!"
I may have Parkinson's, but I am blessed.
I awakened this morning to warm sunshine glowing in my window - I can see.
I walked (although not well at times) to the kitchen - and drank my juice and coffee.
I downed several pills - all paid for from my copay and my insurance.
I was alone, but went to my computer and talked with cyberfriends - I am blessed.
I visited one of my 3P friends - she has to be fed through a tube. She has been pemanently catheterized - she can no longer walk alone - it took two to move her from one room to another - she cannot write nor talk. I am blessed.
Yet, I am strengthened by the mere fact that she still gets up and is dressed up. She wants her hair fixed - and make-up. She misses my infrequent visits - and she wants to know how I am doing. And she jokingly calls us "big liars" because we say, "You look good!" I am truly blessed.
Re: What really is real? Such thought-provoking posts by Chosh & Jan! Just a comment or two to let you know how I've got to get busy and at least "pretend" that the holidays are upon us! Unless so profound that I cannot contain myself, I'm holding off until after New Year's.
Toad, it was an honor to share billing with you last night on Chy's "Travels with Parkinson's." We had fun and hopefully dispersed some helpful thoughts about beating the holiday blues. Thanks, Chy, for the confidence in us! A taped version will be made available online at MGH forums at a later date.
I'm always available should anyone need to talk, at tnpeg@yahoo.com email or tnpeg on instant messenger - just ask for me as I am often invisible.
Have a Happy Holiday! Pace yourself, eat properly, and watch each other for telltale signs of the "blues" before, during, and after the season. Send your emergency "I Care" messages when you find one of our plwp family sinking!
Our family is trying something new .. no exchanging of presents! Instead we are locating a needy family and helping them (already got it picked out).Should be interesting! Love & Best Wishes! Peggy
I lied ... I found time today to post in my journal. I had said no more posts until after the holidays, but I must - for therapeutic reasons.
In the MGH Braintalk communities, I started a post about "What is Real?" You just have to read the many responses. The URL is below: http://neuro-mancer.mgh.harvard.edu/ubb/Forum107/HTML/003417.html In the event the URL doesn't take, go to www.braintalk.org and click on General/Forum Feedback category. "What is Real?" by pegleg is the thread.
Here was my latest post:
As I drove from the memorial service at the funeral home, there was a brilliant orange reflection in my side mirrow. A second glance revealed one of the most beautiful sunsets the Appalachian Mountains had ever offered. This marked the end of a crisp fall day . . . and it marked the end of a young man's life.
The call must have come to the parents early that morning. Their 23-year-old son had been living about 4 hours away, but had dropped out of school. Life had not been worth living any longer. There were no real warning signs. But there's that question again, "What is real?"
Real is holding my friend and mother to this young man as she sobs incessantly in between questions of "Why?" Real is hearing his two sisters tell of all their memories at his eulogy. Real is seeing the pain in this boy's father's eyes.
Someone has already said it here - "Real" is different things to different people - it truly is "perception." But with such diversity, how do all these "real" people form a community? That's where John comes in - our moderator.
There must be parameters - "anything goes" is too liberal - even at the sake of stymying creativity. There must be respect - we must look to the creator of these forums and respect him for allowing them to even be in existence. This is not John's only responsibility with MGH or Harvard! And there must be sensitivity - and John is full of that. Why else would he labor long, hard hours to see these forums (now communities) thrive?
"Real," like "Beauty" is in the eye of the beholder. Beholders . . . you are real to me until you cause me to think otherwise - i.e. when you step outside of the established parameters, or fail to be sensitive or respectful. Then you become isolated.
This thread could go on to infinity. . . and everyone who has posted here has said something of value. I don't have to agree with it all. I just have to try to understand where you are coming from . . . like the family of the 23 year old, who try to understand at what point reality became shattered for their son and brother. And was his reality shattered because someone stepped beyond the parameters and failed to be accepting o diversity? God bless each of you ... Really!
Peggy
Well, I just cannot stay away! I haven’t wrapped my first gift, there aren’t many to buy – we’re helping a needy family instead, and I just can’t seem to locate my Christmas spirit. I’m sure it’s packed away somewhere here.
I’m beginning to wonder if I’m manic depressive. Yesterday I had a splurge of energy that had everyone asking what I was on????!!!! Then a half hour later, I was “off” for the most part of the evening! And when I’m “off,” my mood is off, too. Not wise to post when you’re like that, so I took a pill and went to bed.
Now I know taking another pill is not the best policy, but I tried other techniques. You see, my hubby snores – no , snorts – at a sound of about 13 decibels! I jab him with a left elbow hook, only to have him squeal out “OH!” in his sleep and nearly kill me when he turns over. I may get, let’s say, 10 minutes of peace (if that long) and he starts snoring again. Anyway, I got a few hours of shut-eye, but feel like I’m “running on empty.”
Let’s see what I’ve been up to lately. I’ve been to a couple of Christmas programs. They’re all alike . . . start out jovial and upbeat, and end solemn and make me cry. I hope that’s the effect they want, because lots of other folks’ expressions appear similar.
Have I told you much about Elijah? My husband has nicknamed him “Little Criminal,” because he’s been in and out of juvenile detention centers since he was in about 5th grade. We met when he was a student in my school. You might say that we’ve grown up together. But God keeps putting Elijah on my doorstep, and I keep trying to change his behavior.
Elijah dropped out of school – not because he’s incapable of finishing academically, but emotionally. He can be in a crowd for 6 hours, and he gets into trouble. He’s very impulsive and has this incredible sense of “fairness.” He cannot understand why I’m sick – “It’s just not fair” he says. I tend to agree, but explain to him that it’s to make me stronger. Well, in his mind that theory doesn’t hold water! We’ll not go to his theory just yet!
Anyway, I’ve been helping Elijah study for his GED. We’re not getting a lot done, because he’s been job hunting and trying to fit in his new world. We landed on Wendy’s after I hauled his hiney (and his grandmother) back and forth at least 50 times. I didn’t think they’d ever hire him, as he got mad and walked out about 6 months ago. But as Elijah says, “They’ll hire anybody!” Must be true because he’s worked two days!
When Elijah got in the car, he was inordinately quiet. “Don’t you feel well?” I asked. It seems he laid out of work yesterday for “not feeling well.” Oh boy! Wrong thing to say to a menopausal woman with PD who’s taken her last ounces of energy to help a kid get a job! I lit into him like a duck on a Junebug! And you know what? He listened! After I had chewed him up and spit him out, he called Wendy’s (of course AFTER he thought up a good story)! I don’t know if they’ll keep him or not. So a lot of my time has been spent with a nearly 17-year-old kid who has absolutely no direction in life. He was getting involved in church when somebody speaking one evening indicated that “blacks” were inferior to “whites.” He cussed them all out and . . . well . . . let’s say he’s not going back to that church again! Remember, he has a keen sense of fairness. Elijah finally confessed to me that he was having a difficult time transitioning to his new lifestyle. I started thinking about that. This kid has been in a detention center for the past 7 years at Christmas! I guess life is moving a little too fast for him.
I (like a nut) signed up to help wrap packages at the Mall for a children’s advocacy program. For nearly 2 hours I wrapped away and created some beautiful packages that even Santa’s elves would envy. Then the left side went “dead.” Elijah and I ate some pizza and hung around the Mall until my meds kicked in enough to drive home. He doesn’t have his license yet, but we may rely on him getting me back home someday soon.
Then between Elijah and church activities, the three P’s get together when possible. It’s getting more and more difficult. Pat E., Pat M. and me, Peggy – we can’t seem to all be feeling well at the same time. It makes it difficult to drive when you’re having major tremors like Pat E., or you’re so “off” like I get that you can’t steer! But we accomplished a miracle two nights ago.
The Three P’s managed to get together WITH our three husbands for a barbeque rib cookout! We all went to Pat E’s lovely home. The plan was to meet at 6:00 PM. We started to go to Pat M’s, since she’s got a feeding tube and a permanent catheter, but knew her husband would fuss too much with the house. Anyway, a change of scenery would be good for Pat M.
Six 0-clock came and no sign of Pat M. At 15 till 7:00 I called. I could tell her husband was very upset, but he said they’d be there soon. They finally arrived and what a surprise! Pat M. was all decked out in a beautiful red Christmas outfit, complete with a gold top and all the accessories! And she walked – yes walked – into the house! (It took somebody on each side, but it was walking!).
We sat down to eat close to 8:00 PM, and Pat M. even chewed around on some food. It was delicious, but the conversation was strained. The talk migrated to our kids and how they were fairing in the world. Pat M. is the only one with grandkids – the other Pat and I are about to give up hope. Funny, Pat E. and I both have three kids – no grandchildren; and Pat M. has one kid and 3 grandkids! Talk about unfair!
We watched Chevy Chase in “Christmas Vacation” and had some good laughs. Pat M. made it until nearly 10:00, then started getting anxious. On the way home, Darrell confessed, “I don’t need to see stuff like that.” Thinking he meant the movie, I was a bit puzzled. He meant Pat M’s condition! Well, welcome to reality!
My hope is that the surgery I had will delay the progression of my disease, and in a sense, it already has. I’m back to doing more than I’ve done last Christmas. But it’s an uphill battle all the way with Parkinson’s. But I’m telling you, denying it ain’t so just doesn’t get you anywhere!
I liked Darrell (the journaler here) and his conversation with himself and Mr. Parkinson’s. You just gotta look that sucker square in the face and let him know who’s in charge. (Most of the time, Mr. Parkinson’s is in charge, but NEVER let him know that!) Happy Holidays! I get awfully windy, don’t I?
Lifelines are what this world is all about. God created it that way. It’s not His fault when we don’t utilize them the way He intended. God never promised us a rose garden – He’s had trouble with rebellious people since He created them. Yet, He chooses to give us “free will,” to do as we please and not to be little robots that move at His command.
God is the creator – whether or not you believe in the “Big Bang” theory or not - He made the world and balanced nature and just performed perfection. Yet, when He gave man free will, He also opened the world to imperfection. We are living the hell of imperfection now. Maybe that is hell – to stay on this planet?
I usually have a calm peace about me. Nothing seems to bother me – nothing seems to shock me. But today, I compete against the hormonal imbalance of a 50-year-old woman, the aftershock of having a hole drilled in my head, and the sadness I see around me. And I try to take on the world’s problems. I am at the point where I want to cry out, “No More, God!” And He listens with a calm patience.
“No More!” to progression as my friend slowly edges on death from advancing Parkinson’s Plus – “No More!” to Bobby and his 7-year old daughter as they face the splitting up of his marriage and see possessions they worked for divided and lost due to financial difficulties – “No More!” to so many having financial troubles due to inability to work or no money for meds or whatever - “No More!” to my 16-year-old challenge, Elijah, who confessed to me that life it too hard “on the outside” of state custody – “No More!” to a good friend who’s hard knocks began at birth and now faces yet another DBS surgery – “No More!” to a Parkie friend who battles breast cancer, “No More!” to people like Sandy who’s been at this game since age 20 –“No More!” to those of us like Mischef, Puff, Pwnkle and so many others who are willing to sacrifice ourselves in the name of finding a cure, and “No More!” to the emotional trauma of this disease that we each face daily!
And now, they say that research funding for the NIH (National Institute of Health) will remain at the same level as last year. It’s time to say “No More!” again! (Gosh, I sound like that guy from DC last year!). My point is this, we can’t bicker about who said what or what so and so did or didn't do . . . we must use what God has given us as gifts and use it to make this a better place to exist. It’s all about lifelines.
Has anybody tugged at your lifeline lately? Or are you keeping your lines all neatly tied up in a little ball tucked away to save for yourself? We should all look like the spokes of a bicycle wheel – radiating out and connecting to those who call upon us. God likes that. Oh, He could swoop down and eradicate PD in a heartbeat, but will we have learned the feeling of sacrificial love? Will we have grown in commitment and understanding of what it was like for Him to give up His Son?
It’s all about lifelines. He’s not cut any lifeline to us – we’re the ones with the scissors. He pours renewed strength and love into me every second of the day . . . even when I curl up on the bed in extreme pain from rigidity and weep for sleep to ease the pain. That’s when the phonecall comes . . . or the creative idea in my head . . . or the inner peace through a prayer.
This life is temporary – for that I am thankful. It’s all about lifelines . . . don’t cut the strongest connection that you have. And He listens with calm patience and throws out yet another line.
Christmas Eve. And today, I hold back nothing. This morning I attended church. At noon the family gathered for a meal. Pictures were taken, but they'll never know. It's 7:00 PM now. My husband left to let me "rest." He knows. The pain I feel in my back must be what it feels like to be stabbed - and it won't let up. I hurt in my neck, my hands feel like lead. My head feels so swollen, and there must be someone standing on my chest. I know too well who it is . . . Mr. Depression.
The mood swings are a dead giveaway. I put on my facade and smile in public . . . but in pivate I weep. I put on soothing music, and I play my harp. I try to paint. I try to rest, but Mr. Depression is there . . . waiting for me to succumb. And I do.
I come here to release the tension. It will help ease the pain. Yes, it's really me. Have you been there?
Well, I guess some people really do read this journal. Keli, a friend of my 24-yr-old Amy, was the first to call. I was in bed & didn't talk, but she didn't let a few thousand miles stop her (she lives in California). Keli left an email that brought me to tears. I did get up to see my little 5-yr-old cousin from Oklahoma - he rarely gets in. They could tell I had been weepy, but not a word was said. Then Chosh tried to call - sorry, but you know why I couldn't talk. Other messages were left by my PLWP family. Thanks, and I'll make it.
I'm in as much pain, but must get my act together. My kids and spouses will be here in about 1 1/2 hours. Darrell was so good to help clean up - he mopped, ran the vacuum, and washed dishes. I slept for 3 hrs. with a sleeping pill. It has to be hormonal - there goes that hot flushing again.
I love you each so much. I opened the PLWP virtual card just moment ago; it had a snow globe with the little cabin enclosed where the dream began. I read the holiday wishes of those who share the dream . . . and it can't come soon enough.
OK - she's back! That means it wasn't "depression" right? DEPRESSION is defined as "at least four of the following every day for at least four weeks: 1) poor appetite or significant weight loss; or increased weight gain 2)Insomnia or hypersomnia 3) Psychomotor agitation or retardation 4) Loss of interest or pleasure in usual activities 5) Loss of energy or fatigue 6) Feelings of worthliness, self reproach, or excessive or inappropriate guilt 7) Complaints of or diminished ability to think or concentrate and 8) Recurrent thoughts of death, suicidal ideation, wish to be dead, or attempted suicide.")
HA! Fat chance! I've had 1) increased weight gain (I eat to console myself!) 2) insomnia 3) fatigue 4) diminished ability to think or concentrate (sporadic) and one more! Soooo, it IS depression! It's just manifested in radical mood swings! You put that together with excruciating pain, and you might have someone a mite dangerous to doing bodily harm to self or someone else!
Speaking of bodily harm to someone else, I've considered taking the dog out! Seriously! We've had sweet Festus for going on 10 years now. He's the same old faithful pug he was years ago. The other day, I had picked the last dog hairs off my dark clothing and furniture! I considered starving him or putting something in his food! (Watch out family members! lol) That's not normal behavior, folks! Then I thought about how I might be perceived if a cure is not found soon. I might be bedfast, need to have my tail wiped, diaper changed, be fed, be bathed, etc. Would I want you to take me out? Maybe! But I want to be able to make that decision - not someone else!
I'm probably going to be committed after the right person reads this entry! But before I go, let me sing my accolades to my husband, Darrell. I was talking with Bren about spouses the other day. She said, "I'd rather be us than them." At first I didn't agree . . . but on second thought, I'll have to agree.
Spouses (carepartners) have to make a choice. We don't have a choice. We have PD, and there is no cure . . . yet. That's the bottom line. Every day we get closer to the end (and I guess that's true for every day - PD or not!). But the carepartner doesn't have to stick around. Many have already thrown in the towel and have left. I'd love to see some accurate stats on the number of divorces AFTER the PD diagnosis. It's got to be very difficult for the spouse!
We were having our traditional Christmas brunch at the house - just immediate family. There were no gifts this year, because we chose to help a needy family instead. And there were many from which to choose. I bought lots of convenience foods (frozen biscuits, mixes, etc.) to cut down on preparation energy to be expended. Well, even that takes some doing. But good ole Darrell vacuumed, mopped, washed dishes, and did all the cooking - and he cleaned up, too!
Now, you're probably saying, "WAY TO GO, PEG!" But I wanted to do it - really! I just was so in pain and so slow - and didn't care if it got done or not. THANK YOU, Darrell, for putting up with my cross, my vascillating biting attitude, and for pulling it off! Thank you for giving me space to sort out my mood! Thank you for focusing on the task at hand and pitching in and helping! But most of all, THANK YOU for not giving up on me!
It's so easy to walk away. It's so easy to say "You're not worth it!" But actions speak louder than any words . . . he cares. He may not do everything I want him to do, but neither do I. I don't even know what I want at times. But this one thing I do know - I want to beat this thing. I want a better, PD-free future for those who follow me. And I want to fight this thing with my husband by my side. I can't expect him to understand me - at times I don't even understand myself! But I understand that he loves me - I understand that he has been justified in leaving a long time ago when the "going got rough." But I now understand that he's not going anywhere . . . or he would have already been gone! You were right, Bren, it IS harder for the spouse.
Thank you, Darrell . . . I love you nearly 33 years after we said "I do." And "I STILL do!"
Morning! (Or is it "mourning?") Nah - I'm feeling pretty good today. You see, I'm up because we're supposed to go visit pwnkle and pattiz in Kentucky for New Year's Eve. But, alas, Mother Nature may prevent this much anticipated venture!
You can tell when it's going to be one of those on-again off-again days! first, I went to sleep "naturally" with no sleeping pill last night. Then, as I snuggled against Darrell on my warm flannel sheets, he began to snor. Not just snore, but SNORE!!! Yes, he rattles the windows! This was about 1:00 AM. I tried to get away from his bearhug clutches, but those darned flannel sheets had me stuck like Supper Glue!
I finally managed to break loose, shuffled to the kitchen, fixed a bowl of sherbert and puttered back to the computer room. And who was online, but my old roomie, Janemartha! I tried to type with one hand (that was all that was working), and we had a pretty good conversation. She confessed that she had just eaten a bagel with cream cheese! lol Then I dropped Rainbow Sherbert all down the front of my pj's! Drat!
After posting here and there, I decided that I had to get some sleep. So at 4:00 AM, I took half a sleeping pill (Ambien). I woke up promptly at 6:55 AM! But I felt good! Very slow, but not in pain. That is, until I got dressed and turned my panty liner glue side up - OUCH! lol
Then I tried to chat with several - nobody home (or nobody up yet). I made myself "visible" which I generally don't do. Janemartha comes on around 8:00 and says, "Peg - is anything wrong? You're visible!" Ha - "No," I told her, "But nobody's talking to me!" lol
Then I catch my friend Pat online. She's just learning about how much help online support can be. I tried to teach her how to use voicechat, but she couldn't find her headset. We managed pretty well, and she even posted at MGH forums. She's a wealth of experience and information on alternative therapies. I'm the exact opposite. But I'm listening to her more lately. She's had PD 14 years and still does pretty well!
Just as the warm sun rays beamed in on my keyboard, the dopamine level plummeted. There I was back to the PDPP (PD Pitiful Person), in great pain, all bent over like a 90-year-old, unable to type, and biting into my lower lip with a locked jaw! I hate that on/off thing!
I took my Sinemet & Comtan a little early (30 minutes early), knowing that I was supposed to go to lunch with friends today. And here I am! Typing away in an effort to let others know that you CAN bounce back. But watch that deflexion - you never know which direction you'll be bouncing next! I recall this constant from Science 101, "For every action, there's an equal and opposite reaction." How true, how true!
Please don't let it snow my trip out! Peggy
Don't give up on me! Now I have hormones! My gynecologist called last night. There must have been a note of desperation in my voice as he was handing my husband samples of the new hormone patch at 9:00 PM! He also mentioned that some people think they are going "crazy." Duh! At any rate, let's hope for results in the next few weeks!
In NE Tennessee, we're covered with a 2" dusting of beautiful, powdery snow. I watched as a brillant red cardinal lit outside the window, stark in contrast against the snow. His mission today? . . . to find food and shelter. I have those things - hey, I even have power! lol We take so much for granted.
My gynecologist has a 4-year old recuperating from neuroblastoma, a terminal type cancer. The entire family lost over a year of their life in fighting this horrible disease with chemo, trips to St. Jude, a radical cut-back in his practice, etc. Last night, the good doctor told me they thought the cancer might be recurring. We take so much for granted.
A friend of mine contacted me about finding info and resources on post-polio syndrome. She experiences a lot of pain, fatigue, and misunderstandings. (Hmmm - sounds familiar!). I did a computer search and found no support groups nearby. There were some on-line support groups, but nothing to compare to the PD community. We take so much for granted.
As the snow continues to fall, it blankets out the ugly remains of dead weed, and muffles the noise of a busy day. It gently reminds me that we have so much to be thankful for - God bless today!
I hope it doesn't blanket out our trip to KY!
Mirror: Well, you’ve come a long way in a year!
Peg: Yeah, I guess so.
Mirror: Who’s that with you out there?
Peg: Oh, I’m at Ron & Patti’s in KY for New Year’s! We’ll be staying at Carl & Pwnkle’s later tonight.
Mirror: “We?”
Peg: Yeah, my husband Darrell & I – he’s come a long way, too!
Mirror: We’re not talking miles when we say “come a long way.” Are we?
Peg: Not! It was about a year ago that I stumbled upon the MGH forums, now called Braintalk Communities.
Mirror: And then PLWP?
Peg: Yes – I started journaling online at their site in May, 2000.
Mirror: A lot has happened since then, huh?
Peg: Simply unbelievable! I met one of the founders of PLWP first, Bren. She lives about 100 miles from me and invited me over. While there, I met Joan Snyder and her family. Joan’s an author now – she coauthors VOICES FROM THE PARKING LOT.
Mirror: Online Support has kinda redirected your life, huh?
Peg: Kinda? Totally! I have changed my entire focus! You see, when I first had to take disability retirement, I became so depressed. I had no idea how God could use me.
Mirror: I know! Your job as a principal meant a lot to you.
Peg: I thought it was where God wanted me. I got pretty angry with him at first, until I realized that the school setting was just my preparing field. Since then, I’ve met so many people associated with having Parkinson’s: Bren & Gary have been to my house, Ron & Patti, Pwnkle (Carol), Janemartha and two of her kids, Tena & Keith . . . and just recently Ryan, Sandy, and John Lester – the Administrator of MGH’s neorology forums!
Mirror: Wow! All those people you met face-to-face as result of posting online?
Peg: Oh my, yes! I visited Patti’s last summer and met her family & pwnkle’s, Charlie from California, and Chosh & husband Chris from Canada!
Mirror: Who is that lady there now that looks like you?
Peg: Oh, that’s Chris (chosh) from Canada. Amazing how we favor each other!
Mirror: So you drove over 300 miles to spend New Year’s Eve with people you met online?
Peg: Well, yes; but we stopped near Lexington to see my uncle. He has terminal lung cancer … very sad.
Mirror: Is that why you seem down? Hey, where’d you go?
Peg: Down here – on the dining room floor! The others went to the hot tub. I’m major “Off” now!
Mirror: Hmmm … wonder what’s going on with you?
Peg: Not sure, but may have something to do with my hormones – or lack of!
Mirror: Or your depression?
Peg: Could be – but I’m not “major” depressed!
Mirror: Peg, ANY depression is major with Parkinson’s. Who was that on the phone earlier?
Peg: Oh, the neatest thing! That was Chy with “Travels with Parkinson’s” radio show. He wanted this group’s comments of being together to be the program for Sunday night. It was really neat!
Mirror: My! You’ve really gotten public with this PD thing, huh?
Peggy: You bet! I’ve got a focus now! I went to the first Parkinson’s Action Network and Michael J. Fox Foundation merger in June in Washington, D.C. I met lots of folks there, the other PLWP founder, Nan (TLC), Lil, , Morton Kondrake and wife, Milly, Jim Cordy, aj & Greg – and one in particular was Michael J. Fox himself!
Mirror: Wow! Nice guy?
Peg: You bet! Very sincere and sensitive! Spent his evening getting around to talking with everyone. Oh, he knew me from my posts at MGH! “Pegleg” was familiar to him. Chatted with him and didn’t even know!
Mirror: Just goes to show you, you never know who’s reading what you write! Didn’t you go somewhere in September?
Peg: Oh yeah, that was the Unity Walk in New York City. Now that was something else! And PLWP hosted a Roast for John Lester. That’s where I first met him face-to-face. My daughter, Renee, went with me. You know, I had experimental surgery just in August. We hung out with Toad and Nanny. I met Mischef, Bea, Sue_bee, WeCan, Puff, Tambra, Donna,Jjane & husband, Dale, Nancy, Sunshine, the rest of Janemartha’s family, Chy & Elaine,. . . I can’t even remember all those names!
Mirror: Wasn’t there a traumatic opening night?
Peg: Oh yes. A young lady in her 30’s, Paige Bremer, originator of website called “Park Place” had committed suicide! Her roommates, Stephanie and Patty, weren’t even aware until the announcement was made!
Mirror: PD’s depression at any level is not to be taken lightly!
Peg: So true – so true! Several at the site have had the downers this holiday season. I think it’s triggered by the fact that there’s so much going on at Christmas, and our bodies just can’t deliver.
Mirror: And just a chemical imbalance – it’s not always something you can control.
Peg: True, but if you’ve not gone completely off the deep end, your attitude can really help! Toad initiated this incredible “Lovebug” program and we are to “bug” a person all through the holidays – keeping track of him or her and sending uplifting notes. My lovebug to bug was Charles Harris from Texas – nice guy! Mine was Rebecca Dillenhunt. It’s been great!
Mirror: Oh yes! Toad goes to the neuro today to see about more brain surgery, doesn’t he?
Peg: Oh, thanks for reminding me! Puff has bilateral DBS Jan. 15.
Mirror: Boy, people are pretty desperate to get holes drilled in their heads!
Peg: Just live in a PD body for 6 months and you would do the same!
Mirror: I believe you. Peg, do me a favor.
Peg: I’ll try – what?
Mirror: Be good to yourself. If you aren’t, you remove yourself from this “mission” you are on. The mission is that of helping others get through life with PD and to help find a cure.
Peg: You’re always right, Mirror! I’ll work on that!
Mirror: And get that book finished!
Peg: Been thinking about that! That would mean less online time.
Mirror: Sacrifice where you can. What was that flash I saw of a painting at Carol’s?
Peg: Wasn’t that too cool? Pwnkle is starting a new painting – it immediately reminded me of people and their “realness.” Then the more I thought about it, I kept seeing Friendship in that painting. She’s so very talented!
Mirror: Yes, she is. And you like her?
Peg: No . . . I love her! She’s the type you can always get an honest answer from – I like that in her.
Mirror: I think she must love you, too. Well, you look very tired.
Peg: Was that a hint? I need to make some New Year’s Resolutions – the tops one to get in better physical shape!
Mirror: Yes. And don’t spend all your time on the internet! Meet people around you!
Peg: Oh, that reminds me! I met Dr. David Vaughn, a Methodist minister who is now a member of my local support group. And I met Bobby and his little girl Cassie, who really needed a friend – all through the internet!
Mirror: Imagine that! You think God had anything to do with putting those people in your path?
Peg: Something tells me the answer is , “Yes!.”
Mirror: Well, you’ve come a long way in a year!
Peg: Yeah, I guess so.
Mirror: Who’s that with you out there?
Peg: Oh, I’m at Ron & Patti’s in KY for New Year’s! We’ll be staying at Carl & Pwnkle’s later tonight.
Mirror: “We?”
Peg: Yeah, my husband Darrell & I – he’s come a long way, too!
Mirror: We’re not talking miles when we say “come a long way.” Are we?
Peg: Not! It was about a year ago that I stumbled upon the MGH forums, now called Braintalk Communities.
Mirror: And then PLWP?
Peg: Yes – I started journaling online at their site in May, 2000.
Mirror: A lot has happened since then, huh?
Peg: Simply unbelievable! I met one of the founders of PLWP first, Bren. She lives about 100 miles from me and invited me over. While there, I met Joan Snyder and her family. Joan’s an author now – she coauthors VOICES FROM THE PARKING LOT.
Mirror: Online Support has kinda redirected your life, huh?
Peg: Kinda? Totally! I have changed my entire focus! You see, when I first had to take disability retirement, I became so depressed. I had no idea how God could use me.
Mirror: I know! Your job as a principal meant a lot to you.
Peg: I thought it was where God wanted me. I got pretty angry with him at first, until I realized that the school setting was just my preparing field. Since then, I’ve met so many people associated with having Parkinson’s: Bren & Gary have been to my house, Ron & Patti, Pwnkle (Carol), Janemartha and two of her kids, Tena & Keith . . . and just recently Ryan, Sandy, and John Lester – the Administrator of MGH’s neorology forums!
Mirror: Wow! All those people you met face-to-face as result of posting online?
Peg: Oh my, yes! I visited Patti’s last summer and met her family & pwnkle’s, Charlie from California, and Chosh & husband Chris from Canada!
Mirror: Who is that lady there now that looks like you?
Peg: Oh, that’s Chris (chosh) from Canada. Amazing how we favor each other!
Mirror: So you drove over 300 miles to spend New Year’s Eve with people you met online?
Peg: Well, yes; but we stopped near Lexington to see my uncle. He has terminal lung cancer … very sad.
Mirror: Is that why you seem down? Hey, where’d you go?
Peg: Down here – on the dining room floor! The others went to the hot tub. I’m major “Off” now!
Mirror: Hmmm … wonder what’s going on with you?
Peg: Not sure, but may have something to do with my hormones – or lack of!
Mirror: Or your depression?
Peg: Could be – but I’m not “major” depressed!
Mirror: Peg, ANY depression is major with Parkinson’s. Who was that on the phone earlier?
Peg: Oh, the neatest thing! That was Chy with “Travels with Parkinson’s” radio show. He wanted this group’s comments of being together to be the program for Sunday night. It was really neat!
Mirror: My! You’ve really gotten public with this PD thing, huh?
Peggy: You bet! I’ve got a focus now! I went to the first Parkinson’s Action Network and Michael J. Fox Foundation merger in June in Washington, D.C. I met lots of folks there, the other PLWP founder, Nan (TLC), Lil, , Morton Kondrake and wife, Milly, Jim Cordy, aj & Greg – and one in particular was Michael J. Fox himself!
Mirror: Wow! Nice guy?
Peg: You bet! Very sincere and sensitive! Spent his evening getting around to talking with everyone. Oh, he knew me from my posts at MGH! “Pegleg” was familiar to him. Chatted with him and didn’t even know!
Mirror: Just goes to show you, you never know who’s reading what you write! Didn’t you go somewhere in September?
Peg: Oh yeah, that was the Unity Walk in New York City. Now that was something else! And PLWP hosted a Roast for John Lester. That’s where I first met him face-to-face. My daughter, Renee, went with me. You know, I had experimental surgery just in August. We hung out with Toad and Nanny. I met Mischef, Bea, Sue_bee, WeCan, Puff, Tambra, Donna,Jjane & husband, Dale, Nancy, Sunshine, the rest of Janemartha’s family, Chy & Elaine,. . . I can’t even remember all those names!
Mirror: Wasn’t there a traumatic opening night?
Peg: Oh yes. A young lady in her 30’s, Paige Bremer, originator of website called “Park Place” had committed suicide! Her roommates, Stephanie and Patty, weren’t even aware until the announcement was made!
Mirror: PD’s depression at any level is not to be taken lightly!
Peg: So true – so true! Several at the site have had the downers this holiday season. I think it’s triggered by the fact that there’s so much going on at Christmas, and our bodies just can’t deliver.
Mirror: And just a chemical imbalance – it’s not always something you can control.
Peg: True, but if you’ve not gone completely off the deep end, your attitude can really help! Toad initiated this incredible “Lovebug” program and we are to “bug” a person all through the holidays – keeping track of him or her and sending uplifting notes. My lovebug to bug was Charles Harris from Texas – nice guy! Mine was Rebecca Dillenhunt. It’s been great!
Mirror: Oh yes! Toad goes to the neuro today to see about more brain surgery, doesn’t he?
Peg: Oh, thanks for reminding me! Puff has bilateral DBS Jan. 15.
Mirror: Boy, people are pretty desperate to get holes drilled in their heads!
Peg: Just live in a PD body for 6 months and you would do the same!
Mirror: I believe you. Peg, do me a favor.
Peg: I’ll try – what?
Mirror: Be good to yourself. If you aren’t, you remove yourself from this “mission” you are on. The mission is that of helping others get through life with PD and to help find a cure.
Peg: You’re always right, Mirror! I’ll work on that!
Mirror: And get that book finished!
Peg: Been thinking about that! That would mean less online time.
Mirror: Sacrifice where you can. What was that flash I saw of a painting at Carol’s?
Peg: Wasn’t that too cool? Pwnkle is starting a new painting – it immediately reminded me of people and their “realness.” Then the more I thought about it, I kept seeing Friendship in that painting. She’s so very talented!
Mirror: Yes, she is. And you like her?
Peg: No . . . I love her! She’s the type you can always get an honest answer from – I like that in her.
Mirror: I think she must love you, too. Well, you look very tired.
Peg: Was that a hint? I need to make some New Year’s Resolutions – the tops one to get in better physical shape!
Mirror: Yes. And don’t spend all your time on the internet! Meet people around you!
Peg: Oh, that reminds me! I met Dr. David Vaughn, a Methodist minister who is now a member of my local support group. And I met Bobby and his little girl Cassie, who really needed a friend – all through the internet!
Mirror: Imagine that! You think God had anything to do with putting those people in your path?
Peg: Something tells me the answer is , “Yes!.”
No double posts today, I hope! I just received this short article in my email:
Longing for Friendship, by Paul Faulkner
I just read that a professor of psychology at Loyola University said, "People need someone to whom they can tell thestory of their lives."
And all of us have a story, and all of us have a profound longing for friendship -- a poignant searching for the kinds of things that only a lasting relationship can bring. People desire that kind of connection that makes their lives significant to someone else.
But I've found sadly that often people don't know how to make friends because they are afraid to risk themselves to another person. If you fear opening up to someone else, remember that others are just as eager to tell their story as you are. As the old gospel song says, "Sharing our mutual woes." And that turns sharing into mutual riches through friendship.
God bless your efforts to risk yourself to others, and to Christ. --------- (c) 1998, Paul Faulkner.
These words rung so true as I chatted with Toad this morning. Had he not shared his story with PLWP, I would have missed an opportunity to meet a great guy who inspires me immensely! And his wife, Nanny, is just as precious.
Toad will need to be "bugged" over the next few months. His fantastic idea about the Lovebug program kept me afloat during the holidays. Now one good deed deserves another.
Toad has surgery Jan. 15 to remove his existing stimulator to allow an infection to clear up for 3 months. At the same time, he will have a DBS (probably STN) that will alleviate his bradykinesia, balance, and rigidity (NOT eliminate - just help it).
But for 3 months, until another stimulator can be inserted to control his tremors, Toad will be in "Tremor Hell." He has one of the most violent tremors I have witnessed. He will be unable to feed himself or take care of daily hygenic tasks!
For this reason, I want us to "bug" him - shower him with support and love that he has so freely "risked" with each of us. He also won't be able to write very much, so don't wait to see how he is.
We have so many down right now - Kathleen - Michael - Tim - and others of which I am unaware. If you know someone is down, BUG HIM or HER! That's what PLWP is all about!
God Bless!
I sit here with eyes half-filled with tears. They're half-filled because I just finished reading Tim's journal (1/4/01). Now I'm angry!
Tim and his family are being preyed upon by a money-loving vulture! He's being coerced by a builder who wants to buy his house for less than market value and move the family somewhere they don't want to go! Grrrrr! How much more can we take?
People who prey upon those with disabilities should be strung up and hanged in public! (Ok, God! I'll leave judgment to you! But in the meantime ... ). In light of all the financial struggles I see among our PLWP family, there must be something we can do!
I watched once as a child at this same thing happen to Granny February. She was a sweet little old lady who lived on Broad St., now "fast food" lane in my hometown. "Granny," as many of us called her, always opened her home to the neighborhood kids for warm cookies, cold milk, and lots of stories that captured the essence of how she grew up. It became a weekly venture to visit her and listen in wide-eyed anticipation to her tales!
As the neighborhood kids grew, so did the town; and soon Granny's house became surrounded by pavement and fast-food restaurants. Granny was approached, I'm sure, with a dangled carrot of a big pricetag for her shingle-covered house that was in great disrepair. But this was home to Granny . . . an apartment wouldn't allow her to grow hollyhocks in her back yard, or let her sit on her front porch and watch the bustle of city life grow.
And Granny stood firm! She had memories in this place that a move could not pack. Granny raised her own children here, lost her husband while living here, and now was ministering to a bunch of kids who just needed her attention as much as she needed theirs. She did no want to move.
As I grew older, married, and raised my own family - I thought less and less about Granny. I settled in the same town, but my need for warm cookies and companionship were replaced by busy schedules of work, raising 3 kids, and keeping my own house maintained. But I was reminded while going through the drive-thru of an adjoining fast-food place that Granny's stand might not have much strength left.
Granny had a heart attack. She was still able to live alone (did she have a choice?), but in everyone else's eyes, needed to be in a nursing home "where others could care for her." But Granny stood firm.
I watched as the parking lots encroached upon Granny's tiny back yard. I watched as I saw less and less of her presence on the front porch. And I did nothing when I learned that her property was condemned, and the "City" converted it to another fast-food business.
I was too involved in my own affairs to fight for Granny. And I doubt I would have won. But, what about all those generations of kids she fed cookies and shared stories with? What about all those who loved hollyhock blossoms? But I’m not going to let Tim and his family go down without a fight!
Then I read how Bea is struggling with being a full-time Parkie instead of a teacher. And Chosh has all this time to think and wish she were 49 again! Then I see how PD has made Michael a fighter in spite of turmoil - and Kathleen too weak to journal.
I get angry! Then Darrell's sweet spirit and words of concern for others, Toad's warped sense of humor and facing two more surgeries, Nanny's devotion to him, and ... and ... I'm not angry anymore. I'm amazed - at how any one of us survives in such adversities. It has to be a higher force that gives us strength - and he uses our "togetherness" here to make us even stronger! Now I see how Granny must felt. Hollyhocks, anyone?
(This entry was half written on 1/9/01, but down time from this PD body didn't llo me completion until later)
I was up very late - and just crawled out of bed this morning. I had a good day yesterday - visited my poor friend Pat M., who sits where she's placed every day and "enjoys" a feeding tube and permanent catheter.
I spent the good part of last night talking with Michael online. I highly respect his strong faith in the Lord. We got on the subject of stem cell research. He would not tell me how he believed, but asked me several pointed questions: Who's my brother? Who's my father? and so forth - indicating my heavenly family, not this earthly one.
His motive for this line of questioning came as a result of my request for him to review a comment I made about stem cell research in MGH forums. I never want to step on toes. Michael told me my comment indicated that I wasn't sure how I felt . . . true!
He questioned me more, then I asked if he "knew" how he felt about the issue. His reply was "absolutely!" He emailed his stand as it was wordy. I didn't read it until this morning.
Also this morning, Joan Snyder sent me an online video entitled, "A Father's Loveletter." The only English word to describe it is AWESOME! And that doesn't do it justice! As I watched it over and over through tear-filled eyes, I suddenly had revealed to me how I stand on the stem cell issue. Then I opened Michael's email, and my stand was confirmed!
Immediately, I wrote Michael and asked if he had asked Joan to send the video. I thanked Joan for sharing it. Michael nor Joan have never met nor talked. God reveals Himself in strange ways!
How do I stand on the issue? As Michael would say, "Ask me and I'll tell you." It is such a delicate subject, and not enough proof exists to say how we should sway, so my reply, "Ask me and I'll tell you!" (My email is tnpeg@yahoo.com).
Not copping out - keeping unity. God is so good!
In the event you don't read the MGH Braintalk forums, my ex-teacher friend, lil, has been giving lots of thought to how she came to acquire PD. (I call it the "Why Me Syndrome.")
Here's my response to her post:
Quote from lil: [b]Conclusions are vague, but ,IMHO, one thing seems to be true regardless of your stand on God, and that is , good things are born out of suffering[/b]
lil – This is so true! Had PD not slapped me into reality, I’d still be “Peggy, the principal,” not “Peggy – herself.”
As far as who caused my PD – it was you . . . and me . . . and everybody else who tipped the scales of this perfectly balanced life! How? Did I take good care of my body – did I eat right? Get enough sleep? Exercise and do things for me? Not! I stayed tied up in knots and stressed to the max – over what I now know as superfluous, trite, worrisome “stuff.” Did others abuse our balanced environment? Pollute our world? And alter the perfect design? Guess?!?
“Stuff” will kill you. And to me, our Great Designer didn’t design me to be shoved from trauma to trauma, because He designed “perfection.” But worldly “stuff” got in the way.
He can intervene or wipe out this “stuff” at any time, but He knows that “experience is good teacher.” But He also knows the best teacher is one who “teaches from experience.”
Boy, aren’t WE ready to receive the Teacher of the Millennium Award!
Peg: Get off of me!
Depression: (points to chest) You talking to me?
Peg: (frowning) You’re darn right I’m talking to you! I’ve had just about my fill of you!
Depression: Ha! (throws head back) I’m not that easy to get rid of!
Peg: How well I know! But you lighten up a little on me, and I’m outta here!
Depression: Well, well! (crosses arms) To what do we attribute this attitude?
Peg: (sneering) You, my dear, are not a required symptom of PD!
Depression: (unfolds arms) What do you mean by that?
Peg: The rigidity, the bradykinesia, the balance problems, and the tremor, however slight they may be, THOSE I have to put up with. YOU I do not!
Depression: But all of the research says ….
Peg: Whoa there! There’s a bushel of research coming out that says personality traits and PD are very interconnected!
Depression: So?
Peg: So, my personality can be maintained through proper attitude conditioning techniques. And although depression can be brought on by chemical changes, I can actually alter the chemical changes with medication and attitude-changing strategies!
Depression: No way!
Peg: Yes, way! And the first strategy is to tell you to get lost! Mind over body!
Depression: But I’m pretty persistent!
Peg: So you say! But it is “I” who is in control here! I refuse to have a pity party; I refuse to be around people who bring out the negative in me; I refuse to sit here and let you rule over me! I will resort to my spirituality; I will resort to healthy eating and exercise; I will resort to thinking positive!
Depression: You think I’m THAT easy to get ride of?
Peg: Who said anything about it being easy? I KNOW how difficult it is – that’s why I need the help of friends – like PLWP – like church – like family!
Depression: But that’s not fair! That’s ganging up on me!
Peg: Now you’re catching on! Be gone with you Depression! Now where’s my anti-depressant meds?
Depression, like dementia, can be symptomatic of Parkinson’s Disease. With proper counseling, and a good medication that does not interact with what you are presently taking, YOUR ATTITUDE IS POWERFUL! Ask your doctor to help you work through this, but whatever you do, DON’T LET IT RULE YOU!
The Social Security Disability saga continues for many. I met jjjane in NYC during the Unity Walk. Jane shook violently, shuffled her feet with poor balance, and was apparently stiff with postural changes. But she was denied disbility - even after appeal! And we're familiar with Tim's plight ... denied, but hope a new diagnosis of Multiple System Atrophy will take care of that!
I wrote to aj in MGH forums tonight to encourage her to continue writing. But what will the "Disability Police" think?!? Will they say she can write, then she can work! Here were my comments: (her response was quite funny - click here to see: http://neuro-mancer.mgh.harvard.edu/ubb/Forum71/HTML/003310.html )
Keep going, aj! But don't let the Disability Police catch you writing!
They don't care that you are writing to help others cope ... nor do they care that you have insomnia and it hurts like #@$!% to lie down!
They don't care that your self-image has often dropped to suicidal levels, nor do they care that to even type is a handicapped accessory nightmare!
For THEY are the Disability Police! Your attempt to help others (or even your own self-esteem) through writing COULD be grounds for getting a job!
Yes, we know of numerous folks out there just dying (no pun intended) to hire someone who loses their train of thought when multi-tasking,who violently shakes and cannot write legibly when under any stress (or sometimes without warning), or get choked easily at times, or have impaired speech, or balance problems, etc, etc. And don't expect these same folks to be on time ... it was all they could do to roll over in bed and shuffle to the bathroom!
Yes, THEY are the Disability Police, and YOU could get a job! (Just line it up for us, and we'll be there with bells on) Oh, did I tell you not to depend on such employees - some days are spend totally in bed with pain!