Midnight Rider (From My Perspective - why I can't sleep!)
Will that be One Scoop or Two? (Controlled Perception)
Wake Up Sleeping Beauty (Attitude is key)
Scrawny Little Tree (A Chistmas Story - My Personal Fav!)
Ribbons and Bows (Another Christmas Story)

MISC
Stem Cell Position
My Journey with the big "D" (Depression)
 

STEM CELL AND THERAPEUTIC CLONING POSITION

Brenda Tucker: I remember many years ago there was a commercial of this sweet little old lady saying “I fell down and I can’t get up!” I remember laughing at it and using it to get laughs from others. I’m not laughing anymore! Exclamations such as this are common everyday conversation for the People Living With Parkinson’s. “I had the doc turn the left side of my brain off so that I could walk. It worked but now I can’t talk.” “I have to come off that drug because they found it causes heart disease, though I’ve been on it for 9 years.” “The samples of that drug that the neuro gave me really work. I just don’t know how I’m going to afford it.”

Hello, I’m Brenda Tucker, co-founder of a three-year-old Internet based organization that focuses on quality of life issues of People Living With Parkinson’s…PLWP, Inc. My best friend, Nancy (Nan) Abraham and I met on the internet in a Massachusetts General Hospital chatroom in mid 1998, ended up launching a website in April of 2000 and became a 501c3 non-profit organization in September of that same year. Having over 500 members, knowing many of them on a first name basis, I see and hear just about “everything”. I see fathers who never planned on not being able to work, sitting at home worrying, feeling so depressed and alone, wondering how he’s going to help his wife support their school age or even pre-school age children. I see young mothers who struggle everyday trying to keep up with all the chores, no matter how willingly the mind and heart wants to do them. I see young people in the prime years of their life who should be setting off on their own great career expedition, praying that a cure will be found so they can live like normal human beings.

The thing I see, almost every day that I didn’t expect is the deterioration of the quality of life of all of these people. Watching them, my friends, live with the fear that one day PD (Parkinson’s) will take their life or even worse, take their body’s ability to move, leaving them entombed in that body for years. The fears are many: watching as hopes and dreams for the future are dashed not only in the 55 or 60 year old, but also in the 30 year old or even younger; meeting people on the Internet, who remain anonymous needing desperately to know that they’re not alone; anonymous because they’re still in hiding, fearing that once people know they have an incurable disease that may make them drool, shake, move uncontrollably due to side effects of their medication, stare at them without any type of facial expression at all, clumsily fall for no apparent reason or talk in a monotone or garbled voice…that once people knew this, they would disassociate from them, divorce them, fire them or even ridicule them.

I would be remiss if at this juncture I did not mention those individuals who do not have PD but who choose to remain with us who do. PD, as with other diseases, affects family, friends, co-workers of the diagnosed individual. There are those who just can’t handle it, so they leave. I hold in high esteem those who stay. The diagnosed have no choice in the matter…those who do stay make a conscious decision to do so.

Well, welcome to our world! It’ll be 16 years this July since I was diagnosed with Parkinson’s at the ripe old age of 40. I have been fortunate in this journey in that I was able to work and be a productive human being until PD forced me to leave the workforce on disability almost three years ago. Having worked for over 35 years, thriving on my work…yea, you might say a workaholic, my entire perspective had to be changed. Thank God for PLWP, it has been my salvation. I still feel I contribute to the human race, if only in a small way.

I am so fortunate to see the good side of Parkinson’s. Yes, you read that right. These same people that struggle with the toil and trouble of everyday life, have such sweet, caring spirits. Courage, unselfishness and hope abound in this community. When one PLWP hurts, they all hurt. When one is in need, they all “circle their wagons” protecting that one. When, as it sometimes happens, one finds out they were misdiagnosed and they don’t have PD…all rejoice. When a hope for a cure is overshadowed by opinions and accusations that this cure would be the result of ungodly acts such as killing a baby or usurping God’s authority by creating life…they all GET EDUCATED.

I like most of my peers deliberated long and hard deciding my position on stem cells and cloning. I don’t have all of the answers; I don’t even know all of the questions. But weighing what I do know against the elimination of pain and suffering of literally millions of people from neurological diseases to diabetes and even cancer…well, I have arrived at a decision that I am not afraid of being held accountable when I stand before my creator on judgment day. I support therapeutic cloning…I do not support reproductive cloning. Therapeutic cloning doesn’t create…it saves. There is a variety of stem cells, programmed and non-programmed, those that are life and those that repair life. Responsible management of stem cell and therapeutic cloning research is essential. Irresponsible negating of the entire research opportunity, the opportunity to repair millions and millions of lives, is unthinkable.

Before making a decision one way or the other, one must be informed. A decision of this magnitude will shape the future of our world. The responsible individual will not listen to the voices of others, but will take the time to do their own research. There comes a time in every generation when one must put their hearts and minds on the line … this is one of those times.

Together we make a difference.

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INTRO:
The pre-parkinson me was never depressed...I thrived on challenge and pressure.   Now, almost 15 years later, the picture has changed.   Lately depression is a symptom of the day for many people living with parkinson's.  My intention here is to share my dealings with this foe in hopes that it may help others.  I do not claim to have the answers...this is just my personal journey. 

BRIEF HISTORY:
There is nothing particularly unique in my PD profile.  At the age of 40, playing tennis with my daughter one day and I could not grip the racket.  That same month, saw a neurologist, had an MRI, diagnosed with Parkinson's.  Doctor told me of the shakes on my right side, prescribed Sinemet 10/100's and I was off and running.  The first ten years, I lived in blissful ignorance. The neuro's that treated me told me only what I asked, changing  my drugs occasionally. but that was it.  I didn't think about what "lay ahead"...I was totally oblivious of future problems until the future arrived, bit by bit.

In the 11th year, the degeneration slowly increased its effect on me.  The tremor increased, pain with movement was very slight but was reality, slowness of movement was noticeable, but only to me,  and in retrospect I can say my memory began to deteriorate but only minutely.

Since then, I have asked more questions, done my own research,  know many people who are living with Parkinson's and definitely no longer the blissful ignorant!  I have determined in my mind that low level estrogen caused me to have Parkinson's.  I believe it was in the year 2001 that Yale University concluded thru their study that this was one of the causes of PD.  That insufficient estrogen for 30 days would/could cause PD.  I was diagnosed in July of 1987.  In January of that same year I underwent a complete hystorectomy.  The GYN had a heck of a time determining my specific need for supplemental estrogen which normally women took from .25 to .50 mg.  I have been taking 2.5 mg since late 1987. 

At the ripe old age of 53, I was forced to go on disability.  Physically, my energy level was very low.  The pain though tolerable was constant.  Slowness of movement (bradykenesia) was now noticeable to others. I was taking meds that had their own set of side effects such as drowsiness, stomach problems, etc.  But the most unnerving symptoms were the ones effecting my mental and emotional fortitude.  Mentally, my cognitive skills were deteriorating.  With additional impaired mind and movement correlation, andfailing memory, the ME I was accustomed to seeing in the mirror of life was fading away.  As they say, hindsight is 20-20.  I now realize and accept the fact that this was the time depression was settling in and making a home in my everyday life. 

Up to the minute, play by play:
To make a long story short, up until last Friday (March 8, 2002), I was dealing with the depression on my own.  I thought I was doing pretty good at hiding it and keeping it at a level I could live with.  Early last year, my favorite slogan became "Zoloft is my best friend".  (Zoloft being an antidepressant.)  This winter, the panic attacks have also raised there nasty little heads and I finally came to grips with reality.  I needed professional help. 

WOW, what a revelation!!  Professional help!!!  That in and of itself is depressing.  Those who know me well and knew the ME I was will probably be surprised at this as much as I am. 

Last Friday was the beginning of what I hope to be a story of success.  The Psychologist and I started our engines for the race ahead.  My expectations I hope are within reach and not set too high.  I don't expect to not be depressed, but would be happy to just learn how to deal with it.

I've decided to keep somewhat of a journal here to share with others.  I'll try to be as candid as I can be and I hope it will help some of you.

Well, it is now May 14 and I should be run out of town for not logging my experience.  I have found it difficult,  to say the least,  to put into words what I am  discovering.  Some of it is too personal so I have the need to paraphrase or tell you my findings in a general way.  For most this is an easy thing to do but for me who normally tells all, it's extremely difficut.

I willl do it though.  But for now, I want to say this was probably the best decision I ever made.  Getting professional help is not degrading and is not admission of defeat.  It takes courage (more than I imagined) to go below the surface of our innermost self.  Where I thought of it as a negative statement of my character, I now see it as an intelligent and mature attempt at dealing not only with Parkinson's but with the reality of life in general that I believe is magnified by PD.

So check back here from time to time and I will attempt to share this life changing experience as it happens.  BTW if you are reading this will you let me know at btucma2000@yahoo.com    It would make my writing easier if I knew it was being shared.

VISIT NUMBER ONE
My first visit with the Psychologist was pretty much information gathering and just getting to know one another.  I felt as if I was there for an enormous amount of time but as it was, I was only there for 45 minutes.  I think I talked non-stop.  Answering questions about myself, feeling very comfortable doing so, I left there proud of myself for taking the first step.  The pearl I took home with me after this visit was the realization that all my entire adult life, I have been a "human doer" instead of a "human being" (his words not mine.)  I can see a lot of truth in that...I have measured my worth based on what I've done and what I've accomplished.
Food for thought: Now that I'm limited to what I can do, I can no longer use my measuring stick.  By doing so, I will never "measure up"! 

VISIT NUMBER TWO
This visit was "family tree" day.  I had to tell Steve all about my family, answering questions that I found difficult to answer because I barely know most of my relatives.  I marvel at his ability to get to the nitty gritty of it all with so few words.  His way of leading me down the golden path and WHAM ... yet another revelation.  This revelation is of a personal nature  but suffice it to say it brought to light something that I had simply overlooked for more than 25 years.

We discussed what I wanted to get out of our work together.  I told him that I didn't feel I really needed to go deep or drag out the past.  My main concern was dealing with parkinson's and in doing so  be able to help others.  That I was prone to panic attacks now and I definitely wanted rid of those if at all possible.  He kindly nodded at my statement and commenced to tell me about acquiring an "anchor" and going to a quiet, comforting place in my mind while breathing deeply and regularly.  That my intellect knows that I will not die from panic attacks, etc. etc.  Most of this was not new to me, but I listened intently, aiming to  get my money's worth.  I did, however, like the idea of the "anchor" and chose the cross pendant that I have worn for the past 20 years.  The idea of the anchor was when feeling a panic attack coming on, I was to grab my anchor and it was to remind me to go to my safe place.

This session, the tears did flow a bit  because of the personal revelation buy you know what was nice.  I felt ok about crying and didn't feel as though it was symbolic of defeat or I needed to apologize for crying.  It was kind of cleansing.  I knew when I walked out of his office, he would prepare for his next client and my  tears would not and did not affect him personally.
Food for thought:  I now know one way of dealing with panic attacks.  I have my anchor.  Now the question is, can I implement it....time will tell.  As I drove home, I felt sure that another two or three sessions and I would feel great and be able to take control of this depression.  After all, knowing the essence of the problem was half the battle and I felt I was almost there.

VISIT NUMBER THREE
Because I had been at Nan's for a couple of weeks, there was a three-week lag between visits.  The anchor was working pretty well but depression was still very much a part of my life.  When I got to Nan's, she noticed right away I was not myself but after a day or two of our being able to talk and share, I was almost back to being me.  By the time of this session, I was a tad blue but no panic attacks and didn't really feel depressed. 

At this point I feel I must interject that I'm on a regular dosage of  Zoloft 100mg every morning  and was just recently prescribed 25 mg of Seroquel at bedtime.  The Seroquel was prescribed after I had a whing dinger of a panic attack in the neuro's office.  My point is, I'm not sure if I'm mentally handling the panic attacks or if Seroquel is doing the trick.  What I do know is that the night time dosage makes me sleep really really well...almost too well.

Now for the session.  We just generally talked this session.  I expressed my strong faith in God and it was  like opening a door for Steve.  Come to find out , he is more of a minister than a psychologist (my opinion) but he doesn't press it upon his clients.  Opening that door took me to a new level of vulnerability.  It seemed now that we were more like partners in this effort and on more common ground.  In accepting  this, I found that I had to open my security gate that I had spent a lifetime building around my heart.  Apparently, to deal with today, I must deal with yesterday.  WOW!  Now let me tell you that is scary and unsettling.  There are only three people that have penetrated that gate and they respected my ownership of what was inside and never ask questions.  Well, the thing is I'm paying Steve to ask questions!  Leaving his office this day, it felt as if I had a weight on my shoulders that I had to carry and digest in its entirety.
Grand revelation:  I believe now that all of our baggage and inhibitions....all of our intimidations and feelings of inadequacy...all of our angers and, yes, jealousies....are enhanced by both having a degenerative disease and by the resulting chemical embalance.

VISIT NUMBER FOUR
Needless to say, when I arrived for this session I was really depressed.  Knowing that I had to deal  with all that baggage and God only knew what else, I just couldn't get out of my slump.  I did put it away for a few days and spent time with Carol (pwnkle) and Patti in Kentucky but it didn't really disappear, there were just more important matters on the table.  You see, I could usually out step depression if I didn't focus on myself but on others.  That used to do it for me .   Now it's just a short temporary fix. 

Well, I'm here to tell you when I left this session I was feeling better but there is much to share with you and you're gonna have to wait.  Of course, that depends on when you read this! LOL

Well, anyway, stay tuned....more to come.

Would you believe it is now SEPTEMBER!!  When I remembered that I had started this journal and I hadn't kept it up, I felt rather guilty for letting you down.  Upon rethinking it, I've changed my mind.  The part that isn't written here is personal stuff that I had to work through.  I don't believe it would have helped you because each of us have our own skeletons.  Though not fine tuned, I've come away with "The Down and Dirty Dozen"...12 steps to dealing with depression.  Here they are:

1. Admit to yourself that you are depressed.
2. Get professional help
3. Don’t be stubborn about taking anti depressants
4. Avoid stress as much as possible
5. Do not let yourself procrastinate
6. Let up on yourself, just take one thing at a time but be perseverant until everything is done
7. Rest as much as possible
8. If you don’t feel like doing anything, then don’t … lay back and put your feet up
9. If you are having a well-deserved pity party, try not to involve yourself in anything that will leave a residue when you come back.
10. Avoid too many commitments; make only those you know deep inside that you want to keep.
11. Be good to yourself, know that you will get thru this and allow yourself time to get your ducks in a row.  It won’t happen over night.
12. Accept the fact that you can’t do everything you used to do (this is a hard one!)  So learn to say “NO”, not only to others but also to yourself.

SUMMARY:  Hold on tight to your faith!  Celebrate each and every success no matter how small.  Though they may seem small, in the scheme of things they could be mountains.

I've decided that I am Brenda Tucker who happens to have Parkinson's and I will be depressed from time to time.  I'm not a Parkinson's Patient who lives PD and doesn't fight the depression.  It took a lot of time and effort to come to this conclusion...BUT IT WAS WORTH THE TRIP!

If this has helped you in anyway, I'd like to know about it.  Please drop me an email at btucma2000@yahoo.com

TOGETHER WE MAKE A DIFFERENCE!!

Love and HOPE,
Bren

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