[reverett123]

If only as a mental exercise, we should periodically step back from PD for a fresh look. In that spirit, let me put an idea on the table.

Generally speaking, PWP do share certain characteristics. The so-called Parkinson's personality does exist. As a group we tend to get things done and are dependable.

Don't you just hate it sometimes? Just get sick of being the good kid? Tired of being teacher's pet? Isn't there a part of you that wishes it had a time machine and could go back and have a talk with a younger you? "Hey, kid! C'mere. They're not really your friend. They just don't want you disrupting the classroom." Isn't there a little part of you that would like to strap a Death Ray across your back and do a King Kong up a sky scraper? Sure there is!!

Everyone has several layers of personality with each laid down at different ages. Each one is, in a sense, a different individual and part of growing up is integrating them into one. Think of them as kids on the bus with the grownup driving. Occasionally one of them grabs the wheel for a short time. Others sit quietly and never make trouble. Some throw spitballs.

Each of those kids is capable of emotion. In fact, they are are more emotive than verbal. Some get upset because the other buses stopped for ice cream. Some are tired of the smelly old bus. Some don't want to do their homework.

The point is that as adults we have to control the kids on our bus. But some of them are sick and tired of it. "Sick and tired" of being the good kid. Everyone has a certain amount of inner conflict. Some more than others. Do PWP represent the ones whose sense of conflict passes a certain point?

What is the brain chemistry associated with the sub-clinical "fed up" state? What hormones are released and how do they react to the stress response? Stress that causes inflammation? That releases cortisol? That decommissions 80% of neurons in the SN by the time we hit as low as 40?

Is it possible that PD is a way of saying "I'm tired of this emotional slavery to responsibility. I quit."

[Bob Dawson]

Originally Posted by reverett123

Is it possible that PD is a way of saying "I'm tired of this emotional slavery to responsibility. I quit."

Woman named Genevieve; says PD stole her identity; things she was good at all her life, she could no longer do, and she said, it was SUCH a relief. She no longer had to do those things. She no longer had to fear someone else's judgment, or even her own.

She said she even dreamed that she was walking down the street with her entire self-identity in her purse - not just her driver's permit and credit cards; it was her entire definition of herself, and two purse snatchers ran up from behind and snatched her purse and ran down the street. They turned and looked, to see if she was chasing them, but she was not. She was standing there waving, and she called out, "I hope you like it! Good luck!" And then she went back to her family and friends and told them that their free tickets had expired; she was no longer available to act out the role that she had played all her life.

Genevieve says that Parkinson's is your brain and the entire universe yelling, "Would somebody please tell her that it's enough, already?"

[reverett123]

So we are born with an endocrine system shaped by not only exposure to maternal stress hormones, but also the experiences of her maternal forebears as each generation was molded by the collective experience. Paternal historical influence is present as well and a reflection of their treatment of the women in their lives. Finally, the tolerance of abuse and the support or neglect of church and state all accumulate over the ages in the child.

This "epigenetic" transfer of the life-experience of the mother influences not only er children but also her grandchildren and maybe more. I'm going to repeat that - the stresses encountered by a pregnant woman influence at least two following generations. If you think about this for a minute, it gets kind of scary.

In a traditional community where stress was acute, the effects would tend to die away like an echo. We are built to handle acute stress.

But what of the Brave New World of 1750 London? Streets teeming with strangers drawn from the protective village by the money. Family left far behind, there is no safety net. Horrible working conditions. Air black with coal smoke. Chronic stress that was continually reinforced did not die away. We are not built to handle chronic stress.

What happens in a society when the effects of stress accumulate across generations? That stress climbs steadily as each generation of babies has a few more who have been sensitized and who will tend to produce even more. And at some point a threshold is crossed. Strange new diseases and disorders appear. The canaries begin to die.

<Sigh... That isn't what I intended to write, but it is late. G'nite.>

[moondaughter]

[QUOTE=reverett123;687651]If only as a mental exercise, we should periodically step back from PD for a fresh look.

This "epigenetic" transfer of the life-experience of the mother influences not only er children but also her grandchildren and maybe more.


Rick,

I think in a past life you decoded egyptian heiroglyphs

maybe thhat kid on the bus was also the little smart **** sitting in the back of the classroom snickering because he/she was way ahead of the pack....a bit arrogant....put his/her hook out for the pd coat feeding the epigenetic transfer with his/her own fuel...

but maybe pd is a place of arrival ....

telll us more professor!
md
p.s. actually i identify with your description more than my own but then has michael fox creeated a new archetype........?

[reverett123]

moondaughter, I may not know what you said but I will defend to the death your right to say it!
Now, where was I? Oh yes. Inner conflict. We don't want to take up the burden, but we "should" do so. That is such a cruel word! Should! Abandon your dreams! It is time to wake up, Hero Child! "Here I come to save the day!" Someone should letter that across that darned tulip.

But parts of us recognize a con when they see it. And while we shoulder the burden, it is not with our whole heart. And if the burden eats up our life in service to the Other, perhaps a sort of rebellion begins.

"Move that foot!" "No."
"You will hold that hand steady." "No I wont!"
"You can't make me!"

How extreme can this get? Heart attack? Cancer? PD?

[reverett123]

39 PWP talking about lifelong stress-

Participant’s Comments:

As a child I had what was called "cyclic vomiting". I had severe headaches and vomiting that would last for several days and I would sleep almost the entire time. This would go in cycles happening about every 6 weeks or so. Then as a teen I had severe migraines that continued into my thirties at which time they subsided somewhat. I have had a lot of stress through my life. My parents fought a lot and divorced when I was young. We were poor and did not have enough food or proper medical care.

An unusually stressful life if seen from outside.

my life has been one calamity after another - my birth mother abandone me while myfather was in europw (wwII) - my father was brutal in temperment - he remaarried and that was less than harmonius-- the home situation was so bad that from 10 - 18 i spent summers away from home - i am a viet nam vet --- two marriages do you get the picture???

Childhood very stressful. Loved school it was my escape from home. Left home at age 18. Find it stressful when I think back on my childhood an realize that my mother must have known what was going on but chose to put blinders on. Never had a close relationship with my mother. I also grew up on well water and assume I must have been to pesticides as my stepfather ran a greenhouse and grew carnations. I had to work in the greenhouse as well. I am assuming that pesticides were used but am not sure.

My first 18 years were normal. I was in the military from age 18 to 38. Working long hours and not getting enough sleep, combined with moving caused above average stress.

my life was full of stress, my father i only knew as being sick, he had severe heart problems and then cancer and then he passed. my oldest brother died young of cancer and my youngest brother died 3 years ago. my mother died 15 years ago. i am the only surviving of our immediate family. i was raped at the age of 18 and have a child of rape, i have a granddaughter now that i love dearly but that was very stressful and now the issues have come up again with her and how to tell her what is going on. financially with pd, i barely make it, that is a main stress, you have to choose between eating and meds and a roof over your head every month, that is a constant stress and worry. i worry about being at a store alone that i will fall or not find my way out or i can't handle paying without fumbling. life is a constant stress especially with pd. thank you for taking the time to do this survey, i hope i was helpful in some way.

My entire adult life from age 13 on has been a long string of almost uninterrupted stress. First I went blind but my parents were told it was in my head, there was nothing wrong with my eyes. Once it was diagosed, I went to grad school and eventually got my PhD in Research. I have along the way had 20 major surgeries (eg removed gall bladder, repairs from 4+ tear at birth of daughter who was premature etc etc. My work is very stressful and has been so continuously for 35 years. I am a type A person, well recognized in my field and with mega responsibilities. I know I have to start thinking about a successor for my clinical and research center; but at the same time, the final application to get the disorder I have been researching / treating for 35 years is due early 2010 and so I'm working hard on that. I almost never get home earlier than 8 or 9 and work weekends adn "vacations". I don't get sick but i have all sorts of weird physical abnormalities... and have had major surgeries... glad to send medica

nursed father with PD for 12 yrs then his death,lost my husband,followed by nursing my mother and her death

I remember being upset when sent to summer camp for the first time at age 8 -- I did not fare well made to swim in the cold early mornings; my parents left me there to go to mexico. Don't know if that pertains... Obviously stressed by my father's sudden death at age 52 and my mother tried to carry on as if nothing were different! I experienced stress throughout college, taking tests, never feeling I had studied "enough", wanting to do well and have fun. Going to the dentist was always stressful, and the orthodontist, who kept braces on my teeth for 8 years of pain and self-consciousness. Stress in relationships -- as a college student, served a dorm advisor and carried alot of people's worries and woes. These specifics are intended to illustrate my stress level and causes. As I've written here, I realize that stress, like beauty, has to be seen through the eyes of the person. Much of what I have suffered as stress, has been demands of my own making. Sure I have come up with outside events, but I realize, for

I believe that before I engineered my life to be stress free, I was severely affected by stress. I am certain that being a gay man in a small city, and living in denial about it all, as well as coming through the AIDS Crisis created a great deal of stress and I felt it.

The 20 yrs. before I ws dx with PD wetr stressful with a divorce and my job.

Since retirement 9 years ago, stress is much lower when compared to the working years as an Electronics Engineer. The major stress source in the first 20 years was the military life time frame during the 18 to 22 yr period. In all cases I acclimated to the tasks.

stress with parents being unsupportive cheating husband raising child alone finding new career I have very high expectations for myself I feel I should perform, physically as well as anyone w/o PD

Being emotionally, physically abused by my mother until age 17. 2. Moving from my grandparents farm when I was 8 and then moving away totally from my childhood community when I was 12. 3. The divorce of my parents when I was 16, he was a public figure so it led to much gossip. 4. Married wrong man when I was 18. 5. Husband second shift and slept all day, had to care for 3 kids alone, my kids were my joy. 6. Had a very rocky marriage for 28 years, finally left in fear for my life. 7. Former husband continued to threaten and harass until his death in 2004. All of these things led to great stress, the more tired I was the greater the stress, the greater the stress the worse the symptoms (tremors and stiffness being the worse).Themoststress was keeping all this in and trying to appear to the world that all was right with my life.

Disfunctional family, married alcoholic. Although life was difficult after divorce the stress level began to decrease. Now I'm married to a wonderful supportive husband and my stress level is extremely low.

when I think about my life, I was really a mess even though I didn't realize it at the time. when I Reflect back on my childhood, and early adult life (before I met my husband of 24 yrs.), I don't know how I made it. I've had all the major stress factors: sexual abuse, verbal abuse, divoce, miscarriages, divorced parents, father died, illness, moved many times, financial stress, death of twin grandchildren, daughter diagnosed with MS, strained relationship with mother and brother due to sexual abuse/ It is only through the grace of God that I have survived and I have to consider myself to be so blessed.

I would say the overall level and effects of stress in my lifetime would be high. I have also been diagnosed with familial tremors at the same time of pd diagnosis. come from a family of nervousness: mother, brothers, sisters.

Under age 20 life was less stressful than most other people. A very happy time. At age 28 lost my mother who killed herself at age 48.We were very close and I felt much guilt at this time

I was physically allergic to my Mother until age 4. I was raised by my Aunt(my Mother's sister) We moved every couple of years until 1965. The last move was from a small town to a large city. I dropped out of high school my senior year I joined the Navy My Mother slept around alot. My folks got a divorce after 25 years of marriage My Father married my Mother's sister. The aunt that raised me until I was four. I got married at 19 and was shipped to Vietnam 30 days later and have not seen her since. I served a tour of duty with the Brown River Navy in Vietnam

In my mid-40s, had a very stressful several years as chairman of a major department at a major university during very turbulent period (e.g., arson attempt in building, etc.)

I had a relatively carefree childhood. In my late teens I married and had children. The stress started at that point and continued to get worse through my adult life. In my late 40s I experienced significant workplace changes which increased stress astronomically. It continued through to my early 60s when I quit working.

[lindylanka]

Rick,
Something in your thread really hit the right points, for many people my age, 60-ish, we were brought up on a basis of accepting the stress, and the duty of doing things 'right', often at a huge cost to our inner selves, not because we wanted to do 'wrong' instead, but because getting it right meant putting everything before ourselves. And I mean everything. This is especially true for women bringing up families, and men providing for those families. Often this is seen as a one-way street, but actually those places of responsibility that we were expected to accept with no real knowledge or understanding of their implication were drilled into us at such an early age, and while there was for women a long running dialogue that offered gateways to empowerment, it sometimes seems that for men that dialogue didn't happen in the same way, so there is less recognition of the stressors that make up the conditioning that they too underwent.

When something life-changing occurs, that shatters all those myths, then we can really stand outside of them.

For me the double-edged sword that cut through the illusions were my partners descent into mental health problems, and my own PD. IT was only once those two had taken my life and changed it forever that I could see what must have been obvious to others - that the level of stress was incredibly high, the responsibility I had taken on was unrealistic, and that there were prices to pay for that.

But you don't know that when you strike your bargain with life at 7 or 15 or 18, or whenever it is that you take up that inner challenge. Sometimes you don't even remember when you do it. The moment you read a verse at sunday school, or took a childhood pledge, or promised something that in ignorance you would never be able to fulfill, and took on a lifetime of anxiety, fear and guilt with it. It could have been reading a picture book with your mom, and a value is lodged into your psyche forever. And it is not that it is there that is the problem. It is the unrestricted way that we often decide to implement it that causes the stress. But we don't know that till later!

It wasn't until I stepped outside of the enchanted circle of my marriage, that had once been the closest and best thing in my life, but which had turned, in the wake of my partners devastating mental health issues, into my worst nightmare, that I realized that my own perseverance and tolerance for taking on the impossible were making me very very unwell. Removing myself and my child from that situation has done at least as much for me as my medication, what is left is damage I have not found a way to repair. It was far from easy, and went against the grain of everything I had embedded in my life as being 'right'. I came to realize that it also meant that I would have to re-define most of what I believe in. In the strangest way PD gave me a place in which I could do that. Bradyphrenia sometimes has it's advantages. Things become a little more essential!

I suspect that this is the cause of a lot of chronic conditions, and has nothing to do with natural resilience, or a bounceback ability to survive, but pushing ourselves way past that point in the service of things such as duty, responsibility, our place in society, our response to the expectations of others, and losing our own personal way in the world. In someways PD has snapped me back to the person I could have been all along, and I am grateful to it for that.

The cycle of loss that you describe so well, Rick, is something that I recognize very well. I am aware that there are more losses to come, but I am outside of that cycle, not fighting righteous battles anymore, not being the good child, but being more ordinarily real, someone with limitations who can see the limitless...... For me that has made a big difference.......

Thank you for starting this thread,

Lindy

[Floridagal]

It seems as though we all have or had stress-filled lives and I agree, it had to have a substantial role in causing my illness. What you said Reverett about intergenerational stress continues to haunt my family. The physical & emotional problems they have encountered are boundless. Looking back, there was addiction, abuse, poverty, and pervasive hopelessness. I tried to fix it by being the "good kid" and not causing trouble, and I believe, all the while absorbing the chronic chaos around me. As a child I thought ALL families were like mine, having never gone outside the loop. No summer camp, no girlscouts, really little exposure to the outside world. I think I became really stoic on the outside, and all the while actually craved the "excitement" I grew up with. Nothing seemed to bother me, I could do it ALL, and look good doing it (or so I thought) After I became a bit healthier and was working as a nurse in, yes, a extremely fast paced surgical unit, I started really seeing it for what it was. I knew at some level it was killing me, and yet, I didn't get out. there were $ issues, an unsuportive spouse and kids. So I stayed, and stayed and stayed. It was interesting that in becoming friends with coworkers and getting to know them, the ones who talked about childhood had similiar experiences. I wonder about their health today. I have read about studies that show that things like poverty and smoking and not having enough to eat in one generation will cause actual changes in dna, which gets passed down to future generations.(like you said?) In one sense it's like the cards are stacked against those generations at birth. There is something I do wonder about and hope. That is, can we change OUR genetic profile to effect positive change in our offspring & great grandchildren. I know we have to deal with the cards we are dealt, however, I want a CURE for all that ails us, as a society and as individuals struggling to get through each day. Once again, I'm on my soapbox, hope I'm not being too preachy. (I did have a stint earlier in life as a "holy roller" haha)
I know there are "million stories in the naked city" That is mine.
Be encouraged and I'll be too, FG

[Bob Dawson]

I nominate this thread to be essential reading for all those who care about Parkinson's People; caregivers, neuros, nurses, doctors, and especially, PWP themselves.
The personal revelations, the truth-telling, the mutual understanding and care:
This thread is awesome. Just awesome.

[paula_w]

we must all excercize vigorously. yeah ok... but i finally started going to the health club witn a teacber friend ---she has never forgotten me as a few others come in and out of this group as they can . it has expanded now that booomers are retiring.

This is when i should be retiring so friends are available to pick me up and go there. I'm doing all aqua fit stuff....it feels great!!! it's luxurious; most of you likely have one. this is brand new and i love it.

key words for success: she picks me up.
we have to do something for fun on a regular basis- like it or not replace conflict with fun, not more conflict.

two cents