[steffi 001]

Okay...i will probably become the least popular person on this site by saying this but I am going to say it anyway.How come...the thread which kicked off by stating that the real cause of pd ,was STRESS...managed to become the most bloody STRESSFUL place to hang out on this entire forum?
I am half smiling and half shaking my head in exasperation.
And no...I am not being unkind,sarcastic,critical or mean. I am simply stating...in my thankfully simple manner [cos if I had been smart I would have got caught up with the "said" thread for sure...and put my pennysworth in...and ended up with.....ho hum...STRESS.
as I was saying...all this indicates to me is that where there`s folk...there`s STRESS. It won`t ever go away unless we all mutate into identical,like minded,dull,boring sods who roam the planet in our same dull grey uniforms,say hello to each other in our same dull monotone voices...do the same dull monotonous jobs as each other,and pay for the same tasteless,colourless sandwich each day...with our same little pay packets...and go home to the same little box on the hill as Mr Same..and Mrs Same.
No passion,no aspirations,no inspiration,no expectation,NO STRESS

nope...as STRESSFUL,as Stress is,I would sooner live in this world of multi this and that...different strokes for different folks, vitallity,diversity and colour,and risk a little stress than rub shoulders day in day out with Mr and Mrs Same.But...as I said...a LITTLE stress...not a HEAP.
But...how about we share ideas about WICKED WAYS TO CHILL.
Share our own personal [well not too personal you hear...] wind down methods.The stuff which tames a wild beast in seconds...suggestions and success stories on WAYS TO CALM DOWN...TO SWITCH OFF...THAT WHICH MAKES YOU SOPORIFIC...
Someone made me think tonight,about the stress of high powered jobs,you know,managerial positions...It would be interesting to mark up what jobs we all do or did.
And if there are any experts who can fill folk in on how to manage stress.

I still hold firm by my own observations that much of it is how we folk are
made and how we tackle life as individuals. .And sorry,but no-one on this site,when presenting a theory about upbringing,childhood abuse...stressed parents [not being deflammatory about you...but am waiting for an answer]
no-one has ever responded to my puzzlement on how come i`m a twin...same birthday,same mum,same house,environment etc etc...
how come i have pd and my twin does not.
I`ll tell YOU why ?
Cos whilst I was prancing starkers around my bedroom at midnight,singing and dancing [we ARE talking age 5 or 6 here..no i didn`t do this in my late teens] acting out shakespeare,creating odes to whoever ..SHE was sound asleep,sucking her thumb,happy as larry in NoddyLand .And no amount of accidently falling on her head [cos I needed her view] would wake her.
ME..a 24 hour live wire...had to get it all in,like YESTERDAY...with a brain that didn`t stop to rest.
HER...a contented...come day go day ... could block out the nasties and unpleasantries by sleeping on it..kind of girl,who to this very day...can let stuff go and has the art of saying NO to folk,down to a tee?tea? T? see what I mean? I always had to GET IT RIGHT.

SO THIS IS THE "SOD IT " THREAD.

My Stressbuster "SOD IT" is a walk,with my SOD IT Sister...and my two dogs through SOD IT WOOD.

What`s your `s?

An d if no-one replies I`ll SOD OFF !!!

[Stitcher]

Steffi, in that "other" thread that had to be locked...I posted a reply almost immediately about my personal take on what causes PD, but I later deleted my whole reply.

I see stress as a factor in many things in life, but not as a direct cause of anything in particular. It may exacerbate health issues, as it does with PD, but I doubt that it is a direct cause...no matter what I read.

So what is SOD? I may have missed something...so I have to ask. Is this a UK thing?

We can guess and speculate on the cause of PD "until thecow3.gifcow2.gifcome home."

Personally, and in the most simplistic way of explanation, I believe it is rooted in the environment and our individual human predisposition to chemistry change, as well as the way our personal chemistry processes that environmental factor; e.g. toxins.

[steffi 001]

My apologies.Sometimes I forget that our usage of language is widely different between countries although after my SWINGERS episode I guess it should be uppermost in my mind.
Yes...SOD OFF/ SOD IT are english terms, HUGELY more acceptable than the tawdry and offensive four letter expletive which I don`t care to write down here.The word is affectionately used by "moi" and my post wasn`t meant to be damning to the mentioned thread at all.I just found it ironic that when we are trying to avoid Stress...in doing so it naturally raises its head.

No...the thread was extremely lively and informative,intelligent and apt,but sadly got way too personal,which to be fair,is a fact of life when "passionate " folk with diverse opinions get together.
I guess the important thing is to know when to back off,and shut up so more damage isn`t caused.Life is one huge learning curve hey?

My aim was to say,...we aren`t going to eradicate stress so can we all share ways of managing it.I tend to be pro-active...always on the lookout for ways of "fixing" and "pouring oil on troubled waters" rather than analysing.My brain isn`t capable of the depth of concentration and assimilation of facts required for such tossing around of data etc .
I know my limitations shall we say.

Simply thought it would be useful to have a thread where people could recommend ways to chill out...you know..tried and tested methods...what works for them. I am sure there is one already floating about somewhere but it doesn`t hurt to re-visit issues from time to time.
It could be a good book which transports you to another place for a while...
or a particularly beautiful piece of music. A feel-good film...
JUST DON`T HOG IT TO YOURSELF. SHARE IT.
Absolutely anything.It doesn`t necessarily have to be a calming activity.
Leaping out of a plane might chill some folk out.Personally it would FREAK me out but ...whatever FLOATS YOUR BOAT. ANOTHER ENGLISH SAYING.

But also,and this is more important for those who are still trying to juggle work,home,leisure and pleasure...
WAYS TO BALANCE WORKLOAD AND STRATEGIES ON HOW TO PRIORITISE AND MAKE SOME SPACE FOR YOURSELVES.

WAYS TO ADJUST WHEN WORK FINALLY HAS TO GO...
WAYS TO ADAPT TO THE EVER CHANGING GOAL POSTS OF PD.

[Stitcher]

My takes...from having been there, done that...my personal thoughts only...

WAYS TO ADJUST WHEN WORK FINALLY HAS TO GO...

Find a hobby or something of interest NOW. I have been amazed at the types of hobbies/pasttimes that have been taken up by PWPs post work-a-day-world.

In the 2006 World Parkinson Congress "Creativity and Parkinson's" website there are tons of ways that PWPs continue to be creative and stay busy...by way of a life long "hobby" or a newly developed "hobby."

And/Or...begin now to find ways to be involved in PD advocacy...the list seems endless. Track evolving therapies with the Parkinson Pipeline Project. Start a support group. Learn about fundraising. More simply, write letters to legislature as a member of PAN. The list goes on and on.

Read...Read...about those who have done it. Search this forum and other forums. Read the MANY items that have been posted to personal PWP website, as well as this forum; e.g. To Work or Not To Work

WAYS TO ADAPT TO THE EVER CHANGING GOAL POSTS OF PD

Don't get stuck...and I don't mean PD freezing

Courage is the power to let go of the familiar. --Raymond Lindquist

For me, a good quote to constantly reflect upon. Prior to PD, most of us had goals and family situations that were moving along rather smoothly. PD invaded life and all that changed. But, how hard it was to "let go of the familiar" way of doing things...to let go of planned goals that will not be completed...financial retirement planning that gets completely derailed (like mine...my new familiar, as a single person, is "broke-ness") or has to take a lesser route.

When you come to a fork in the road, take it. --Yogi Berra

Then there is the personal choices and how we respond to the ever changing goals. Do we embrace the fact that we have new paths and do the best to walk upon them with adventure or do we walk the path with trepidation and fear.

Life is fragile.
It is short.
It is very fragile.
It is a matter of hour to hour choices we make.

I can personally attest to the fact that life can be altered in a heartbeat, in a fraction of a second. Then there is the support group I had in NYS, before moving south to PA and my story about two of our members. I posted the following along with the "familiar" quote back in July 2006 to the Edge board:

Two more short stories and I will stop.

I have 16 PWPs in my NYS support group. One is 52, and in my learned 16-years-with-PD opinion, doing quite well. But he chooses to have his wife drop him off at this parents home weekdays so that he can sit in a chair all day and have his mom take care of him. He has even stopped coming to meeting, so I formed a "phone buddy" group that is calling him "just to chat".

The second is 74. His wife always comes with him to the meetings. He has been in our group since last year, when the group began. He is very quiet, very stooped, and very off most of the time. I have always been sad for him UNTIL recently. When we don't have a speaker we have general discussion, which everyone seems to enjoy more. Recently I have discovered that this 74 year old man, whom I have felt so sad for, 1) tutors students, 2) does tax returns during tax season, 3) takes a daily walk with his wife along their road, and 4) volunteers at a community center.

Neither of these men is right or wrong in what they are doing. It is all relative...right? But, it is clear to me that one let go of "the familiar", while the other grieves for it and refuses to let go.

Personlly for me life has been happier for me when I review my familiars, decide when it is time to let go of them and redefine them.

WAYS TO BALANCE WORKLOAD AND STRATEGIES ON HOW TO PRIORITISE AND MAKE SOME SPACE FOR YOURSELVES

I have been fortunate to have had PD begin effect my day-to-day after my children had flown away from my home. I know from listening to other that this is probably the hardest part for many of the young onset PWPs. Again, read advice from others; e.g. information for newly diagnosed that can also apply to those of us who have pasted that newly diagnosed point.

l have my fine needlework hobby. (Current project. Past project. To hell with my CERE-120 "off" score this past Weds morning...which was primary based on my tremor. Stubborn as I am, I refuse to give it up. I no longer sit for hours and stitch. I no longer do it daily...sometimes I get it ready and just sit and stare at it. But, I WILL NOT give it up...it is dexterity maintenance rehabilitation. As Dr. Hauser (USF MDC, Tampa) said to me too often in my newly dxd years, "Move it or lose it!" He was not one to take special care with words, but was good at reality checks.

At this writing I am converting my second bedroom into a "studio" so that I can move from hours of beloved stitching to a more creative way of doing things...whether it will be successful or not...I am going to try designing.

So, I HAVE RAMBLED ON ENOUGH...rare to this board...not rare for my PTSD board and I leave with this...

Any transition serious enough to alter your definition of self will require not just small adjustments in your way of living and thinking but a full-on metamorphosis. ~~Martha Beck, O Magazine, Growing Wings, January 2004

Grief is the agony of an instant, the indulgence of grief the blunder of a life. ~~Benjamin Disraeli (1804 - 1881)

Look not mournfully into the past. It comes not back again. Wisely improve the present. It is thine. Go forth to meet the shadowy future, without fear. ~~Henry Wadsworth Longfellow

hugtextw.gif

So what is everyone elses take on the topics Steffi has presented??

[wendy s]

In my early twenties, I learned to meditate and at one point in time was spending two hours a day at it. Haven't done it for years, but now I find that it can de-stress me within a few minutes. I can go from a state of fairly high anxiety, usually over some about-to-happen social event, through feeling my whole body relax to feeling almost surreally calm. It doesn't stay that good when I move on, but there is certainly a lingering lessening of the anxiety. I'm thinking it would be a good thing to do regularly again, not just as an emergency measure.

Walking outside always makes me feel better.

[Suffolkchris]

Steff/Wendy

Some of my PD symptoms have worsened of late, particularly I have the return of a stiff painful kneck. The application of heat helps but only for short periods.

I know if I go to Consultant I will probably get more Levodopa, I cannot tolerate Agonists and am already on max dose of Amantadine. So thought I would try other things rather than morgage the future with more LDopa at this stage.

So enroled on 6 week, one on one, (could not risk making a fool of myself in group sessions) Pilates beginners course. Two down 4 to go.
Also started having weekly head and back massage followed by hot stones (I know how to have a good time!). I work in a Hotel Golf & Country Club complex with an onsite beauty and theropy salon so no excuses really.


After only two sessions of each my neck is much improved but the unexpected bi product has been stress relief particularly from the massage.
Had never had a massage before and just cannot believe how I feel afterwards. So relaxed I can barely talk, my pulse slower than it has ever been and feel like I am floating on air for the rest of the day. I only live 5 minutes away but felt unable to drive home. Not PD like fatigue but a gentle tireness. Cannot wait until next week.

I had nearly 30 years of highly stressed executive torture (looking back) and this is therefore a particularly interesting thread for me.

I have a friend who is in remission from two bouts of cancer and she swears by daily meditation as her way of coping with the impact of her illness and the fear and stress of the longer term implications. So thank you Wendy for steering me in that direction too, I feel another course coming on. See if I can find a weekend residential meditation course, anyone fancy coming too lol?

My levodopa intake ain't going up just yet!!

Thank you again Steff & Wendy.

Chris

[Ibken]

seems to be almost always overlooked here.

By bio-mechanical stress I mean to include skeletal misalignment, muscular problems, bound up fascia, old broken bones....any and everything PHYSICAL that uses up Dopamine supplies faster than is "normal."

What I know is that my PD symptoms 1st presented and are worse in those parts of the body injured through life...even if they didn't seem significant at the time of happening. Almost all of my injuries were just left to fix themselves...and in fact seemed to have done so for the most part...maybe less range of motion in the shoulder, a curious popping hip that never "bothered"me - until it became the short stride/foot drag pd thing. Cramping, curling PD toes on foot that got punctured by a fish-hook configured nail almost 40 years ago.

That's why I keep trying to find the magic body work that can fix those old nagging problems. CHris, your experience with massage points to this. I, in fact am waiting, as I write, for some body work/massage with a therapist who is supposed to be good with the frozen shoulder prob. WIll report on that later!

Of course there's still that emotional/mental stress TOO.........

I suspect dopamine gets gobbled up by ALL KINDS OF STRESS!

SO, let's not overlook the obvious, tho usually invisible to all but the keenest eye - those ancient bio-mechanical physical stresses!

I think we need STRESS DETECTIVES!!!!!!

Ibby

[Suffolkchris]

Steff

Quote

"But also,and this is more important for those who are still trying to juggle work,home,leisure and pleasure...
WAYS TO BALANCE WORKLOAD AND STRATEGIES ON HOW TO PRIORITISE AND MAKE SOME SPACE FOR YOURSELVES.

WAYS TO ADJUST WHEN WORK FINALLY HAS TO GO...
WAYS TO ADAPT TO THE EVER CHANGING GOAL POSTS OF PD."

Just reread your first post on this thread and you are absolutely right I need to focus less on the symptoms and medication and more on managenent strategies (need to optimise more and battle less).

Thank you

Chris

[steffi 001]

to all that have responded so positively.
Carolyn...your links will prove so useful.I have not really searched too widely on the net therefore your pointers will be so valuable.I am going to set some time aside to investigate them at my leisure.This is one of MY many failings..not having enough ME time and that is my own doing.We can all moan and blame others can`t we,but at the end of the day it is ouor own responsibility to make life work for US. I seem to be on an endless trip of tidying the home and tied to its chores.I am seriously going to sit and make a list of the things I can LET GO of and the things that WILL WAIT and gather some ME TIME.
Thank you also for sharing your own personal stories.They are so helpful and informative.

Wendy. Meditation. How wonderful to be able to just sit peacefully,clear your mind of clutter and get in tune withi yourself.So often we dismiss the quiet times and the "don`t do anything" times as a waste and yet the benefits must be extremely rewarding.If you have any tips on how to begin they would be welcomed as I imagine it takes more than just sitting crossed legged on the floor.It must take some amount of skill to execute and be able to "still" your mind and body.Thank you for this.

Chris. So useful to actually read about something that has worked. Tried and tested methods are what I was hoping for here,so this is terrific.We owe it to ourselves to take care of our bodies,which ,lets face it,we push to the "nth" degree until the point of exhaustion.The only way it can protest is by breaking down I guess..so rather than see a session at a salon as a luxury,I think we PD folk can view it as an extension of our medicine.
I am so glad you have finally begun to experience some relief from the wearing effect of pain.This is a great start to the healing process and to managing rather than accepting of what we have been given.You clearly have a zest for life which makes PD a difficult illness to cope with.When our minds are still as bright and alert,and we remember and reflect on what we "used to be able to do" but no longer can,that is tough to work around.But I see the change as giving ourselves the opportunity to do something different.Letting go is hard,but with support and encouragement ,the transition can be eased a little.Thank you for your valuable input.

Ibby. How true your words are.I was especially drawn to "skeletal allignment" for it was the addressing of THIS ...that turned my world around.I have repeatedly told the story of how,a few years ago I walked like a wizened old lady...needed a wheelchair and could only tackle the stairs on my hands and knees.It was my sister in law,a physiotherapist of remarkable skill,that drew my posture and worked on re-aligning my crooked and twisted boody.I have described this former "me " as nothing shorot of "QUASI MODO".
My back was hunched,my right arm permanently glued to my right side or more often,across my body.Losing this b alancing tool[your arms swing to give you fluidity] my walking was laboured and I lurched rather than walked.
When she was through with me I had got back my catwalk wiggle and could sashay quite smoothly down the street.It was a wonderful feeling of liberation and I also was able to run which I had resigned myself to being a thing of the past.
You are spot on with your reply,Thank you so much.

Steff
x

[Ibken]

Steffi,

You found the magic!

Can you and/or your sister-in-law say what was done and generally advise me on how to do the same?

The past couple of years I've had a lot of upper cervical chiropractic work and believed it was why I was feeling so well. I went from 3 years of not driving (because I was at home crawling around on the floor!) to driving unmedicated for up to 2 hours on mountain roads... From 95 lbs to hmm.... almost buff at 115, and again able to walk the mile around my block... and even socialize a bit.

Last Fall after a tiny slip/bump while exercising - which I thought of no consequence until the next morninig when I immediately began having trouble walking. Now 6 months later, I'm walking part time, crawling some. The hugh increase in tremor has me close to 95 again.

I've been trying different therapies all along with no improvement. It's getting harder and harder to access- and pay! - for them.

Am spent for now. Thanks for this thread, Steffi.

Ibby