[steffi 001]

...has made me think.And if I were to be honest...[up until now I have given little by way of deep thought as to the implecations PD has for my future] Rather I have dodged and twisted,accomodated each new change in my body,fought for strategies to manage every little change that is occurring now on a daily basis...and have just sort of "accepted" that THAT is how my life will continue with this disease.
But continuing my sentence...if I were to be sickeningly honest,look at PD in it`s rawest ,ugliest state...it is a disease that aims to catch you out,it tries to outwit you.Just when you think you`ve got a grip on managing yet another symptom,another loss of muscle control...when you think you`ve discovered a sleeping/resting/standing position that affords you a modicum of dignity,brief respite from pain,when you allow your guard to drop and deliver a hint of a smile that you`ve "cracked" it...this insidious worm venemously homes in on another piece of you,and works it`s destruction.
It is this facet of the disease,this "unknown" quantity...this unpredictability,this cycle of ; reallisation that today something feels more difficult than yesterday...then mentally accepting it...next comes the coping strategy...the trying out of various mechanisms until you hit on the right tool for the job..and then...the next day,starting the whole exhaustive process again.
Despite my burst of energy...despite my delight in re-visiting briefly,the things I could once do with ease,and kidding myself that somehow I might just dare to hope that THIS TIME...I won`t see my abilities to iron,cook blah blah blah...slip away yet again...but that I will,instead, remain permanently "able.". ..I know in my heart that PD is not a permanent,dependable state that you can ever be at ease with.
So folks..what do we do? What indeed are our choices?
Do we give ourselves a break,and give in,accept defeat,let this worm take over?
Or do we continue in our attempts to stay one step ahead? Or leastways aim to keep up with it?
Sadly we know all too well the meaning of the phrase "Think what tomorrow might bring" and it sure ain`t going to be something that has us jumping up and down with joy.
But you know what? While ever I can still smile...while ever I can gush over banal things like doing the household chores,it keeps me in tune with normality.I still have that thread of hope and that feeds my grim determination.
Reflecting? I don`t like it. It brings into touch the harsh,cold reality of this s*** of an illness.And if I think too hard,analyse too deeply...I will curl up and admit defeat.
Sorry...just fell into this mode of thought....just wanted to share.
x

[pegleg]

Steff quoted:
I have dodged and twisted,accomodated each new change in my body,fought for strategies to manage every little change that is occurring now on a daily basis...and have just sort of "accepted" that THAT is how my life will continue with this disease.
But continuing my sentence...if I were to be sickeningly honest,look at PD in it`s rawest ,ugliest state...it is a disease that aims to catch you out,it tries to outwit you.Just when you think you`ve got a grip on managing yet another symptom,another loss of muscle control...when you think you`ve discovered a sleeping/resting/standing position that affords you a modicum of dignity,brief respite from pain,when you allow your guard to drop and deliver a hint of a smile that you`ve "cracked" it...this insidious worm venemously homes in on another piece of you,and works it`s destruction.
It is this facet of the disease,this "unknown" quantity...this unpredictability,this cycle of ; reallisation that today something feels more difficult than yesterday...then mentally accepting it...next comes the coping strategy...the trying out of various mechanisms until you hit on the right tool for the job..and then...the next day,starting the whole exhaustive process again.
Despite my burst of energy...despite my delight in re-visiting briefly,the things I could once do with ease,and kidding myself that somehow I might just dare to hope that THIS TIME...I won`t see my abilities to iron,cook blah blah blah...slip away yet again...but that I will,instead, remain permanently "able.". ..I know in my heart that PD is not a permanent,dependable state that you can ever be at ease with.


Albeit bleak, Staff, I would like to use your words when I make my next presentation. Well said!
Peg

[GregD]

Originally Posted by steffi 001

So folks..what do we do? What indeed are our choices?
Do we give ourselves a break,and give in,accept defeat,let this worm take over?
Or do we continue in our attempts to stay one step ahead? Or leastways aim to keep up with it?
Sadly we know all too well the meaning of the phrase "Think what tomorrow might bring" and it sure ain`t going to be something that has us jumping up and down with joy.
But you know what? While ever I can still smile...while ever I can gush over banal things like doing the household chores,it keeps me in tune with normality.I still have that thread of hope and that feeds my grim determination.
Reflecting? I don`t like it. It brings into touch the harsh,cold reality of this s*** of an illness.And if I think too hard,analyse too deeply...I will curl up and admit defeat.
Sorry...just fell into this mode of thought....just wanted to share.
x

Like many people with PD, I have times where the symptoms aren't too bad and I feel that I could go back to work. The next day I feel like I've been hammered and am being punished because I had a good day.
So what do we do? I've learned to take this disease one day at a time. If I feel like taking on the world today, I do as much as I can while I can. I know that in the next hour, day, or week that PD will be back in control and my activities will be limited. I just don't worry about getting everything done at once. Tomorrow will be another day. Enjoy it while you have it.

GregD

[steffi 001]

Thank you for your replies.I don`t visit this "bleak" [an excellent choice of word Peg...for that just about sums PD up] mode of thought very often. I usually remain upbeat.But it does no harm I guess to let others know the harsh reality behind the brave faces we put on...and for folk to know PD isn`t just about the odd tremor here and there.Oh if it was just that.....
Funny...when I begin to tell people what it is like ...the number who say "Oh...I didn`t realise. I thought it was just....etc etc."
Well no. It`s not just......
It is far more than "just" anything.
And it sometimes needs to be said JUST what we have to cope with on a daily basis.
Peg...please take whatever phrases you need,or what would be useful to convey life with this illness.
Greg...I agree with you. We can`t plan.We have to live in the moment.
You are so right in what you say.
I have had almost a fortnight of highly charged activity and loved every moment of it.
Today I am choosing to be quiet.I am not comfortable with my subdued mood.It is not typical of me.But I am sure is a result of thinking too deeply.I will see today through and then shake off the dust and be back on top tomorrow.
x

[proudest_mama]

Peggy,

That is just too cool that you do this! It's needed and if it educates even one person, you will have achieved something good.

For me, PD is an unknown and the unknown is often scarier than the known. Even more difficult is that each person has different symptoms, we each progress differently, we each take different medications, etc. As an example, my daughter (18) attended one of my neuro appts. and walked away upset. She said, "Mom, he didn't really examine you, didn't really discuss anything, so what's the point."

I tried to explain to her that because each case is so very different, it is up to US to initiate a discussion, and for US to tell him what bothers us. How many other diseases are like that?

At the same time, I try to see the "blessings" behind having PD. It truly does help me keep my priorities in order. I am also very, very thankful that it's a long-term degenerative disease instead of something like cancer.

I have tremendous faith that I was given this disease for a reason ... look at how many people's lives I'll be able to impact between now and then.

But the one thing, above all else, that needs to be mentioned is that SO VERY MANY OF US WERE MISDIAGNOSED simply out of ignorance. My first neurologist refused ... flat out refused ... to give me a diagnosis. Was it done to spite me? Absolutely not. He honestly and truthfully believed that I didn't have it ... in his eyes ... I couldn't have it because I was simply too young.

My engineering husband believed him, my soon to be engineering daughter the same, my marriage counselor was beginning to second guess me, my pastor, and even my own family. I was living an absolute nightmare with no one to turn to. I was also accused of "neuro shopping" to get the diagnosis I wanted. (Yeah. Right). To this day, I continue to see that neurologist (I see both), to enlighten him, and to prevent another patient from having to go through what I did.

Ironically, when I DID get a diagnosis, the first neuro was totally floored. Like I said, he truly believed what he said. The very next sentence out of his mouth was ... "Well, Baylor has better lawyers than I do." at which I told him that I simply wouldn't sue anyone unless it was blatantly done with no regard to the outcome. We all make mistakes and his was out of ignorance.

If you can somehow use those comments, go for it! I'm sorry that it's not concise.

Best of luck to you, Peggy, and please continue to enlighten people!

Terri
aka proudest_mama (age 43 symptoms began, age 44 when finally dx)