NeuroTalk Support Groups - Weekly Check In Jan 11-17, 2009

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- - Weekly Check In Jan 11-17, 2009 (https://www.neurotalk.org/parkinson-s-disease/69286-weekly-check-jan-11-17-2009-a.html)

Quote:

Originally Posted by hiptothat (Post 444537)

Hello, I am a lurker since 8/07 when I was diagnosed, but this is my first posting. I felt somehow connected to this thread because, as Paula, I grew up near Pittsburgh, and when I read Evonne's gyn story I related to it. But as the surgeon! I am a gyn surgeon, which makes having PD very depressing, as my career is based on having meticulous fine motor skills. Ha ha. But for now I am doing pretty well on Sinemet, Amantadine, and Selegeline. My doctor is wonderful, he is a movement disorder specialist at a great university medical center. It helps that I have always liked to exercise or walk every day. That was the first inkling that something was really wrong, when my left arm stopped swinging while I walked, and my left toes curled and cramped if I tried to walk fast (I have not had a tremor yet). I was 57 at the time, raising two teenagers alone (dad died of Agent Orange-related lymphoma) and PD never occurred to me. What a bolt of lightning that was!

Also two weeks after I received that news I was called by the FBI and informed that my long-time stockbroker had disappeared and put all my savings including IRA and college funds into a scam investment. He's been indicted and I received a decent settlement from his brokerage co. but needless to say not nearly what I lost. So it has been a challenge to deal with loss of health and wealth in one fell swoop. I have been determined to be graceful and private about my problems, deciding that some inner grace would have to prevail as I became outwardly more clumsy! I also have always been a knitter and find that very meditative, especially since I don't know how long I'll be able to do it, realistically.

I was reluctant to post here for a long time as there seemed to be quite a few "anti-physician" writers and that turned me off for a while. But today felt like a good time to "un"-lurk!

Welcome hiptothat!..I am glad you have decided to join us..Many of us try to carry the burden alone, and pull ourselves up by the bootstraps so to speak..But it is so much easier to let go of whatever it is that keeps us in solitude, and join the ranks..Many of us have had problems with Drs, because pd is a strange disease, as unique as a snowflake to every beholder..We supposedly all have the same disease, but it manifests itself differently in every patient, and how yours is treated, will more that likely be different than mine, and custom made for your needs..And the quest to find the right wizard, who has the right treatment for us as individuals, can sometimes be extremely elusive for some of us, and equally frustrating..And you, as a Dr, with pd, can become a valuable asset to the pd community, because you have made a decision to join us..And as you walk the path of your own journey with us, you will share in the joys and challenges of our daily lives with pd through the humble eyes of an insider, who also happens to also be a Dr..We are fortunate to have you amongst our ranks, and welcome you to our community!

The Pit

i have found it
the invisible obstacle which for years
has been my bane and source of resistance.
it was nestled deeply inside of my heart
with walls built around it hiding its identity from me.
it could grow un-noticed that way
each time I reached out to grab hold of a dream,
the pit came out of hiding.
it pulled my arms back to my side.
before i could connect with life,
before i could feel reality,
before i could experience anythng detremental
to its existence.
a fear surfaced when my desire for decisions
abondoned my common sense.
the pit lay and wait and sed upon my thoughts
chocking silent my words and trapping me as its hostage.
now, it has overgrown its barrier.
being exposed to me in full portrayal,
its hold on me withers and dies.
its quest for manipulation and domination
is no longer being nursed by my sacrificed innocence.
i reach inside and pluck out its remains
and i feel myself grow.
the void left inside of me is being filled
with the truth of the life God has for me.
all thought and emotions, are exuberant
and begin to emerge freely.
i am re-discovering my being.
i am re-discovering who I am.

Hi, hiptothat! I'm sorry we've been so rambunctious with our opinions, and I hereby agree to disagree on anything we discuss, or not, as appropriate. I think I speak for a lot of us on that. We are a wide spread of ages; we come from every walk of life, and from most income levels, and I think the prevailing attitude is that we're all in this together.

Besides, anyone comes in with the honest humility you've shown is pret-ty easy to appreciate.

Glad you're visible.

Jaye

:Wave-Hello: Hi hiptothat and Welcome :hug:

My family Dr is also a family friend. He reads the posts on NT. He said it has really taught him more about the patient side. His staff too. They read about a gripe I had when checking in one day. I stood there for 10 minutes while they chatted about a birthday party. Kept telling me to "hold on". They won't be doing that again. :wink:

Yeah, we can vent or gripe sometimes about the care we have gotten. No one is perfect. Hopefully there is something to be learned.

I'm glad you came out of Lurkdom. :D

Welcome hiptothat. We are not all "anti-physician." I am glad to have you on the forum.

I have been encouraged by my neuro not to think about how long I will be able to do things like play classical guitar. I have had PD for 10 years, but I was undxed and saw a variety of doctors for 7 years. My neuro says that with meds, I should be able to 90% of what a person without PD can do. I am reading the book The Art of Possibility by Zander and Zander, which is helping me keep a positive outlook and keep working at doing all the things I want to do.:)

Welcome and thanks for joining the conversation. While some of us are compulsive advocates for change; our first reason for coming here is for hope, support and information. Running through the criticism of doctors is, I suspect, a patient perception of damaged trust and lack of compassion. We actually need more doctors' pespectives.

Regarding your pd: After 20 years, I still don't have a tremor. I get the shakes = that's the best way to describe it because it is not a regular tremor and is mostly in my legs - sometimes when I'm off in the evening. I worked as a teacher for 12 years with PD symptoms, 8 of them diagnosed.

hope you find some relief here,
paula

:(what an ordeal you have been thru Evonne. I am glad surgery went well tho, and the docs were able to remove dead ovary. How strange are the things that can happen to us. My daughter has severe endometriosis and the pain she goes thru is terrible. She finally had scar tissue removed about a year ago and it seems to rapidly coming back.
I am doing fine, still working. I have increasing pain in back and can't wait to have surgery to hopefully get rid of it.
The horrendous amounts of snow we had here is finally started to melt. Spokaneset records for amounts of snowfall awhile back. I love snow but lately I am definitsly sick of it!
I am going to try and call Dr. Santiago again Evonne for 2nd opinion. Once again I have lost his phone number. I want to get in to see him but can't because he is overbooked. The office said to call back in january and try again. Can you email me his phone no. Evonne. Thanks alot in advance :D

I wanna know somethin....How can a person dxd with pd for 24 years travel from one end of the country to the other, kick *** in lawyer ********, (sorry for profanity but i call it as i see it and wear knee high rubber boots), move 2 vanloads of items from upstairs in one house to downstairs in another, write out complete invitory of household furnishing and their value, make out a declaration for zee courts re: seperation, see 2 daughters, mother, several friends, go to the beach.. twice, go shopping , then deal with nightmare big city airports on a saturday (with a pug in tow) ALL IN LESS THAN 2 WEEKS???

how??? mind over matter... zats how..

Harley, you did all that? I hope you're not planning on riding the range too much next week, LOL. But good for you!

Evonne, oh my goodness, you deserve a good long rest after all this! I pray for your healing in body and spirit (I've always thought your mind was fine).

Today is the tenth anniversary of my diagnosis of PD. I don't know whether to grumble about having PD or rejoice because I'm doing so well compared to what I had expected. Well...yes I do know. I'm glad I have life, I'm glad I have all of you who are in this with me, and I celebrate ten years of learning and growing. By now I have divested myself of alternate lifelines, things I might have done. The life I have isn't the one that follows the script I came on stage with, but it's the life I got, and I'm living it!

A good day is one where you're above ground.
A great day is one where you get up as many times as you fall down.

Jaye

Quote:

Originally Posted by harley (Post 448511)

I was going to guess...a handsome sidekick? :wink: