May seem like a downer but its not....
 

Hello Pixie family/friends,

My health continues to be an issue. I have several different major things going on but this thread is about one of them....Parkinson's. While that is usually thought of as an old people disease there is also 'young on-set Parkinson's'. Which Michael J. Fox and I have in common. I was diagnosed at age 45. It is a progressive disease which they say doesn't shorten your life, just makes whats left of it miserable. And they are right!!

I have all of it, the stutter step, the freezing gait, the Parkinson's stoop, the tremors, the speech troubles, etc and the loss of balance/falling!! I am peeked out on the meds that are currently used. I have more what is called 'off times' then good. Sooo... I am having deep brain surgery. Well I have signed up for it anyway. Have to go through some testing first. Completed most of it. A 3 hour psychological test is next. If I'm found to have any mental illness they won't do the procedure. I've signed the release forms already though.

The surgery itself is scarey but I can't wait! This is something I want so much! It won't be a cure but will put me back to where I am when I'm at my best now. Which is good enough for me. It with give me a few years of a better quality of life then I have now. :) It is progressive and will continue after the surgery. :( But we're not gonna think bout that.

As for the procedure itself... my husband and I have met the neurosurgeon he explained it all thoroughly and we have a lot of confidence in him. I have agreed to be part of a case study which will help them learn more about the brain. I will be playing a sort of video game during the procedure. I told the doc. I generally suck at video games. He said thats ok, I don't need to win, just playing it will give them insight into the brains working. I figured it would be good to help the docs gain knowledge but also by playing this game I will be distracted from whats really happening.... People poking around inside my skull. LOL

No date is set for this to happen yet, have to finish the testing first. But I'm hoping for Jan. or Feb. of 2009. I'm scared to death but I've never wanted anything more. Just wanted my Pixie family to know whats going on with teddy.

*hugs* to all of you
:) teddy :)

Teddy Bear,

I hope you get your surgery, and it is as beneficial as it can be.

Good Luck,

John

Teddy Bear,

Whatever it takes to maximise quality of life.

BTW, have you checked if they have the new game from SOFA Associates, "Pin the penis on the Pixie"?

Uhh Teddy maybe you should not mention Pixies, the Docs might not be able to concentrate on the surgery, they may be looking at the 2009 Pixies Lady's calendar.

Hope that you get to have the surgery and that it does all that you hope it will. Sending prays & good vibe along with some hugs(((((hug)))))

((((Teddy))))

Teddy Bear I'm sorry to read of your illness and what you're going through. It sounds like the surgery will be a good thing, even if not a permanent fix, and you sound very positive about it, which can only help :nod: It's great that you'll be part of a case study, ultimately helping many people in the future by giving valuable information to those carrying out the study :)

I wish you all the best for the psych tests and hope you can go on to have the surgery. I wish you well for the surgery itself, too

Pixies and neuroscience have a long standing relationship. I hope that you have great results and a long less torturous life. ((hugs))

Is anyone else worried about the prospect of actually finding out how Teddy Bear's brain works?

I was able to get a preview of her MRI.

I'm really looking forward to it. :loveshowe

I'm praying for the best possible outcome and that the Dr's will learn much while studying your brain activity. Thanks for letting us know! Keep us updated, please. ((((Teddy)))

Now they will find the elusive perv cortex :p

Hi Teddy,

Sorry and glad in equal measure to hear your news. I refuse to give in to anything bad at all, ever, and it sounds like you're the same - so MORE POWER TO YA!! :)

(((TeddyBear)))

DM

(((Teddy)))) - wishing you health

Lots of love and prayers from our home to you and your family! God bless and may everything go super well for you!

(((( HUGS ))))

Dearest Teddy;
Thank you so much for the update. I know you have been suffering for so long and I look forward to a promise of a major improvement for you. Please have your hubby or daughter keep us updated if you're unable to as we will be anxiously awaiting the results. Our thoughts and prayers are with you and your family.
Your friend,
Joe

Dear Teddy
My Best wishes for you and what you are going through. I think your are very brave to be undergoing this so the doctors can learn more..

May your surgical team be divinely guided and hyper alert to their fullest potentials. However, before that of course, may you be found to be the best most ready to proceed patient if not miraculously made renewed again, healed AT THIS MOMENT.

I seem to recall seeing a show on TV about that exact procedure...it was a few years back, so it's not like a totally new & risky procedure. It was a little creepy to see the doc poking around in someone noodle while they're wide awake, but as I understood it, that's the only way for the doc to be sure he working on the correct area of the hard drive. Whatever, here's hope for restoring a little quality of life to you, teddy...you're entitled to it.

(((((((((((((((((((((((((((teddy bear))))))))))))))))))))))))))))))))))))))))0

Teddy best wishes and know you will be in my thoughts and prayers. Take good care of yourself and if I dont talk to you before the surgery may you have a speedy recovery.


MUAH

Teddy, God Bless. Stay strong!!!

Hey Teddy Bear;
Please give us an update. I see you were on a few days ago, and we are all wanting to hear how the procedure went and how you are doing...
your friend Joe

Thank you all for your thoughts, well wishes, concern, and love! They are all appreciated and I will take all of them with me into surgery! And TY for the laughs and giggles!! Needed them!!! :)

OF – “Pin the penis on the Pixie”… LOL… I’m going to check.
Scarecrow – Didn’t know there was a Pixie Lady calendar. Hmmm…TY, where’s the
Pixie Men Calendar?
gekkogecko – hahaha - is a scary thought eh.
Lil – That’s my MRI alright!! Thought that was in a locked file. :D
DM – Never give up the fight!!

scotz – Yes, it’s been around awhile. And the thought of being awake is creepy but you’re right that the docs need to see not only if the tremors stop but also that they haven’t created new ones. Pleasant thought….not!!! But besides interacting with the patient the doc also uses an MRI and CAT-scans taken earlier which allows him to screw a “frame’ of sorts to the patients skull which he uses as a guide. And he also uses sound made by the probe. Each level of the brain ‘sounds’ different and tells the surgeon where he is. From what I understand Parkinson’s has it’s own distinct sound, so he knows when he’s reached his target.


So, I’ve been asked by several to bring you all up to date. Sorry I didn’t sooner, just wasn’t in the right mood I guess. :)

I’ve had extensive psychological testing. They won’t do the surgery if you have dementia or any form of mental illness. I guess this procedure can make it worse or cause these folks to freak out. The last test was 3 hours long on Christmas Eve. I ignored the little voices all day and boy did they get mad! lol. I passed all of the test in the high end of average, 2 were above average and one low average. All are acceptable for the surgery. Yeah!!!!

We met with the neurosurgeon again. Went over everything… again. As he said, ‘this is not a procedure you rush into.’ He made sure we knew exactly what was going to happen, what the risks where, and that we still wanted to go through with it.

Next step is an MRI on Feb. 17. This is also when they’ll put 4 screws in my head, to be used to hold a frame in place which will guide the doc on the day of surgery. (it can really be said after that I might have a loose screw) Then a Cat-Scan and blood work on the 18th. The surgery will be Feb. 25. They will drill a hole in my skull and insert the wire. A day or 2 after they will implant a device similar to a pace-maker and attach the wire to it. Then many doc visits to regulate the pace-maker thingy and any meds needed.

I’m just taking it easy for now. The procedure I’m having is called deep brain surgery (DBS) for Parkinson’s or deep brain stimulation (DBS) for Parkinson’s. A search using either should get results if you’re interested.

((((Pixies))))…. If you read all that ^ ^ ^ ^ all I can say is wow!! Thank you!

Watch for a new-and-improved teddy to be making an appearance soon. :) :)

Thank you for all that information, Teddy Bear. I hope everything goes well for you.

Wow! Absolutely fascinating, thank you for sharing, I am totally amazed at what can be done with surgery, with the human body, especially the brain :faint: I wonder how far they will have progressed and how much more they will know by the time my children grow up.

All the very best for the preparation, the surgery and your recovery, you'll be in my thoughts.

(((Teddy Bear)))

:)

Thanks first to FWM for alerting me to this thread.... I had TOTALLY missed it somehow!

Second, ((((((((((((((((((((((((((((Teddy))))))))))))))))) ))))))))))))))))

I'm so praying that the doctors are guided to the right "sound".... I promise not to send you anything that will make you moan... in case that is the "sound"! Know that we love you and will be praying for the most successful outcome...... Be brave and be strong and get better!

I think we should add your Pixie brain scan to the Pixie Ladies Calendar! That is until we get a photo of YOU! ((( you)))

Ok that has to be the ultimate perv, a Pixie with deep brain stimulation. LOL

((((Teddy)))) take care, our prayers and best wishes are being sent your way.

Now that sounds like he's fucking with your head! :sex:

Trust us pervs to find something dirty in the most noble events :nod:

Prayers are with you Teddy
 

Dear Teddy,

You know that we shall all pray for you to have a quick recovery.

I hope this surgery will help you.

Your a dear and beloved friend.

Regards,

Daniel

Thank you so much for the update Teddy. I thought the procedure was last month.
I'll try to be patient and hope for another update in a few more weeks.
We're all pulling for you.
Joe

I think you should have had the four screws put in by now. I hope it went ok and wasn't/isn't as uncomfortable as it sounds. Not long to go now before the main surgery - thinking of you (((Teddy Bear)))

Anything?

Not yet :shrug:

Grrrrrrr....
 

NOTHING!!!!!

The hospital called at the last minute and cancelled the MRI. The reason given was that they over booked and mine would be to rushed. I can understand that but when you get yourself all psyc'ed up for something like that .... geeezzz. And my hubby took the day off work to drive me so he's not real happy.

By cancelling the MRI all the other dates are changed because they have to be done in order. So new dates: MRI on Feb 24, screws put in, March 4, at a seperate visit instead of the day of the MRI, no date yet for the cat-scan. The big event, the DBS, will now be March 11th. I hope no more date changes!!


Ohhhh.... happy news though.... I have a theme song I think..... from the Scarecrow in Wizard of Oz, 'If I only had a brain...' I'm thinking I'll sing it as they wheel me into oper. room. lol.

Thank you all for your continued well wishes, good thoughts and concern!

((((((Pixies))))))

Maybe it wasn't cloudy enough today? :shrug:

Tell me, is the table on top of a platform that raises through the skylight during lightning storms? I think they are planning for the right weather to 'recharge' you. Tell them you are only there for a tune up, not a rebuild.

;)

Oh how frustrating :banghead: Fingers crossed for no more cancellations (((teddy bear)))

OK you can use my song :rofl:

Hoping that the revolving dates are over with and you don't have any more reschedules. We're 'Off to see the Wizard ...'
((((HUGS))))

teddy, you need overworked, overbooked medical staff like you need a hole in the head. er, i mean, sounds like fun. :D

(((huge hugs))) peace and luck.

Had the MRI yesterday. All went well.

Seems everything is moving along.... slowly, but moving in the right direction at least.

:)

(((((((((( TEDDDDDDDDDDDDDDDDYYYYYYYYYYYY!!!!!!!!!! ))))))))))

Let's toast your successful operation on 3/11 with a clink of our coffee cups.

:coffee: :coffee: