[paula_w]

Second time posting - lost the first one....grrrr.

I spoke with Carolyn today; she is doing much better now. What has happened is a possibility with any surgery, unfortunately, but she is recovering much to everyone's relief. We've been holding our breath.

She had a seizure in the bathroom, and everything has been pretty foggy for her since. She bit her tongue badly. A technician found her quickly. She was left with aphasia ( word retrieval difficulties, mostly just said yes/no ) and she couldn't stop what she was doing. For example, she was brushing her teeth and her daughter asked if she should stop brushing now. Carolyn knew that she should stop, but couldn't figure out how to do so.

They put her back in the hospital, and began treating her with steroids for the swelling. This seems to be working, and she can now explain how she felt the whole time. Her son is on leave from Iraq - perfect timing, he can help her. She hopes to go home tomorrow.

Carolyn has heard that the trial has recruited all the participants (51); I haven't confirmed that yet.

So now we are back on track; back to the business of seeing if she is cured of her symptoms, or on the placebo. No one said it would be easy, just worth it hopefully.

I told her you were all hanging and wondering; she very much appreciated that, and gave permission to tell the story, emphasizing that this is a possible side effect of any surgery.

paula

I accidentally hit the thumbs down and am going to ask a moderator to remove it.

[aftermathman]

and this is a reminder of the risks some people are willing to take to help the PD community.

Good luck to all the trial participants.

Neil.

[Judith]

Thank you for going back and re-writing your message, Paula. I have been thinking about Carolyn a lot and worrying about her. She certainly has been through a tough time.

Hopefully, now she will be able to get her old life back... or better!

Judith

[Stitcher]

Yes, Neil, hence consent forms...liability, liability, liability.

Judith, thanks for the sweet note in my snail mailbox when I returned home last night.

Paula...and everyone else who kept track of me while I was away...in mind but not in spirit...LOL...Peggy, yep I did miss the PP Slide prep and Linda_H who called often.

It has only been two weeks, but what long weeks they were. My poor daughter whose birthday I ruined last Tuesday the 3rd (she is 36 now...ha ha ha)...because she had to take me in for my surgical follow-up at which time Dr. Baltuch tossed me rear end back into the "joint," not a bad idea...Although it was sort of weird...a daughter on my left and one on my right...the surgeon, the PA, the NP, the surgical trial coordinator peering at me from the other side of the exam room. Back to the poor daughter, she just knew her mom was a lost soul...lost in my mind somewhere. Unable to stop brushing my teeth, even though I knew I did need to do so.

Traumatic Brain Event...not a fun place to be hidden away into...I knew I was in trouble...felt like a small child, not knowing what to do. She actually had to take the toothbrush out of my hand.

• Surgery on the 18th
• Overnight in the ICU...as planned
• Next day in the neurosurgical unit...as planned
• Passed out on the floor in the bathroom...not planned...LOL
• Downside to experimental trial...the RN doesn't know what to do with a patient she has very little to go on when the patient has a seizure and hits the floor...I cant only begin to imagine what they must have been like for her...she was just grateful that I was breathing, etc...she certainly remembered me when I got back onto her floor July 3rd
• Next thing I know I am in the Rehab unit...and it is the next day...uttering yes and no's only
• My face was so swollen my poor daughter barely recognized me...not from falling, but from the surgery

Would I do it all again...considering the reasons I did it to begin with...absolutely!! The thought of DBS and the hardware and battery changes over the years, programming...absolutely!!

The care I received at Pennsylvania Hospital was incredible...part of the Univ of Pennsylvania Health System. Never missed a single meds dose. I am on that no-driving restriction impossed by the driviers license bureau and that taking of anti-seizure meds...ugh. For this fersely, independent person, it is going to be difficult for me to endure, but this too shall pass...don't you love it when a clique comes together! The PA was constantly asking my daughter just how independent I was prior to the surgery..."she kept track of my children's schedules, daily", I don't know what I will do if she doesn't come back from this event.

Did have a fisty roommate the past week...she valued her privacy and usually had she blanket over her head...so funny...didn't talk to me until this past Monday when she decided to let me know what a nice boy my son is (he is far from a boy...33 years). By Monday, I was taking laps around the unit. Did you know that hospital TV is poor, poor and horrible, but those beds do make up for a lot of yuck.

Not by design, but could have been that way...my son has been home from Iraq this past week...two weeks furlough. It was nice to have his company over this past weekend, especially since I was soooo far from home...3 hours.

Speech Therapy next week. Not sure I need it now, but my daughter wants it for me, it will now be so.

It is only by following your deepest instinct that you can lead a rich life, and if you let your fear of consequence prevent you from following your deepest instinct, then your life will be safe, expedient and thin. ~~Katharine Butler Hathaway

Oh yes, what Paula said above. Do keep in mind that what happened to me can be a side effect of any brain surgery. What happened to me may be nothing more than coincidental, if not a good bit scary.

[stevem53]

Carolyn..Im happy to hear that you are doing better..You are one courageous lady!..Is it too early to ask about benefits from the surgery?

[jeanb]

SHE'S BAAAAAAAAAAAAAAAAAAAACK!!

[Stitcher]

Jean, got the shirt....love the logo!!

[Stitcher]

Thanks Steve.

[michael7733]

You make the term work-a-holic insufficient to describe you. They will have to find a more intense term or at least add a word such as superfluous as an adjective. It is good to see you up-n-at-em already, Carolyn. Amazing...simply amazing.

michael b.

[Judith]

I can't tell you how good it felt to log in and see your name on a post, Carolyn. It is SO good to have you back!

Was it really just two weeks that you were gone? It seems like ages.

I'm glad to see that this Traumatic Brain Event didn't take away your sense of humor or your optimism. Thanks for sharing!

Hugs, Judith