Talked to Carolyn in Hospital

[jeanb]

I just spoke to Carolyn at the hospital. She is still in ICU. They are watching her carefully. Yes, she still has a head-ache, but she is doing OK.

I'll call again later on today to check on her.

:hug: warm wishes to Carolyn & Dottie & the other heroes who are participating in this trial.

best,

[jeanb]

bump to the top

[pegleg]

i finally talked with her. she is back in ICU because she passed

she is diabetic but they arent sure why

prayers and thoughts for her please

Peg

sry not at home and typing on little keyboard

[aftermathman]

Any update, is she still in ICU ?

Neil.

[paula_w]

Just spoke with Carolyn. She had a seizure, which the doctor described as a set back, but Carolyn wasn't sure what that meant. Her PD symptoms are not bothering her at all. She doesn't have pain; sounds tired but I made her laugh.

Talking on the phone is a challenge for me when dyskinetic, and I had a little bout of disconnectesia.

I told her you were asking about her,
paula

[EnglishCountryDancer]

Please tell her that all around the world people are thinking and thanking herAcross the big pond I am sending strong messages of hope and love.Barbara

[Judith]

Thanks for updating us, Paula.

I've had her on my mind all week and was hoping for some information. Sounds like mixed reviews. Is she still in ICU?

If you or Jean or Peg talk to her, please pass along good wishes and love from the Edge of the Forest gang. Thanks!

Judith

[paula_w]

They told us she went home when we called yesterday, but we only got the machine at her home.

Today we discovered her new room number at the hospital, so I don't think she is in ICU, but I forgot to ask.

I will definitely pass on your messages!
paula

[jeanb]

Carolyn's daughter is with her now, and she'll be spending the night.

Carlolyn will stay in the hospital another week. The doctor says she is doing fine.

I told her eveyone on Neurotalk sends their best wishes to her. :grouphug:

[jeanb]

I got a phone call from "the other grandmother, Robin" who reported that Carolyn continues to improve. Carolyn's daughter, Leslie contacted Robin to say that Carolyn is much better this morning!!

:grouphug:

[Dottie]

Hi everyone -
Well I did it!! I had the Ceregene procedure done at the same hospital, with the same surgeon and surgicial team that treated Carolyn.. I had mine done on the 26th while Carolyn had hers done the 18th I believe. I talked to her on the phone a few times but she sounded exhausted. On Sunday the 25th my sil and I went into Philadelphia to see how she was doing. We found her in the gymn-between exercises but she still seemed tired. They put her through her paces on the balance bars(she did quite well) and we left shortly afterward.The next morning I had mine done. I had to be at the hospita l at 5:30.

My procedure was uneventful - they put me to sleep around 7;35 and I woke up 8 housr later. They told me my first words were - are my eyes puffy? and "where's Linda?" a nurse on the floor. Knock on wood I haven't had any problems. Tomorow I can wash my hair (that should be interesting) because of the staples. I've had no pain which seems to surpise those that ask. We arrived home around 2:o0 this afternoon - Gee did that feel good!!

[jeanb]

Dottie,

it is so good to hear from you!! congratulations!!!

Thanks for letting us know how you are.

best wishes to you, :hug:

[Thelma]

really glad you are okay. take it easy now and don't push it till you have had a few days post op.

Glad you are back Thelma

[paula_w]

Good for you Dottie! I hope you keep sharing with us about this significant trial. We are all hoping for the relief so many are striving for. I'm proud to know you - well cyberknow you..lol

Best wishes for great results!
paula

[oyster]

good going dottie, you sound good. take it easy and give yourself a pat on the back.

[Suffolkchris]

Dottie/Carolyn

You are both amazing.
You give us all hope.

There are so many remarkable people here.

I wish you both all the very best.

Chris

[aftermathman]

my utmost admiration and respect.

Good luck to us all.

Neil.

[olsen]

you are both my heroes. madelyn

[pegleg]

Many others here and I appreciate the update on Carolyn. Dottie, we especially thank you for making a personal visit, even after your surgery. Your procedures sounds as if it went well. And prayers are being answered for Carolyn. I tried calling while on a trip, but got no answer. So this really helped ease my concerns.

:) Peg

[Dottie]

Thanks everyone for your kind words. We will now have to wait and see if there is any improvement. My neuro stressed that this was not an improvement overnight procedure - rather it was slow and progressive .
My stitches come out on the 5th of July and then I go back on the 10th of July for a follow-up visit. After that its evey three months.

[Dottie]

Hi -

I hope I didn't mislead you - I went to visit Carolyn Sunday the 24th and had my surgery on Tuesday the 26th.

Dottie

[pegleg]

Dottie
that's even MORE impressive! Knowing (and seeing) that you were taking a risk, you still did it. Your are my kind of person!
Peg ;)

[maryfrances]

Thank you, Carolyn and Dottie!!!!
You are in my thoughts and prayers.
Speedy recovery to you both!

Mary :hug:

[Judith]

Just wondering how Carolyn is doing and whether she is still in the hospital.

Could Paula, Peg, or Jean please fill us in?

Thanks,

Judith

[jeanb]

Carolyn got to go home last week, but I just heard she went back to the hospital for more tests. Her family is with her, and I know that means a lot to her.

I have spoken to her recently, and she sounds better - I believe she IS improving.

We love you, Carolyn!! Best wishes to you!!

Everyone, please keep her in your thoughts and prayers.
:grouphug:

[pegleg]

Carolyn is back in the hospital - mostly for precautionary reasons by her kid's requests.

I talked with Carolyn a long time today. She sounds very tired but is cognitively more alert - not giving short yes or no answers.

Here's all they know:

She fell AFTER the surgery and AFTER she came out of ICU (she was in what you call a step-down room. I don't think anyone was there. She has no idea what happened, but when she fell, she hit her head. There was no cut but a hard fall. They are speculating that she had a seizure - pretty common, they say, with insults to the brain.

For a while Carolyn was very "out of it." She could not carry on an intelligent conversation, nor could she do simple things like fix something to eat or take care of daily hygiene. :) Thank God that is clearing up. They (her medical team and family) will decide over the weekend and based on how much she improves, whether she needs home care 24/7 - hospitalized skilled nursing care - or just a little TLC.

She gave me permission to tell you this.
Peggy

PS - she said to make it clear that her problem had nothing to do with the gene therapy - it was just an unfortunate set of circumstances. Keep her in your thoughts and prayers

[LING]

Thanks to Carolyn, Dottie and other heros who venture the clinical trial in finding a cure/ treatment to PD really deserve our respect, applause and care. Hope all of you have a healthy recovery!

Remarks: I am a PD living in Hong Kong. The PD community in Hong Kong remains very silent here and there is virtually no R&D in PD treatment :(

[Judith]

Peg,

Thanks for updating us. I'm sorry to hear about Carolyn's fall and the problems she has had since then. I hope they will quickly get her the help she needs and that she will recover completely and very soon.

If i'm interpreting your message correctly it sounds like there was a step down into her room.I wonder about the wisdom of putting a person with PD or anyone who has had brain surgery in a "step-down room" where the chances are greater for a misstep and fall.

Judith

[AnnT2]

I think step-down is a term for a less intense care room. It is between ICU and a regular room and patients are transferred there when they do not need the all-out care of ICU but are not ready to receive the reduced attention given patients in a regular room.

Ann

[Chemar]

My best wishes to Carolyn for a speedy recovery from the fall.

You are one really courageous and pioneering gal, Carolyn!
Hoping the gene therapy proves effective and shines another ray of hope for all PWP

You remain in my thoughts and prayers

Cheri

[jeanb]

I just got off the phone with Carolyn. She is in the hospital until Monday. She'll have another MRI. BUT she sounded GREAT. Back like her old self. and they are hoping after she leaves the hospital on Monday she'll get to go home!

love & best wishes to you, Carolyn :hug:

[Maureen]

I'm so glad to hear that Carolyn sounds like her old self. She's one strong lady. Thanks for sharing this wonderful news.

Maureen

[Stitcher]

Wow...and thanks everyone.

I truly don't know what to say in reply I am at a loss for words...hard to believe.

:grouphug:

As Jean stated above, I did anticipate going home on Monday of this week. Even my daughter expected it to happen and didn't leave for home until long after dinner. I was quite disappointed to say the least. But my at-home out patient services didn't come together soon enough, so another night in the hospital.

It was awesome to speak to those who called on the phone and with each phone call I would hear that I was sounding more and more cognitive...steroids at work.

Dottie, no matter the date...taking the time from your pre-surgical schedule and that golf tournamentyou were to go to visit with me...:Thanx:...I wasn't even sure if I sounded coherent when you found me in the PT Gym that day...I believe I was still in my yes/no phase.

:partytime2: So now it is time to party??

[jeanb]

WELCOME BACK !!!

IT IS SO GOOD TO SEE YOU POSTING. :hug:

WE MISSED YOU :grouphug:

[Stitcher]

Keep your fears to yourself, but share your courage with others. ~~Robert Louis Stevenson (1850 - 1894)

Linda H said by email a couple of weeks ago that I was so brave, I replied that I was not brave in any way. In return she explained to me that what she meant was that I was someone she wished she could be. (I am not quoting here, but paraphrasising a bit.)