Suzie Moon Benefit date change

Hi everyone,

Due to circumstances beyond our control, the Suzie Moon Benefit has been moved to Tuesday, the 14th at R-BAR 218 Bowery (Between Prince and Spring)

On the upside, Fred Caputi was able to finagle an extra half hour of time on stage (7-8:30) so he hopes to expand the entertainment a bit. Please come out if you can, wallet or checkbook in hand and bring some friends. If you are unable to attend please know that we are always collecting donations. ( Checks can be sent to Janine Panico, c/o MJM Creative, 71 Fifth Avenue, New York, NY 10011 and cash can be given to Janine Panico, Jenny Moss, Leona Brown.)

Thanks to all who have contributed so generously. Ms. Moon is doing better each day we see her but money is and will continue to be a major factor in her recovery. So come on out, tell friends, family , strangers:)))) Can’t wait to see everyone. More fundraisers will follow soon!

Thanks for the continued support for Suzie .

Monday Visit with Ms. Moon

Hey all,

We saw Suzie Monday. She was having a very stressful day but she was saying alot of new words and boy was she moving around. I actually was shocked with how much she was moving. she literally was trying to get up. hopefully Suzie is having a better day today but overall she looked great and is getting healthy more and more everyday. Noelle is making a little snack for the nurses as a thankyou for all their help.. (thanks Noelle) Also There is a very good chance the event on oct 15th may be changing so please stay tuned for updates..

xoxox janine

Sunday Visit with Suzie

Just came for visiting with Suzie.

She looked good but tired.

She kept saying " You Far" as she tried to set up or as she raised her hands.

Several times she would say gibberish and look at me and laugh with that "Suzie face".
It was like she knew what she was saying was gibberish, but she didn't know how to make it right.

She also said " You work" followed by "You Far"

She never said "Fuck" . She smiled when I told her I had heard that a lot of people had been to visit her. Everytime I mentioned someone's name she smiled.

All in all a good but short visit.

Kay

Our Visit with suzie

What a great visit we had tonight. Noelle, myself and pam walked in Suzies room at about 4:30pm. we walked in to a smiling suzie moon. she looked at me and said " you came wednesday" i smiled it was the first time i have heard suzie speak a sentence. she then as with her visit with betty continued to repeat your awesome! i told her i agreed that i was awesome.. lol haaaaaaaaaahahaha but then told her not as awesome as her. she cried maybe twice but i just called her name and stuck my tongue out at her and she laughed. she laughed alot with us but contined to say your awesome! at one point we decided to show her two pictures from the book we put together for her. Danuisa was first.. she looked and smiled at the picture (noelle said "suzie look Danuisa") and then clear as can be suzie said Danuisa" Our second picture was Ms. Jenny Moss she smiled again and almost was able to say jenny's full name. we stayed not to long. noelle read a card her and pam wrote and we talked to her for a bit. I think she said fuck maybe twice but we mostly got your awesome.. suzie is most def there and she is trying her best to make out words. she looked great, and she looked so much more rested then yesterday. i think the late visits were a great thing. Many of you have been asking about weekend visits . we beleive the times are the same after 4pm is best... have a great weekend everyone. can't wait to hear what suzie's new word is monday:)

My visit with Suzie

I just got back from my visit with Suzie. This visit was an emotional one.

When I first walked into Suzie's room, she was repeating the word "fuck". When she saw me, she said, "You are apple". She kept repeating this while her voice continuously got louder. After a while, she would calm down, drop back to a talking tone but continuing to repeat, "You are apple" again in a louder and louder tone. She looked quite upset. While repeating this, she raised her left hand and reached high up in the air. She also lifted her head and shoulders off the bed as if she was trying to get up. I didn't know what to think. I was amazed at her physical abilities but I was upset that she seemed upset. I kept saying, "I am Betty, Suzie." After a while, I just resigned to said, "Ok. I am apple."

After 10 minutes, I decided to leave. As I walk by the nurses' station in tears, two nurses asked why I was leaving. I told them that I did not want to upset Suzie and tire her out. They asked me if I could stay longer and told me that I was not upsetting Suzie. They said that she cries when she is alone. So I turned around and headed back into her room. I ended up staying for another hour. That hour flew by.

Upon seeing me again, Suzie smiled and said, "You came. You came." Then my waterworks started again. I told her that she looked awesome. She then repeatedly said, "You are awesome." After a while, it became a question. "You are awesome?" I told her that she is amazing. She said, "You are amazing?" It was as if she was trying out the phrases. As I talked to her, she smiled a lot. I could tell that she understood me as she responded with facial expressions. She also made a few attempts to ask me some questions.

Suzie is there and can understand me. She might be having trouble controlling what's coming out of her mouth and she's very frustrated with trying to find words to express herself but definitely she can understand me. I find it similar to someone learning a second language. If someone speaks to you in that language, you can pick up what they are saying but it'll be a lot more difficult for you to speak back in that language. She probably keeps repeating "apple" because it is one of the words she's learning during therapy. I told her not to get so frustrated with herself. She can't expect to learn to talk in one day. At one point, she asked, "Are you anal?" then laughed at herself because I don't think that's what she really meant to ask me.

She cried and said again, "You came. You came."

I said, "Of course I came. I couldn't wait to come. I'm sorry I wasn't here earlier but I was sick."

She paused and asked, "Are....you....better?" Then gave a small laugh for managing to get that question out.

I sat quietly with her while she drifted in and out of sleep. Before I left, I told her that I'll try to stop in tomorrow. If I can't make it tomorrow, I'll definitely be there on Sunday. She asked, "Promise?" Oh, I'll be there tomorrow.

I told her that I was turning off the radio so that she can get some rest. She said, "Oh-kay". It made me smile because she said it in the same tone that my 21 month old son says, "okay".

As I left, Suzie looked well. I was amazed with all I saw and heard. We were both smiling.

Hi everyone,

We just got a call fro Cindy (Suzie's Sister) they have requested that Suzie have no visits till after 4pm (not even her parents are going during the day) Suzie as been too tired for her therapy because of such active days of people in and out on top of her therapy. We ask that you please follow the family and doctors wishes for no visits till after 4pm and only close friends and family at this time.

Thanks and keep those donations coming:)

Janine

Happy Birthday to me...

Forgot to mention a great thing that happened...Cindy (Suzie's sister) told us this great story....on monday, while the speech therapist was working with Suzie, she noticed that Suzie kept saying "anniversary." The therapist turns to Cindy and asks, if it is an anniversary of some sort that just happened or today...and Cindy told her that it was Suzie's birthday on August 4. So the therapist starts to sing happy birthday. Now, Cindy's assuming that the next thing Suzie will do is to repeat after the therapist...but instead, she chimes along with the following verse, and when she gets to this part..."happy birthday to....", she finishes with "me!" and a great big smile. Suzie finished the whole song, never stopping or stuttering.

Along with the song, she recited the alphabet start to finish.

Cindy told us this in tears and said that the room was like a Korean soap-opera, Mom, Dad and Cindy all in tears.

Is that great, or what? Have a great weekend....

Family Request for Those Visiting

Hi Friends~

Janine, Pauline and I were able to spend some time talking with Suzie's sister Cindy today prior to a visit. 

Cindy expressed how much the family appreciated everyone's support but asked that we please keep our visits short - no more than 5 - 10 minutes at a time and no more than 2 -3 people at a time at the end of the day, after 4pm ONLY. The concern is that Suzie is getting very frustrated and tired as her daily therapy is very intense.  On Thursday she was too tired following an early afternoon visit with her parents and sister to complete her speech therapy. Suzie must get her rest so she can focus on her recovery. Close friends should continue to visit under these parameters as too many new faces at once might be overwhelming. We will continue to keep everyone posted as she progresses. 

We have offered Cindy the support and assistance of our community and left contact numbers with her. She told us that Suzie will be discharged from Rusk on October 23 and transferred to another rehab facility. The hope is that a space will be available at a facility in Manhattan but a location in Queens is a possibility. Again we will update as new information becomes available. 

Thanks everyone for being such an amazing support network. 

A Friend...

I visited Suzie today, she was being wheeled around the halls of the 9th floor by her Dad when I saw her. She was having a tearful, frustrating moment, but she looked right up at me when I approached, burst into tears and said, "You forget." "No, I did not forget you, honey." I held her hand and I told her how pretty she looked, she held my hand back. There were bursts of tears and "Forget" a lot...and then I remembered that I had brought her a stuffed gorilla (picked out especially by my daughter, Mabel), so I showed Suzie the gorilla, and told her that I had something for her. "She stopped crying, looked at it and said, "Oooohh....a friend." Then I noticed that she had on a little touch of make-up, so I told her how pretty she looked and I saw that she had make-up on. "Oh, you know." , she said. Then it was time for her to go back to her room, and her sister came to greet me and give me some info on how she is doing.

She's making phenomenal strides. The therapists are all being quite aggressive in getting her to do more and more. The breathing tube was removed yesterday, and her wound looked nice and clean. They were planning to take away the feeding tube soon, as well. From all other accounts posted here, I must agree - the room she is in is quite nice, at the end of the hall, private, and with large windows with a nice view. All kinds of CWA decorations, and family all around. Suzie is such a fighter, and however long it takes, I feel confident that we'll get her back. One day at a time.

I walked away from the hospital feeling inspired. Several doctors came to visit while I was there, and clearly she is in good hands.

Mia and Janine joined me after a little while, can't remember the exact words that were said, but at one point, she actually looked up at us and gave us a little Suzie-smirk.

Her sister Cindy, advised me to let everyone know that while Suzie is making great strides, she gets incredibly tired from all of the therapy and then while visitors are talking to her,  she gets very frustrated and stressed from not being able to communicate. Hence, the "fuck." I must admit, it was hard to not smile while she was going into her bursts of "Fuck", but her Dad was standing there saying, "Now, not nice words, not nice words!" Cindy did ask that we provide the therapists with a chart (she said a list of names), but the production in us has to produce something, a Powerpoint? A Keynote? Digital photos? Do we need a projector? Mia and the rest of us (met with Rick, Erin and Kathy L afterwards), decided it had to be with photos and names. I'll let the producers produce....but know that there may be a request out for some photos! Cindy also asked that maybe we try to not overwhelm Suzie with too many visits. Keep them short, no longer than 10-20 minutes, again - a detail that I'll let Mia and Janine communicate better.

I like to think that maybe Suzie knew who I was, hard to tell. Nonetheless it was comforting to see her, hold her hand, get a little smile. Hoping that she found it comforting, too. Hearing her voice, loud, strong - wow, she is something!

Like others who have posted here, I concur that it is good for her and for you to see her, hold her hand, talk to her, give her words of encouragement. Respect the family's wishes by keeping the visits short, and when Miss Suzie looks tired, it's time to go. At one point, Suzie looked at us and said, "Over." Okay, we took the hint...it was time to go.

Thank you all!

For those of you who don't know me, my name is Betty Crosa. Suzie and I have been great friends since high school so I have been very much involved with Suzie's situation since I found out about it.

First, thank you, Mia for setting up this blog. This is amazing! In addition, thank you everyone for being there for Suzie. In the past few weeks, I have been struggling with balancing the demands of my family, work and visits to Suzie. I've been so worried that Suzie is lonely and feeling guilty that I'm not spending all my free time with her. At the same time, I've also been feeling guilty that I was spending too much time with Suzie and not enough time with my husband and son. I can see now that Suzie has many great friends behind her. It gives me great comfort to see that so many people are visiting her. The blog really helps me be more informative of her situation. It's been very frustrating getting to the hospital after work and on weekends to find that the right people are not available to shed light on Suzie's state of recovery.

Since I have come down with a bad cold recently, I have not visited Suzie since Sunday. (Now that she is in the rehab, I'm afraid to get her sick, creating a setback.) So I'm in awe of the progress I'm hearing from the blog. I can't wait to see her, hear her talk and say "Fuck!" with her.

Thank you again. I cried tears of joy while reading this blog in the office today. You guys really made my day!

SUZIE WANTS MAKEUP!

If you haven’t visited Suzie yet, now is the time.

Her progress after two days of physical, occupational and speech therapy is truly inspiring.

When Mia Pinto and I visited on Monday, Suzie’s nurse Clare told us that she had started speaking – calling the nurses by name and thanking them. She wasn’t able to -- or didn’t chose to -- speak to Mia or me on Monday. But today she was talking up a storm.

Danusia arrived first, just after 12, with flowers. I arrived about ten minutes later. As I walked the corridor toward Suzie’s room I heard her voice strong and clear, all the way down the hallway. It was a great surprise.

If you’ve known anyone who has suffered a debilitating stroke, you know the process of re-learning can be extremely frustrating. And Suzie is clearly frustrated. I suspect that what she is thinking in her head is not matching what comes out of her mouth. And her frustration often results in crying, or growling with anger, or lowering her head to compose her thoughts.

Or cursing. There was a lot of cursing today. At one point she just yelled “Fuck!” And then variations on it, i.e. “fuck it” and “fuck this” and “fuck you.”

So, if you visit and she tells you to fuck off, don’t take it personally.

But she is speaking, saying words, phrases, the beginnings of sentences. That is huge, and bodes extremely well for the future. She is determined to communicate. And she wants to ask questions.

Suzie said to me, “Forget. Did you forget?”

“Did I forget you?” I said. “Of course not.”

“Did you forget,” she repeated. “When you had an…”

The word she said next sounded like aneurysm. When I visited on Monday I had told Suzie that I had an aneurysm too, back in 1997. Unlike Suzie’s, mine was discovered before it ruptured, and treated before I had any lasting neurological problems. But she must have remembered that conversation, because she asked me about it.

And then the questions kept coming.

She asked me if I was “fucking my neighbor.”

“I will, if she’s hot.” I said. Suzie smiled.

Then she asked me if I was gambling. Suzie has done enough shows with me in Vegas to know the answer to that question.

I asked her if she was hungry and she said, “McNuggets.” She and I had talked about how hard it is to be stuck in the hospital, watching TV commercials for fast food. Later on she said “hamburger.”

And she also said some things that I didn’t understand. She kept saying “Eunice” and repeating the numbers 52820. If anyone can shed any light on these mysteries, please do.

Later on, I grabbed a tissue to wipe her nose and she said, “Makeup.”

I asked her if she wanted makeup and she repeated it. “Makeup!” A few moments later Patty Chabrier and Erin Aftisse showed up with a Sephora bag – FILLED WITH MAKEUP!

Great minds think alike.

Suzie’s mom told us that Suzie had had a few sips of water yesterday. She’s still being fed through a feeding tube, but something tells me a 6 piece McNuggets is in her future.

I was very nervous before I went to see her on Monday, and now I can’t wait to go back again. I can’t wait to see how she progresses -- and to help her with that progress.

Quality NOT Quantity....

Just came from a the best two-three minute visit ever!  She was in the middle of physical therapy and the nurses were kind enough to let Kevin Corstange & I say "HI". She was sitting up in her wheelchair and struggled a bit to say something.  She conquered the moments of  struggle & frustration with "Very Best Friends".  It was so great to hear her speak.  We both gave her a hug and a kiss and let the therapists do their thing.  It was a tearful walk of joy to the elevator for both Kevin and myself.  Goes to show you it's not the length of time you share sometimes, it's what happens with the time shared.   So, cliche I know but.... So, TRUE-in this case! Suzie is truly getting stronger everyday!  

Suzie on wedn. sept 24th

I went to see Suzie today,around noon with Will. She was sitting up in a chair. I gave her flowers and when I asked her if she liked them she sighed and said " Oh, I forgot flowers". She was talking a lot and when not understood she said "Fuck" a lot. I feel it's amazing how fast Suzie is recovering and that she is able to express frustration. She is truly amazing,
Danusia

Monday 9/22 the Night Shift

First, I'd like to thank-you  Mia for spear heading Team Suzie-brilliant!  Second, Danny thank you for sharing your thoughts from your journal-you are one amazing man!

Wow!  What a difference a few days, a new hospital and some physical therapy makes.  Janine & I popped in for a visit last night.  The new digs are great. Private room, three big windows and a gradually healthier Suzie.   She seemed a bit tired.  I think it was her visit with Mia & Will in the afternoon that tuckered her out.  Trying to keep up with those two chatter boxes would be a challenge.   Then in walk Panico & Moss-I do believe the mere sight of us made her roll her eyes or maybe it was the fact we kept talking over each other time and time again. 

She was asleep when we walked in the room.  She opened her eyes within seconds.  When I walked over to hold her hand-she raised her hand in mine.  It made my heart skip a beat.  This was the first time in all my visits she could physically reach up and grab my hand on her own-YEAH!  Janine mentioned some show they had done in  NJ which every time they talk about they still laugh.  Yet another eye roll from Ms. Moon.  The TV was on and there was a commercial for Dancing with the Stars.  I said "Hey, maybe they would be doing some Salsa Dancing later" & "I bet they couldn't hold a candle to you and your shimmy-shake"?   I got a recognizable Suzie grin.   As we said good-bye and wished her sweet dreams-she gave us a wink.  It could have been a twitch yet it seemed very deliberate, oh so we'd like to think?  

That's the Monday night update.   Look forward to hearing everybody else's experiences along the way.

 

A Brand New Day - Monday, Sept. 22

Hi All,

Will McKinley and I just returned from a visit with Suzie in her new digs and I could not agree more with Kay's previous posting. This place is terrific and Suzie looks and seems much improved since my last visit at the hospital. She was just finishing up with some therapy when we arrived so we spoke briefly with Suzie's Dad before going in to visit. He is also in much better spirits and is encouraged by her progress. 

Suzie is in a lovely private room with excellent light from three windows. She was sitting up in a chair, in real girly pj's, looking fresh and lovely. I am happy to report that the CWA sign we posted back at the hospital made the trip with her and is posted along with photos of Bananas the cat and some snapshots of friends. Her color was much better and there were fewer tears - she made some attempts at speech and we're told by the nurses that she can speak when the breathing tube is removed. 

The head respiratory therapist came by during our visit and informed us that the prospects for taking her off the assisted oxygen are good and they will be working aggressively towards that goal. In fact the desk nurse Clare said that Suzie has been talking and had said her name. She attempted to get Suzie to say my and Will's name but Suzie was not quite ready for that yet - we think it's the production professional in her and she won't indulge us until she is confident and ready. All in good time. 

Everyone we encountered was friendly, encouraging and open to sharing information on her condition, treatment and progress. Our hope is that during future visits we can get a sense of the overall prognosis, continued plans for rehab and ways we can best assist Suzie and her family in achieving  her goals. 

Visits are encouraged by all, two at a time - therapy schedule is posted in her room and also on the large board by the nurses' station. 

Go Suzie!

Mia

Doug and I just came from a visit with Suzie.

It was wonderful.
She looked great. Her color was good and her eyes were clear.

Her mother told us she had just finished therapy so she was very tired.

She recognized us and smiled as we talked with her.

When I told her that the client loved the video that she had worked on she smiled and squeezed my hand.

She was so much better than the last time I saw her. It is very encouraging.

I encourage everyone to go for a short visit.

I think it will do both you and Suzie good.

Update Sat 9/20

Saw Suzie this afternoon at her new location in the Rusk Rehabilitation ward of the NYU Joint Disease center on 2nd Avenue and 17th Street.  When I arrived she was sitting up and in an adjustable wheel chair.  Her Dad was there.  He went to go get some lunch while I visited with Suzie.  She seemed good, though a little tired - I think it's been a big few days for her.

Note:  Her room is #923 and is a private room instead of a shared room as originally posted.

After 15 minutes or so her Occupational Therapist and an intern came in to move her back onto her bed.  Afterward I talked to her therapist who told me Suzie had been in the chair because she'd met with a group of therapists that morning so they could assess her abilities and needs.  Suzie will start working with those therapists tomorrow (Sunday).  And while they won't have a set schedule for her therapy until they have a better idea of her high and low energy points during the day, she will get 3 hours a day of therapy (which is excellent news).  As a result, during her 'non-therapy time' she'll probably be pretty tired.  We shouldn't be surprised if she seems exhausted or sleepy when we visit.  Resting in between the therapy is a big part of the process, the therapist said.

She also said that good visiting times are between 12-1pm and after 4pm because the therapists have lunch between 12 & 1 and leave around 4.  Only 2 people can be in the room at a time.

Also, Suzie's right hand is currently in a 'cushion'.  Her right arm is less mobile than the left.   The cushion is for her comfort and to keep her nails from digging into her palm - it's not a 'splint' as I had originally thought.

She seemed very well though - it was good to see her in an atmosphere that felt very positive and healing.  This is such a great change and I'm looking forward to seeing its positive effects as the days and weeks progress.

kevin c.

Thank you all!

I want to thank everyone who has kept us all informed about Suzie and also set up this blog area. This is a great idea.

I have read the posts and everyone's comments, and you are all such great friends and supporters of Suzie as well as each other. I'm honored to have been invited into this wonderful group of caring people.

I have a few meetings coming up in the city next week, and I look forward to stopping by and seeing Suzie. When I return, I will post something here to let you all know about my visit with her.

Danny, the thoughts that you wrote about from your journal are really special. Thank you so much for sharing that with us. It really moved me and reminded me of how much I care about Suzie and miss seeing her on the road!

Still thinking about Suzie and hoping to see her soon!

Take Care everyone!
Duane

Suzie's Moved!

Friday, 9/19 -- 2:00pm

Suzie has been moved from the hospital to Rehab!

Joint Disease

301 East 17th Street

corner of 2nd Avenue & 17th Street

tel 212-598-6262

Room #930

Bed #2

nurse station tel: 212-598-6414

Visiting Hours: Sunday thru Saturday -- 11:00 am-8:00 pm

YEAH SUZIE!!

physical therapy

Welcome to Team Suzie

Hi Friends,

In an effort to keep everyone up to date with Suzie Moon's recovery we are starting this blog. This will enable us to update each other on Suzie's progress without relying on individual e-mails and forwards. 

Posts can be added following visits or updates. The blog will also function as a means of sending messages of encouragement, gossip, on-site shenanigans (what?!) and the like to Suzie which can they be relayed by those visiting her at any given time. 

We can also share information about fund-raisers and resources to aid Suzie and her family during her recovery. 

 

Will McKinley and I hope to visit the hospital later today and an update will follow. Please pass this link along to all concerned. 

Thanks all,

Mia