Well, it was an exciting day at Fifth Ave and 33rd Street, and I am glad that I was not there!  Fortunately, I had left early for the hospital, so missed the commotion and started getting calls just as the news broke.

We had our own bit of excitement at the HJD!  You can see for yourself.  The video is short, but David walked across the gym space and out the door into the hall, then needed to sit for a well deserved rest.  Here is the video – the picture is on its side, but the video plays properly, couldn’t figure our how to turn it around, and quite honestly, was too tired to make myself crazy!

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Before PT he had something almost as exciting as walking happen – the barber came and gave him a haircut.  It took about three hours for David to forgive me for making him sit up in the chair for the additional half hour to get his hair cut, but by the time I left, all was forgiven (I think).

We had another visit from Chrissie McHenry, then in the afternoon some folks from UNIS including Stephen Roache and Sal Uy as well as Burke Alum Mackenzie Kruvant.  Mackenzie brought some beautiful sunflowers from the Union Square Farmers Market.  We also got an arrangement that was designed by Vera Wang, which is lovely.  Thanks Ziad and Sandra!

Today we had the family conference with all the therapists, the case worker and Dr. Qu.  Alex called in and participated, and we got basically a rundown of what has been happening since David arrived at HJD.  It was good to hear all the progress that David has made, but daunting to think about how far there is still to go.  Liat mentioned having to use some sort of speaking aide, which I hope will be a step to getting his full voice back, but any help will be great.  David’s physical recovery is moving along nicely, it is the speech that seems to be just out of his grasp, but hopefully in time.  I told him that we have to remember that with all the detours – 8 days in Albany, 5 days in the SCU, he has really only been in rehab for about two weeks, and his progress has been amazing.  He is getting a little impatient with the forward movement he has made, and isn’t nearly as impressed by himself as he should be.

At the end of the meeting, David let me know that I should tell Alex that he loved him, and I began to tear up, followed by the therapists, followed by David and as Alex told his Dad he loved him too, he sounded a little choked up.  Sorry Alex, not the best way to start working with fifth graders.

Soon after the meeting, I finally got in touch with someone at Amsterdam Nursing home, and they have tours on Tuesdays and Thursdays at 1pm, so I took a chance and called the Jewish Home Lifecare and set up a time to meet someone at 2pm, so off I went to the 1 train, and the trip uptown. I was sad to be missing David’s second day of walking, but I needed to start looking at the possibilities for the subacute chapter of his recovery.

As I walked up Amsterdam Ave from W 103rd St, I was filled with dread from what I imagined these “Nursing Homes” would be, and was not so shocked.  Maybe I expected much worse, but they are not so bad.  I think that the Jewish Home has better rehab facilities, not as good as HJD, but clean and filled with activity.  Amsterdam, not so much, and nobody was working.  Amsterdam also says that each patient gets 1/2 hour of OT, PT and ST each day for five days a week, and Jewish Home has 1-1.5 hours, 5-6 days a week, depending not the patient’s needs.  They also have the option to get a private room for $38 a day, which seems very reasonable, Amsterdam has private rooms, but it all depends on what bed is available.  I still have an appointment to see Park Terrace in Queens and will continue to try to see Village Care on W Houston St.

When I got back, David wanted to tell me about three people who had come to see him.  After much hand signaling, I figured out that it wasn’t anyone from UNIS, not from Burke and not from Fieldston.  I then got that it was one man and two women and that there was a couple and the single woman was related somehow to the man.  It finally came to me and with much eye rolling and many “come on”‘s from Davie.  It was his brother Harvey, his wife Madeleine and his sister Judy.  He said they had a nice visit.

They sent him for another CT scan because of the headaches that won’t seem to go away.  The Ear, Nose and Throat Specialist said that his sinuses looked OK, so that is ruled out.  It is a mystery and we continue to battle.  While he was getting his scan, I ran out to get some Lasagna from Bruno’s Ravioli around the corner, and when I came back, David practically devoured it!  He still has a very healthy appetite.

The final treat for the evening was a visit from UNIS alum, Burke parent and all around great friend, Chrissie McHenry.  She regaled us with stories of the families trip to London for the olympics, and visits to Italy, Provence and Nantucket for the summer.  It was great to see her, and after David began dozing off, we headed off to dinner, and had a great evening talking.  Thanks Chrissie!

Tomorrow, I WILL NOT miss the walking.  I may even bring the video camera!

Today I arrived at about 9:30am, and they threw me a curveball by starting PT at 9am.  Normally, it has been at 10, with a few exceptions, and today was one of them.  I decided to wait on the 9th floor for them to come back from the gym and not disturb their work.  When the got back, I found out that David had actually taken some steps, and I missed it!!  I am sure that he will do it again tomorrow, but Amanda the Occupational Therapist told York, the PT that she thought it was unkind of him to have David walk for the one session that I miss.  I say, it doesn’t matter, as long as he took the steps!

I think one of my favorite moments of the day was when David convinced Meliss the nursing assistant to put him back in bed, and York came in and insisted that he get back in the chair for another 45 minutes.  He was probably the most vocal he has been since the stroke trying to convince York that he had stayed up for long enough, but he would have none of it, and David gave in, but watched the clock like a hawk.  At the stroke of 11:15, he had better be moved back into bed, or there would be hell to pay!

We had another visit from Steve O’Keefe with eclairs and cannoli, which he saved for after dinner and ate one of the cannoli with Judy O’Keefe.  We also had visits from UNIS folks at different times through the day, and the group at 6pm had a little concert, which was fun!

I am looking forward to some more steps tomorrow!

This morning Monica and I went to Physical Therapy with David. He is still having a problem with his vision and dizziness. Dr Blum has order an evaluation by an eye doctor as well a a nose an throat specialist. After PT York told David he had done really well, but he rolled his eyes, and really thought he had not made any strides, which is not the case, but no amount of convincing would work. At both his PT session and his OT session he worked on stepping, and we all know where that leads – Walking! He is just being too hard on himself and is thrown by the headaches and dizziness.
Monica and I went to Eataly to pick up some goodies for David while he napped, and we had a lovely lunch in Madison Square Park, although, even in good health, I had trouble getting my body upright after sitting on the grass!
When we got back to HJD, Julie Halston was just leaving after a short visit, and Judy and Steve O’Keefe were with David. Judy and Steve shared lots of pointers and stories about Steve’s recovery this past Winter, and David and I were both inspired by Steve’s progress with Judy’s help, love and support. I hope we can do you proud!
On Thursday, we will have a meeting with the whole team – Doctors, Therapists and Case Worker. My entry should be chock full of information on Thursday night!!n

Today was a weird day. There were moments of eagerness followed by moments of fatigue, but David pushed through the Occupational Therapy with Amanda and Physical Therapy with York, where he did mostly sitting exercises. He is still complaining of headaches and dizziness. They did some scans of his brain, and we should hear the results tomorrow. Dr. Qu thinks that it may be sinus issues, which would be my guess.

We had visits from Marjorie Ellenbogen who brought David an audiobook – some mystery/spy thing but she also brought me an audio book as well – Florence Henderson’s Life is not a Stage. I asked, how did she know, am I that transparent (not to mention shallow)?? I can’t wait to hear what she says about her date with Greg Brady!

After Ot and PT and a little rest, he did well with Speech Therapy. Afterwards, Monica Miracky came to visit, and when David was ready to take a nap, we headed uptown and I had a great visit. It is great to have people to talk to who are supportive and loving. She is staying over and will visit again tomorrow morning.

I went back to HJD for an evening visit, and David had eaten dinner, and told me about his visit from Andrew Brust. He was almost ready for sleep, so it was a short visit. I think that my visits in the evening are the best, when there is a sense of calm and I can tell him about how I am doing, and what I am thinking and hoping. Dr. Karp came by and said he was doing well, and the headaches had seemed to have subsided, I think that is a good sign for tomorrow!

Today was a quiet day, but David still worked hard.  When I arrived he was beginning Physical Therapy and was using his right arm to support himself on the bed, he then was able to help more than I had seen so far to transfer from the bed to the wheelchair.  Joy came to visit, and the highlight of the afternoon was the meatball that Joy had brought with her – he certainly hasn’t lost his appetite!!  We then did some reading exercises.  He did very well with recognizing words and matching them to the pictures, but still has trouble speaking the words.  We left at about 1pm, and I did some shopping for our big meal.  I made pasta for dinner for David and me to eat tonight.  While at home cooking, Richard Olderman had a short visit, but David was tired from his morning.

When I got back to the hospital, he was complaining of a headache, and the nurse had just given him some dilaudid, but it hadn’t helped.  She had to wait until 5pm to give him something else, and while he didn’t like it, he waited, and was distracted by visits from Jackie and then by Sheila.  He really enjoyed talking about UNIS business with Jackie, and it took his mind off the headache.  We then had words of encouragement from Sheila, who suggested that we go on a short vacation as soon as possible.  David loved that idea, and I also thought it was a great, and as soon as possible, we will head somewhere that is green.  By the time we began eating the pasta, his headache was gone and he started to doze off.

Last night I found this article in the New York Times in my searching the internet on information. I think that we will continue to try to get David to sing.  I am also beginning to see if we need to supplement his speech therapy when he gets transferred.  One of the questions was how many days of speech therapy he will get once he goes to a subacute care facility, and I am looking to weigh the difference between the location of the facility and if they will allow, and how much it would cost to get a private speech therapist in.  If anyone reading this has any contacts or leads that I could talk to, that would be terrific!

Today David had a combination of Physical and Occupational Therapy, which was great.  One of the exercises that he was doing was reaching and throwing small bean bag frogs, which had special meaning, as many of you are aware.  He did very well, and was up for a while and earned an early afternoon nap.  I also did some spelling/reading exercises on the iPad, and he seems to be able to find the answers better with spoken words more than with visual cues, and is getting better at saying the words that he sees written.

He has many hills to climb and bridges to cross, but with help and the will, I am confident that he will be able to make it.  Also, last night, like St George, I killed my own private dragon, and I feel very relieved.  David let me know he knew what I had done, and he gave me the thumbs up with vigor, which made me feel even better.  Sometimes I have to use my energy to take care of myself.  Cryptic, I know, but lets just say there were victories all around!

So, it was another day.  David had a great Physical Therapy with his new PT York (Steph has gone on vacation to SE Asia – good for Steph and I asked her to bring back food!)   Fortunately she left our David in York’s capable, kind, strong hands!  He made David work, and work hard.  He did one exercise that made me start to think of dancing, which was fun.  Step, touch, etc – no turn – but. . . .  He also had Speech Therapy with Liat, and he is doing OK, but not as well as I might like, however at his afternoon’s session with Liat, she upgraded him to clear liquids, which was great news.  Sometimes he looked like he was having an orgasm when he would drink water, so it is a welcome relief for that to be allowed now.  Sip as much as you like, I say!  I just want to hear his stories.  I see a lot in his smile, but it takes so long, and I could never, even pre-stroke, tell his stories the way he would.  Today, it took quite a while to get this one out:

When we arrived this morning the guard at the front desk asked me, “who is this David Shapiro that so many people come to see?  I think I will need to go upstairs and see him”.  I told him that he was a celebrity at the front desk because he got so many visitors, and what the guard said.  When I came back from having lunch, he wanted me to find the nurse to tell me something that had happened, and I had the nurse paged so he could tell me what happened while I was gone that David thought was very funny.  Finally Carson, his nurse, came in and I asked what had happened.  He looked puzzled and said, “he ate lunch?”  An impatient David said “come on!!” (one of his favorite phrases), and Carson remembered, a guard from downstairs came up to meet the famous David Shapiro who EVERYONE wanted to visit.  So it was true, even in his current state, he is the most popular person in the building.  He certainly is for me.

Many of you have seen this, but want to share this picture from our wedding.  My favorite now.

Today was the first day back in the Neuro Rehab Unit, and it was great to see all the familiar faces – the Nurses, the Assistants and the Therapists. His leg is getting stronger every day, which is great, and I predict that he will be walking, albeit with help from two people, by the end of next week. Anyone wanna bet against me??!! Julie Halston came to visit, and as aways lifts the spirits of the both the patient and the other visitors – particularly me. Thanks Julie! Had a nice chat with Alex too, which was very calming – Thanks Alex!!

I was in for the morning and early afternoon, but ran out to have my new headshots done – yes, I need a distraction too – and returned to have a really lovely, quiet two hours alone with David after he had dinner. We weren’t really alone but with Mr. and Mrs. Lei (his roommate and his wife). Mrs. Lei and I don’t really talk much, mostly because she only speaks Cantonese, and my Mandarin wouldn’t pass the muster, but I think we have bonded. I can tell by the way we look at each other.

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I read some new cards to David and I put some of his cards back up – the ones that I had hung last Friday before he was rushed up to the SCU (the ICU that they call the Special Care Unit). Also got a gift – see picture – that was very sweet. Anyway, I am tired and heading to bed early. Good Night!

Success!!  Today, after numerous calls and hounding, the insurance company approved the transfer that the Doctor assured me he had approved.  It would have been nice to have had it done two days ago, but glad that it happened today.  We worked on some reading games that I downloaded onto the iPad.  TherAppy is the name of the program, and it is pretty good.  David was resistant to speaking, but when pushed, he did.  He also had a workout with PT before he was transferred and, I am proud to announce that he is now moved onto soft solid foods and ate a tuna salad sandwich with such vigor, I was slightly scared!!  Hooray for Liat his Speech Therapist.  She thinks that he may be able to move on to clear liquids soon as well!!  He looked like he was in heaven when he drank some sips of ice water – the simple joys!!

A group of faculty and staff from UNIS stopped by and brought cookies for the nursing staff, and to the folks who have been asking what they can give to David, I suggest food stuff for the staff on the 9th floor neuro-rehab.  One request was to include some sugar-free treats!  They work very hard with and for David, and I can’t begin to tell you how happy he is to be back on the 9th floor!

Lynne Miller spent the day with us, a UNIS Alum stopped by and Joy Rizzo also came by at the end of the afternoon.  It is hard for me, but I am reminded by Lynne not to be too easy on David and to make him work on the exercises that he is given even if he doesn’t want to do them.

David is still on the 11th floor, and not in the Neuro-rehab unit, but I have gotten a somewhat reasonable answer. Yesterday, he was ready to go, but the insurance company was dragging their feet, and last night, his doctor was concerned about his ability to empty his bladder, so they are now waiting to run some tests. Hopefully tomorrow.

The great news is the Physical and Speech Therapy continue, they just come up to him on the 11th floor. There is also the extra added benefit of his having a private room. I keep telling him not to get too used to it.

He had visits from a number of UNIS folks – Andrew and Miles Brust, Stephane Dujarric, Susan Ensler and crew. All great, and liven his spirits, thanks!

Well, today David was supposed to go back to rehab, and not sure which answer was right, but either there wasn’t a bed or the insurance company wants some more T’s crossed and i’s dotted before they approve paying for it.  I asked to speak to a social worker at about 2pm, but never saw one.  The nurse said there wasn’t a bed, but the Doctor who visited the room where he was moved from SCU blamed it on the insurance company, but at that point, it was too late to do anything, and he said he thought it would happen tomorrow morning.

My bet is on the insurance company.  Any roadblocks they can put in the way to wear you down – that’s their master plan.  And the repulsive republicans rant about death panels, as if they don’t already exist and profit is their only goal.

Anyway, tomorrow, he will be moved to the rehab floor, or I will become Shirley MacLaine again, and nobody wants to see that.  Well, maybe some people do, but. . .

David continues to be more upbeat that the world deserves, and tells me  at a certain point that I should leave and have a drink!  He did have PT and was a trooper and even sat up in the chair for 45 minutes, but while he is not in the rehab unit, he does’t get the full regimen of therapys.  So tomorrow morning, I get up early, call me Charity and think of my brother as Warren Beatty!!

I keep trying to figure out a way to count the days, but there isn’t really a good way. Do I count from the day of the stroke or the day he started rehab? Do I count any setbacks? From now on, it will just be the day and date, so I can keep it straight.

We had visitors – David Sislen and Pamela Kahn stopped by again today, and then a visit from Maggie who works with David at UNIS, and while I was home baking chicken (don’t ask, it’s my own special therapy – David will lose weight, and I will gain it even though I walk the 20 minutes back and forth, sometimes twice, from home to the hospital) he had a visit from Joanne Hurt, which he told me he enjoyed. I use the word told liberally, as he never said anything, but I figured it out and he gave me the thumbs up. Thanks Joanne!

He did work with Steph, the Physical Therapist and was even helping count his reps as he did some work not he bed, then he sat up for 45 minutes, which was great and important for him to do. As I left tonight, the nurse said that he would probably be transferred down to the Neuro unit tomorrow afternoon, which he is looking forward to. Not really sure why, but I think he thinks he gets more therapy time downstairs, but his stay at the SCU just happened to coincide with the weekend, when he only gets an hour of PT. We did work on the iPad on some exercises in reading and speaking on our own.

An aside – Today, on my walk home in the afternoon, I saw Anthony Weiner leaning on a fence on 20th Street near Gramercy Park, and he was using his iPhone. I wanted so badly to tell him he better not be sending any pictures! I controlled myself.

Today was a well deserved quiet day.  David will remain in the Special Care Unit until at least tomorrow.  They still want to watch and make sure he is not going to pass out.  He is also having some problems controlling is bladder and bowel movements, and they want to get the balance of meds right to keep that under control.  We had visits from Rachel Lobel and Mason Brown (Rachel was a student at Burke), Marjorie Ellenbogen (a UNIS colleague and friend) and Dave Sislen and Pamela Kahn (Dave was a Burke parent).  David enjoyed the visits from all, except some needed to be cut short of PT.

Tomorrow should be another quiet day, with some PT.  I am researching games that might help with David’s recovery, and am now looking for a breakthrough in the speaking.  He can repeat words or say things when prompted, but just can’t seem to come up with them on his own.
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Thanks for all the cards!  I look forward to reading them all with David when he is better!

Well, today started off great.  I met David on his way up from PT, where he had worked hard, and his PT, Amanda said he had done great.  We went into Liat, the Speech Therapist, and also did some great work.  Well, he did the work, I just sat by nervously and rooted silently.  Then we went back to the room for some well deserved rest.  David was transferred to bed, and I sat for a while with him then headed out to buy some shampoo and soap (he was supposed to get a shower in the next day or so), pick up some stuff from the Container Store to hang the cards and pictures that have been gathering on the side table and grab a bite to eat.  Went to Kiehl’s on Third Ave, then to the CS and to the Gramercy Cafe (diner on Third and 17th, not really a cafe) where I avoided getting completely drenched in the sideways rain.  David had Occupational Therapy at 1pm, so made it back in time to begin hanging the cards, and join Steph and him for their routine.  I was thrilled to see that his lunch was almost completely gone, except for the mashed potatoes.  I guess he is watching his carb intake.

I told the OT, Steph that he wanted to brush his teeth and he hadn’t shaved yesterday because they were busy doing other things.  He did great sitting up and then transferring to the wheelchair, and we were off to the bathroom for a shave and brushing of the teeth.  He stood for the entire shave, which was great.  At the end, he said he was tired and sat back down in the chair.  Then seemed a little out of it, and became a agitated.  Steph though it might be his blood pressure and got the BP monitor to check it.  While she was trying to check his BP, he passed out, and all hell broke loose.  I was asked to leave and Doctors and nurses were called in from many corners of the hospital.  At the moment, I thought, well, this is it, and he was doing so well, I just don’t get it??!!  Then Steph came out and told me that he was awake and fine.  About 20 minutes later, I got word from Dr. Blume that he was being sent up to the ICU at the hospital for some tests and observation, but that he was OK, he had just passed out and there was not another Neurological Event.  That was a relief!  So, I followed him up to the ICU and stayed with him until 7:30PM when he was dozing off and would let me leave.  For some reason, tonight he was worried about what to do if he needed to go to the bathroom and seemed to think that it would be a good idea for me to stay to handle these issues for him.  I was able to allay his fears with the help of the nurse and explain that they would actually respond to his calls even if I wasn’t there.  There was actually a lot more to it than just that, but too much to go into here.  He did finally feel safe enough to let me leave and told me to go, and I was grateful for that.

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More small miracles today.  At 2pm David went for his swallow test with the speech therapist and he passed.  Now, that doesn’t mean he is having prime rib tomorrow, obviously, but he will start eating, and he is very excited.  He can have only specific things – chopped foods and nectar type liquids.  In another week or so, they will test him again to see if he can have water or other liquids.  The PEG tube will stay in place to help supplement the food that he will eat.  His physical therapy session went very well too, and he was doing more strenuous work on his legs.  Speech therapy continues, and he is able to repeat words, and answer questions, but still is not able to ask for things.  He is also able to read words, mostly, but I was confused when he couldn’t place to word “pillow”.  The brain is a mysterious thing!

His doctor has recommended that he being taking Prozac.  She said that they find it helps with the physical rehabilitation, and, of course, has the added benefit of avoiding depression as the rehab continues.

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Do what the doctors tell you to do, especially the physiotherapists.

Especially the physiotherapists.

They are often unencumbered by formalities and medical explanations. They show you how to get better and they show you what to do to get better. They work with you and alongside you – not face-to-face.

If you could see them at work, you would agree. I couldn’t have said it better, so thank you Lowell Blackman!

Well, it is late, and heading to bed in a few, so I will make it short.  The days seem uneventful, but in reality, they are so full of little events, that they start to seem ordinary.  Today David helped dress himself, stood and did some exercises with his right leg, helped sing “Tiny Bubbles” (sans Ukulele, but we have to have somewhere to go, right?) and had visits from Jane Lang, Julie Halston and Patrick Rona.  He really is enjoying having visitors, and that is the one thing that seems very different from the David that I know and love!

Tomorrow at 2pm he is getting another crack at the swallow test, and we are keeping our fingers crossed.  Lets hope that tomorrow, he will pass and they will remove the PEG tube and he can start back to eating again.

Today, while David thought it was February (and having just come in from the heat, I thought that might be a good idea), he was corrected, and remembered.  He also was able to count to 10 with help, and say all the days of the week.  I hate to rain on such great progress – and it IS great – but, like new parents, his speech therapist, Liat and I were probably the only ones who would have recognized what he was saying.  But the sounds were there, minus some of the consonants, but it is a start, and I see light.  He also was able to help sing Happy Birthday, and my mission is to start finding songs for him to sing.  I think that “Tiny Bubbles” will be number one on our own personal hit parade, but want to have back-up so, if you can think of anything, send them my way!

He had a visit from Harvey, Madeleine and Judy, which was great and he was thrilled to see them.  Also, gifts started arriving, which also lift his spirits.  Also, a very nice letter from the Secretary General of the UN, which was heartfelt and personal.  I was impressed.  Sometimes I forget that David is not only very important to me, but also, very important to other more important than me.  I share well.

I spoke to the Social Worker who gave me the outcome of the meeting with all his Doctors and Therapist in the morning.  They have set a goal of August 28th for his discharge from HJD.  He will be transferred when ready to a sub-acute care facility.  No set time for his stay in this facility between HJD and home, but it is one step closer.  It is nice to be one step closer though, even if it is all just in theory.  I have a list of places, but it looks like the best place for him to be is at Park Terrace in Queens.

Today David had his first full complement of therapy – physical, speech and occupational.  He had an hour of each, and was exhausted by the end of the day.  He also had two visitors, and really enjoyed seeing both Jane Lang and Sheila Desmond.   Jane wrote a poem and noticed that the word that David says most clearly and strongly is “yes” and Sheila brought a card with the image of Ganesha, who, she explained, is the remover of all obstacles, so I say yes to removing obstacles!

I think that I would advise folks to plan on staying for 30 – 45 minutes at this point – he needs to save his energy for the work he needs to do every day.  We also met with the Victoria – his social worker – who said that the full team would meet tomorrow morning and set goals, and come up with a provisional timeline for David’s recovery.  Will let everyone know the outcome of that tomorrow.

I am going to end with an image that was sent by our friend Monica Miracky in Washington, DC.  All I can say is, this image is at once creepy and inspiring!  Here’s to David and me sitting atop the Matterhorn eating fondue in one year!!