Wallenberg Syndrome and other adventures

When Mordy first had the stroke, one of the symptoms he was diagnosed with was Wallenberg Syndrome. This syndrome (named for Adolf Wallenberg, who described the symptoms in 1895), is characterized by a lack of feeling of pain and/or temperature on one side of the face and the opposite side of the body.  In Mordy's case, he doesn't feel pain or temperature on the right side of his face and the left side of his body. He does feel a slight tingling when exposed to these things, but not a real sensation of pain or temperature.

This has come in handy when the doctors or nurses need to draw blood--he always has them draw from the left side of his body, so it won't hurt.  He feels the needle, but it doesn't hurt at all.  Also, the other day Mordy stubbed his left toe.  He said that it didn't hurt, but that he felt his toe catch on something, and he probably stubbed it.  We checked for blood (since he's on blood thinners, so bleeding could be dangerous if not caught) and made sure nothing was broken.  But since the lack of pain is only on the surface, not internally, it was clear he was ok.

Lastly, the other day it was steamy and warm outside.  Mordy walked outside and said, "This is weird--it only feels hot on one side of my body.  The other side feels completely normal."  That's Wallenberg for you...

The good news is that Mordy doesn't have other potential symptoms of Wallenberg, like difficulty swallowing or slurred speech.  Everything is functioning just fine.  It's just that he doesn't feel temperature or pain in those places.  I've joked that if I want to slug him, I know which side to punch :-)

Well the big news is that today Mordy began to feel temperature in his left foot for the first time since the stroke.  When he mentioned it to the doctor, the doctor said that the Wallenberg might be going away, starting with the foot and moving up the body.  We'll see what happens in the next few days and weeks.

The other big news today is that we had a flood in our basement from a misbehaving washing machine.  Here's proof that Mordy is getting better and is now quite physically robust: he walked down both flights of stairs, used the shop-vac to suck up the water, and carried a number of large and heavy items upstairs.

Mordy fixed the problem with the washing machine, so things are clearing up now.

Mordy wants me to let you all know that even though he's still working on his balance and vision problems, he is certainly not frail.  He is capable and strong.  Although he still has a long road ahead in terms of full recovery, he has gotten to the point where he is able to manage on his own and accomplish things around the house and in the world. (Albeit without being able to drive still...but the therapists are working on that, too...)

Our First Date Night Since the Stroke

Mordy and I had our first date since the stroke Thursday night.  We went to our first show in the season at NJ Shakespeare. (When I first became pregnant--with Isaac, 9 years ago--Mordy purchased us season tickets to NJ Shakespeare, to ensure that we'd still have dates even after we became parents.  It was a wise decision, and we've gone every season since!)  The show was Henry IV, Part I.  Mordy was able to watch the first hour without an eye patch, then patched for the remaining hour and 45 minutes (they never edit the plays, so shows there are often long!)  We enjoyed it tremendously.

Overall, Mordy's vision is slowly improving.  He's starting to read for short period of time without the eye patch (and continues to read for long periods of time WITH the eye patch).  He has been reading more and more each day, as he returns to his passions of studying Torah and reading books.

I attended Mordy's physical and occupational therapy on Friday. (He has therapy 3 times a week) The physical therapist noted Mordy's improvements from earlier in the week.  He had been doing his homework--exercises at home--so that has helped with his recovery.  The occupational therapist was a vision specialist who gave him many tips on improving the coordination of the eyes.  Mordy still has prisms, and those are working out well.

Mordy has described the way he experiences the world as follows: when he first had the stroke, he felt like he was on a rowboat in terms of the way the world was rocking.  Then he improved, so he felt like he was on a fishing boat.  Now it feels more like a cruise ship--while there is no longer visual movement in the room, his body still senses some passive movement.

Mordy's walking has also improved.  He can now walk without holding my hand, as long as he focuses on a target that he is walking towards.  While looking at the target, his gait appears normal.  He still can't walk and talk at the same time because walking requires concentration. Mordy walked on his own to Jerusalem Pizza for lunch the other day.  He plans to take increasingly longer walks each day to work himself back up to commuting distance for the Fall.

His tooth situation has completely resolved--his mouth is back to normal.

The kids start day camp on Monday.  We're all settling into routines...

haven't written in a while...

I've been tired lately, and with being back at work for 1/2 days, I've had less time for blogging.  So here's the updates since last Tuesday night (my most recent post):

Mordy's continuing to improve. His vision has gotten better such that he's reading a bit on his own each day.  He's recently picked up the Sifre (for those of you who know what it is....and if not, go here) to read, you know, for fun. Typical Mordy "fun" reading...yes, so he's really improving!

Mordy's getting out of the house more. He attended Jonah's pre-school graduation and dinner at a restaurant afterwards. He's been taking short walks (walked to the doctor, etc) and he's been doing well.  He doesn't use the cane, but he does like to hold my hand for support, which I like :-)  As long as he's holding someone's hand, he's able to be steady enough to walk just fine.  And he's becoming a master at stairs.  It is amazing to see his progress!

Mordy went back to services for the first time this Saturday morning.  He walked there, holding hands with Isaac, our 9-year old, and enjoyed being back at the Highland Park Temple.  He took the opportunity to bentch gomel (recite a special prayer after having gone through a life-threatening experience). After services he socialized with friends, and when I encouraged him to go home, he insisted on staying longer to talk with people.  He really enjoyed being back in the world again. I enjoyed seeing him in it.

Mordy had a physical therapy assessment on Friday and an actual physical therapy session today.  He starts occupational therapy tomorrow.  Thanks to all who have been giving him rides!

At one point during the therapy, the therapist told him that she wanted him to run.  Run?!? Mordy's not steady at walking...how could he run?  But the two therapists promised that they'd be on either side of him, to make sure he didn't fall.  So they did. And he ran. And he didn't fall!

I guess part of therapy is getting your balance and coordination back.  But part of it is also getting one's confidence back.  He can run! (Yes, but don't worry...he won't try that at home!)

OK, so this next part is crazy...Saturday night into Sunday Mordy had a dental emergency totally unrelated to the stroke.  He developed a small infection from food caught in a small area of his gums that became increasingly painful and swollen throughout the night Saturday night.  It got so bad that he couldn't close his mouth all the way! He barely slept that night, and he had me up multiple times. We were lucky to get an emergency appointment with our dentist Sunday morning, and she was able to identify the problem and figure out how to resolve it.  He's on antibiotics now and everything is getting better, but it will take a few days to fully resolve.

Fortunately, my mother was able to stay with the kids during the dentist appointment and afterwards as I ran to pick up Mordy's prescriptions, etc. After having been up all night, Mordy slept a good amount on Sunday, Father's Day.  I eventually picked up the kids from my mother's and took them to ToysRus to get them small gifts (Jonah received a giftcard for his pre-school graduation and all three boys benefited!).  By the time we came home from all our excursions and Mordy woke up, it was close to 5pm.  At that point, he got his father's day presents and the boys got to watch a Superman movie with him as a special father's day activity.


I never got to nap yesterday and I'm still tired today, so I guess this will be the end of the blog post for now.


Until next time...

Time to recuperate at home

Monday and today have been restful for Mordy.  He's getting lots of time to sleep and heal, which has been really good for him.  He's also walking around the house without using the cane at all, which is great!

The nausea has subsided so much that he's no longer taking the medication for nauseousness.  The vision is stable, as it was Sunday.  I'm encouraged that he's healing so well.

Mordy's been listening to books and reading.  He listened to the entirety of the Hunger Games series.  He's been reading (in large print) Daniel Boyarin's book "Socretes and the Fat Rabbis" as well as Mishna and Gemara (Talmud).  At this point, he's reading in large print with a magnifying glass and a patch covering one eye.  But in this way, he's able to read for several hours at a time.

Mordy has also resumed reading to the boys at night, which was part of their bedtime routine before the stroke.  He's continuing to read "Lord of the Rings: The Two Towers" as well as the 2nd book of Samuel.  Both are great adventure stories for the boys.

He has his first checkup with his primary physician tomorrow, and will start physical therapy at the end of the week.

Meanwhile, since he's been so stable, I've started going back to work in 1/2 day increments. It is good for me to start to return to my routine.

Tomorrow Sammy has a concert at his school and Jonah is graduating from pre-school.  Mordy will be at the graduation, and we're so glad to have him there.

Mordy's first weekend at home

Mordy came home from the rehab hospital Friday afternoon and immediately went to sleep.  He woke up for Shabbat dinner with our boys and his parents (compliments of the Orchid restaurant!) and then went back to sleep. He was just so tired!  But we were very happy to have him home with us.  He and I gave the traditional blessing to our children at dinner, as we do each Friday night, and he read to them at night before bedtime, as he used to do each night before the stroke.

Saturday was sleepy, too.  Mordy slept a huge amount, and when he was awake, he had some trouble seeing.  The double vision and vertigo had returned.  But after a long afternoon nap, he felt much better and after Shabbat we got to watch the two episodes of Mad Men that we had missed while he was in the hospital.  Now we're all caught up for tonight's (Sunday night's) season finale!

Late at night, when I and most normal people are getting ready for bed, Mordy decided Saturday night, for the first time since the stroke, to have a late night snack.  This was a wonderful thing, because before the stroke, Mordy would always have a late night snack.  It is delightful to see him returning to old habits.

Today was a much better day. Mordy was awake much more of the day and the double vision and vertigo had significantly lessened.  He felt much better throughout the day, though he still has been taking it easy and napping occasionally.  At one point, Sammy, Mordy and I went out for a short walk for a few blocks in the neighborhood.  He used the cane part of the time, and walked without it part of the time.  It seems that walking without the cane is better for him, even though he's not 100% steady in his gait, because using the cane required so much coordination and concentration that it made walking harder for him. Going up and down stairs was not difficult at all.  I'm sure he'll continue to work on walking and using stairs as he goes to physical therapy later this week.

Overall, Mordy describes his experiences as similar to the sensation of being drunk.  He can't get his legs to walk properly, and his gait is slightly off.  At times the world is spinning, even when he is sitting still.  He is cognizant and aware of everything around him, but he just wants to go to sleep.

Since yesterday when he slept most of the day, to today when he was awake and had less vertigo and double vision, I am encouraged that he's getting better.  Obviously, the transition from the rehab hospital to home wore Mordy out.  But since he's resting so much, he's continuing to improve.  I hope that will continue to be the case.

Last full day of rehab

...so you know that you're tired when you fall asleep while putting your kids to bed and you don't wake up and go into your own bed until 2am...that's why I'm updating this blog post Friday morning instead of Thursday night!

Here's what I started to write yesterday and never posted...
Mordy had a very early morning today. They woke him before 6am (which is earlier than our kids would wake him if he were at home) and brought him to a classroom for the neuro-ophthamology residents. They spent the next hour discussing his case and examining him. It definitely wore him out! When he got back to his room he slept and slept. They woke him for occupational therapy, which he sleepily went through.  He showed the occupational therapist that he can accomplish activities for daily living well enough to be able to be sent home.  These activities included: getting in and out of the bathtub; walking to a bedroom and sitting down on a bed, laying down and getting up; walking into the kitchen and doing some cooking (with pretend food); getting into and out of a car; and more.  They were very satisfied that he could come home Friday!

He was still tired, so he slept during the lunch break and woke up for physical therapy. During physical therapy,  he walked with a cane.  It seems that he'll be sent home with a cane, not a walker, so that is very exciting news!  He went up and down stairs multiple times (and quite well) and then did a number of exercises to help with his coordination and balance.  The therapist provided detailed instructions and illustrations of all the exercises so he can continue to do the exercises at home.

The neuro-ophthamologist came to visit in the afternoon, to make sure Mordy wasn't too tired out from the early morning class, and to suggest some exercises to help his vision improve. Mordy's vestibular system (which coordinates balance) is getting inaccurate signals from his eyes.  As he continues to do these eye exercises, his vestibular system will get increasingly accurate visual information, so his balance will improve.  The prisms are still working great--Mordy continued reading to himself through the afternoon.
---
So today is Friday, and Mordy is coming home!  Last night the children made a big poster that says "welcome home Abba" that is hanging on the front door of home, just at the top of the stairs, so he'll see it when he comes home.  (Thank you to Tammy Dorff for the idea and for helping to make it happen!)

Next week he'll have outpatient therapy, probably Tuesday and Thursday.  And after that, he'll have outpatient therapy on Mondays, Tuesdays and Thursdays.  If you're able to give Mordy a ride to JFK, please email getwellmordy@gmail.com

While Mordy is thrilled to be coming home, he still needs a lot of rest.  If you're local, please let us know that you want to visit--don't just drop by.

I'm very happy to have Mordy home this Shabbat with our family. May this weekend bring health, joy, and recovery to us all.

The wonder of prisms

Today Mordy had a pretty good morning with physical therapy and more "activities for daily living." He practiced doing several tasks that he'll do at home once he gets back from rehab. He did a great job with it all. The whole time he was wearing the eye patch to reduce the double vision and ensuing dizziness.

In the middle of his second therapy session (after lunch), the neuro-ophthomologist came in with prisms.  He held the prisms over Mordy's right eye until he found the right one to help prevent Mordy from seeing double.  We were a bit surprised to see the doctor, since we thought that prisms would be something Mordy would get further down the road.  But the doctor removed Mordy's patch and put the prism (clear plastic) over one lens of Mordy's glasses.  Mordy put on the glasses and exclaimed "I can see!"  The double vision was gone.  It was amazing!!

Mordy continued to have the prism on his glasses for the rest of the day.  For the most part, the double vision was gone.  At a certain point, his eyes became fatigued and the double vision returned.  So I encouraged Mordy to close his eyes for a bit, to give them a rest.  After 30 seconds, he opened his eyes and the vision was normal again.

The prisms are incredible.  He no longer sees double.  This has significantly reduced the dizziness.  The doctor suspects that as the brain will continue to heal he will outgrow the prisms.  When that happens, we'll just remove the plastic from his glasses, and his vision should return to normal.  Amazing, right?!?

The neuro-ophthomologist is bringing Mordy to his class tomorrow morning, to tell the residents about Mordy's case and display how the prisms are working.  Lucky Mordy, he gets to return to a classroom for purposes of instruction within 2 weeks of his stroke! (And we're looking forward to his return to being in the role of teacher this Fall...)

Mordy continued to walk without the walker today.  He occasionally used a cane, but often just held my hand or walked with someone nearby. With the prisms, his gait has improved.  It is truly a blessing to see the healing that is happening.  While incremental, it is consistent.  We're hopeful for a speedy recovery.  Thank you all for your cards and prayers.  I'm sharing every message with Mordy (even if I don't reply to you directly, we're getting them!) and he's happy to receive so much support from all of you.

We're still hoping he'll come home Friday...I'll keep you posted on that.

Better and better every day

Today Mordy finally got to see the neuro-ophthomologist. The resident examined him yesterday, but the attending physician saw him today and discussed his situation with us in detail. Good news: he is expected to recover his vision. It will just take time. For now, he has an eye patch, which helps reduce the double vision. That (plus medication) helps reduce the dizzyness and nausea. If his eyes recover to a certain point and plateau but don't improve completely, the doctor can give Mordy prisms. If for some reason that doesn't work either, surgery is a last resort, but an unlikely scenario. Overall, the neuro-ophthomologist was extremely reassuring. Basically, he said that Mordy should most likely recover his vision on his own, as his eyes and his brain readjust after the trauma of the stroke. We are already seeing that each day the eyes get better and better. We're hoping that will continue.

Mordy had several sessions of therapy today. The big news is that he was walking for periods of time without a walker. He still had a therapist holding on to him or putting hands out around him, in case he should lose balance. Mordy said that he doesn't feel like he's going to fall. But he does feel uncoordinated. He said that he felt like his gait was that of the "minister of silly walks" (for those of you who are Monty Python fans, hope you enjoy that reference!) With the therapy, his walking and coordination of his gait is improving.

When he wasn't in therapy, he mostly rested. He has been listening to "The Hunger Games" on audio, and he's enjoying that. His appetite is back, so that's good, too. He's really improving, and we're all hoping he'll be home on Friday.

As for visitors, we have been inundated with people asking to see Mordy. He had one visitor today and after that he didn't want any more because he needed to rest. All the doctors are saying he needs to sleep for his brain to heal. I suspect that will be the case for a while...

I know he'll want visitors once he's feeling better, and we might need help in terms of transporting him from home to and from JFK for outpatient physical therapy. So if you're reading this blog and able to help bring Mordy to and from therapy during daytime hours next week or the week of June 18-22, send an email to getwellmordy@gmail.com

And if he does come home on Friday, and if you live local, please don't drop by over the weekend to visit. After the trip home, he'll definitely need a few days to rest a lot at home before we have people coming by.

Thanks for your understanding...

Activities for Daily Living

Today was quite a day!  For the first time, Mordy wasn't nauseous or dizzy.  It seems that his anti-vertigo and anti-nausea medications are working.  Yay!

Mordy had physical therapy focusing on "activities for daily living". The therapist made sure Mordy could shower, get dressed, and do other things he'll need to do once he goes home. He went to a fake apartment down the hall from his room and practiced sitting in a chair, standing up; sitting on a couch, standing up; getting in and out of bed; getting in and out of a car, and more. He did arm and back exercises, sit ups, and then eye exercises. The eye exercises were the most challenging. He could manage the situps and other excercises without a problem, but his eyes became easily tired from the exercises.

Mordy wore a patch on one eye, and then the other. After patching for several hours, his eyes improved tremendously.  He no longer saw double vision, and he no longer had trouble reading.  He was able to move his eyes well and read--even small print!  While the neuro-ophthomology resident stopped by today, the neuro-ophthomology attending physician will come by tomorrow. We didn't get any answers today, so we'll find out more about his eyes tomorrow.

The best news of all is that Mordy is due to come home Friday or Sunday.  He really wants to be home on Friday, to be with us for Shabbat.  But we'll find out on Thursday whether that can happen, or if we have to wait until Sunday to have him home.  Once he's home, he'll still have outpatient physical therapy, to continue to improve.

Mordy had several friends visit today, which he really enjoyed, but it also made him tired. Mordy really enjoys seeing people now, and he'll want even more visitors once he comes home. But please let me know before you drop by.  If you're able to visit, during the day or at night, email me at GetWellMordy@gmail.com

Thanks,
Esther

Enjoying sunshine and relaxing on the lawn

Today I brought the boys to visit Mordy at the rehab hospital.  Mordy had just woken up from a nap, so he was energetic and happy to see his sons.  He used the walker to walk from his bed to the wheelchair, where we wheeled him outside (or, more accurately, he wheeled himself!) into glorious weather.

Mordy sat in the chair for a while as the boys ran around on the grass.  Although Mordy's having a lot of trouble with his eyes at the moment, seeing his children running on the grass gave him much pleasure.  He explained that it is easier to control his eyes as they tracked a moving image--like the boys running--than to control the eyes while looking at something stationary. At one point, he got out of the wheelchair and lay down on the grass, enjoying the fresh air and sun as the boys climbed over him with hugs and kisses.

Overall, Mordy is doing pretty well.  He is taking an anti-nausea medication which is helping.  He also had physical therapy today, so he practiced going up and down stairs and doing other tasks.  The therapy has been great...now if he can only get his eyes coordinated again, he'll be in terrific shape.

Tomorrow he has a neuro-opthomologist coming to see him, to assess his eyes and determine what can be done to correct the problem.  I look forward to reporting on how that visit goes.

As for me, after the visit, I took the boys to visit friends in Princeton, which was a pleasure.  It was good to see close friends and the kids enjoyed playing with other children (and, of course, getting ice cream!).  One of my friends, Dr. David Nathan, asked how I'm doing and I said that I'm ok, but I am a little sad about everything.  David pointed out that I'm probably feeling a sense of loss.  Yes!  I didn't realize it until he named it for me...loss of a feeling that we're young and healthy and have so much ahead of us...loss of a sense of security in having Mordy with me...loss in the short term plans we had for this summer (though we still don't know which of those plans we still might be able to salvage)...loss in just having Mordy with me at home these days.  I do feel that loss. I called Mordy and asked if he feels sad, too, and he said he's a little sad, but mostly impatient.  He wants to recover faster than he's been able. We're both aware that it will take time, and patience, for him to recover.  We're still taking it one day at a time.

On a completely different note, another good friend asked if there's a way to "subscribe" to this blog, so she could get an email when I update the blog.  The answer is yes and no.  I've added a feature to this site, on the upper right, where you can put in your email address to "follow by email."  Once you put in your email address, you'll get an email asking you to confirm.  When you confirm, you'll be a subscriber and you'll get an email once a day with the latest blog post(s). BUT, it won't send you a message the moment I update the blog...just once a day each day, probably at the same time each day.

Until tomorrow...taking it one day at a time.

Visit with the kids

Forgot to mention that I brought the kids to visit this afternoon. Sammy had a huge balloon and lovely card from his teachers. Each boy got a few moments alone with their Abba, which made them very happy. Don, my father-in-law, came up from Baltimore and is staying for the weekend. Ann, my mother-in-law, and I are happy to have him here. I will bring the boys back on Sunday, so hopefully that will be another good visit.

1st Day of Physical Therapy

Today was Mordy's first day of physical therapy and it definitely wore him out! After a bit of therapy in the morning, he slept for a while...he was so exhausted! When he woke up he was nauseous and having trouble coordinating his vision. It appears that the stroke has made it harder for his eye muscles, especially his right eye, to move properly. He had additional therapy, with special emphasis on his eyes, this afternoon, which also wore him out. He has gone back to sleep. The more he has therapy, the more the synapses in his brain will connect, and he'll relearn how to do things he did before the stroke, which in his case have to do with coordination and balance, as well as vision on the right side. The physical therapist he met with this afternoon was hopeful that with therapy he'll regain these abilities. JFK medical center has been lovely. The people who work here are very nice and he is getting excellent care. Although the doctors at Robert Wood Johnson originally said he'd be here for a week, he could come home sooner...or he could be here two weeks or more. It really depends on how he does. Wishing all of you a Shabbat of Heath and Peace: Shabbat Shalom.