Wednesday, December 18, 2013

Anosognosia : Dr Amadors recommendations

Having recently had to deal with Pop's anosognosia / storyteller without an anomaly detector, I felt that I didn't have the distance required to respond coherently! I went back into my notes, seeking advice and council. Will admit also had to sleep on it !

Last May I was able to ask Dr Amador a question during a live call in where he was speaking to family and caregivers of people that were dealing with Anosognosia.

I asked if he had any general recommendations for us. Then later on went back and made some notes from his book :

"Have to stop talking about them being ill."

"There are lots of things that we CAN do to help: Respect , Listening."

"They are alone in their experience. "

"Reflective Listening. If they have an alliance with someone they will stay in treatment."

"Let's agree to disagree !"

"Convey your respect for their point of view. "

"Start conversations where you can learn something and you reflect back what they are feeling."

So again for those that haven't looked at Dr Amadors site : The Leap Institute,  I highly recommend a visit.

It's been the only thing out there that I have found, offering a bit of solace, for those of us on the front lines.

"Listen. Empathise. Agree. Partner.  LEAP!"

Saturday, November 16, 2013


Such a big word! So hard to say and remember. Used to describe to forms of delusional expression in someone like Pop, with his injury to his right parietal, to someone suffering full blown schizophrenia. Anosognosia certainly has serious implications for someone with schizophrenia as in denying their illness means they won't take medication. I won't go into a further description of this aspect of Anosognosia as it is the better documented. You can "google" it !  Pop's version is probably very common too, considering just how any people have strokes. But as there is no cure as it were, there isn't much out there in how to deal with it.

The main thing that I'd like to talk about in this post are the various things that we use in helping someone in my Pops situation.

Because the one piece of help that we didn't get from any neurologist or doctor was just how to work with and not against someone with this condition. We needed to learn not only how to understand what was going on with Pop's thought processes post stroke but also how to relieve his anxiety about what he saw as inconsistencies in our response to something he considered fact.  By "we" , i include not just my mother and I, but all of those helping him, his caregivers, his friends and wider family.

So back to anosognosia. That big long word translates to "denial of illness".

While you might think it describes a psychological response (denial) to two conflicting views of the same sensory information, It's a little more complicated than that. It doesn't really have anything to do with denial as a psychological mechanism. Anosognosia arises after an injury (or perhaps a mistake to the genetic code) to the brain in the parietal and frontal lobes.

There is no talking therapy, no medicine, no retraining another part of the brain, that heals or transforms this injury into something positive. It just is. You go on from there.

Wild harebrained ideas zing through our brains all the time, don't they? Sometimes they seem like an inspired and creative answer to a question that we are researching. Or perhaps it is some otherwise totally incongruous and outrageous inner response to say a push on a crowded train? What is driving this process? The left hand side of the brain. An incredible mixture of language, memory and reason. The left overflows with information. Coming in, going out, stored in those places that it has dedicated to short term memory, long term memory, all that.

For the vast majority of us, our right parietal takes in this information and comes back with its judgement of the situation. It's the part of our brain that fits that piece of information arriving in our complex sensory system and says: Yes ! That fits in there. No! That looks that looks like it might fit in there but it really goes into that spot. The right parietal is basically the part of your brain that is building your reality with  all of this sensory information: sight, hearing, touch, taste, running that through a check with the various areas that store memory and updating the general picture. Building our reality instant by instant with the information that it has on hand, constantly fine tuning "reality" as new information comes on board. Amazing!

Pop's right parietal, his "anomaly detector" simply can no longer counterbalance his left hemisphere's workings. This can't be fixed/regrown nor its function taken over by another part in the surrounding area. It doesn't get "better".

Just think how many variations the left can come up with as to how to fit in this or that piece of information into a general picture? Without a "general" picture we can't function. So what does it look like when only your left hand hemisphere holds sway over building that very important general picture of reality?  Well the answer is that sometimes it can put together a pretty decent picture. And sometimes it can't.

We see that Pop's version of his present reality is best, when he's been up awhile. Is physically sufficiently stimulated to feel "awake" but not so over-stimulated as to feel overwhelmed and therefore tired.

That golden time is usually around meal times, before and after. Perhaps at the very beginning of a trip outside. Where he feels the air, a breeze, sees the sky! Or having started some basic conversation with a visitor, allows it to develop. This can take an hour or so. Its akin to "priming the tank".

When is the left furthest from the mark ? When Pop is just waking from either deep sleep or a nap. When his left hand brain has been using his dreamscape to construct his reality.

How do we recognize the anosognosia in Pop? Simple stuff really. Pop might say that he is just going to get up and wants to take a walk, stretch his legs. That he wants to go use the bathroom. That no, he doesn't need a new wheelchair because he will be out of bed soon and won't be needing a wheelchair!

It makes things like his ability to participate in any kind of physical therapy, impossible. I mean why do 100 leg lifts if you didn't think there was anything wrong with you in the first place? Why try to stand up when you can stand up if you want to? You just don't want to at the moment.

One of Pop's best explanations of why he doesn't try and walk is that his doctor(s) told him he was to stay in bed and rest. That was what he was doing. Staying in bed and resting. Following doctors orders, he said.

101 reasons why whatever reality he has built at that moment is definitely the right one. He fits all the facts in from his point of view with great, great creativity and makes it all sound very, very plausible!

But what do those of us around him do when one of his versions of reality is really way way off ? And is causing him great distress ? This can happen and it's really heartwrenching.

At this point, I'd like to introduce the writing and practice of Dr Xavier Amador

Dr Amador is a psychologist best known for his help for the families, caregivers and "responders" (police and emergency medical teams) that work or have to deal with schizophrenics. Schizophrenia. Another Big Word. From my reading, schizophrenia seems to be something that comes from an injury, a tumor or malformation of the frontal and parietal lobes. Where have we come across that before ?!

Dr Amador's suggestions in "I'm Not Sick! I Don't Need Help!" offers the only working therapy model for someone with anosognosia. From the start, it looks pretty simple:

Listen, Empathize, Agree, Partner.  "LEAP! "

He says it's all about building trust between yourself and someone dealing with anosognosia.

The first thing is to offer an ear. We listen. We sit there next to him, take the time and just listen.

The second thing:  No challenges to his version of reality. We do not say "That's not true, Tal!"

Pretty garden variety suggestions so far aren't they? Now comes the hard part.

Third thing : We agree. Simply that. Even the most spectacular and unbelievable of the realities he is describing, we agree to their possibility.

Fourth thing:  We offer partnership in looking into the situation further. Helping check the facts. Being his legs, arms, eyes for a moment. Questioning like a journalist. Pop helps ! Pointing out if you have tried a leading question. He's not amenable to those ! His story emerges. Not your story. His.

When I use the word "story" that already sounds like i'm talking about something fictional, doesn't it?

And that's one of the difficulties. Because you don't want to just give lip service to someone like Pop. He can read that kind of response a mile away. No, you put preconceptions aside and enter into his world, his reality of the moment. This happens at his pace.  He is the guide. You are simply the visitor, the cartographer of a new city, looking around, making a map with names of streets and avenues and metrolines. Putting in the landmarks and centers of interest. Showing curiosity for even the littlest side street and noting even the mundane of daily life. It's not all museums, libraries and the Eiffel tower!

The reward is mutual trust. In dealing with someone with Anosognosia, that's all you should be looking for. It's an quite a positive outcome for something that appears so dire at the outset.

Lissa, in a cold wet and grey November in Paris. Missing her Pop. And her Mom!

from "The Atlas of Experience" by Louise van Swaaji, therapist, Jean Klare, graphic designer and cartographer and David Winner, writer.  







Sunday, October 13, 2013

The Arrival of the Amanuensis - Tal Writing : Tal on Television, - Sept 2013

Looking over Pop's writing this past summer and found this :

Tal on the subject of Television :

   "Television is "High Anxiety"!  Hour after hour, making the world a place to be fearful of. Have you seen something called  Saturday Night Seduction ? Every step leads to terror and death. I think older people are more sensitive to this and after awhile they accept it as normal. (not just older people, everyone! )

They have the beginning of that thought/feeling that the world out there is really such a frightening place. You wonder where the beauty went ?

You want to say: "Wait a Moment! I need something that leads you  to beautiful thoughts! Not that lead you to your fears! "

If you have a TV, I'd be more careful."

You might be wondering how Tal "writes" with the damage sustained to his right parietal ?

Well his ever resourceful left hemisphere has come up with a solution of sorts. Use of Pop's terrific long term memory. We often see him writing with his right finger on shoulder or knee. I'm guessing this is some type of memory enhancement. We need a decent neurologist to describe what is truly happening here but it seems to be something like memorization. It's certainly one of Tal's primary activities, this finger writing.  

So it isn't surprising when you hear him able to start telling you a new Dragon Tale or speaking to a recent interest in perfect sentences. I quickly grab the ipad or a sheet of paper and start taking his words down down as fast as i can. When he pauses, I read him back what I have written and on he goes, correcting grammer, changing a word here or there.

Sometimes like this piece on Television with a capitol T , it comes out exactly like he's said it. Quite different than having a conversation with him ! It's as if he had been working on what he wanted to say, honing his words before sharing them with me. Pretty surprising isn't it?

We are trying to encourage him in this direction and have asked a young therapist to try combining "talk therapy" with that of being an amamuensis. At first Pop was quite wary. He would gladly "write" with me, his daughter, but with Craig, he said he thought C was going to use these words in  "his book on Tal" !

"No, that isn't the case. Craig is going to be your amanuensis as well as your talking therapist. Like Eric Fenby was to Frederick Delius. We wouldn't have "Song of Summer"*  if it weren't for Eric Fenby !" I told him.

And this he was able to take on board. Evidence ? He's been doing some pretty interesting writing with Craig these past few months. Hopefully the trust between these two men will only grow stronger as they practice this new way of working together. It requires great sensitivity on both sides, I think. Craig to Pop's physical condition of the day and Pop's sensitivity to Craig's searching for the way into his maze of a brain. They will certainly have fits and starts and back steps. But Mom and I are optimistic !  


 *Song of Summer is both the title of an incredibly     beautiful piece of music composed by Fredrick     Delius near the end of his life in 1931 and a film of the same name made for the BBC by the enfant terrible of English cinema, Ken Russell, in 1968.

 Before you dismiss the film entirely on reading that,  you should know this is pre "Sons and Lovers","The Boyfriend"; "Tommy" et all. Certainly one of Russell's greatest films.

Shot in  black and white, impeccable editing and with wonderful performances from Max Adrian as Delius, Maureen Pryor as Delius's long suffering wife Jelka and Christopher Gable as Delius' amanuensis : Eric Fenby. And there is the beautiful Delius music throughout. One of Pops all time favorite films.


Sunday, September 29, 2013

Tal's World Today : Fall 2013

Yes, you ask yourself if you  would be able to survive the day in - day out life Pop has been living these past few years ?  I think its a little bit more complex than you might imagine. As his brain processes information differently these days, we think that this is probably the best we can offer him. A life where things move at a pretty even pace. Changes are not abrupt. Yes, stimulation ( visual, talk, visits, outings) but we always make sure Pop has time to  recuperate and adapt both physically and mentally.

What does his world, his view from the bed look like ?  A bit chaotic, but he seems to prefer it like that.  I proposed changing out the postcards for instance, he said no he wanted everything left just as it we just add a new area as new things come in.

On the wall closest to his right seeing side, messages from friends, long columns of post cards, photographs of Endless Column out at Storm King Art Center, a menu from Sweetwater Harvest Kitchen, pictures of Tiger, Pops godson,  and many other friends and family

Two bright blue socks hang with the message : " See Tal ? The sky really does begin at your feet! " 
That's a famous Tal Streeter quote by the way: "The Sky Begins At Your Feet !" Oh those boys from Kansas!

At Pops window, two Ken Conrad kites (Great Winds Kite Co. Seattle, WA) . Tal: "You see that kite over there? I am almost embarrassed to admit how much pleasure I have got out of watching that kite fly all day today. It is so beautiful how the tails come down and twirl around each other. All I have done all day is lay in this bed and watch that kite." 

On the window ledge, Pops collection of rocks. In particular, rocks found in the desert. More on these later. 

At the far end of his bed, Bruce George has made a small model of a sculpture that Tal wants to put up at the Dream of Flight , Museum and Library. 

Near the window, a wonderful little painting done by an eleven year old artist, Chamisa Edd from Durango. Mom found that at the 2011 Indian Market, a few days after Tal's arrival in El Castillo. Chamisa and her sisters, have a great site which I hope you will check out: 

Everywhere else : kites and kite paraphernalia ! Pop's ripstop ribbons of color, Flying Red Lines, a brightly colored Chinese kite, a red Happi coat from the flying fields of a Shirone O-dako team, photos of Roy Meuller's parafoils, all make what could be a somber place, something quite joyful for everyone there.

Pop has a television. He doesn't watch it. Mom has covered it up with a cloth so I'd guess he has forgotten that he has one. We sometimes watch YouTube video on his iPad in bed. Most subjects are flight related. Hummingbirds, bird, butterfly and all types of insect flight as well as the Virgin Galactic animations for future spaceflight. 

Always the dream of flight... for this man glued to his bed. 

L.S, September 28, 2013
Santa Fe, New Mexico

Tuesday, September 3, 2013

Tal's Butterfly Blog : Here we are and Here we will be ! August 2013

Welcome all! Friends and family of Tal Streeter. As some of you may know, I've stopped updating the Care Pages Blogspot of the same name, quite some time ago. Out of sheer exhaustion, more than anything else!

 As things seem to have stabilized somewhat in my family's life, I've moved all the old posts over here from that earlier care pages blog.  I'll be doing two monthly updates here about my Pop, Tal Streeter, the Dream of Flight Museum and Library (soon opening here in Santa Fe, New Mexico) and any subject that Tal wants to write about : sky, clouds, night sky, rocks, kites, Domina Jalbert, 
butterflies, hummingbirds, Manhattan, Kansas, Spaceport America in Las Cruces, NM, The Art Of The Japanese Kite, Kite Journey Through India last but not least : Tal's up and coming projects!

For those of you just joining us, "Dream Of Flight, Museum and Library" is something that Tal has been working on for many many years. His first efforts went towards Newcastle in the U.K.,  then somewhat nearer to home in Verbank New York. Finally in 2012 here in Santa Fe, New Mexico, the Wong-Wagner family generously donated land, funds, and their enormous energy. They established "Friends of the Sky Foundation", surpervised the design and put in the hard work and construction of this amazing structure. 

Dream of Flight will house Tal's library and personal collection of six to seven thousand kites from the world over, sky related material as well as his sculpture, drawings and archives. It's going to be a marvelous place where all things flight intersect with the poetic and the inspirational quality of the sky. 

In this blog,  l'll also be talking about the peculiar consequences of Pop's ischemic stroke in February of 2011. He incurred serious injury to his right hemisphere in his parietal and temporal lobes. We think it is important to share what we have learned with the wider world as well as asking for help and advice in dealing with this right brain parietal injury. We will be updating in here about various aspects and experience with Tal's long term care as and when we can : bed, wheelchair, talk therapy, dealing with anosognosia, Modern Hospice Care, Hoyer Lift's, Relexology, Massage Therapy et all !    

For those of you that haven't seen Pop in the flesh, rest assured he looks great! He is very dapper, has good humour, memory and is still the fascinating fellow that we all know and love! Bit different, tires easily...but underneath it all, he is there.

I want to thank George Peters
 for inspiring me to start this blog . Both he and his wife Melanie Walker offer stunning blogs and set a wonderful example. George said he thought Tal deserved a blog that was worthy of him! I couldn't do that at the time but am going to attempt one now! Thanks also go out to Jerry Hickey, the night owl (retired) to whom I promised to restart/revamp Tal's Butterfly Blog and post regularly! Jerry, keep after me will you ?

And that beautiful picture of an Albers Dream Kite ? David Wagner, made the original from one of Pop's drawings, flew it with him, and offered this photo of that moment together.  

Lissa Streeter

Santa Fe, New Mexico
August 2013

Tal Streeter in Santa Fe, New Mexico : January 2012

Six months since leaving word here on this carepages blog. partly because all of us are feeling overwhelmed with these events, partly because the complexity of our situation and the difficulty of finding immediate solutions for Pops care, left us all with little energy for anything else to be honest!
Pop is now living in Santa Fe New Mexico at a wonderful spot: El Castillo. He is still paralyzed on his left side, still unable to read as he has no vision in his left eye. (Or should say he has no problem with his eyes but the connection from left eye to right hemisphere, right parietal lobe is absent)
He is quite frail as he has lost most of his muscle. Arms, legs are thin thin and boney. This for several reasons. One is Pop needs feeding at each meal and until recently that was something that they weren't consistent about at El Castillo. He counts on food that he can eat rather than on tube feedings. He still gets a few of those to keep his food tube open and functioning. The food is excellent, varied and if someone takes the time to help him eat it, he really likes it!
He no longer has "pain" of any kind except when he does a big day of exercise.
Jason, having moved down with Tal from Kansas, was working with him almost daily on stretching and helping keep whatever muscle he has. Joel has taken over most of that work of recent as Jason has started back to nursing school!
Pops thinking. I suggest anyone interested, have a look at a youtube video of the Gifford Lectures in Edinburgh where the great neuroscientist, Michael Gazzaniga describes what we understand 'bout the left and right hemispheres these days.
Here is the link:
The 3rd part of the lectures, entitled "the Interpreter", best describes what is going on with Pops brain and specifically how the injuries he sustained to his right parietal and temporal lobes, affect his thinking.
Pops left hemishphere is in perfect working order. It weaves rather complex stories with whatever sensory input/ memories it has on hand. Some of these stories can become quite exaggerated and I think until recently we all took this as a sign of madness of some sort!
This "interpreter", weaving stories, is indeed what we ALL do! What you and I have, the right parietal lobe, Pop no longer has. The right parietal lobe is a counterbalance of sorts to our story weaving "Interpreter" in the lefts parietal lobe. : Both of Pops right parietal and temporal lobes sustained massive damage during the stroke.They will not miraculously come back. This is a reality.
So...what we have kind of come up with as a way to help Pop, is for his interlocuters to fill the role of his right parietal lobe in daily conversation. His left hemishphere totally welcomes this intervention on the part of the person that he converses with! Basically, it continues weaving the story but now incorporates the correct information!
This might sound kind like it makes for an odd conversation but really it doesn't. POp takes in what you offer him very quickly. Indeed he doesn't resist what you offer. It might go something like this:
Tal: "Romig went off to China yesterday"
Lissa: "No Pop. Mom is staying home for a few days because she has a cold. She will come in as soon as she feels better and won't pass on her cold."
Tal:"I knew that."
(And this effectivly eliminates China from the conversation!) ( China entered the conversation because one of his aides who looks slightly Asian, had just been in. She is Hispanic but Dad thought she was Asian till we finally asked : reality check!Reality checks are totally welcome!)

It's kind of like he inserts all kinds of information into his thinking: dreams, sensory, overheard conversations, all kind of things! Once you know how his left side is weaving the story, you can gently bring him back on topic.
It's quite fascinating and keeps you on your toes.
For me it was really important to explain this left hemisphere functioning to him. His thinking "feels" different to him and i think he wondered himself if he was crazy! I kept repeating to him that he wasn't crazy ! Just missing that right parietal lobe. His "intellect", if you can describe it as such, is totally intact! And that was quite a relief for him!
So the good news is that he has been working. Coming up with new ideas for sculpture, working with David on their foundation in Santa Fe, Friends Of the Sky as well as Marie on the wall relief for the foundation of all things sky and flight!
I should offer another example of how this all works for Pop.
While I was there visiting, Dad was working with David's drawings for a logo for their foundation. Dads left hemisphere needs extra time to "think" about a project so I was showing him the choices that he and David had made the day before. I said I was going to lay them out so that he could get them into his mind again, then gather them up and put them away. Which I did.
I rolled his wheelchair around to look outside at the snow falling outside his window.
He said excitedly: "I have another idea! I see a group of pink horses running, you know, all four feet off the ground, and they are blurred and just one is black. That one is me."
Stay with us here. To Pops far left was a pink carousel horse music box that Raana had given him for Christmas. I brought it over closer to him saying "Like this one Pop?"
His reply floored me. He was as surprised as I to see that he had incorporated something so far from the subject of flight, the sky etc into his "logo" and he replied: "We must get back to the essential. The logo must be red."
Gone was any talk of the horses. He had re-centered himself to the task at hand which was designing a logo.
This all sounds a bit loopy and it does take some practice to get used to but it feels like such a breakthrough to me!
The trick is to help him when he starts to fly off subject. Help him recognize where the "thought" came from. He then goes on "weaving" but this time grounded in reality. I really think this will get easier and easier for him as everyone: family, aides, nurses, visitors understand what is happening and don't just think to themselves "Poor Tal is loosing it" but help him re-center his train of thought. He takes over from there I can assure you! It is very exciting when you see that he really can hold onto it!
Several days after I left, Pop described to Jason, in great detail, a new sculpture that he wanted to make. You can tell from reading the description that it is totally him. He CAN be totally on track and that wonderful artist that we all admire.
So this is the Tal that are we hearing from. This is the Tal that is gaining confidence and assurance. Hopefully he will continue to have better and better moments as those around him understand his situation/manner of thinking. And aren't scared by it!
Lissa writing from Paris
January 2012

postscript August 2013 : reading back over this and I see just how far we have come! We have a totally different way of helping Pop in our daily conversation/interaction. And physical therapy is very different. But more on that in our future posting! 

Taking Things for Granted : Aug 12, 2011

August 12 :Tal's message to you all!

Posted Aug 12, 2011 3:26pm
Presently the things that we take for granted : putting on a t shirt, pulling it on with one functioning arm, sitting and standing ; all monumental tasks! I am making progress with these tasks! Pulling on ones socks with one hand is yet another level!
Love to you all, Tal

Moving Body and Soul to Santa Fe, New Mexico July , 2011

Well first apologies to all Tal friends as it has been several months since we posted an update. Mom is totally concentrated on Tal's wellbeing, therapies as well as her own as I am sure you can all appreciate!

Tal moved from the Stoneybrook Rapid Recovery Unit some two weeks ago to the Acute Rehab/In patient Rehab at Mercy Regional Hospital, also here in Manhattan. Why? Because Mercy's Nursing Staff said he was strong enough to attempt a more intensive therapy program! Yay! That means that Pop does three full hours of rehab a day, 5 days a week. 3types of therapists work with him.
Physical Therapy: wheelchair rolling with his right leg, putting weight on that leg, learning to roll from on side to another, he is getting better at helping his helpers "transfer" from one spot to another, say, his wheelchair to the bed etc. This is an important step. The more he can "participate" in moving from one spot to another, the better it will be.
Occupational therapy has also been working to help him dress and feed himself !!!!
Speech therapists work on his eating skills, brushing his teeth, cleaning the left side of his mouth and will be setting up his dragonspeak computer voice recognition program as soon as it arrives! He is excited 'bout that as it was something he was looking into before all of this happened!
The goal here at Mercy is to help him do as much as possible himself even if that takes time : eating can take a good 45 minutes!
Tal will be here til the Friday 19th of August when he leaves for Santa Fe New Mexico. Our friends from down there are flying a private plane up to pick him up and bring him back there for what will be the next part of this adventure.
I'll be updating all of Pops contact information over the next few days. As well as giving you an update on his condition: not brilliant but golly a whole lot better than we ever thought he might be!His mental state is really quite good. Ever since we got him off all pain medicicationswith the exception of a tylenol when needed he has been up, less of a night owl and able to really participate in his therapy. Its so positive and we are are so thrilled!
Tomorrows update: Some recent Tal humour!Our love to all of you!

The Ups and the Less Ups : May 22, 2011

More or less back to square one. Pop has fallen off in his progress during these past three weeks. Mom is still in Verbank but leaving for Kansas on Wed.
Well last time I was writing this blog we had had a really good week or two, felt hope. We felt that there was a bit of light in Tal's progress.
That was three weeks ago. Moms trip back to Verbank is coming to and end and she will be going back to Kansas, this coming Wed. So perhaps when Mom gets back we will hear a little more detail about what has gone on these past few weeks.
Because the news isn't good. Pop has gotten back onto the "I cant do it" bandwagon of this physical therapy. We know this because we got an email from the social worker person out at the nursing home that "we would start thinking about "long term" care. Does that mean that Dad stops the physical therapy? Is there really no use in his continuing to do this?

We don't know but the fact remains the Tal says that the physical therapy is still "almost impossible" (yes, his words)!
Yes I know Moms presence/absence probably has alot to do with this. But somehow I'd really feel a whole lot better if Pop felt the drive to work on his rehabilitation for himself. If you didn't have to be the coach, if Mom wasn't the only one he was doing this for.
Because that is potentially a dangerous position for her to be in. Can you imagine just how much she puts into helping him and trying to make the slightest little progress for him? And then the fall back down when the next day it all falls to pieces again? Every day whether it is good or bad for that matter leaves you absolutely emotionally exhausted.
For Mom and I, speaking on the phone with him this month has been very difficult. This is the first time Mom has experienced this and I feel very sorry for her. The first month Dad was in the hospital, I too took his inability to speak with me on the phone as a personal problem between us not as a brain trauma related problem.
But that was before spending time with him. Yes there were off days but there were also the wonderful days where we were really able to communicate profoundly. And the fact of matter is he can be really introspective and carry on quite an incredible conversation, if you are there, alone in the room with him!
So it was very reassuring to read an article in the Economist about cell phone usage, drivers and accidents.
Thought I would copy in an excerpt here.
"The human brain has to work harder to process language and communication with somebody that is not physically present (Conversation with passengers is much less distracting because those passengers are also aware of the traffic situation and moderate their conversation.)
A study by Carnegie Mellon University using brain imaging found that merely listening to someone speak on the phone led to a 37% decrease in activity in the parietal lobe where spatial tasks are processed. "
Perhaps more than just his being "tired", this stroke trauma complicates any phone conversation! He has real difficulty responding to you. Yes he can talk a mile a minute about a subject that he is interested in but there is little or no back and forth like a normal phone conversation with someone. So I am kind of relieved to find that out.
We will find out more about his situation too, hopefully, at the end of the month when Dad goes back to visit his neurologist, Dr Kumar, for his first check up since leaving the hospital!
Thanks for your messages and your good thoughts. Both Mom and I are incredibly lucky people.
Thought I might copy in an email here from one of his far away friends,
"'s good to know you've all been on home territory and surrounded by friends. Tal is my oldest friend, but he has some that predate me! (Not really surprising, because he's the kind of person everyone wants as a friend.)..."
So wish I had better news! It isn't easy to write what I have written but I think it is only fair to share the real situation. Mom and I both feel totally out of our league here at times. And who knows? Perhaps there is totally something else going on out there!
But we will deal with this too. We aren't looking for a miracle. Those days are decidedly over. But there has to be a road that we haven't yet turned down that will lead us to a better place. That is my hope, Mom's hope too I think.
Lissa (in Paris)

4 Message(s)

Posted May 26, 2011 7:24am
Dear Lissa and Romig
I can really empathize with the emotional ups and downs, the exhaustion, and the hope for some new perspective or avenue. For Mom, becoming a long-term care resident did mean no more PT and no more medicare paying for her care. I am so glad that you have each other and your support network. Are there stroke centers of excellence? Does Tal respond to a change of setting -- being outside? Thinking of you every day. Love, Abbie
Posted May 22, 2011 11:18pm
Lissa. Don't give up. Head injuries are so frustrating to deal with. That was the case with my daughter when she had her accident back in 1979. We let them put her on a trial drug for people with such injuries and we didn't know whether it was the real drug or not. She was acting so strange and out of character that we finally decided to stop the drug and find out whether it was the drug or placebo. Unfortunately, it was placebo so all the out of character things she was doing were just her current condition, not caused by the drug. Turns out, there was no drug in sight that would or could help her. She had to start writing little notes on small sticky pads and tear them off and put them on a mirror or her dresser so she could remember what to do next. Things like brush my teeth, comb my hair,turn off the lights, turn off the stove etc. Of course, wanting to do something is one thing but if you decide you don't want to do it then you have to think of something creative to get them to do it. Maybe you can find a "back door" to his thinking process to get him to try to do something. When all the traditional procedures don't work try to think outside the box to look for something that might just inspire him. Give him a reachable goal and see if he can reach it. You are probably in for a longer care situation. Maybe it would be better for him if he were in a more familiar environment, like his home but I realize that is probably a couple thousand miles away from Manhattan. I'm sure his doctor will have some recommendations for you to consider.Of course I share your concern for Tal and I understand how hard this is on both you and your mother. Frustration and the inability to communicate or convince Tal to attempt a task may seem hopeless, but sooner or later something will probably come around and improvement will be noticed. If that doesn't work for Tal in Manhattan then you may have to consider other options. Just keep thinking positive and don't be discouraged. We are keeping you in our prayers and I still think things will change for the better in a matter of time.
Thanks for the update and keep us posted.
Ray & Barbara Rathert
Posted May 22, 2011 4:48pm
Thanks for the update, Lissa. Call when you can.
a et al.
Posted May 22, 2011 3:02pm
Let us hope that Tal is just missing his other half and that once Dorothy Ann is back next to him, he'll perk up!

Tal's Mind : What is going on in there ? May 2, 2011

MAY 2 : We have had a really good week of therapy finally! Haley, physical therapy, Malia, speech therapy says: Tal has had multiple sessions where he has made some progress
Let's see if I can describe what I think is Tal IS thinking and how each side of his brain is working at the moment.
First we know generally where Tal had his stroke. A blood clot(smaller than a grain of rice) lodged in the right side of Tal's brain. Tal described himself two weeks ago as having "half a brain". But we can see that he has BOTH parts of his brain working, just not ALL of the right side!
How do we know this?
Well for one by what he talks about! He shows empathy, feels and expresses compassion. Is able to understand something as a "whole" rather than just the sum of its parts. The first evidence of this was back when he wrote Uko his recipe for mashed potatoes!
He can see if you are happy, or sad, or serious , so non verbal communication. All right-brain work. He hears your tone of voice (ooufa! remember trying to get him to take a shower that first week back in April)and can distinguish between "please do this ?" and "please do this!". Right brain work.
Last but not least, his eyes are open while having a conversation. He is able to be in the "here and now". And that is all very right brain.
What is Tal's left side of the brain doing?
Well Tals left likes to hear his "schedule", needs quite a bit more time to sequentially understand what you are asking him to do than his right.
While the right is able to take in lots of information and quickly come to a decision as to what to do, his left needs to go through things one piece at a time.This is a much slower process.
So conversation with Tal goes at a much slower pace. You don't have to speak loudly with him/at him! (he can hear the smallest whisper!) but you must speak slowly and give him an enormous amount of time to respond!
Another thing that his left side has trouble dealing with, are conversations with multiple people in the room. One conversation at a time? He can follow it, albeit slowly! Conversations overlapping, more than one? Ugh! Difficult! Tal will quickly opt out.
So for visitors, probably better to go one at a time, speak to him one at a time and give him ample time to respond.
All that brain chatter that he was listening to with his eyes closed two months ago is a very good description of the left brain working.
Eyes closed, yet "awake", is the left brain working on things in the past or thinking about the future. This was very much the case in the early days following Tals stroke. Yes the pain meds played their part in this too, but alot of this was the left brain not able to process all of this stimuli, all of the chaos around him.
Listing things sequentially for him is incredibly reassuring for him.
A few weeks ago, he asked Jason to tell him what song they were listening to on the CD and Jason read him the entire list before finally coming to "his" song! He followed along, and you would think this was all too much information, right? Nope! For the moment, this seems to be how Pop likes his info served up!
I'm not saying you need to talk to him ONLY in lists but a certain amount of "we do this then this then finally that" is finally the easiest way for him to follow you and what you are asking of him. I really believe he wants to respond positively to whatever is asked of him. But it may take more time and need a much longer explanation and description of the task than most of us are willing to offer!
Time. He is much better able to follow the days/nights/calender these days! He likes to hear/prepare for what he needs to do the next day for instance. He needs time to mull things over! hehe! Showers! Jason tells him the day before that he would like to give him a shower (which has been difficult ) so the next day he is resigned to the idea that he must do it!
Language? No problem. He speaks readily and in complete sentences. Uses some pretty big vocabulary too.
"Storytelling" too is apparently all left brain work. The left brain wants to make sense of the world around us, so it takes what info it has on hand, fills in the blanks of what it doesn't have and shazaam! The "truth" as he sees it! Then it plays these "truth" loops over and over. This was why at one point, it was (still is) incredibly difficult for Pop to get "off" a subject. To change subjects is to stop one story and get on to another.
Thats all left brain stuff.
Where Tal's left brain has difficulty is: in being adventurous (doing therapy), being "social" , dealing with life at it's most chaotic, "noise" of all types, visual as well as sound.
Likewise, he has trouble with depth of field. A square on a diagonal is simply a parallelogram to him. He has trouble telling whether one thing is in front, alonside but smaller (!!!) or behind another! All that stuff we take for granted and read in an instant, he takes alot more time to puzzle out!
Picking something out of the whole. So a picture of many apples all jumbled up together is a very difficult "read". One apple on a neutral background? No problem for him. A table cloth that hangs over the edge of the table obscuring its boundaries? Very difficult to negotiate just where to set that glass down!
Well enough of that for the moment. We are hoping to find out a bit more about this when Tal visits his neurologist again in the near future. We would like to know exactly where in his right side, the blood clot lodged and exactly what part of his brain was affected.
Deborah Jowitt wrote us something very interesting about left side/right side brain stroke: (paraphrasing here) the left will do whatever it can to "repair" the right where as the right side ( if the left had been affected ) would have "disavowed" the lefts injury.

So the upshot of all this is that Tal's left brain is doing all it can to repair itself. He is eating, swallowing, doing his phys therapy exercises with more vigor, and making a real effort to be mobile. This is all conscious effort on his part.
In time, we hope he will feel on his left side again. That said, we have no concrete indication that this has yet happened. There IS a finite window of opportunity here for recovery. Ugh. Reality.
Voila. Everything as i understand it. As things change I will try to keep you up on it all.
Next time, I'll report on what it was like for Tal to visit his show at the Beach the Monday before i left Kansas. Exciting!
Mom will be going back to Verbank for 2 weeks this month. As she left in such a hurry, she left many projects in limbo. Her potter tribe have all offered to help her get this work finished and sent off to Korea which is incredibly generous of them. Caroline has been looking after the mail and the like so the bills are finding their way to Kansas and being paid!
She is incredibly organised! And all told, doing pretty well!
Lissa, in Paris

5 Message(s)

Posted Aug 1, 2011 10:37am
Hi Tal and everyone !
Got an email from Romig indicating Tal was in an intensive therapy program back at the hospital in Manhattan and would be moving to Santa Fee sometime in the first 2 weeks of August. Good news getting back to a home setting and some beautiful country. Tal commented through Romig that Manhattan was looking good with a lot of the older real estate being renovated to a "tee". That's golf Tal...I'm sure you meant a kite reference like "flying high" ! Love you brother! Ron
Posted Jun 8, 2011 1:22pm
Hi Tal, Romig and Lissa....
Hoping that my older brother is making some progress in grinding away at those pesky therapies and is keeping his wit sharpened in dealing with this aggravation of a kite without a string. I love you Tal.
Posted May 8, 2011 1:16pm
Dear Tal and Romig, Siena and I are thrilled that you finally did get our card. Thank you for your note. We continue to think about you and wish you all the best with you therapies.
Ju, Courtney and Siena
Posted May 4, 2011 9:45am
Hi Lissa- Again thank you for the spectacular reports... so helpful for Tal, plus an education for us! By separate email to you am sending a "portrait of friends" headshot photo. Hugs to you, Romeg and Tal. Love, Francine
Posted May 2, 2011 10:31am
Sounds like our hope is progressing. Thanks Lisa... I am planning to see Tal in Kansas on late June as earliest. Let me back to you in email.

Does He Want to do these Therapies ? No ! April 22, 2011

Friday April 22, 2011 :  Mom's birthday
Those eyes are wide open, mostly in the afternoons and evenings. The huge hurdle of all the various therapies is meeting with Tals huge wall of resistance. UGH.
The strugegle continues and has been moving towards other challenges for Tal. "Therapy" of all types remains the biggest challenge and where he needs the most encouragement !
The opiates have finally worn off. Pop's eyes are wide open when you speak to him now. He jokingly describes 8AM as "dinnertime" and 8PM as "breakfast". He talks a blue streak as David Wagner will attest to.In fact you really can't get him to change the subject nor ask the person he is talking to, how THEY are doing! All very right side of the brain stroke from what I have read.
He still has some "all over aches" but hopefully his pain patch will take care of that!
He is feeding himself, and as he can "chew" now, eats what we call semi-solid food. Things like chunky chicken soup with pieces of carrots, potato and new peas! A chocolate chip cookie! Gone are the blobs of pureed this and that! Only the meat is cut into bite sized pieces! So all good there!
The speech, occupational and physical therapies remain things he says he wants to do but...but...he tries to talk his way out of them. So there is still an immense amount of denial. Only two days ago was he able to finally come out with the word "stroke" to describe what had happened to him.
As for the various therapies, we are SO disappointed with his unwillingness to participate! He will be asked to do something then spending an hour "discussing" with his therapists as to "why" he needs to do what he is being asked to do without him ever doing even the littlest thing! When they leave he reaches over and picks up the glass and takes a sip of water as if it were the easiest thing on earth to do! he is trying to learn a few simpler things tho. Rolling over in bed for instance.
But he has to WANT to do this therapy. We tell him doing these simple beginning steps would allow him to: go to the bathroom himself (this is a big incentive!), be more independant. I tell him "Pop I want to drive up to Stoneybrook and see you over at Margies swinging on the swingchair with her this August! But so far it is pretty discouraging.
Special visitors!
Ray and Barbara Rathert came up from Topeka for a visit after seeing Tal's show at the Beach. Tal loves listening to the CD the Ray left him of his excellent dance band: "The Kings Of Swing". They played together in the dance band along with Paul,Tal's father. Ray was the drummer some 50 years ago and continues the band today. Great pro's!
Next big thing: We have gotten permission to take him to the Beach Museum Monday! Jason his most trusted helper will accompany him there in the afternoon. So I will try to get an update in here before leaving for Wichita and Paris....on Tuesday. I so don't want to go.
Each day is such a roller coaster for Mom. We think we have made some improvement in one area, put out the fire as it were only to see the fire start somewhere else.
Today, Saturday, we are driving down to Topeka to see her brother Scott and his wife Evie, just out of the hospital after a fall! Mom will get to see her brothers little baby goats and I hope she will be able to get her mind on other things.
We also shared a birthday dinner for her here at the house with the wonderful Duncan clan. They have loaned us this house this past month so that we could be together, cook together...It has been such a godsend! Pat Duncan has also loaned us the computer that we are using up at Stoneybrook. That one is now hooked up to the television at the foot of his bed! So he sees (in some fashion) all of the pix that I have put there on the blog gallery.
Last thing: Please send me good high resolution pix of yourselves (a simple headshot) against a neutral backround that I can upload your portraits to his blog! A color shot would be best. B+W is okay too if you only have that.. Nothin' too complicated as he has such a hard time reading images! It is difficult for him to work out depth of field. Your help with these "portraits of friends" would be appreciated! It will become part of his visual therapy!
Happy Easter folks!
We, the Streeter Family send you our love