Tuesday, September 3, 2013

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,
"...it'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.
Sincerely,
Ray & Barbara Rathert
Posted May 22, 2011 4:48pm
Thanks for the update, Lissa. Call when you can.
xo
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!
lissastreeter@yahoo.com
Happy Easter folks!
We, the Streeter Family send you our love
Lissa

Medicare 2011 : What if Rapid Recovery isn't Rapid Enough ? April 9, 2011

Well we have lots to report on from Manhattan.

First on Tal:
We asked that they lower the amount of pain medication that he was getting. "Synthetic heroin" Bruce called it! So you can imagine why he saw his friend Hall and Johnny Cash having lunch with him. Hopefully this will help him be more alert, be able to work better with his team of physical therapists.
We are learning quite alot about right sided strokes from Melia, his speech therapist. That ornery quality he affects is all part of the game she says.
The two hours that it takes to convince him that yes, he must tell her what the pictures are of on her page: tree, star,apple, piano...turns out he can identify quite a few but coming to the bottom he becomes very left brain and abstract. A clock becomes a "boy in a field flying a kite" and finally "an onion" cut in half. A lamp becomes a banana.
Questions all soooo beneath him he says!"You think I'm an idiot he says!" But we learn that he CAN see and recognize quite a bit but sometimes can't find the word describing it!
Sheila, another physical therapy nurse and one that has had the most difficulty with him, got the big prize two nights ago. A drawing of the Dragon Stair sculpture, in front of the National Museum in Korea! Yes! There was the building behind it, the tall pine tree to the righthand side and the way the piece sits drawn with care and precision. And he signed it. "Tal" with a little moon.
Wouldn't you have liked to be the recipient of one of those ? I certainly would have ! I hope she understands what she was given ! 
We are trying to lengthen the time that he keeps his eyes open. So far his record is 40 seconds. It has to be 3 minutes by the end of the month they tell us or Pop's Medicare wont foot the bill for all of this "Rapid Recovery". That's a reality to deal with too. If he doesn't make enough visible progress every month. They will stop the therapies because Medicare will no longer cover squat all. 

Tal Streeter at The Beach Museum, Manhattan, KS: April



As we get closer to the opening of Pop's show at the Beach, help comes! Bruce George, Uko and Hideko Morita . 
Bruce George was the first. Bruce, who had done total restorations on all of this work as well as constructing the new pieces, came to install the show with Lindsay Smith, installations designer at the Beach. What an exciting moment when we started to get the pieces unpacked and Bruce situated them in the space of that enormous hall.
Most of these were simple red sculptures made in the late sixties and seventies. Then Bruce had smaller "floating "ghosts" of these pieces in flat white composite polymer that floated above nearby...Elegant and graceful, they totally inhabited the space. We think Tal will be thrilled when he is finally able to visit this installation.
I'll try to get a pix of that up here for those of you unable to travel to see it yourselves. We certainly welcome all of his friends to Manhattan to see it, those of you that live nearer!
Bruce spent time every night with Tal, the night owl, describing the days events. This was incredibly uplifting for him! And we recommend that his local visitors visit the show before visiting him. It will be as uplifting for you as it is for him when he hears it described by a friend with a fresh pair of eyes!
Bruce's visit was totally manna from heaven for all of us here. Good humored, impeccable sense of space and flow, he and Lindsay and a bit me, Lissa (!!!)got the show at the Beach up and installed on time and most importantly, really beautifully!
I think I will leave it there for now. Uko and Hideko Morita have arrived from New York to be with Tal this weekend.

Uko Morita and his wife Hideko arrived yesterday ! So we continue the positive stimulation for Tal!
I'll let Uko describe himself how he found Tal:
I was so lucky that I came on one of his good days.Certainly there is the problem for moving his limbs. As far as his mind goes, it is there and clear. We had quite a lengthy conversation. When I asked him I had lots of questions (about life, about work, about business, to ask him, he replied "Any time!"
Museum Show was wonderful and none of the pieces looks old! Certainly the space was limited, long and thin, but it fills it so well!

Hideko brought a kaleidoscope and brightly colored cookies for which he was interested in trying a few! He still has a sweet tooth, Tal Streeter!
When she was leaving she said "Well, we are leaving Tal!" He answered: "Don't go far!"
From Manhattan,
Lissa

Tal's Reality : April 7, 2011

On some days Pop seems easier to engage, enjoys talking for a few seconds, and seems quite aware of his situation. Those moments are few and far between.

The reality is : 99.9 % of the time his eyes are closed and he sleeps, even when sitting up. He shuts down, closes his eyes after a few seconds, when asked to do the therapies. No amount of encouragement or anything really (!!!)can get him to do something that he doesn't want to do. Jason, his nurse and helper (wearing red scrubs) says the best thing to do is to try and distract him towards thinking about something else. Then to retry the shower, the speech therapy etc.
He has made some progress in holding his mouth shut, in holding his head up and ...in feeding himself! That means judging where the plate is, aiming the spoon for his favorite part, mashed potatoes, then getting that up to his mouth, chewed and swallowed. Then reaching for the cup and getting that up to his lips and taking a small sip.
Another positive thing or two: he asked for a pencil and paper and made his first forays in that department. He made little drawing gestures in the air before finding the paper and making a mark or two. Drawing a hesitant line or two. To that end we have gotten him large sharpie markers and a good sketchbook with a hard cover. So that if he asks for that, even in the middle of the night, it is at hand.
His first trys with Hall's CD player also gave him great enjoyment! About the Harry James that he was listening to he said:"Certainly gets you going!"
So we will be including more music in the future. And hopefully trying out the drawing pens!
Mom seems to be doing well. She has really gotten herself organized and has such a circle of folks surrounding her with good steady support! met a young woman R, an Art History major at the college, at the coffee shop where Mom often goes to just get away from it all, to be surrounded with life and lovely faces!
Bruce arrives tonite from Pennsylvania to help them set up the show at the Beach Museum. It's going to be quite a whirlwind.

Lissa (in Manhattan)