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 Lecturesin Edinburgh where the great neuroscientist,Michael Gazzanigadescribes what we understand 'bout the left and right hemispheres these days.
Here is the link: http://www.youtube.com/watch?v=mJKloz2vwlc
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
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!