(La Jolla, CA-- March 2016)

It’s been about a year, so an update is definitely due!

It’s been another year of continued hard work and gains for Geoff, with some unexpected surprises as well.  As Geoff often reminds me, “It’s a long, long journey,” but when you have some solid gains it makes the journey feel a little easier.  

It has been six years, but it feels like two.  Time kind of stopped six years ago for us;  things move on around us, our children are growing up, but we are still in this unworldly zone of stroke recovery.

About 10 months ago, Geoff said he finally felt the fog lift.  It was a heavy fog that just sat there in his mind, kind of like he was viewing life from behind a curtain.  Once the fog lifted, he suddenly felt a clarity he hadn’t known since pre-stroke.  He felt ready to begin cautiously re-entering life again.

And so he did.  He began working on expanding the bike trail in our area again, something that had been a big part of his life pre-stroke.  With some help of family and good friends (for the communication aspect), he began brainstorming over trail ideas and re-igniting community support as well as support from local government officials.

He was also part of a fascinating speech study at the University of South Carolina Medical Center in Charleston, South Carolina.  It involved mild electrical stimulation on the head adjacent to the damaged area of the brain at the same time as doing a unique speech therapy.  Geoff did this nearly every day for a month.  It was a double blind study, so we don’t know if Geoff actually had the electric stimulation or not (either way, the machine vibrates and makes a noise, so you can’t tell), but he feels that the difference he began experiencing during the second half of the study was remarkable.  He felt much more able to concentrate in the moment on the words he was trying to produce and using the proper syntax.  There are always so many things to think about in the moment, that it can be overwhelming for Geoff — (What should the subject be? Is the verb past or present or future?  Do I need a helping verb? What subject pronoun should I use? and on and on).  All of this still requires very conscious, intentional thinking, but during the study, Geoff felt all of this come with less effort.  Maybe it was just a coincidence, or maybe not.

Since then, we continue to plug away at all aspects of language.  When a different area other than the typical language area of the brain is trying to learn language, it is a slow and tedious process.  My understanding is that there is no pre-set language neural network in other areas of the brain, so he is not just learning a new language, but he has to first create the networks that will enable him to learn and then permanently hold the language.  As someone has described this, it’s like creating a track on a hard dirt road with a bike.  After going over the road a few times, you probably will see barely any marks left at all.  You have to go over it and over it and over it, probably thousands of times, before it is an actual permanent trail.

So, when Geoff is learning some aspect of language, he may understand just a bit of it, and then maybe we’ll move on to something else.  When we come back around to it again, he may “get” a little more of it this time.  Six months later he gets a little more of it still.  It is baffling to Geoff that this process is so slow and stubborn.  At the same time, it was very exciting last month when after working with diagraming sentences, Geoff suddenly had a clearer understanding of it all in a way he hadn’t earlier, even though of course we have been working on it all along.  “This is fascinating,” he said, shaking his head at the wonder of English grammar.

Janet

Happy Spring!

Hello, friends!

My dad wanted to update everyone with a video on what he's been up to lately. Something he's been working on a lot in speech therapy is the structure of sentences, and creating full paragraphs-- so we thought this would be a cool way to continue that therapy, as well as share with you all the progress and healing he's been making!

Thanks for all continued support, and happy spring!

Geoff Hathaway: Christmas greeting

Hello one and all,

Hope you're all doing well and enjoying the happy bustle and excitement of the holiday season.

We wanted to share this brief video update Geoff put together sharing the challenges of living with aphasia and what the recovery process has been like.  He thought this would be a neat way to give some unique insight into the communicative challenges he faces as well as keep you all updated on his continued healing.

Happy holidays to everyone!

Here's an update from my mother:

It's been awhile since I've updated our blog!

It seems like for a long time, we have simply been working very hard, making good but s-l-o-w progress. So, not a lot of new news to talk about. Recently, however, I feel like we have turned some kind of a corner.

Geoff's speech has progressed to a level where instead of us completely directing his therapy, his brain is starting to "get it" enough to ask questions himself. Like, what do you use in place of "a" when you're talking about two or more things? And, why would you say "This is Geoff Hathaway" when talking on the phone, instead of "I am Geoff Hathaway."

His mind is searching for logic and rules as he re-learns the English language, but we are learning that English doesn't always abide by its rules. This is actually exciting to see though, because it means his brain is starting to take charge, trying to figure things out on its own.

And in the midst of all this, the real Geoff Hathaway (not just a part of his brain), will often laugh at how ridiculous this all seems, that he has to ask questions such as this, and learn everything again.

He spends time everyday doing things like re-memorizing irregular past tense verbs. And learning sounds again.

As it turns out, he was not hearing sounds. He could hear the whole word, but not the sounds within it. If I asked him if the "m" sound was in the word "immune," he couldn't tell you. He couldn't decipher the sounds.

So, we are backing up a bit and working on individual sounds and how to move his mouth to make them. And, how to hear them. This is something his wonderful therapist worked with him on a long time ago, but he could not connect with this exercise at all back then. Now, he can. So every day, we drill through the sounds, how to move his mouth, how to hear them, how to say a word slowly so that he can pull the sounds out of it. It's coming along. Pretty amazing.

The other day, he had a lesson in fruit. How some have "pits" and some have "seeds." And how within the category of apples, there are many types: Golden Delicious, McIntosh, etc. I'm not sure why this all made such an impression on him, but it did. He said it was like opening a distant, fuzzy memory. It was clicking.

As Geoff's language improves and he can better attach his complex thoughts onto something tangible like words, I have the unique and spectacular advantage of seeing Geoff's amazing mind reveal itself, again.


"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14



-Janet

Here's an update from my mom:

Because our Minnesota winter is lasting far too long, Geoff and I decided to leave. We
are now in Costa Rica with our daughter Maggie and son-in-law Victor for three months.
We picked a great winter to leave, it sounds like!

Our first week here, Geoff began every day by announcing: “Eighty degrees and sunny,
AGAIN!” It really is wonderful to be here, and the change in environment and weather
help keep Geoff motivated to work hard.

When Maggie and Victor were out running one day, they passed a little heated therapy
pool just eight blocks away. It was almost too good to be true! There are actually about 6
big pools within a mile of our apartment, but this one is small and warm and private.
Victor has learned Geoff’s pool exercises and has even thought of new ones. He and
Geoff go nearly every day and work for an hour at a time. Geoff feels that his
movements in the water pay off on land. Especially, he feels it in his knee control.

But that’s not all--
Several months ago -- as we mentioned in our last blog entry, Geoff’s wonderful speech
therapist back home suggested they try and keep up their speech sessions over Skype
(or similar program) while we are gone. Apparently our health insurance company had
never done this before and initially said no. We appealed it, which required a lot of
hurdles and paperwork and meetings (for our therapist, that is). One of the hurdles
even required her to be listed as a registered speech therapist in Costa Rica! In the
end, amazingly, it was all approved, and Geoff is once again the trail blazer.
This has been a HUGE plus for us. Geoff is on a good recovery path with his speech,
and even though it feels painstakingly slow, it is continuing steadily and really, he has
never had a lull with it. We didn’t want to have to stop therapy while we were here, and
now we don’t have to. Geoff continues to meet with his ST four days/week, just like he
did in Monte.

One thing (among so many) that we have learned about stroke recovery, is that you
have to fight for every improvement. There is not much that is re-learned “passively,”
which is I guess what I was hoping for at first. It seems that if you do not actively work
at it, probably it won’t happen. So, being able to continue with therapy down here is a
very important aspect of our being here.

Geoff is continuing to read I Am Malala, just completed Matilda (a less challenging read
but easier to follow), and spends a lot of time browsing various newspapers on his iPad.
(I remember at one year after his stroke, he first began reading newspaper headlines --
just the headlines -- although I don’t really know how much of them he understood.) He
also spends time on a website that allows him to read AND listen to stories at the same
time. It’s helpful to get this double input, and to work on his listening skills. Listening
and following conversations -- catching all of the sounds and words -- is a lot of work but
is also slowly improving.

We take lots of walks, and have found our favorite coffee shop two blocks away that
roasts its own coffee beans. We also go on lots of picnics, and next week we’ll be
driving to the beach for the weekend and staying at a motel surrounded by monkeys.
We’ve seen several movies since being here, all of them with Spanish subtitles.
Interestingly, Geoff can usually follow the Spanish when he sees it on the screen, or at
least get the gist of it. (He used to be fluent in Spanish.)

Many family members either have or will be visiting us while here -- we feel really
fortunate!

I’m adding some photos: one of the therapy pool, another of Geoff doing his daily
speech therapy over the internet, and another of our apartment for those wondering
where we are...

2014 update!

Happy new year, everyone.  

It's refreshing to step forward into the new year with the anticipation of new goals and challenges that lie ahead, but I believe it's just as valuable to stop and evaluate the accomplishments and achievements from the past year.  My dad has come to realize, more than ever, that goals involve time, commitment, and patience.  Oftentimes they are not concrete or immediate; they're a process.  

And here are some of the most recent, significant advances and accomplishments in his healing process.

He continues to work diligently on his speech, attending speech therapy 3-4 times a week and music therapy 2 days a week.  My dad is focusing primarily on forming complete sentences, really sharpening his grammar skills, and successfully piecing together words and ideas.  He's focusing on active and passive sentences and verb conjugations.  Besides structured therapy every week, he is also plugging away at speech-based learning programs and grammar exercises.  And we like to have conversations together that force him to really think about full sentences and grammar structure.  Speech continues to be his greatest challenge and primary focus.

He's been reading a couple of literary pieces, he just got I Am Malala for his birthday, which should be a difficult but rewarding read, as well as D-Day, a World-War II era book that he's working on for a while now.  This not only helps his information-processing skills but his critical reading and general concentration as well.

My parents will be flying to Chicago this weekend for a second evaluation with Northwestern University, where he is involved in a research study on syntax.  He recently finished up a summer of occupational and physical therapy at the Courage Center in the Twin Cities.  Both he (and the rest of the family) were very impressed and pleased both with the incredible staff as well as the results of the therapy program.

On the side, he continues to work on recuperating finer muscle movement in his arm, hands, and fingers; he uses the Tailwind arm exercising machine, exercise stretch bands, cowbells, and the occasional Wii workout in the living room.

The exciting news is that both my mom and dad will be flying down to Costa Rica at the end of the month for an extended vacation in Central America!  They're excited to swap the snow and cold for some sunshine and palm trees; the warm weather will make physical exercise, like the long walks my dad likes to take, easier and much more enjoyable.  The change of scenery will be a refreshing and a much needed respite but will also give my dad a new chance to really dig into therapy in a new environment.  My dad's absolutely fantastic speech therapist here in Montevideo has also figured out how to continue her speech therapy sessions with my dad via skype during his time abroad, which will allow my dad to continue to really plug away at speech despite his absence.  My husband, Victor, and I are more than excited to have them in Costa Rica with us so that we can drag them along on lots of wild adventures.

Coming home and spending time with my dad really gives me a chance to see the improvements and accomplishments that have taking place during my absence.  These 3-4 month periods of not seeing him give a clearer picture of what he's been focusing on and the areas where he's been improving the most.  It frustrating for my dad because the simple act of responding to a question or making a general statement, something we normally do so effortlessly, is a difficult, conscience action on my dad's part that requires thought and deliberation.  It is so impressive to see his deliberate effort to find the words and form a perfect sentence.  Despite it being much easier to just continue to use words or short phrases to convey his ideas, he's disciplining himself, slowing down and taking the time to challenge himself to form a full statement through complex sentences.  But it's not just the fact that he forces himself to do this, it's his ability to make the sentences come out RIGHT, an incredible feat!

The process continues; his invaluable discipline, patience, and determination show through with every new day of healing.

-- Maggie

September Update.

An update from my mom:

It’s been a long time since we’ve posted on here!

 Last spring, we decided it had been a long time since Geoff had gone to formal physical and occupational therapy sessions. (Although of course he exercises on his own.) We thought it would be helpful to meet with therapists again, so we looked into Courage Center in Minneapolis. It turned out to be a perfect fit! He started going every Thursday and Friday in June, and will probably continue until the snow comes. (It’s a 3-hour drive for us.) Geoff’s therapists there are fantastic, and they love working with him because he works so hard and is able to put into practice a lot of what they are working on.

His PT is enjoying breaking apart his gait and tackling one muscle group at a time. She is trying to get him to lift his hip higher when he walks and work at controlling his knee so it doesn’t snap back so much. He can do these things when he really concentrates now, which is great, but when he’s doing his normal walking there are so many other things for his brain to think about, that it’s hard to incorporate everything. His OT is working at quieting his larger and far stronger shoulder muscle group on his right side so that his smaller, very weak muscles further down his arm have a chance to figure things out and learn to work again. She is designing exercises that help him with this. All of this requires building up new paths in the brain, not just reviving old ones. Building new paths takes a lot of time: not just months, but years.

Probably the most exciting new event is that Geoff has been accepted into a pretty amazing new speech study through Northwestern University in Chicago. They want participants who have regained a lot of vocabulary words, but who still struggle to put them into sentences. He will be doing this about 4 hours/week. It involves massive amounts of testing every three months -- testing his speech, brain activity through MRI’s, and eye-tracking (which is quite fascinating). We just spent a week in Chicago getting to know the research team and undergoing the preliminary tests, and hope to get started with the therapy next week.

 We are nearly done with Rosetta Stone 1, but will probably put off starting 2 until after this research study is complete, in about six months. 

Other speech items that Geoff is hitting hard these days: numbers, prepositions, question words (Who? What? How? etc.), and verb tenses. Again, it’s not a simple matter of “waking up” those language memories, or a quick language lesson. It’s learning them again hundreds and even thousands of times, before the new paths in the brain finally “set.”

 Rebuilding the brain is slow, hard work, but we are finding that it does happen.

"But let endurance have its perfect work, that you may be perfect and complete, lacking in nothing. " --James 1:4