Update from Tyler - March 19th 2022

 Sorry.  Forgot to take a picture of Tobias today.  I'll add it tomorrow.

I'm encouraged by the progress that Tobias is making week-to-week.  When he arrived in Germany he went several steps backward.  The first hospital he stayed was quite unhelpful toward his recovery, but he stabilized quickly in the rehabilitation facility and has made progress each week.  

Up until March, his progress was scant, but there is no doubt that he was improving.  The pace of his progress since March, however, has increased.  He spoke today more frequently than ever since the injury and he is becoming stronger in his movements.  His left side is still unresponsive, with the exception of the occasional, potentially unintentional movement of his left arm.  His right arm is quicker and he never failed to respond when I asked him to answer by moving his arm.  Several times today he volunteered a thumbs up or down answer to questions with binary responses, but Katja and I have agreed to challenge him to always give a verbal response.  

We feel his ability to respond is better than his will to respond.  This has mainly to do with the damage to his frontal lobe.  The damage there appears to have taken away the natural inclination to respond to most stimuli.  Tobias, for the most part, has to be challenged or specifically questioned in order to elicit a response from him.  Today for example, I had been working with his left arm for several minutes, bending it at the elbow slowly and asking him to feel the movement and help me move his arm.  I asked him if he was comfortable and he said no.  I asked him what was hurting and he said his left elbow.  I don't know if the range-of-motion exercises that I performed were causing him pain or whether the pain was due to the high degree of tone (muscle stiffness) in his left arm, but he wouldn't have mentioned anything if I didn't ask him about it.  There are times, luckily, when he does volunteer information, but one of the deficiencies that we have noticed is his lack of active communication.

When asked to speak, his verbal responses are unreliable, but becoming more frequent.  His responses are still rarely vocal.  Normally he manages a quiet whisper and sometimes is only able to move his lips.  I can't figure out what enables an audible response.  Tobias will remain silent through several queries and then a minute later speak clearly.  I can't tell if the subject matter interests him and allows a connection to be made or whether he just gathers enough energy to fire the complicated network of synapses properly for speech at these unpredictable intervals.  Two of the improvements that point to recovery are 1) his more frequent oral responses, including a higher probability that he will answer with his vocal cords, and 2) his increased tendency to volunteer information.  Today, for example, he actively responded to several things that I said with no specific prompt.  Me: "It's nice to see you."  Tobias: "you too".  Me: "I want to get you back to college."  Tobias: "Me too."  It's almost to the point where we can carry on a rudimentary conversation.  For the most part, I can present Tobias with my side of the conversation, but he doesn't engage unless I ask him a specific question.  I used to think that it was because he couldn't respond, but now I think that much of the time his brain doesn't tell him that he should respond.  He needed a direct request to recognize that he should engage.  Today, he predominantly didn't respond, but he did respond more than he has done in the past.  I hope this means that his frontal lobe injuries are getting fixed or finding new pathways to return Tobias to more normal function.

Another part of Tobias' brain that showed damage in the MRI and CT scans is the hippocampus.  The hippocampus helps sort out short-term memories and Tobias does show a deficiency here as well.  He usually doesn't remember who came to visit him the day before, but he remembers all his family, friends and the things he did before the injury.  Today we went for a long walk because the sky was blue and the sun took the sting out of the cold air.  Underway we passed a lady sitting on a park bench with a mother labrador and four young puppies.  I pulled up so that Tobias could get a good look and the puppies lolled over and started to investigate the wheel chair.  The lady gave me permission to put one of the puppies on Tobias' lap and Tobias stroked the black fur with his right hand, smiled and made a laughing sound.  After a minute, I set the puppy down and we continued our walk.  Two hours later, when we were Facetiming with Katja, I asked Tobias was animal sat on his lap during our walk.  He said that he didn't know.  I recounted the story and asked if he remembered the puppy, but he said no.  We're told that patients with this type of injury can learn to compensate as the brain rewires itself, but it is always uncomfortable to recognize the ongoing challenges that Tobias will face.

Tobias has shown a surprising amount of cognition given his level of injury and the degree of other deficiencies that he has.  He was able to count over 20 for Katja and do simple math problems.  Other areas prove more difficult however.  He can't keep track of what day it is and has had a hard time figuring it out with simple clues.  I only visit him on the weekend and I always ask him if he knows what day it is, but so far he has never remembered.  Then I remind him that I only come on the weekend and that I just arrived.  He still didn't know what day it was, but he was able to rattle off the days of the week... Monday, Tuesday, Wednesday....  I asked him was the first day of the weekend was and he answered Saturday, but he wasn't able to figure out that today was Saturday because I only come on the weekend and that I just arrived today for my visit.  The brain is a strange machine.

My heart and my head are a tangled mess because of Tobias' situation.  In 1980 I saw a movie called "Somewhere in Time."  The hero from the movie goes back in time, falls in love and becomes so happy in his situation that he doesn't think about being from the future.  Near the end of the movie he feels something in his pocket and pulls out a penny that he inadvertently brought with him from the future and remembers his future life.  His reality unravels and he is pulled out of his dream back to his real timeline.  I feel the same way when I see photos of Tobias from before the accident.  For the most part I'm at peace with our current situation and prepared to do what needs to be done to help Tobias without pining over what might have been, but it just takes a moment of seeing the strong, confident, able-bodied young man that Tobias used to be to remind me what we have lost and pull me out of my peaceful world.  It's a horrible thing that happened to Tobias and our family will continue to bear the burden of his loss for a long time to come, maybe for the rest of our lives, but he is improving, we are together and we love each other.  Katja, Emily, Tobias, Sebastian, Chris, Eloise and me.   Our country is not being torn apart by war and there is still hope for Tobias to live an independent and full life.  I met Max today in the dining hall.  Max was hit by a street car (trolley) traveling 60 kmh while riding his bike in 2019, well before the pandemic.  He sustained severe brain injuries and had his cranium removed and replaced, like Tobias.  He was unable to move any part of his body at first, just like Tobias.  He wasn't able to walk for two years and he has been in the same rehab facility since his injury, but today he is walking on his own and can carry a normal conversation.

Hope over fear.