Hello all!

Contrary to any rumors you may have heard I AM alive and mostly well. Family, thanks so much for all your love, support and positive energy. Friends from work, I'll be by to visit you really soon, sorry to leave you with all that extra stuff to do the last month. Cycling world, I'm not allowed to ride yet, but my doctor has approved ten minutes a day at low intensity on the trainer, so if you feel the need to push it, you can bring your trainer over and join me on one of my "brutal sessions". I'm very much glad to be alive in the world and I hope I didn't scare any of you too badly. I'm around at vanstaverenj@gmail.com

He's Home

This morning, Danielle and I drove up to Syracuse and brought him home. He's very happy to be here, and is currently enjoying a snooze in his own bed. He gripes about the limitations (can't ride his bike, has to have someone with him all the time, etc), but understands why they are there and is willing to work with them. Once we get our bearings and have a routine established we'll be happy to have visitors and arrange for people to come and hang out with him. Thanks for all your support - we couldn't have made it this far without it!

Steve

We're Getting the Hell out of Here!

That's right! Jason is GOING HOME!!! He will be discharged (released) tomorrow! Now is when the hard part really begins....

Isabel

Run While the Coast is Clear!

I'm tired and off to sleep shortly, but wanted to add a quick bit about the day.

Jason's schedule was pretty typical: six therapy sessions (PT, OT, and cognitive), about every hour beginning at 8:30am.  But the highlight of today was a trip to the Carousel Mall.  I couldn't believe it when the recreational therapist told us this morning.

In the late afternoon we boarded a van for the mall, Jason and I along with another patient and his mother (Jason did complain about having to take the wheelchair lift the one step it would have taken to get out of the van).  We had some goals--get a map, go into some stores of Jason's choosing, and eat dinner at a restaurant, all in an hour and a half.  Walking through the mall was pretty uneventful.  We went to the Apple Store and Ritz Camera.  Although he struggled a bit Jason was able to successfully navigate us to those stores and to dinner.  When we got change back at Starbucks he mistook 30 cents for 80 cents, but was eventually able to come up with the right amount.  He also handled the escalators beautifully!  I did notice he has a little trouble keeping his attention focused.

We ended up having a wonderful dinner with Paul, the recreation therapist and a brain injured person as well.  When the bill came Jason made a few tabulations on his napkin and was successful in determining the final price with the tip included.  He said it was a fun afternoon, and a really nice escape from the hospital.  He said, "It's like real life again."

Isabel

Uncle Jim pays a visit

I was able to get up to Ithaca this weekend, and I had my first opportunity to spend some time with Jason and the rest of the family since the accident. I found my interactions with Jason to be encouraging and fascinating. Jason seemed to have a firm grasp about what had happened, where he was, and why he was there. One of the first things he mentioned to me, was that he felt he had "gotten away" with a lot of ill-advised stuff over the years, and that if this is the worst thing that has happened as a result, he felt he was lucky. As you can tell from prior posts, this increased awareness was a very recent development, so congrats to the patience and persistence of the on-site crew in getting through to Jason.

Another aspect I found encouraging is Jason's eagerness in thinking about everything and anything. He is articulate, logical, introspective, and expansive. However, he does this to a fault, over-thinking constantly on random or trivial matters. For example, he was playing Scrabble with Isabel when I first arrived, and I noticed a number of viable plays from his rack. When we wasn't playing quickly, I assumed he was having trouble finding words, but it turns out he had created some quixotic rules and ridiculously high standards for what to play - it had to be "nifty" (my word), filling in gaps on the board and utilizing as many already-played tiles as possible, and he had to feel good about the words that he was forming, though it didn't have to be an actual dictionary word if he could make a good argument for it. When he finally relented to make a "boring" play and played "loathe", one of the longest words he could make, I was ready to hug him!

So it's great that Jason can think and analyze, though he is still having difficulty with the judgement side of things. He has a marked tendency to jump to worst-case and greatly exaggerate, and this often creates friction with the hospital staff, which then needs to be smoothed over by someone from the family. For example, he has a lot of pain in is shoulder, but won't take pain pills of any strength, because he claims it would make him a drug addict. When the therapists (perhaps carelessly) refer to the need to "train" and "reprogram" his brain and his thinking, he goes off on how he doesn't want strangers controlling him and telling how he should think. One carelessly-worded exercise allowed for a different interpretation which yielded different answer, and Jason was convinced it was done on purpose as a trap for him. Jason's increased acuity is great to see, but I'm not sure the therapists fully appreciate some of the advances he has made, as his tendency to go off on tangents and rants obscures how much he really does grasp.

Jason seems to be making progress on the short-term memory side; a friend of his had come by Saturday evening after I had left, and when I asked him about the visit on Sunday, we was able to recall it and recount some details.

Overall, what really bowled me over, was hearing Jason talk passionately about how much he was looking forward to revisiting things, now that he had a fresh, new way of looking at things. Presumably this is a result of having to consciously think about thinking (if that makes any sense), but with him relishing thinking that much, I can't help but be optimistic about his recovery. He has already decided that he can find people to craft better recovery exercises than what the therapists are using!

Being there gave me even more appreciation for the relentless attentiveness this has required from Isabel, Suzanne, Steve, Danielle, and Peggy, keeping both Jason and the hospital staff on the right track. It's plenty exhausting, and not just for Jason (see picture). Hang in there, it's working wonders!

Jim

A great end to the work week

Jason continues to have difficulty believing that he sustained a head injury.  He does not recall the accident, he has no scars on his head and by some miracle, he does not have headaches.  Yesterday he had two experiences that brought the situation into sharper focus.  

In the morning, he lost 2 out of 3 games of Connect 4 with the therapist.   He won the third game, and it was easy to see that he had remembered how to play by the end, but he was aware that he should have easily won all three games.  Later in the day, another therapist gave him some bills and had him write out checks, enter the amounts in his check ledger and then balance the ledger.  During this process he admitted that there was definitely something wrong with his brain.  He was a little discouraged at the prospect of having to re-learn what he has lost but we were able to reassure him that much of the information was not lost, it was just that the pathways to it were scrambled and would have to be re-established.

Isabel and I were both strengthened in our certainty that Jason will emerge from this better than ever.  We were encouraged by how much he does remember and by how fast forgotten skills come back to him.  In the morning, two of our favorite therapists showed us a worksheet that Jason had filled out on Tuesday and the same worksheet done that morning.  The difference was night and day.  Isabel had a really wonderful time watching the check writing therapy.   Apparently Jason argued about each bill and the various quackery that it represented.  He launched into a tirade when it was pointed out that he had received the senior citizen discount and another one when he was asked to pay the minimum balance on a credit card bill.  He told the therapist that he was "not a minimum balance kind of guy."  I was not there but according to Isabel, Jason was having a field day.  Isabel was in hysterics and the therapists, who try to be very serious, were unable to keep from laughing out loud.  

Jason continues to require tons of sleep but he is awake enough to be going stir crazy.  He says that the only place more restrictive that a hospital is a federal penitentiary.  Last night he had had it with the hospital and for what seemed like a long time, he was in a very foul mood.  We took him outside, but Upstate is an urban hospital and a far cry from the natural surroundings Jason loves so much.  Isabel took control of the situation and ordered a pizza which we ate in a little cafe area on the edge of the front lobby.  It really felt like we had gone out to celebrate on a Friday night, which we had.  After that we got ice cream and went back to Jason's room and played memory games.  The evening of normalcy was a huge gift to the three of us and we were reminded of how lucky we are.  

Thank you all for your support and positive energy.  It moves us forward every day.  

Peggy

Life in Rehab, second attempt

Hello everyone.  This is my second attempt to describe life on 2N.  The first attempt was lost in University Medical Center cyberspace.  I hope this is coherent because the events of the past 12 days are catching up with me.

Jason's day begins at 8 am when they get him to dress and clean up.  At 8:30 he has a group breakfast with other residents.   This experience focuses on cognitive therapy in a social setting.  Jason says that the hospital food is killing him and he is probably right.  

At 9:30, 10:30, 11:30 and 12:00 he has physical therapy.  This is focused on helping him regain his balance and especially repairing the muscles strain to his left shoulder that occurred in the accident.  Most of the physical therapy sessions also include a cognitive component which is really what he needs now.  His body, except for the left shoulder, is pretty much healed.   The 11:30 session is recreational therapy where he plays games with the therapist.   He really enjoys this because the therapist is a man about his age and they have common interests.  This therapist, as well as many other staff members, has had a head injury.  They are a constant source of inspiration.  

After lunch Jason passes out until about 2.  I have read that the injured brain requires a lot of sleep to heal and this certainly seems to be the case with Jason.  For this reason we ask that you limit visits but that you send cards or post comments on the blog for Jason to read.  He is deeply touched by your expressions of love and concern for him and this is very motivational.  The address is University Medical Center, Rm 2234, 750 E. Adams St. Syracuse, NY 13210. 

At 2 pm Jason has a focused cognitive session where they work on his memory and on making connections in his mind.  This really highlights which of Jason's circuits are damaged.  He can multiply 13 x 5 in his head faster than I can but he cannot look at a paperclip and then draw it when it is no longer visible.  Steve observed this activity with him yesterday and Jason commented that this exercise should be really easy for him but it was not so maybe he did have a brain injury.  He told me that it was very scary to admit to himself that this was true.

After another PT session at 3pm, Jason passes out again until dinner.

To my mind, Jason's recovery is miraculous.  He knows where he is and why.  His short term memory is definitely coming back.  I was very concerned that he could not remember how old he is until Isabel told me that he was pretty sketchy about this even before the accident.  Some of the other circuits may take a little longer but were are thrilled with his progress.  Until he is exhausted, he is lucid, eloquent and very opinionated.  He is easy to be with because he is interesting and funny and because he constantly expresses his appreciation for our love and support.  We have all been enriched by this experience.  

Please keep sending your positive energy in this direction.  Miracles are happening here!!!  We are so thankful for all of you.  There are no words to adequately express my gratitude.   Thank you, Thank you, Thank you.

PS. Would Ralph S who visited yesterday please call me at 904-477-3208.