The Mini Vacation

Our excursions out of the house usually consisted of going to the Wellness Center, the doctor (several at that), an occasional movie (and I do mean occasional, movies for TBI survivors have to be hand selected for content, i.e. too much noise, too much stimuli, level of information -i.e., can he follow along.), and once in a while to a restaurant to eat (again hand picked as to whether he can comfortably enter a restaurant, parking, bathroom facilities, level of noise and if the food is good -ha ha, that one is for me!-  If I have to take all the time to figure this out and get him there, the food better be good!)  If Tim has just been cooped up in the house due to the weather, I like to drag him with me to the grocery store or to Walmart.  I shop, he just sits in the car and people watches and actually enjoys it!  I stop at Dunkin Donuts on the way and get him something to drink and occasionally a little something to nibble on.  He brings his Nook which makes a people watching excursion complete!  

When were first got married,.we would dream about where we would go visit when we retired.  Since Tim played the bagpipes, we had hopes of someday going to Scotland to see pipers at the Royal Edinburgh Military Tattoo or perhaps a trip to Ireland. Certainly trips to Walmart never made the cut!   Boy,our plans have really changed!

In March of 2012, spring break was coming up.  Most people think of Florida and the usual warm spring break hideaways.  I had a brilliant idea.  We would take a trip to Indianapolis to see our son and daughter in law's new house.  Tim's durability in the car was getting better.  I knew he could survive at least forty five minutes without having to get up.  So I figured he could possibly push it to maybe and hour or so (I always have big expectations of him!).  I called my kids and put them to the task of finding us somewhere to stay.  Their house at this time has not yet been made "Tim-proof".  So we thought a hotel room that was handicapped accessible would be the best bet.  My daughter in law found us a wonderful place and she even found back up in case this one did not work out.  

Packing up Tim to go on a trip is harder than packing up kids!  You know if you forget something for the kids, you can just run to the store and pick it up.  With Tim it is a whole different ball game.  I knew this would be a learning experience and a trial run to see if we could do it.  So not only do I have to pack my things, I have to carefully pack all the items that Tim needs to function on a daily basis keeping in mind that this was only going to be a one night stay!  I just wanted to make sure all the bases were covered - just in case!  Thankfully, we have a minivan!

We had all our arrangements set.  Mind you that this is the first time since our trip to the Bahama in January of 2006 (two weeks before his accident) that we have gone more than twenty five miles from the house.  My thought was that if we needed to pull over every so often, we would.  I did pack some munchies, in case we got hungry, but if one of our stops needed to be a restaurant, then so be it!  Thankfully, we had a lovely day to travel.  It did start out foggy, but as we left the Chicago area, it started to clear up.  Our trip was under way!  Believe it or not Tim was actually pretty comfortable.  It was me who at one point decided that I needed to use a restroom.  About halfway to Indy, we stopped at one of the rest areas on the way.  It actually was a very quaint area and was packed with many vacationers on their way, probably further that our destination of Indianapolis.  Tim decided that he was going to get out and stretch.  Once he got up out of the car, he decided that he was also going to use the restroom as well.  The facility said it was handicapped accessible, so we thought, OK, piece of cake.  Ha!  I was able to get him into the building.  The bathroom was a different story.  The entrance to the men's bathroom had a narrow door, which opened to a hallway that made a quick left turn as you entered the door. Now, Tim has a very hard time bending his right leg, Even seated it sticks out a bit.  I pushed him in and as we made the turn, as fate would have it, he got stuck, leg sticking out and chair wedged in at an angle.  Now, this is a rest area with a high amount of traffic of gentlemen, who need to use the facility and my husband was stuck in the hallway blocking their entrance or exit.  As I looked up I could see the men's urinals and thought, oh no I am not going any further. Thankfully, a nice young man who just was exiting, hopped over my husband and his chair and helped Tim stand up and then rearranged his chair.  From that point on, Tim was able to go to the handicapped stall.  Which according to him was another whole experience.  It was really a converted closet with a toilet. Me, in the meanwhile, was in and out of the ladies room in a flash as was waiting for him to come back out.  I sat and sat and sat waiting.  Now I was getting worried and was watching every male who was going in and coming out, for one that looked like he was decent enough to check on Tim.  Finally, the custodian of the facility, who saw us originally enter the building, came to my assistance.  He told me he would go in and see if Tim was alright.  A few moments later he said that Tim would be right out.  Exiting the bathroom was much easier the entering. The custodian helped guide him out and we chalked that one up to a real learning experience!  

The rest of the drive was really quite uneventful!  It had been so long since I had driven out of an urban area, that I couldn't help but marvel at the vast farmlands and open areas.  We passed by a windmill farm.  We had driven this way in the past on our way to Florida and I did not recall ever seeing these windmills.  So it was quite a treat!  Indy was soon on our horizon. 

We finally made it to their house!  Tim's next challenge...the steps!  Our son, Mike was actually able to take Tim part of the way up in his chair via the grass.  Tim really only had to navigate a few steps.  There is only a railing on the right side of the steps and since Tim's right arm cannot help him out, Mike and I were his support. I also brought along a heavy duty walker that Tim could lean on as he stepped.  Our daughter in law, Cayley grabbed Tim's chair and tossed it into the house and held the door so he simply walked into the house when we made it to the top.  He did it!  We got the tour of the house and it was just beautiful!  By this time, it was time for lunch and my son thought we would take a walk (since the weather was so beautiful) to a local Cajun place.  You guessed it, poor Tim had to go down those stairs!  But going down proved to be much easier than going up.  Before you know, we were off to lunch.  On our return, we went on a driving tour on Indianapolis and checked into our hotel.  The room was very accommodating.  We made a note that if we ever returned, it would definitely be on our list to stay at again.

The rest of our stay in Indy was just great!  Tim managed the stairs three more times.  The night at the hotel went well!  We now know what kinks we have to work out, should we stay there again.  Our visit took in great food, good memories some laughs, and a definite learning experience.  But most importantly, we were so thrilled that we actually made it to see our son and his wife and we now know that we can do it!  Of course the next time around, we will be better prepared and all the wiser!       

Another TBI Perspective and Catch Up on a Year Gone By!

I haven't written anything for quite some time as I thought I had gotten everything out of system.  Writing about my husband's journey felt good and got a lot out of my system.  I have told the story a hundred or more times, but writing it really did the trick.  However, I recently read a book that was recommended to me by my daughter.  She read it for one of classes.  She is a grad student studying speech and language pathology.  It was about a man's TBI journey.  I can say, so what, I have been there.  But it was a very interesting book.  It really gave me some insight into another's person's trial and tribulations on the road to recovery.  There are many people out there who are victims of Traumatic Brain Injury.  But everyone's recovery process is different.  There are the same scales that they use to measure levels of consciousness or levels of coma and similar areas of functionality and cognitive abilities.  But how a person moves through theses areas is really unique to the person.  When I read the book, I was fascinated by this particular man's progress.  It was much quicker than my husband's but a bit more intense and worthy textbook material.  The book came out a while back, was well received, the critics loved it, as well as people who read the book and left their personal review.   But what intrigued and bothered me most was the point of view of the person writing the book.  As someone who lived through this similar scenario, it was truly interesting and disappointing at the same time.  So much so that I had to reopen this blog and re-read everything that I wrote.  The life of a caregiver is not all cupcakes and roses.  But the life of the person recovering from a brain injury is much worse.  I believe that a caregiver should be a strong person yet possess equal levels of empathy and sympathy.  It is not something that most of sign up for, it just falls into our laps.  But thanks to such a wide network of family and friends who truly understand the magnitude of what has happened to Tim, we have been so much more blessed than most.

So, after reading this book and re-reading my blogs, I felt that perhaps, my husband's story and our family's journey was just not finished yet and perhaps I still had a few more things to write about.  

The last thing I wrote about was the sixth anniversary of my husband's accident and since time does not stop, we are actually now getting close to seven years since his crash.  I would like to say that Tim, has seen so many more improvements.  But at this point in his recovery, the milestones he makes are very small, yet significant in our eyes. So to catch up a bit, Tim continues working with his personal trainer on a weekly basis.  Because of this, his need for Botox in his arm to aide in its mobility has decreased significantly.  I think that when Tim's trainer goes to sleep at night, he dreams up new ideas of ways to torture him.  But, when I come to pick him up at the end of his session, Tim, dripping from sweat, always has a smile on his face and tells me what a great workout it has been.  Next up...more mini milestones!  

February 16, 2012

Today is the anniversary of my husband's accident.  It is hard to believe that time has moved so quickly since that day.  Yet when I look back, it is unbelievable how far he has come.  It has become pretty evident that he has reached a point where this is as good as he will get.  But that's OK, he's functional and content!  He can no longer drive, but I make a pretty good chauffeur! He needs help in several areas, but we work it out together!  Phase one of his life ended on this day six years ago.  However, phase two of his life also started on this day.  

So throughout this time, we have adjusted to life as it is.  I do what I need to do to assist him and we do just fine.  The mechanics of this new phase has adjusted well!  Tim survived and continues surviving.  He is not at all bothered by the fact that he is now handicapped and that he has limitations.  

There are a few things that he wishes he could just do alone.  One is to be able to just walk into the bathroom and take a shower, unassisted.  The other is to be able to walk out of the shower and just get dressed.  A simple thing that we just haven't figured out yet.  

As a woman, I love shoes.  I probably have more than I should ever tell anyone about!  I have a pair for the gym, heals, flats, sandals and boots.  Of course they also run seasonal.  I have pairs for spring, summer, fall and winter.  Then again, you must have ones that go with dresses, pants, shorts, skirts and depending on the color, several for that too!

Tim has one pair!  They are specially made to help adjust to the discrepancy in his right leg and foot.  Since the day that he could actually stand up and take a few steps, it has been a journey to find the right shoe for him.  He started out at one particular shoe store.  They made a special plaster cast of his foot and designed a special shoe for him.  It was just awful!  It was uncomfortable and simply ugly.  I have always felt that just because my husband has some disabilities now, there is no reason that he has to look totally disheveled.  I wanted him to look good and feel comfortable.  

So I took him to another doctor to get a second opinion about his foot and leg to see if they could recommend another shoe specialist.  They did and as luck would have it, she worked out of the same store as the other person.  So we decided to give her a try anyway.  She did create a shoe that my husband was happier with.  

Great!  Or so we thought.  Because of the problem with the original shoe, they owner of the store did not want to deal with us anymore or the competition between the two specialist, even though the second shoe turned out well.  So we now had a good shoe, but no place to get another when the time came.

Of course that time did come.  With Tim becoming more mobile, the height on his shoe needed to be adjusted again.  Most recently, his doctor from RIC remeasured his leg.  I think that this was the first time that this has ever been done.  She measured it to be 8 - 10 centimeters shorter than the left leg.  (It was hard to measure due to his hip displacement and tone that is always present in his right leg.)  This meant that his shoe height could be dropped yet another quarter to half an inch.  Progress!  

And yes, we did find a new place to go to.  Near to us is a place called Scheck and Siress.  They are an orthotic and prosthethic facility who deal with the problems that people like my husband have.  The pedorthist that takes care of Tim is board certified and a runner!  She sent us over to the New Balance store that recently opened up in Shaumburg.  I bought Tim a regular running shoe, in black, that fit well and was comfortable for him to wear.  I brought it back to her at the facility and she remeasured the height needed for the shoe and dropped down the heal of his shoe a quarter inch from the previous shoe. He can wear these shoes for any function as they blend in well with his entire wardrobe!  She also had some ideas on what to do about making him up something to enable him to walk into the shower!  She definitely made him a very happy man!

So on this anniversary, that could be remembered as being sad, we don't.  We are so happy that Tim continues to have the good fortune of people still looking out for him and helping him along his road of recovery.  I guess when you think that this is as good as it gets, you realize that there is always room for things to get better!

A Date!

Today was a milestone day!  Tim and I had a date.  We actually went to see a movie.  Now I know you are thinking, big deal.  But for us it is a big deal.  We don't go on dates.  We go to doctor appointments, therapy, personal trainer and the grocery store.  But today we had a date!

I have been off for winter break these last couple of weeks.  And what a simply glorious break it has been. We have had time to spend with our family and friends, relax and be a little lazy. But today was a little different.  I know that people go the the movies all the time, but we don't. Tim having suffered a traumatic brain injury, movies aren't always the easiest thing to do.  We have unsuccessfully tried it in the past.  Depending on the type of movie, the actions, sounds and activity on the screen can be a problem.  People with brain injuries have a difficult time concentrating with all the massive amounts of stimulation going on. We have always treaded very lightly where movies are concerned.  So I was pleasantly surprised when I suggested we go to see this movie and my husband agreed.

However, I almost thought we weren't going to make it through the coming attractions.  They were loud and disjointed and Tim leaned over and said he thought we should leave.  I calmed him down and said that the movie we were seeing was not an action movie and we should just give it a couple minutes.  We did and I am happy to say that Tim is very glad that we stayed and watched the movie.  He really, really enjoyed it.  You see, he had read the book and had mentioned that he would like to see the movie when it came out.  So today when the opportunity presented itself, I couldn't have been happier that it ended up being such a success!  We even stopped and had a bite to eat afterwords!  

What a pleasant end to a great couple of weeks off and a wonderful accomplishment...sitting through an entire movie (that was not being shown on our TV) and actually enjoying it...just the two of us on a date!

The Twelve Days of Christmas

Since my husband has survived his crash and come home, he has worked ever so hard to bring back a sense of being normal that most people naturally have.  It is obvious that he will never really be like everyone else again.  While one arm is still good and functioning, the other is in a transitional mode (for life).  Tim is a trooper though.  He really tries to use it as much as he possibly can.  However, he still gets stuck with trying to get dressed.  

With only the use of one arm and the injury to his hip, he cannot bend forward enough to get his shoes on and put his pants on.  Yes he did go through therapy and learn how to use all those gadgets that they have to assist in this area.  And yes, he did successfully get himself dressed a couple of times using those gadgets.  But, if he did this everyday, it would be lunch time before he got one leg into his pants leg, let alone two. So I do have to help him get dressed and undressed every day.  

So I know you are asking, what does this have to do with the Twelve Days of Christmas?  Now you know how mundane getting dressed can be and me being me, I always breeze into his room in the morning usually singing.  Yes, the dreadful singing of whatever has popped into my head at the moment.  This morning, the song was ... ready for it... the Twelve Days of Christmas!  Poor Tim, he just laid in his bed snarling.  Now, I bet you did not know that the Twelve Days of Christmas could be an interactive song.  Sure it is!  As I was helping him put on his socks... On the first day of Christmas my true love sent to me, a partridge in a pear tree, then two turtle doves, three french hens, four calling birds, then to my surprise, Tim chimed in ... five golden rings!!!!  I continued on with all the verses, getting his pants on, shoes on, shirt on, out of bed and into his wheelchair.  And each and every time I got to, five golden rings, Tim sang the part!  Soon we got to the twelfth day of Christmas and he was dressed and the song was done.  I told Tim that now we know how long it takes for him to get dressed ... as long as it takes to sing the Twelve Days of Christmas!  We both had a good chuckle out of this one!  It was a good morning and so far, a pretty good day.  And now that we are in the holiday mood, we are off to do a little Christmas shopping!

The Artist

My husband, Tim, was a police officer.  Of course, he is retired now.  However, prior to his accident and while he was still actively working, he held several positions on the job.  They ranged from patrolman, training officer, accident investigator, detective and sketch artist.  One of his favorite jobs was being a sketch artist.  Actually one of  his favorite things is art.  He took classes in high school and even studied at the Art Institute of Chicago.  He has painted some pictures, but he liked charcoal and drawing the best.  (I even have an unfinished drawing of me!)

He originally took his first class when he was working at his first police department.  They sent him to a school in Wisconsin.  He became that department's composite artist.  Later when he joined the police department in Arlington Heights, they sent him to a school at Northwestern.  He was good previously, but he became really good after the school at Northwestern.  (In my opinion.)

When our kids were young, he went to one of their classes to talk about being a police officer.  (My husband was a one man show, between his career and playing the bagpipes!)  He had one of the children get up and and describe someone in the classroom.  When he was finished, he showed the picture to the class and the children were amazed.  It looked exactly like one of their classmates.  He gave it to the child as a souvenir.

What he drew did help catch several criminals.  In fact his police department lent him out to Chicago.  However, Tim was and still is very humble.  He would say to me that it is not his pictures that are good, it's how good his witness was.

Tim was right handed.  Since his accident, he does not have use of his right hand anymore.  It really did not take him too long to learn to use his left hand.  I have always told him that he was a "closet" lefty.  His printing is beautiful, although his signature is a little shaky, it looks pretty darn close to the one he did with his right hand.

Today, for whatever reason, we were talking about this.  I guess it was because I happened to find a few of his sketches while I was looking for something.  He reminisced about while he was still at RIC, one of his therapist asked him about drawing.  They gave him a pencil and he sketched her. Soon, several of the therapist wanted him to sketch them.  One of them asked him how he could do this, especially with his left hand.  He told me that he explained to them, that it is not in your hand.  It's what is up in your head that allows your hand to do it.  How profound for a man with a traumatic brain injury to bring up to a therapist!

It is all of our hope, that when he is good and ready, that he will once again try his "hand" at art.  Perhaps something small and then move up to a painting or two.  Or may even finish that drawing of me!

Music Therapy or Not?

The other day I watched the 20/20 interview with Gabrielle Giffords and her husband, Mark Kelly.  I was so touched by this interview.  However, it visually brought back so many memories of my husband's injury, hospital stay and rehabilitation.  It really was a remarkable interview. Gabrielle Giffords is truly an amazing woman as all the many people out there recovering from a brain injury are.  So much hard work is involved for them and every bit of progress whether it be large or small is astonishing.

On my phone I have a dictionary app which gives you a word of the day, every day.  I really enjoy it as not only do I get a word of the day, there is always some little anecdote.  Today's anecdote was about Gabrielle Giffords and how music helped her relearn words.  She was injured on the left side of the brain near the area that controls language.  It said that recovery specialists have started using music to help patients recover their language ability. Even though we understand and create language on the left side of our brain, we understand music primarily on the right side .  The way the brain relates to music is very unique.  When we have a song stuck in our head or listen to a song by imagining it, our brain is very active as if we were really listening to that song.  Neuroscience research has shown that music has an incredible impact across the entire brain. Because music relies on pitch and rhythm in addition to speech, it is interpreted in different parts of the brain, not solely the music or language areas.  When rehabilitating injured patients, rather than trying to redevelop the language area directly, this therapy retrains the connections in the brain and creates a new language area in the music region of the brain.

After watching the interview and then reading this information on my phone, I can't help but think that even in the short amount of time since my husband's injury, there is still so much progress being made.  I found this most fascinating as I remember when my husband was just learning how to learn to talk again, there was no music.  We were not allowed to play music or turn on the TV or do anything that would over stimulate him.  I wonder if he would have made faster progress if we could have added music?  I guess we will never know as his speech is pretty good at this point in time.

However, we were talking about this today.  I told him they should have allowed us to play music and sing to him.  He just laughed.  My husband was always involved with music being a piper in a bagpipe band.  But as he reminded me, he never sang.  You see, anyone who knows me knows I am the one who sings all the time to myself.  He marvels at the songs that just seem to pop into my brain.  He said that if they allowed us to play songs and sing to him, he probably would have run screaming from the room and never want to talk again.  Maybe in his case it was a good thing he had just the traditional speech therapy!