Wednesday, May 13, 2009
10, 2009 was the fourth anniversary of Nick's accident!
Although it seems like a lifetime, it's amazing just how
far he has come. We "celebrated life" at the Gold
Bar Coffee shop with Nick's friend and mentor Lynn, who
also had a brain injury, and her husband Pat. You
may recall, Lynn suffered a second brain injury just one
week after hosting Nick's art show. Lynn is still
wheelchair bound but is making progress and is back home
now after spending some time in treatment in California.
We also had a "celebration of life dinner" with Nick's
sister and her husband at a restaurant of Nick's choice.
Nick gave a toast of gratitude for all the love and
support he's received along the way.
got bad news that the funding for the vocational
rehabilitation program that Nick is involved with will
be cut on June 1. Nick has made great progress in
this program and is now volunteering twice a week
preparing for a possible work experience.
Considering the state of the economy it may be very
difficult for him to find employment, but for now the
volunteering is helping build his skills and confidence.
He will also start taking on-line classes again
that support his vocational goal. The goal for now
is to get Nick an entry-level position such as working
in the box office. Nick likes art and music and
working at a center for the arts is his first choice.
He has volunteered some hours at the Kerr Culture
Center, where he was employed before the accident, but
they are slow in the summer and don't have much to
At Nick's last
appointment with his rehabilitation doc, it was decided
that Botox would not be used any longer. The
amount of Botox needed to make a significant difference
in his tone would
be far more than the doctor could
give. It is after all a poison. So for now
his left arm continues to pull inward and cramp at will,
which leaves it basically non-functional. Our hope
on the horizon is stem cell therapy. Dr. Kwasnica
feels he would be a good candidate for it when it
Thursday, January 1, 2009
Happy New Year! It is a good time
to reflect back on the past year and look at this roller
coaster called “recovery” and recall all the changes
that have taken place in Nick’s and our lives. This
time last year Nick was still wheelchair dependent. He
required a caregiver or family member to be with him
most of the time and he was still struggling with
painful cramping on his left side (mostly toes, calf,
left wrist and thumb.) His speech although better than
before, was still monotone, difficult to understand and
he had difficulty speaking without coughing. He seemed
to run out of air as he tried to talk. He had taken
several classes online through ASU and had done well.
Problems started to occur for Nick when he tried to go
back to campus. He disparately wanted to get back to
college life, but it just wasn’t the same.
Some of the things they had warned
us about with brain injury survivors began to show up.
He became frustrated, angry at times, argumentative, and
outspoken. Nick was always good natured and not at all
like this. At first we worried that his brain was
changing and he was moving into a new phase. Thank
goodness that was not the case. It was discovered that
a new medication used to help the painful cramping was
actually causing a lot of his problems. This was not
discovered soon enough to keep him in school. After
meeting with his instructor we withdrew Nick from school
for medical reasons and began our search for the “next
step.” We had tried everything we knew of over the past
three years in the way of therapies, both conventional
and natural. Nick really discovered that he wanted to
be more in control of his medication. He began to
refuse pain meds, Botox injections for the muscle
cramping, and every other medication that he could do
without. He began a regime of natural supplements and
concentrated on taking control of his life through,
organic vegetarian diet, yoga exercises and meditation.
He found a great mentor for his journey, Roberto, from
the Advanced Therapeutic Bodyworks. He really helped
Nick to realize that power within himself.
After conferring with Nick’s
psychologists it was decided that we would concentrate
on helping Nick develop vocational interests and skills
and set aside attending college for now, which seemed to
be adding just too much stress. We found a great
opportunity through vocational-rehabilitation for a
grant that would fund Nick’s work re-entry program.
After a month of extensive testing he was accepted for
the program at the Center for Transitional Neuro-Rehabilitation.
We can honestly say this has been the best possible use
of Nick’s time. He has made huge gains in every
category since attending CTN. The program is rigorous,
relevant, and it has helped him socially. The
therapists all work daily with individuals and groups
all of whom have suffered brain injury. They know
exactly how to help him. He is now walking with his
cane all the time. He is speaking with intonation, and
his articulation and resonation has improved. He is
learning how to interact appropriately with groups
through real life experiences that they provide and he
is proud to say he is now volunteering at St Joseph’s
Hospital in the doctor’s library.
Now that he is more independent, he
has been able to do more activities with old friends and
new friends that he has met mostly through CTN and our
church. Nick, who by the way, now prefers being called
Nicholas, is on his way! We have such hope for his
future and feel very blessed. 2009 certainly should be
a break out year for him! We wish all of you a health
and happiness in 2009 and can’t thank you enough for
your love and support!
Thursday, November 27, 2008
everyone. I want to start out by thanking
all of you for your continued support. I
am improving slowly, but surely; so I do really
know what it means to say “that it does help
when people believe in you.” A couple
Mondays ago I had the medial meniscus repaired
on my left knee. Judging from past
experiences, I thought it was best to stay away
from the general anesthesia and went with the
spinal instead. I also decided to stay
away from the heavy duty narcotics they were
attempting to give me. I do have to say
that I made a great decision. My recovery
time seems to be going quicker, and I am not in
a fog. If you know anything about the
after effects of post anesthesia, narcotic
digestion, then you know it not fun. I
will spare you the disturbing details.
We had our Thanksgiving
dinner last weekend when Nanny was here
visiting. We had a great dinner prepared
by Krista and Nanny at Krista and Matt's house.
Since I'm now mostly vegetarian, today we are
going out for Seafood!
My program at CTN is going
very well. I am so thankful to be a part
of such a great program. It is really
giving me every possible chance for independence
and success. Happy Thanksgiving to
Tuesday, September 30, 2008
This new software is much easier to use than the one we
were using before. Now we don't have any excuse
for not adding to the photo album and getting the news
articles into a format that we can publish to this site,
except for the fact that we are all really busy!
Hopefully those areas will be added to soon. Nick
also really does not like the picture we put on here, so
we'll be taking some new photos as well.
are so glad to report, Nick was accepted into
CTN after more than a month of evaluation. Needless
to say he is extremely excited at the possibility of
this program leading him to independence, as we all are.
Nick remains very determined to get out on his own and
make an independent life for himself. The only
thing remaining is for funding to be approved, which we
are told is usually granted when the staff at Barrows
makes the recommendation. The initial plan is for
him to be in the program for a full year.
CTN works only with persons with traumatic brain
injuries in an attempt to reach a goal of work re-entry,
getting back to school, and/or independent living.
Learning to accept and deal with a persons current
situation is a major emphasis in the program, both for
the patient and families. Family involvement is a
requirement of the program.
a staff meeting today, all of Nick's therapists
indicated that he is working very hard in all aspects of
the program. He is improving in his acceptance of
the directions given him. Because Nick has done
much research on his injuries and had many different
therapist and programs, both medically approved and
naturopathic, since his accident, he has formed some
strong opinions of what is best for him. At first he
wanted to "discuss" all directions given him by the
staff, but is now learning how to properly express his
opinion and get on with the task at hand. They
have a successful proven program and he has had to learn
to trust their direction.
Nick is in the work re-entry program. Everyone
agreed that this was more important for him now than
going back to school. Because of the area of his
brain that was injured he has to relearn many skills of
independent living that we take for granted. He is
working with physical, occupational, recreational, and
speech therapist in addition to a neuropsychologist and
a psychiatrist. It is not a cookie cutter program;
it is very much tailored to the patients' needs and
involves all aspects recovery. Improved speech,
walking, cognitive and organizational skills,
pragmatics, following directions, along with typical
daily tasks like making meals, house cleaning, and
shopping have to be relearned or reinforced as part of
his daily routine.
will continue therapies but begin doing volunteer work
at St. Joseph's Hospital, of which Barrows is a part, as
a precursor to going to work. The plan is for him
to move from volunteer work to part time work, then full
time if able and on to possibly getting his own place to
live independently, his ultimate goal.
Monday, September,1, 2008,
Happy Labor Day!
For the past three
weeks, Nick has been working really hard at CTN.
He leaves home at 7:00am and has a full day of cognitive
testing and therapies usually arriving home around
5:00pm. We have not heard yet whether he will be
accepted into the program but the evaluation stage is
almost over and we should hear soon. Nick is
highly motivated to make this happen; we just aren't
sure yet if they think he is ready to be employed at
least part time.
Nick spent the last four days at Whispering Pines Ranch
near Payson at "Camp Can Do" for traumatic brain injury
survivors. He had a wonderful time while he was
there. He especially enjoyed the yoga, meditation,
and crafts. When he got home his stomach started
bothering him and he's been nauseous ever since.
He thought maybe it was something he ate.
Hopefully he will feel better in the morning when it's
time to get back to work at CTN.
Tuesday, August 5, 2008
were informed today that Nick
will be starting evaluation at the
Center for Transitional Neurorehabilitation
on Monday Aug. 11th. This is an exciting
opportunity for Nick to make real progress towards
independent living and employment. Transportation will
be difficult, as it is near St Joseph's hospital
in central Phoenix, but we will work it out.
Saturday, August 2, 2008
it has been awhile since we last posted an update.
The website builder we were using changed their software
and the new version was difficult to use so we switch to
Front Page. The site is not done yet but we wanted to
get an update out. The new picture in the upper
left hand corner was taken of Nick today. It has
been three and a half years since Nick’s accident and
he’s finally becoming stronger and healthier.
has had a great summer in many ways. We had a
wonderful trip to Washington state where he got to spend
some quality time with most all of his cousins and aunts
and uncles on both sides of the family. He also
got to spend time with his Grandparents and many
family friends. He loved staying in the mountains
at the Jahnke’s cabin where he got to go fishing, sing
karaoke, and ride in the fresh mountain air on a
three-wheel bike. (thank you Jim) He also really
enjoyed spending time with friends and family at the
Moore’s summer home at Holly, on the Puget Sound.
Riding in a boat, hanging out enjoying the beautiful
scenery, fireworks, and nightly campfires.
Everyone helped to make his trip comfortable and he
really loved it all! Thanks to all of you who
really went out of your way to make it happen!
made up his mind that he no longer wants to be on pain
medication. With the help of his body work
therapist, Roberto, he has been able to use yoga and
meditation to ease his pain and he is now no longer on
any pain meds. He feels much more clear headed and
in control. The Botox injections have finally
helped ease most of the cramping in his left hand and
arm. Although the arm is not fully functional, at
least it isn’t hurting like it did. He did
find out that the right arm surgery can be postponed for
awhile and his nerve is not being compromised as he once
feared. Surgery may be needed on his knees again
and he would rather do them first. His art work has
really shown how his fine motor skills have improved
over the past year. It’s quite amazing to witness
the brain’s ability to rewire and repair itself!
has spent his free time doing some parks and recreation
classes. His favorite was an Improvisation class.
It really helped him to use his voice and think on his
feet. He is currently taking speech therapy which
is working on strengthening his vocal chords. He
has also taken an interest in music and is trying to
teach himself how to play a keyboard and a jamba
drum one handed. As he says, “he keeps on keeping
Nick is scheduled to start
evaluations at the
Center for Transitional Neurorehabilitation
in mid August. The evaluation takes
approximately three weeks to complete, six to eight
hours a day. If he meets their criteria he will be
accepted into the program.