News and Updates

March 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.

We 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 offer.

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 becomes available.

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!

Hello 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 you all!

Nicholas

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.

We 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.

In 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.

He 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.

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.

We 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.

Sorry 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.

Nick 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!

Nick 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!

Nick 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 on.”

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.