Seeking Independence

As we all move on with our own lives, Ray continues the struggle through his new life dealing with a severe traumatic brain injury.  Two years ago today Ray was involved in a life changing car accident that has put his life in a new direction.  While there was great recovery progress in his first year post-accident, this second year has been met with slow progress and several bumps along the way.  Despite the obstacles Ray remains healthy and determined to be on his own again with his future remaining uncertain.

Along Ray’s journey to recovery his family and friends have done what they can to try and support him.  In some cases tough calls had to be made to help protect him from further physical, mental, or emotional injury.  It is difficult to not be over protective of someone that you care deeply about.  In Ray’s case, he doesn’t always understand or agree with the decisions that are made toward keeping him safe.  At some point there is a need to let go a little in order for a person to grow on their own.

The current plan of care for Ray is designed for him to understand his limitations and adapt to them.  This involves several therapy sessions including counseling appointments.  Sadly Ray does not fully acknowledge he has limitations or share in the belief that he needs help.  This has posed a major obstacle in his recover plan.  New methods of engaging Ray to perform therapies are being used as a way to compensate for his lack of commitment to the care plan.  Lately he has not participated in the majority of his scheduled care and has refused the help being offered.

When Ray was transferred to the NeuroRestorative program there was a funding commitment offered by the VA as a pilot program for TBI patients.  The initial timeframe for the program was set at one year with additional treatment intervals contingent on funding approval by Congress.  For Ray, his timeframe started at Neuro-Tampa in October of last year with expiration sometime in September of this year.  Funding extension for the Neuro pilot program has not yet been approved and it is unlikely to pass Congress.

As we approach closer to the end of Ray’s current treatment plan we will need to consider new options for him.  Keeping Ray in the Neuro program does not appear to be the best option for him at the moment even if we could raise the funds.  Participation in the Neuro program requires greater involvement from participants than what Ray is willing to provide at this time.  He would still benefit from a therapy routine and does require assistance with ADLs in addition to needing medical care.

Ray desperately wants a return to his independence and we all want to help make that happen.  Choosing the next step for Ray will be a difficult decision to make.  The option will need to both acknowledges Ray’s desire while also trying to do what is best for his continued recovery.  At this stage of the game we really need to have Ray onboard with the program of choice and for him to be completely devoted to seeing things through.  There has not been the ‘magic breakthrough’ yet for Ray to suddenly realize that he needs help that we all greatly want to see happen.  In the face of this tough situation, we are hopeful to find a good balance that Ray can agree to and that will address his care needs.

Collage of Ray through is traumatic brain injury.

Collage of Ray through is traumatic brain injury.

Thank you for continuing to follow Ray on his new life journey.

Team Ray

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Promising News

As many are aware, Ray has been less than thrilled with his rehab current program.  In his mind all he needs is medicine and his own regime for recovery to happen.  It has taken a tremendous amount of team effort and persistence for well over a year for him to become more self-aware and his progress to continue.  Despite the adversity Ray plays the game and continues to show promising signs of improvement along the way.  His care team continues the effort in educating him on his injuries and including him in the plan.

From last month’s progress report Ray has met several of his specialized goals where participation and performance objectives were observed.  Noticeable gains since the month prior has been documented.  New targeted goals continue to be developed for him in order to minimize his reliance on assistance for daily living activities.  The eventual end state of the current program is for Ray to return to an independent life once again.  This is something that Ray often needs help with to understand.

From the last post it was mentioned that Ray has started a new medicine to specifically treat his tremors, Primidone.  Since taking there has been an evident reduction in his reflex tendency, which is what causes his uncontrollable shaking.  This is a huge turning point for Ray in his recovery.  With continued monitoring of his neuro response and ability combined with targeted rehab, further gains are achievable.  It remains necessary for Ray to receive this specialized treatment in order for recovery to happen.  All we can do is focus our efforts on helping him realize the need and make the most of the help while it lasts.

A birthday visit with Ray.

A birthday visit with Ray.

Thanks for the continued support,

Team Ray

Staying Strong

Progress remains slow for Ray, as is common with TBI patients beyond a year from initial injury.  Yet, he continues to reach short-term therapy goals and has started working on new ones.  Behavior persists as an obstacle to a consistent therapy program.  He has not yet displayed complete ability to independently attend all scheduled therapies without verbal prompts for daily activities to include personal hygiene.  As Ray continues in the NeuroRestorative program, his willingness to participate will improve as has overall acceptance of the program.  Realistic self-awareness remains a struggle for Ray.  He does not always completely acknowledge his deficits but rather remains with the belief that natural healing and a specific medication for his tremors are what are needed over use of therapy as a means to regain independence.

Recently Ray was able to see a neurologist through the VA.  We are still awaiting the full report from the appointment but one encouraging outcome is the prescription of a new medicine, Primidone, to specifically treat his tremors.  Keppra is still being prescribed for now to also help with this and dosage for both meds will most likely need some tweaking over the next few months.  This is exciting news for us as it both gives Ray a chance with a new treatment plan and it has further established him in the VA program to monitor him more closely for the tremor problem.  The focus will be on determining the best medication combination for Ray that allows him to better engage in therapy.  As with most medicines, there are adverse side effects to watch out for.  Medically speaking Ray remains stable, but he will need to be monitored more closely for possible depression episodes or other unhealthy behavior.

While Ray is at Neuro-Tampa the focus will remain on PT, ST, and OT.  Medication will be used more as a supplement to help the therapy program.  PT has been able to engage Ray in a treadmill walking program and a new functional walking program will be introduced in the near future.  Ray continues to use a wheelchair for most of his day but he is encouraged to use a walker and the therapy gym whenever he wishes.  ST and OT work to help him engage in the community and improve independent daily tasks.  A new goal that Ray has set for himself is to better his reading skills.  Many people with head injuries not only suffer brain damage but also problems with vision.  This is also true for Ray as he sometimes has difficulty with focusing properly for reading and other activities that require a close focus.  The tremor problem only compounds the issue and impedes in much of the therapy process.  Ray’s input will be valuable to the care team so that additional therapies can be tailored to his needs.

In this New Year we see good things ahead for Ray.  He has made enormous progress this past year and he still has strength in him for much more.  Please continue to pray for Ray and send him your positive energy for healing to allow his mind to accept what ‘is’ and to be strong for what remains.  Focused energy on this will give Ray added strength to carry on.  As always, thank you for the continued support.  If you get time, check out the new TBI Resources menu.  Feel free to share any other resources with the group that may be helpful to TBI understanding.

Thank you,

Team Ray

Coming Around

Looking back it is hard to believe that nearly a year and a half ago Ray was involved in a life-changing car accident that left him with a severe TBI. He has made such great progress from where he started at Glasgow level 1 to now being assessed on the Mayo-Portland index. While many of the ability index ratings remain the same from last month at moderate to severe problem rankings, Ray is still working hard and meeting his therapy goals. His participation in the NeuroRestorative program in Tampa has increased to near 100% with new tailored goals being developed to better engage and track his overall progress. As Ray continues to meet his therapy goals, we should see new ability ratings closer to a mild score.

Now that Ray has become well established in his new care plan, he has been able to attend follow-up VA appointments for behavior and speech therapy where a new swallow study was conducted. From these appointments his psychiatrist did not observe any behavioral problems that would require any change in his care plan and he was recently approved for a regular food diet, but he still cannot tolerate high amounts of thin liquids. This is great news for his recovery! Next month Ray has also been scheduled for a follow-up VA appointment with his neurologist where his tremor medicine, Keppra, and daily dosage will be examined. This was originally scheduled for this month but was pushed back. It will be extremely important that a proper evaluation be done soon to examine the best medicine and dosage for Ray’s condition. He continues to struggle daily with uncontrollable tremors that greatly impact his daily living activities.

Another great sign of Ray’s recovery is his ability to correspond with family and friends without behavioral outbursts. While impulse control will continue to be a problem for Ray due to his injury, frequent contact from family and friends will help him to work on this. We have also been able to start video chat sessions with him on his iPad that he seems to enjoy. This is another great way to stay in touch with Ray if people are unable to call or write. He can be contacted via FaceTime, email “pray4ray2012@gmail.com”, or Skype, ID “prayforray”. For now please keep the video chats to evenings after 5 to not conflict with Ray’s therapies. If you’d rather call or write, Ray’s updated contact info is below, please note the new extensions for when calling:

NeuroRestorative
Attn: Ray Brown
2411 Clement Rd
Lutz, FL 33549
813-948-3325 x3014 (Normal hours) x4 (After hours)

Ray during a recent FaceTime chat session.

Ray during a recent FaceTime chat session.

Thanks for all your continued support!

Team Ray

Getting There

Now that Ray has been at Neuro-Tampa for just over one month, the care team has been able to provide us with a clinical update.  Since he is in the post-acute phase (post hospital) he is being evaluated using the Mayo-Portland Adaptability Inventory (MPAI).   Using the MPAI form, Ray is assessed in many areas to rate his current ability.  The goal is for Ray to eventually reach 0 – 2 in all or most areas.  This is a proven indication that he would have the most success in going forward with an independent life once again.  For those unaware of this rating scheme, please take the time to familiarize yourself with this using the links above.  This will be the rating index used going forward.

From the evaluation report, Ray has been rated at mostly 4s and a few 3s in all areas.  To rate this on the Rancho scale, he would be at a level VI.  Chief among these items are his mobility, self-awareness, self-care, and decision making abilities.  Ray’s participation has improved since his transfer to the new location but he still refuses many of his sessions and requires constant reminders and cues from staff before engaging in the therapy provided.  The care team is working with Ray to come up with solutions to better gain his participation in the program.  This process may take a month or two to figure out before gains can be seen.  Given that Ray does not see himself as needing help, the team will have quite an obstacle to overcome.

Also indicated in the report is Ray’s difficulty with impulse control.  This has been observed through several behavioral physical and verbal outbursts both during and outside of therapy sessions.  Coordination between Neuro-Tampa and the VA continues in order to treat Ray for this problem.  As mentioned in previous posts, this behavior is not uncommon to brain injury, but it does pose an issue to the recovery process if not properly controlled.  The team has a good handle on the situation; this is just something everyone needs to consider when contacting Ray by phone or visiting in person.  We do encourage all to show Ray their support how they can.  Do not let his current behavior or situation prevent the support from happening.  He will continue to heal with time and our support does matter!

Thank you for all the continued support.

Team Ray

The Journey Continues

We hope everyone had a nice Thanksgiving with their family and friends.  We were able to spend the holiday with Ray, eating lunch together at the hospital on the nice outdoor breezeway.  Ray is still on the pureed food diet, but he was able to have some of the potatoes, regular and sweet in addition to some pumpkin pie without the crust.  It was a heartwarming gesture for the VA Hospital to offer a catered lunch for patients, family, and staff members.

Ray continues to progress, although he remains in the same phase as we described in our last post.  He is usually in high spirits, but can still become negative and confused without reason.  Since Ray’s condition has been steady for a few months, it is time to begin thinking about his homecoming.  December will be three months since he arrived in Tampa at the VA Hospital, the usual reevaluation timeframe, and the team will be discussing the next course of action in regards to Ray’s therapies and treatment.  It is possible that he will be home by the end of December.  Ray still requires 24/7 care, and is not healed enough to be able to provide his own care.

As we prepare for the next family meeting with Ray’s care team on the 3rd of December, there are many items that still need to be considered before Ray can be discharged home.  Home evaluation, frequency and availability of care and therapies, and medical supplies are just a few of the topics that we will discuss.  During this meeting it is expected that we will have more of a definite timeframe of Ray’s return home and the extent of the support we will receive from VA.

Studies have found that prolonged states of PTA have resulted in delayed cognitive return and function of patients post TBI.  Ray has just passed the five month mark since his accident, putting him into the extreme TBI/PTA range.  We appreciate everyone’s thoughts and prayers during these past five months.  We are thankful for Ray this year, and for all of you.  Please keep Ray and our family in your thoughts and prayers this holiday season.  Our wish for the new year is that Ray comes out of the PTA phase and can begin healing more quickly.  Please focus any energies on this goal.

Thank you!

Team Ray

Day by Day

Enjoying the air on a fine Tampa morning

Another great weekend spent with Ray.  He was a bit more in the fog of PTA this time for us but we were still able to sit with him for several hours and have conversations about the past and present.  At times Ray appears very aware of what is going on and can even joke around a bit with those with him.  Other times he is very distant and may say things that make no sense to what is currently going on around him.  Distinguishing between real and not-real is still an ongoing challenge, but he seems to eventually be able to determine the difference.  Nightmares and problems with sleep still haunt his nights, which lead into waking moments and confusion.  Medication is being used to help treat the sleep problem and with time he should be able to have more restful nights.  A side-effect of the sleep medicine may be grogginess and disorientation.  It may be a few weeks before the right med and dose can be determined.  Cognitively Ray appears to be doing about the same.  It has been an off and on type of awareness with him that is different each day.  Progress is happening, but at a slow rate.  This is typical of a TBI.

Physically Ray is doing better.  Upper body muscular control and range of motion have improved through therapy.  Weighted utensils and other daily use items are being introduced to help Ray do things on his own.  Today he was able to brush his teeth on his own.  The use of weighed items is to help with tremors, which are still in the process of being treated more effectively.  His left arm and head are affected by these, causing him to shake without control of the motion.  It is important for Ray to start doing more things for himself and to make use of both of his hands.  One thing that we have been doing that seems to be helpful and fun at the same time is to play catch with a small, soft ball.  He is not allowed to walk outside of PT at this time due to him still being a fall risk.  He has become good at maneuvering around his floor in his wheelchair though.  Currently he is receiving an hour of PT a day during the week and two hours on Monday and Wednesday.  The daily one hour session is dedicated to mobility in his wheelchair and strength training for his legs.  Various activities are used during his sessions including the use of a weighted walker.  The additional two sessions a week are for the locomotor clinic where four therapists assist Ray with walking on a treadmill, each supporting a different portion of his body.  Until Ray moves beyond being a fall risk, he will need to be restricted to his wheel chair.

Now that Ray is able to swallow honey-thick food, he has been able to eat pureed food.  He receives three pureed meals a day in addition to snacks of yogurt, pudding, and thickened juice.  You’d be amazed at what they can puree!  His lunch Saturday consisted of pork and corn, and his dinner Saturday consisted of lasagna and green beans.  His diet remains strict due to him still silently aspirating, meaning that food can flow into his lungs if not properly controlled, which can lead to choking or pneumonia.  Until Ray is able to swallow more controllably, he will remain on this diet.  It is very important that visitors comply with his care team’s guidelines.  As those that know Ray well, he is very serious about food and will try to get people to sneak him anything.  Do not fall for his tricks.  Instead, make use of the diet forms below:

Pureed Foods Allowed

Honey Thick Liquids Defined

Stay tuned for more to come soon.  Thank you for following and supporting Ray on his healing journey.  As the holidays approach, please take time to give thanks for all the positive in your life.  We are thankful for our Ray, and for the overwhelming support of his fans. 🙂

Brothers 🙂

If you are around on November 16th, check out the Pray 4 Ray Event in St. Augustine.

Ray thanks State Farm and all those putting on the Pray 4 Ray Movie Event on 11/16.

Team Ray