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.
Thanks for the continued support,
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.
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 “email@example.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:
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.
Thanks for all your continued support!
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.
Yesterday we received a very promising update from the care team on Ray’s progress. It has not even been a month since Ray’s transfer to Neuro-Tampa and we are already seeing great signs. The team has been able to gain his acceptance to participate in therapies and he has already had several speech, occupational, and physical therapy sessions. Ray’s mood has also been noticed to have improved since his arrival at the new location. New goals have been made for each therapy, among them to increase his participation to 100%. So far he has done well in ST and OT but needs improvements in PT. A constant obstacle for Ray remains his denial that he has injuries or needs help to get better.
Ray continues to remain strong and maintain his struggle back toward an independent life. He still requires assistance with basic ADLs to include 24×7 support. His therapy sessions are designed for him to better perform the basic daily activities with little to no assistance. This includes eating, personal hygiene, and dressing among others. Ray still has a ways to go before it would be safe for him to be on his own. The struggle in this is that Ray does not always acknowledge he can’t just go home or elsewhere to live on his own. The safety concerns and requirements for assisting Ray at this time are too great for this to be possible. With continued effort for those supporting Ray, we can work with him to understand his situation and make better use of the support being offered in order to make independent life more of a reality.
Consults to the VA have also been put through for a new swallow study (silent aspiration may still be present), neurology, psychiatry, and a change of his primary care physician. Neuro-Tampa can only do so much at their facility and must rely on the VA to provide the pieces not covered. With Ray in Tampa, he will have better access to the VA resources. Arrangements have been made with his VA case manager to expedite the consults to reduce the waiting time in receiving assistance. Case management at Neuro-Tampa has done a great job in ensuring Ray receives what is needed for his care. We should have more of a clinical update on Ray later this month from the VA.
Again for those that wish to contact Ray, his contact information is below. Over the past week there have been phone problems at his location, but we are told this will be fixed soon. All visitors should call in before scheduling a visit to ensure no conflicts in schedule.
Attn: Ray Brown
2411 Clement Road
Lutz, FL 33549
(813) 948-3325 x14
Thank you everyone for the support. It’s still a long road ahead but we are seeing some good things ahead. Stay tuned!
Ray during a ST session at Neuro-Tampa.
Earlier today Ray was transferred to NeuroRestorative’s Tampa location. It has been close to four months since Ray was initially transferred to NeuroRestorative’s Orlando location for treatment for his severe TBI. Despite the continued efforts by the care team, there has remained no progress in Ray’s condition. This is in large part due to his refusal to participate in all of his scheduled therapies over the past few months. Ray has not been able to get onboard with the program at Avalon Park and has become more withdrawn since his arrival back in June. As such the care team, consisting of clinical specialists from both the VA and NeuroRestorative, decided to transfer Ray to the NeuroRestorative Tampa location where he can be more closely assessed in their Neurobehavioral program. The decision to transfer was made without haste in order to ensure Ray is placed in a more appropriate program for his injury without wasting further time.
During the next few weeks Ray will be evaluated by the Tampa team in order to come up with an appropriate plan of care that is more suited for Ray’s condition. He will be assessed on a regular basis to include monthly progress reports to measure any progress made. It is our hope that this new location will be able to better reach Ray and engage him in the help being offered. He is still a long ways away from an independent life and he will need to accept the help being offered at some point in order to even master basic ADLs. Ray still remains his biggest obstacle in his own recovery. The focus of the new plan will be to have Ray understand that he needs help and that he needs to participate in therapy sessions provided.
For those wishing to contact Ray for encouragement at his new location, his contact information is below. Until his schedule is determined, please do not call during the week before 5 as he may be engaged in assessments. Let’s all show Ray we still care and that he is on a good path.
Attn: Ray Brown
2351 Clement Rd
Tampa, FL 33549
Thank you to everyone that continues to support Ray. He still has a long road ahead and he needs all the help that he can get.
Another month has gone by with NeuroRestorative continuing their work in trying to find
methods to engage Ray more in therapy sessions. Over the past few months since his setback last May there has been a drastic decline in his participation in all scheduled therapies with no improvement with this since transferring to Avalon Park. As a result, there is no data to indicate any progress being made and very little that can be observed. Aggression, confusion, and the lack of self-control are now more commonplace in Ray’s behavior. These behaviors are difficult to handle at times but are common among TBI patients with frontal lobe damage. What is unclear is knowing what behavior to expect with Ray at any given time and what of this behavior will be long-term if any. Keeping Ray in a positive mood and engaged in something productive is the best approach for now. It could be the manner of approach that makes all the difference in order to convince Ray to engage more and try.
There has also been no progress observed in Ray’s tremors despite a dosage increase with his Keppra medicine almost a month ago. If anything, the problem has only gotten worse over the past few months. No update has been provided by the VA on what the next step will be or how long the current approach will go on to try and fix this debilitating problem. He has yet to receive the one-year post injury full neurological assessment by the VA as well, despite our continued efforts in pushing for this to be done for several months now. Ray is still under the care of the VA for his medical needs and must have regular ongoing assessments in order to provide the best level of care possible. However, this interaction has been limited and there is no longer a clear channel for support to address concerns. Discharge planning from Avalon Park is in the works with no exact plan so far determined. The plan for a one-year commitment to NeuroRestorative may or may not still be the case and anything beyond theinitial commitment timeframe is uncertain. Ray still requires a great amount of assistance with basic daily tasks and is still far from independence.
The family would like to ask for everyone’s help in returning to the focused prayer and positive energy support. We know there are many out there who have been praying for Ray all along and sending him their love, for which we are extremely thankful. However, we need to focus all that energy on Ray accepting and participating in the help being offered for his care. Support on this is needed from all of Ray’s followers in order to make a difference. The biggest obstacle for Ray right now is himself. Help is needed for him to realize the situation and work to improve himself in order for a better outcome. Focusing our prayer and energy on a specific outcome may be what is needed for Ray to continue on a path of successful recovery. Ray still has a tremendous will, but he has lost his way in doing what is needed to get better. Help Ray find his way back on course by targeting your energies on this specific task. He needs encouragement to keep fighting strong. Group power may be the win.