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.
It has been close to a month since Ray transferred to NeuroRestorative’s Avalon Park. The staff has become familiar with Ray and has begun the process of formulating a complete plan of care. Obtainable goals have been established and a full range of staff will be working with Ray on a daily basis to help in reaching those goals. The main focus continues to be on improving and/or eradicating Ray’s Rubral tremors. These have been quite bad for him and have prevented him from performing simple daily tasks in addition to hampering other areas of recovery. As some of you may already know, Ray has been on a few medicines for the tremors. The latest, Keppra, has been administered for about three months now and appears to be helping somewhat. A neurologist from the Gainesville VA is continuing to follow Ray and is advising the staff at Avalon Park to assist in the plan of care.
The challenge on the road ahead will be in getting Ray to participate fully in the scheduled therapies. He is still refusing some of his therapies on occasion. This only delays any sort of recovery possible and makes receiving further help more difficult. All of the staff at Avalon Park is training in dealing with patients that have difficulty with engaging in activities. In some cases the staff is able to motivate Ray properly, but ultimately it is Ray’s decision in the process. Once Ray is fully aware this is his best option, there should be a greater amount or recovery seen. Unfortunately there is no way of knowing when Ray will be fully ready. For now he does what he can tolerate and the staff do what they can to help.
Currently there are no finite dates set for the NeuroRestorative assessment period. The plan of care set in place now is for a three-month period but will continue thereafter at planned intervals that will be useful in measuring progress being made. The initial arrangement was a tentative one-year plan with proceeding time needed for recovery to be determined after the first year. Ray’s engagement and progress in the current assessment plan now will be used to gage what is needed next. There are not many other options for him outside of this program. He still requires assisted living and is a long ways from an independent life. What we can all do to help is to let Ray know that we are still here and for him to keep trying and doing his absolute best. Write to him or call and let him know that you care. His contact info is below:
Attn: Ray Brown
3701 Avalon Park West Blvd, Ste 100
Orlando, FL 32828
321-354-0023 (M-F: 4-8, Weekends: 8-8)
When calling, please avoid mealtime as he still requires assistance with eating and staff will be busy helping with patients. Thank you everyone for showing your support!
It is hard to believe that exactly one year ago Ray was involved in a serious car accident that left him with severe brain damage. Looking back through all the pictures and posts its hard to not be overcome by emotions. Immediately following the accident Ray was being assessed at a Glasco level 1 and has since recovered to a Rancho level 6. While Ray still has more recovery to go before he can become independent once again, there is still a great chance that his recovery will continue.
The care team at Avalon Park is actively assessing Ray to determine his exact limitations and how he is progressing clinically. In the near-term the VA will conduct a thorough neuro assessment on Ray to more accurately determine his current cognitive level of functioning. This information will be very useful for the care team in providing tailored care to his needs. The entire goal of the Neuro Restorative program is to help TBI patients work through their limitations while also helping to continue the recovery process.
Over the next few months we should start to see Ray in a more independent role. His care team will be focusing on helping Ray to reach his recovery goals. He will be very involved in establishing realistic and achievable goals which will be the milestones for his own recovery. It will be important that Ray have all the support possible to help him reach his goals. Please take a few moments to help recognize the progress Ray has already made in this lifelong recovery process. Without the support provided there would undoubtedly not be the same progress made.
Over the past month the care team at the Gainesville VA has been working tirelessly with Ray to determine the next best option to continue his TBI recovery process. Several options were examined with Ray’s input and participation, and we now finally have a plan in the works. Sometime over the next few weeks, once all the approvals and paperwork have been completed, Ray will be transferred to Avalon Park in Orlando, which is Neuro Restorative’s premier facility in Florida. The range of services provided and the tailored living environment the site offers will not only allow Ray to receive a great amount of autonomy in his personal recovery but also help him to properly engage in more aggressive therapies through a wide range of rehab services. This option has the greatest potential in helping Ray to reach his own personal goals and to hopefully one day be able to live independently once again.
As Ray approaches one year post accident next month it will be critical that he stay motivated in his recovery over the next few years. Both the family and the care team feel that Ray is ready for the more aggressive therapies offered at Avalon Park and once he becomes more acclimated to the new environment there will most likely be more noticeable improvements being made. The only way to better guarantee further progress in recovery will be to continue with aggressive rehab services. Ray has been followed by many great services providers over these past eleven months and has benefited greatly from their superb assistance. This next step will further that great service offered and provide Ray the best chance possible at making new gains.
For now Ray will continue to stay at the Gainesville VA until the transfer documentation process has been completed. Visitors are still welcome during the scheduled hours but phone calls have been restricted to family only. Closer to time of Ray’s transfer, we should know more about visitation and calling options at Avalon Park. There will be far less restrictions for him than now but it will still be a care facility with scheduled therapy times. For those interested, please check out the hyperlink above for Avalon Park to learn more about the many great options. We are overly excited for Ray to be able to participate in such a great program. A huge thanks goes out to the many service providers on his care team that have worked together to make this happen. It is encouraging to us all to know that Ray has such a great group of people supporting him through his recovery.