As we prepare for the next chapter in Ray’s recovery we need to plan for what he may need in the long run. It is impossible to know how long he may need assistance and how much of that assistance will be covered by the VA. Funding for his stay at NeuroRestorative is running out and we don’t know at this point what comes next.
At this time we are uncertain as to what type of long-term assistance Ray will need and how much will actually be covered by the VA. To offer Ray the greatest chance at recovery, we really need to have him continue with the therapy sessions. Beyond recovery expenses, we also need to plan for Ray’s eventual independence with all the unknown costs involved.
For now we are accepting donations to help fill the gap in coverage. Until we know more we are running this as a simple one-time fundraiser. A link to the donation site can be found on the “Raise for Ray” page. As always, thank you for continuing to follow Ray and offering him your support.
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.
Thank you for continuing to follow Ray on his new life journey.
As we make contact with Ray we need to be aware of the full extent of his injuries. Reuniting him with his past life needs to be handled with extreme care. Expecting the same personality and behavior from him now as before the accident only complicates matters and regresses his progress in therapies. The family wishes to ask for everyone’s support on this and to use sound judgement when attempting to involve Ray in activities or promote a return to his old life. It is better to offer him the encouragement to continue with his therapies than a full return to his former self.
At this time Ray must remain in controlled community outings due to behavior problems. His care team has been attempting to better this issue but it has been on ongoing struggle. At this time Ray is required to remain on close supervision both inside and outside of NeuroRestorative and all high stimulation outings need to be approved by his care team. This includes the graduation ceremony and related activities. Although Ray may want to attend these activities and express interest, we must exercise prudent judgement to prevent further regression. Progress in therapies far surpasses anything else at this point and we all need to help Ray work toward his eventual recovery. Please spread the word on this and help out where possible.
Progress remains slow and steady since the last update. Ray has continued further through his rehabilitation plan with promising outcome. The major focus areas that are currently being addressed from the MPAI include: mobility, initiation, self-care, attention / concentration, problem solving, self-awareness, visuospatial abilities, and social interaction. Within these areas several goals are developed to help improve Ray’s ability. He has already accomplished many goals in all areas with many more that are in progress or being adapted to better suit his needs. His attendance in all scheduled therapy sessions has been good and Ray seems to be doing better with keeping a good attitude when engaged in specific tasks. His social interaction has also improved somewhat, however, impulse control remains an issue with anger outbursts still present.
On the medical front things are looking good. A diet change was recently approved to allow Ray regular thin liquids while using caution to avoid aspiration. Kepra and Primidone remain his primary tremor medicines with Kepra to eventually wean away in the near future and Primidone to stay at some level. A consult through the VA for Deep Brain Stimulation is to occur next month to look into this as another option to treat the tremor issue. This would most likely be a last effort approach if both Ray and the doctors feel this could be something to help him. Since taking the Primidone his tremors have gotten better and dosing changes may further remedy the problem over time. Mobility has also improved greatly with Ray now able to move around with a walker. Long outings still require the use of a wheelchair. Most basic ADLs can also be accomplished without much assistance, while others still require prompts and staff cooperation. Self-care has been a major goal from the beginning and continues to be an arduous task for Ray on account of his tremors.
Physically Ray has made great improvements in these past few months. Mentally is a whole other challenge area that serves as a major source of contention. Being stubborn by nature, Ray remains on his perception of only needing time and medicine in order to recover to a more functional state. Impaired awareness will most likely remain as a major stumbling block for a while to come. At times Ray will admit his limitations but only when dealing with physical tasks. He has yet to fully acknowledge any of his cognitive impairments. This is not to say that he may be completely unaware of the problem, but rather is not openly admitting it and working to his fullest to better the situation. It is often difficult to determine at what level Ray is mentally functioning at any given time. His attitude and ability vary greatly throughout the day making it nearly impossible to determine his demeanor before contact. While this remains a huge problem area, it has not stopped progress from advancing.
Encouragement to keep with the program is still needed. Unfortunately Ray isn’t able to correspond back to you at this time, but he does seem to enjoy all the fan mail and phone calls. Keep in mind when calling or visiting with him that he still lacks proper filters for controlling his impulses and he may say or do things that are inappropriate for the situation. This is a frontal lobe impairment that will remain a constant obstacle for him. Please keep up the support and stay tuned for more updates to come. New posts may be a little more sporadic as progress remains slow.
(Weekend visit with Ray):
Ray with his brother
Ray with his brother, and nephew & niece
Uncle Ray enjoying his nephew’s company
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 “firstname.lastname@example.org”, 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!