Getting Settled

Ray’s transition home to St Augustine went without incident.  The VA has helped to coordinate several follow-up medical appointments and has also arranged for additional supplies to be delivered in the near future.  Outpatient therapy options remain unknown at this time but should start back up again soon.  Another home health inspection may be needed to address any potential gaps in care coverage to include respite care options for Ray’s mother.  For now it appears we have everything needed for Ray.

Physically and mentally Ray seems to be doing well.  He is much happier at home than he was in the Neuro program.  Depression is still an issue but is being managed appropriately.  Often during ‘returns to reality’ TBI patients can become more depressed than before when in a care facility.  This is to be expected and Ray’s situation is no different.  He still struggles with the tremor and mobility issues.  His follow-up medical appointments and outpatient therapies should help Ray to better cope and carry on with his limitations in a more constructive manner.

At this time there are no interaction restrictions for Ray.  Visitations are welcome but should be scheduled first with his mother.  We may be able to setup FaceTime / Skype options for him as well for the more remote followers.  Feel free to contact us for more specific details on how to reach Ray.  Positive interaction at this point will help him to get out of the ‘funk’ he is in now and put him on a brighter path.  Progress and updates will most likely be slow for the next few months so please be patient.  Please continue to keep up with Ray on his new life journey.

Ray at Home

Thank you,

Team Ray

Homebound Again

With Ray’s continued refusal of help being offered a decision has been made to pull him immediately from the NeuroRestorative program.  Discharge is currently scheduled for some time on Monday where he will be transferred back to St Augustine for a temporary stay with his mother.  Given this sudden change in the care plan the VA is still in the process of attempting to line up his new care team in the area for primary care, nursing, home health aide, and outpatient therapy.

During Ray’s stay in St Augustine we will be evaluating long-term options for him.  Sadly no breakthrough has happened for him to accept or even acknowledge he has deficits since his accident.  This has been the major obstacle that so many people have attempted to overcome this past year and a half in order to assist with Ray’s recovery.  The options at this point are slim and with Ray not willing to do anything to better his situation it makes matters only more difficult.

This will be the third time now that Ray will be moved back home since his accident.  Each previous occasion was met with a situation that required urgent transfer back into a live-in care program.  While Ray has recovered more since his last incident, he still displays the same behavioral issues and stubbornness with listening to the advice of others.  We need everyone to keep Ray in mind over these next few weeks as he settles once again at home.  More details to come soon as we know more.

Thank you for all the continued support.

Raise for Ray

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.

Team Ray

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

Contact with Ray

All -

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.

Thank you,

Team Ray

Keeping On

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

Thank you,

Team Ray

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