Hopeful Year Ahead

Ray has been adjusting well at home since his transfer from the NeuroRestorative program earlier this year.  Recovery remains slow and steady with the likelihood of more recovery highly possible.  The length of time for recovery has been difficult for Ray to accept but he is now able to fully embrace his situation with a new optimistic mindset.  This acceptance has resulted in a positive outlook on life ahead.

Contributing to the upbeat attitude has been Ray’s involvement with a movement disorder specialist.  Earlier this month he was able to attend an initial appointment with the specialist through the VA in Gainesville.  From the appointment Ray was prescribed a new tremor medicine, Topiramate, which has already begun to help him slightly with the tremors.  This new medicine is being taken concurrently with his other tremor medicines during this initial evaluation.  A follow-up with the VA on this is expected mid-February.

Keeping Ray busy has also been a great way to engage him and keep him from depression.  On his own ambition he has applied to become a volunteer at Flagler hospital with plans to also volunteer at the local YMCA.  Ray has an interview early next month with Flagler to discuss his application.  Please send him good luck for these volunteer opportunities.  This would be a great way for Ray to help the community and himself in the process.

As Ray continues in his outreach with the community you may start to hear more from him.  He does have a laptop and iPad but requires assistance with using them.  The VA may still be able to provide assistance to him on being able operate these devices with less involvement through specialized hardware/software.  Now that Ray is more accepting of his limitations there should be additional appointments with specialists for help.

Looking back on this year there has been a vast improvement in Ray’s demeanor.  Anger and impulsivity were constant issues that now seem to have gone away almost entirely.  Ray is more physically fit and able to perform far more ADLs than before such as shaving, laundry and vacuuming.  Attending social events and visiting with friends without incident has also been a highlight from this year in review.  As we look back on all the great things from this past year it gives us a renewed hope for what lies ahead.

Park outing after Christmas.

Park outing after Christmas.

Please continue to reach out and contact Ray.  He appreciates your support!

Thank you,

Team Ray

Hanging On

It has been over two months since Ray was transferred home from the NeuroRestorative program in Tampa.  In that time he has been doing what he can to best adjust in his new life.  He is far happier and healthier now than when in Neuro, but the depression over his current situation lingers at times.  A point of contention in this has been the length of time for recovery.  By now we have all hoped that Ray would be farther along in his recovery, including Ray.  The realization has finally sunk in that more recovery may take much longer, or worse not happen at all.

Last week Ray had a follow-up neurology appointment in Gainesville from his first one back in April of ‘13.  The purpose of the visit was to discuss what options are available to him given his diagnoses of having Holmesian tremors.  The two main treatment approaches for most brain injuries, outside of therapy, are medication and surgery.  From the follow-up visit it was determined that surgery was not a viable option.   The difficulty in the situation is that Ray has been on tremor medicine since June of ’13 with a second one started around January of this year.

Ray’s condition is very unique and has been complicated in developing a plan of care.  There is some hope that a change in medication dosage will bring about additional recovery in the short-term.  At the moment only two medications are being explored and prescribed, Levetiracetam / Keppra and Primidone.  From the appointment an increase in Primidone was prescribed by neurology in conjunction with a follow-up visit to see a movement disorder specialist to better examine all the options available.  Ray was especially anticipating more direction from neurology on this given how long it has been since his first appointment, but instead must rely on the other help being offered.

In addition to treating the tremor issue the VA is also looking into compensatory options to assist with daily living activities.  One particular area that Ray wishes to improve is his ability to read.  He struggles greatly with reading most things even with magnification due to his tremor activation when trying to concentrate.  A consult with the low vision clinic has been scheduled for next week to determine what may be needed to help.  OT and ST are also involved through the VA to assist with providing tools to improve or work around Ray’s limitations.

Outside of what the VA fully provides for care Ray is also attending a rehab program at the local YMCA for physical fitness three times a week.  This brain and spinal cord injury program is run through Brooks Rehab with trained staff leading the exercise in the YMCA gym.  With Ray’s debilitating tremor issue, especially during concentration, he is greatly limited on what activities he can do.  Despite the obstacles he has found this to be a great way for him to get out in the community and for keeping healthy.

Involvement in the community has been a struggling block for Ray.  He needs and wants the involvement but lacks the skills and ability to become more involved.  Since his accident Ray has lost certain social skills and refrain of impulsivity.  Ray has improved significantly in his self-awareness including being able to joke with others about his injury.  Much of Ray’s sense of humor and personality from before his accident are still present.  At times though he may say something inappropriate for the situation or become suddenly distant when engaged in conversation.  This is normal for many brain injury survivors and something Ray will struggle with for the rest of his life.

Ray wishes to be able to connect with people and engage more in his new life.  Currently he requires a good deal of assistance with using communication devices (laptop, iPad, phones).  Software may help in allowing unassisted use with these devices but we are still working through the process.  We are hopeful that he will be able to do more on his own in being able to keep up with his friends.  Ray is able to help out with some chores around the house giving his care taker / mother a break.

Ray helping with some yard work.

Ray helping with some yard work.

In another few months we should have a better idea of Ray’s road ahead.  Please continue to keep up with his progress and send him your thoughts and prayers.  He would love to hear directly from you as well.  Last week’s appointment was not as hopeful as expected and he could use some extra encouragement to stay strong on his path to recovery.

Thank you as always,

Team Ray

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