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


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