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


3 thoughts on “Keeping On

  1. Again, as usual Tom, you have very thoughtfully presented Ray’s currant situation. Your love and divot ion for Ray is wonderful.
    I hope Ray still has many folks praying for him. And as always, his family is so very greatful for those prayers and good wishes.

  2. I was kind of nervous to read this update. Breathed a sigh of relief when I read that Ray has been making progress. That’s so wonderful that you and the family got to visit with him. Those are really sweet pictures. Sounds like you really have to roll with the punches when you’re talking to him and be very patient with his varying moods. I’m sure it’s hard to be on the receiving end of an outburst but who can blame him for being upset. I’d be cranky too if I was shaky, bored and hungry from not eating any solid food. In spite of his denial, he can’t not know that he is impaired. Wrapping his head around that must be incredibly hard. It’s encouraging that he is indeed participating in his therapies and that there are so many goals in place. Thank goodness you got him into a progressive program so he’s not just languishing about with no direction.

    Sending love and support to all of you,
    Carole Rains

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