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