Stalling Pattern

The care team at the Gainesville VA is still undergoing assessment of Ray to determine the best possible next step that can fully support his needs.  There is a considerable amount of coordination needed before a transfer can be made to a specialized therapy option.  Before Ray can be considered for one of these options, he will need to be open and willing to participate in the program.  The past few weeks he has been somewhat open to the options provided.  Ray is doing his best to make the most of the situation given his current restrictions and placement.

If you can, please visit or call Ray for encouragement.  Day passes for earlier visitation may be granted by a physician on the care team if you call ahead.  Normal visiting hours are from 6:00 – 8:00 PM.  He does not have a direct line yet but can be reached at 352-548-6000 x1500.  We need to focus support on helping Ray to engage more with the care team.  This will greatly help in getting him out of the psych ward more quickly and on with his TBI recovery.  Please continue to show your support by helping Ray to accept help and move on.

Thank you!

Team Ray

Awaiting the Plan

It is approaching two weeks since Ray was transferred to the Gainesville VA hospital.  There has been very little information provided by the care team for an update on the situation.  So far he is still under evaluation in the psych ward and we are awaiting an official plan of care to decide what option is best.  Ray has become more willing to cooperate with the therapists and appears to be engaging well with staff.  It will be important for him to remain open to help and to keep a positive frame of mind.  This attitude should also allow for a more immediate transfer to a rehab unit.  For now we await word from the care team on what next step is determined.

Visitors are still welcome to help encourage Ray.  Given where he is currently situated, there are still restrictions on visitation.  Again he is in room 518 on 5 East of the new VA building and visiting hours are from 6:00 – 8:00 PM.  He is currently only allowed two people to see him at one time and no items are permitted into the room when visiting.  Hopefully there will be a change in Ray’s plan of care next week and he will be moved to rehab and enjoy more engaging therapies in addition to added freedom.  Please continue to focus all your positive thoughts and prayers on Ray.

Thank you!

Team Ray

Setback

Over the past few weeks the family has witnessed a noticeable more aggressive change in Ray.  He has become more stubborn in following the rules of his care team and unwilling to participate in all of his needed therapies.  His mindset has become altered in which he feels it unnecessary to receive appropriate help for his recovery.   While at home he has refused the use of his walker and wheelchair, and there have been a few days where he completely refused any therapy.  We are not seeing Ray engaging fully in practices that will help him recovery more quickly.  What we are seeing appears to be a regression that if not changed could severely impact the extent of how much he will recover.  We have addressed these concerns with the VA care team to see what may be possible but unfortunately Ray has been unwilling to participate in the options so far provided.

Last night Ray had an incident while at home in which he had to be rushed to the hospital.  He was able to get into his tremor medicine, which is a large bottle of liquid, and consumed unknown quantities.  Due to his bad tremors he spilt the medicine all over the floor making a slip hazard which caused him to fall down several times and chip his teeth.  Fortunately Ray did not consume a lethal amount of the medicine and aside from the tooth injury and a few scrapes there does not appear to be any other damage.  Since Ray is not able to properly cooperate in the care process while at home a decision was made last night to transfer him to the Gainesville VA.  He has become a safety risk that could lead to many other incidents if not properly controlled.  While at the VA Ray will be able to get the care he needs to better help in his recovery.

Thus far Ray remains in denial on what is needed for his recovery.  He has been placed in the pscych ward of the VA hospital.  As such there are restrictions on interaction with him at this time.  Once Ray is more willing to cooperate, he can be immediately placed into a rehab program where he will be able to take full advantage of all the services offered.  We all need to focus on Ray coming to terms with his situation and accepting help.  If anyone would like to visit him he is in room 518 on 5 East. Visiting hours are from 6:00 – 8:00 and restricted to only two people at a time.  No items are allowed into the room either when visiting.

Given the sudden change in Ray’s situation we have yet to formulate a new plan of care.  This week we will work out the details on an approach more suitable to what is needed.  We really need to focus on Ray getting onboard with his options.  The more he resists the longer his delay in receiving the full benefit of the recovery process.  Ray has it in his mind that he will be able to get back into his old life very quickly.  Unfortunately that may not be the case and he needs to come to terms with reality.  Once he accepts there will be the opportunity for improvement.  Please keep your thoughts and prayers focused on Ray during these next few weeks.

Thank you!

Team Ray

Looking for Options

Ray has started to get into a steady rhythm with his outpatient therapies at Brooks. His schedule has remained the same over the past few weeks. Progress in PT, OT, and ST are being assessed at about the same level since moving to outpatient. Ray has even been able to enjoy some extra therapy at the local YMCA to supplement what the VA provides. Medically his mobility is still impaired and he requires the use of a walker for short distances and a wheelchair for longer durations. Progress has been made in his ability to traverse certain obstacles and his speed in doing so has also increased slightly. Posture and balance are still shaky due to elevated and prolonged Holmesian tremors. As a result his ability to read, write, or operate most devices has remained extremely limited. For most tasks involving precision, such as eating or using an i-device, assistance is required. Ray no longer has a feeding tube and currently has no restrictions on diet. The only precaution with food and drink are for him to go slow with thinner liquids. There are also no restrictions on interactions with Ray or involving him in community activities. His level of participation in activities may vary but he has done will with several outings, friends visiting, and weekly bike rides through the neighborhood.

Given Ray’s current limitations there are many activities that may not be suitable or possible for him at this time.  The current focus of his plan of care is to address the tremors with new medicine, as there has been no significant change with this in the past four months.  A recent consult with a neurologist in Gainesville earlier this month has addressed the need for a change which has been promising news to Ray and the family.  As he transitions to the new medicine there should be noticeable changes with the tremors which will allow for him to better engage in therapies and daily activities.  Ray will need to be observed on a regular basis by the care team in order to properly assess if the change is working as intended.  We will be taking short videos of him doing basic tasks and sending them to the care team for review.  Friends visiting Ray can also feel free to video him during this time to help with the evaluation process.  Since scheduling with the neurologist is through the VA in Gainesville, Ray may not be able to meet with the physician more than once a month.  The videos will help to provide a means for assessment by the doctor in between visits.  It is unclear at this point how long the evaluation period will last or what exactly will be involved.  Once we know more, there will be another update with a link to the short video clips for review (FB group).  We see the change in the plan as a good sign that Ray will be able to gain a better grasp on conquering his limitations.

Today marks ten months post-accident.  Ray has been home since early January and has progressed from the VA Home Healthcare into the VA-provided outpatient care.  As most are aware there is a limit on what the VA will provide for outpatient therapy.  The exact length and extent to what they will provide remains to be seen. It may be possible to continue Ray with the same rehab schedule at Brooks using donation funds once the VA piece has been exhausted, but this will surely not last long and will leave him with no financial reserve for emergencies.  As Ray continues to go through his recovery, the VA will be assessing him for potential long-term disabilities.  It is still too early to be certain on what the “end-state” will be.  Considerations for planning will need to be done by the VA and family on what long-term options should be considered should he need constant care beyond one year.  As Ray continues to become more self-aware of his situation he will need the positive and encouraging support from family and friends to help keep him from depression.  He has been attempting to cope with his new limitations that appear crippling and impossible to overcome.  At times his thoughts can become very dark and he struggles to free himself from the negative feelings.  It has been an ongoing effort to provide Ray with the needed support to include therapy and medicine in order to assist him through this phase.  Please continue to help lift up Ray and keep him going strong on his road of recovery.

Fresh cut … complements JW Salon.

Thank you!

Team Ray

Out and About

Now that Ray is beyond the transitional phase since being home, his therapies have become all outpatient.  This coming week will be Ray’s first full week of these therapies at Brooks Rehabilitation in St Augustine.  He has been approved for speech, occupational, and physical therapies three times a week.  Nursing and respite aid are still available for home calls on a limited basis as needed.  Physician follow-ups for medical and neuro needs are also ongoing to ensure Ray stays healthy.  The transition to the outpatient environment is a positive sign that Ray is still on a path of progress.  It is also much more likely that his recovery will continue at a good pace with the outpatient resources that are available.

We are seeing that Ray is able to do more by himself in his daily tasks.  He is able to tolerate all types of food now and no longer requires water intake through a feeding tube.  With luck he should be able to have the tube removed soon.  While his tremors are still frequent, they are not a constant and we are doing what we can to work around them.  His primary care physician will help us to re-evaluate what is needed to better control the shakiness.  Muscle control and movement with the walker are also improving slightly.  Ray has kept himself busy with muscle control therapy items and even yoga at the house led by a friend.  We were even able to get Ray a bike so that he can ride around the neighborhood.

Enjoying a nice bike ride with Ray on St. Patrick’s day.

With the nine month post-accident mark this Thursday, we should start to see Ray becoming more grounded in his situation soon.  Depression is inevitable when so much has changed.  We are still working to keep Ray uplifted and away from depression.  Several of Ray’s friends have done a great job with this by keeping him company and engaging him in positive activities.  It will be great friends and a supportive family to help guide Ray when he needs it as he continues his journey through TBI.

Thank you!

Team Ray

 

Steady as it Goes

Last Thursday marked the eighth month since Ray’s accident.  It is hard to imagine that in just four months one year will have passed by.  In that amount of time research has shown that most of the long-term impairments of people post-TBI will become known.  Although no one can truly predict the extent of Ray’s ultimate recovery, we can use the average as a gauge on what may come.  Every day Ray continues to work on improving his limitations through various types of therapy.  Progress now may be slow but there is still a determination in Ray and his therapists to keep going strong.  Frustration and depression are no strangers to those with brain injury as they go through the recovery process.  Staying busy and having the continual support from family and friends has kept Ray in good spirits and ready for the next day.  It has been a great help for him to have all the visits, phone calls, and short outings to keep the day fun and lively.

Now that Ray has been home for over a month, he is starting to get into a good routine with his therapies and appointments.  A few of his friends have even dedicated their time for weekly visits to help him keep a schedule.  It is our goal to also involve Ray in community activities when he is ready as a way to aid in his recovery.  At times Ray can become very quiet and less involved in activities.  This is when depression can start to creep in and take over.  During these times engaging Ray in conversation or simple therapies are great ways to avoid depression.  He has several therapy items at the house for this reason.  We continue to look for new tools and methods that may help in keeping Ray busy while also working to improve his limitations.

As Ray continues his recovery and when approved by the VA, it may be possible for him to participate in outpatient therapies on a regular basis.  These facilities offer a wider range of services to help with walking, muscle control, and various therapies than what is possible from home.  Right now Ray receives all his therapies at the house on a schedule dictated by his therapists and what the VA will allow.  There are a few rehab locations in the area that we should be able to utilize in the near future to better assist in Ray’s recovery.  He actually has a few preliminary appointments lined up soon to get things started.  His current PT, Jon, has been a huge help in this process and for making sure that progress continues.  We cannot thank people like him enough for all of their help and support.

Thank you!

Team Ray

Uplifting Support

What a great day for Ray!  Today was the 5K Race for Ray event in Gainesville put together by the University of Florida’s College of Medicine.  Despite having the early wake up and chilly morning, over two hundred people turned out to show their support for Ray.  All along the route Ray received encouraging support to help lift his spirits.  Since he cannot walk at great lengths yet without extreme fatigue, he was pushed along the route in his wheelchair with friends and family at his side.  Finally at the last turn of the course, Ray was able to walk to the finish line with everyone applauding and cheering him to the finish.  The family and Ray were truly overwhelmed with gratitude and emotion from all the loyal support from this event.

Race organizers Danielle and Philip presenting Ray with the race registration poster.

Ray is at a point in his recovery process where he needs all the extra kind words and support family and friends can provide.  Dealing with the aftermath from a severe brain injury can not only be physically draining on Ray but also mentally and emotionally trying.  Depression can often linger for quite a while after TBI patients return home.  Please keep the support coming and show Ray that we all care.

Check out the Pray for Ray Facebook group for more pics from this event and feel free to add any of your own to the event album.

Coverage from the event:

Gainesville Sun article

UF Alligator article

YouTube video

 

Thank you!!!

Team Ray