Blazing New Ground

A lot has gone on in the last couple of weeks. It is hard for me to believe that it has been almost a year since this journey began. I'll try and do a special blog entry on or near the anniversary of Judi's injury (April 26) to give everyone a clear picture of where we are today and what the near future holds (as I know it today).

Judi had her 3 month follow up with her neurosurgeon last week and a CT scan of her head. Everything looked good and her shunt is performing well as evidenced by the size of the ventricles in the brain. The only real concern we have associated with the multiple head surgeries are two small areas on her head where she has divots (my term) in her skull where bone has not filled in. It is not uncommon for this to occur, but the shunt causes skin to be pulled into these areas tighter than would occur under normal conditions. This establishes the conditions for skin breakdown to occur. If any significant skin break down occurs in these areas it could result in fluid leakage from her brain and that is a medical emergency for her. I have been watching these areas like a hawk from day one and we don't believe this will be a problem in the long haul.

We began neurofeedback therapy last week as well. Judi handled the three hour trip well. Thank goodness for the DVD player in the van!! She slept for about half the ride and watched videos for the other half. I was able to get a lot of insight on what is going on with Judi's brain function during the evaluation activities and the first feedback session. During the feedback session, there is a real time localized EEG running that monitors her brain's response to the video input. We were able to quickly identify the frequency where Judi's brain is exhibiting "slowing." The neurofeedback process essentially identifies these frequencies and then begins to exercise the brain to improve response in this range. This is where I struggle a bit with what is reality and what is just a good sales pitch. The line being that neurofeedback is an ideal therapy for this type of brain issue. The exact mechanism by which neurofeedback works is a bit "fuzzy" at best and my engineering thought process struggles a lot with a lack of direct "cause and effect" data. There is a lot of evidence that the process can produce significant improvement, so we are going to continue for a while and monitor Judi's response. If it works, I don't care what the true mechanism is. I'll keep you updated as we get more exposure to the process.

Last weekend Judi got her first real haircut since her accident. She thoroughly enjoyed the experience and it was great to see her relax and smile as they shampooed her hair and pampered her. I asked her who did a better shampoo job, the girls or me - she busted me and immediately pointed to the girls!!!! We all had a big laugh and it was a very positive experience for all of us. I plan to get her to the manicure/pedicure next. She always loved this in the past and was always her treat for herself. I asked her if she was interested and she smiled and signaled yes.

We have a neurologist appointment this Friday for followup as well. I have already talked with the Dr and the plan is to evaluate where we should keep Judi on the anti-seizure medication. As you may recall, we had placed her on the medication to see if she was having some low level seizures that we were not seeing external symptoms of. I have not seen any positive change that would be attributed to this potential issue and the reality is that the drug has a slowing effect on the brain (that's how the seizures are controlled). Judi has shown significant cognitive improvement over the last couple of weeks and I would like to eliminate the impact of the drug to see if she improves more. Unfortunately, seizures often occur when anti-seizure medication dose levels are changed. We'll have to be ready.

Tomorrow (4/15) is Judi's birthday. I have been picking on her for a couple of weeks about getting old and she always gets a laugh out of it. I will admit that it will be a bit of a struggle for me to remain positive as we celebrate her birthday. Judi turned 50 last year and we had a lot of fun celebrating it. I have a lot of very vivid and fun memories of where we were last year at this time. We made a lot of plans for the coming year and out years as well. We had finally reached a point in our personal and professional lives to "stop and smell the roses" as they say. Little did I know that in less than two weeks our lives would be drastically changed forever. So as Judi turns 51, we have a whole new life ahead of us with many new and unique experiences and challenges. I wonder what next year will bring?

Thanx again for the prayers and continued support.
Steve

Time Flies??

I can hardly believe it has been almost three weeks since my last post. It seems that I continue to run out of day before I run out of things that need to be done.

Judi continues to improve with her "yes/no" responses. We have settled on using the hand signals and she grows more and more responsive with the signals each day. We still have to prompt her to answer the majority of the time, but she answers confidently when she understands the question. I have slowly but surely shifted into teaching her things that she appears not to understand. This is a slow process because I want to make sure she comprehends the topic(s) as opposed to simply answering the questions. This is a key area for us and hopefully she will continue to improve.

The BOTOX injections in her left arm/hand are showing positive results, but we have a LONG way to go there. She is trying to control them, but the response is minimal and sluggish at best. We will keep working hard on them and I have to remind myself that the right side was in a similar condition not too long ago.

Judi's legs continue to get stronger every day. We have been working hard in therapy and at home to strengthen these muscles and reactivate the nerves in the left leg using weight bearing activities. The only thing that is keeping us from putting her on the treadmill (with her body supported by harness) is her head position. We are still struggling in a big way to get her to hold her head up. We seem to make a little progress here and then lose it all again. We will keep working here, but I am afraid we are in for a long and frustrating journey.

Her first neurofeedback session is scheduled for April 6th. I am excited about the possibilities and hope that some new doors can be opened for her as a result of the sessions. I am concerned about the toll that the trip will take on her (it is about a three hour drive), but we'll adapt as we see how she responds. I had the passenger seat in the van modified to swivel so that we can transfer her from her wheelchair to the seat. Hopefully this will be more comfortable for her, but I am not sure she will be able to sit there safely with the current limited control of her head. We'll figure it out.

I guess that's the big stuff. I think it is important to make one key point to everyone that has followed Judi's recovery along the way: after almost a year, JUDI IS STILL GETTING BETTER! It is slow progress, but we are clearly still making progress. I have done countless hours of research on brain injuries and the one common theme is that people will usually continue to recover as long as they are receiving therapy. Much of this data has unfortunately been gathered by monitoring the troops that are returning from the wars that have similar injuries. The old school of thought was that after 18 months a person that had suffered this type of injury would have recovered about all that they were going to. The recovery obviously slows over time and what usually happens is that the support system just accepts where they are and the person no longer gets better. I will admit that I can see how this would happen. There are days when I am so tired I am not sure how I can keep pumping energy into Judi. I can't tell you how many times I have held her close, closed my eyes and asked God to give me the strength to make it just one more day. He always seems to answer. I am convinced that it is your prayers for Judi and me that are making this happen. Easter is just around the corner. Many miracles occurred leading up to, during and after this time in our Christian history. Perhaps there is another miracle in the making for Judi. Please remember us in your prayers and know that I will keep on working with her until the day I leave this earth.

Happy Easter and thank you all for your support,
Steve

Busy Busy

Believe it or not, we are getting busier and busier. We have a lot of activities in progress and Judi continues to get better each day. This will be a quick update with more details to follow as we get closure on some of these activities.

I think the biggest news is that Judi is clearly starting to consistently work with us on yes/no responses. We have been working hard here and we are finally getting her to provide responses to very simple questions using cards (red-no, green-yes) or fingers (two-yes, one-no). We try to string these in multiple linked questions to ensure that she is not just guessing. She is definitely understanding, but still a long way to go. This one is VERY big for us. This clearly marks a step to a new level and I am very excited that we can finally start to communicate with her.

BOTOX injections for her left arm/hand are scheduled for next Monday. We hope to see significant results from this treatment.

Judi continues to be very vocal and we continue to push hard in this area. Any day now I expect her to make the break through and start talking to us.

I have decided to have Judi undergo some neurofeedback therapy sessions. I have been researching this for a while. I have talked with several therapists and people that have utilized the therapy as well to aid in making this decision. It is very hard to describe the process, but it is basically a mapping of the brain with subsequent "training" of the brain utilizing external inputs and electrical feedback to the brain to reinforce positive responses. Although the primary success has been in the area of ADHD/behavioral recovery, there have also been significant successes with traumatic brain injuries as well. As I have mentioned before, I am convinced Judi is fully aware of her surroundings and that there is a specific gap that exists that we must figure a way around for her to fully recover. Based on my research, there is a real chance this therapy could succeed and it cannot hurt her. Unfortunately it is still considered experimental so insurance doesn't cover it and availability is limited. One of the best in the country is located in North Carolina so we will be making that trek on a frequent basis for a while.

That's pretty much it for the update. I try to keep the blog focused on Judi's status, but I need some help if possible from the team. As I indicated above, we are getting busier and busier every day. As Judi continues to recover, she requires more and more one-on-one attention. That combined with the pending out of state therapy is making it impossible for me to get all of the things done around the house that needs to be done. I am looking for someone to come in and clean the house on a regular basis. If any of you could recommend someone, I would greatly appreciate it. Several of you have volunteered to do it, although I greatly appreciate the offer, I can't impose on you at that level. I am also looking for a pool of three or four people that I can train to sit with Judi for a few hours at a time. Again, many of you have volunteered here as well. While I encourage any of you that are interested to come and "hang out" with Judi, I am trying to protect the line between caretaker and friend as much as possible. I am sure that with a little thought all of you can understand why that will be important when my girl recovers. If you could recommend someone, I would greatly appreciate it. I obviously would rather have someone that is recommended by people that care for Judi than trying to interview them and determine their trustworthiness. If you don't have it, my e-mail is swilk@knology.net.

Thank all of so much and keep praying for us. It IS making a difference!

Steve

It's the Little Things

Wow, what a gorgeous weekend! I hope everyone got out for a little while and enjoyed the beautiful weather. Judi and I spent some quality time outside both days. She is over the "crud" and feeling great. On Saturday, we did some shopping and then had some lunch outside and just enjoyed the atmosphere. On Sunday, we spent the morning just sitting outside hanging out with each other and listening to some of our favorite tunes. I talked to her a lot and she seemed to soak all of it in. It is awfully good medicine for me to hear her laugh and see her clearly enjoy herself. The new room is working great for her and she enjoys letting the sun shine in. I think it greatly reduces the "cabin fever" for both of us.


Judi continues to show significant progress physically. She is steadily regaining control of her left leg, but there is still a very long way to go. We had her evaluated for BOTOX injections in her left hand and arm last week to relieve the contractions she has experienced there. The results indicated these are very good candidates and that she should get some significant relief. I am still very concerned about where we are on this arm, but we will continue to pursue all available options to restore it to maximum functionality. Neck strength continues to improve as well. She now has her very own recliner and is enjoying it a great deal. I was able to find her one that fits her almost perfectly and I think it is already aiding in maintaining a better posture for her. We are also changing her wheel chair to a different model that will aid in her back and head positioning. The new chair will also position her legs differently which we hope will minimize her desire to push against the foot plates. We are continuing to experiment with medications and massages to give her some relief from the muscle spasms in her legs. We are having some success and hopefully we can whip this thing soon.

Speech continues to be a focus area. Not much new to share here, but we still believe it is just a matter of time. I continue to spend the majority of our free time during the evening in this area. She is very vocal, but still unable to get everything to line up. If there is anything Judi will fight to recover, it will be her ability to talk!

Mentally her recovery continues at a slow pace, but she is clearly getting better. She is doing fine on the new anti-seizure medication. We will have to keep a close eye on her blood chemistry since this medication has some potential side effects in this area, but so far so good. I am also trying to expose her to more visitors now that she has reached a point where she understands and hopefully recognizes them. The goal being to stimulate her brain activity and cause her to keep trying to put all of the pieces together. I am unsure whether it will help, but I am sure it will not hurt. What I have discovered about brain injuries is that it is very much a trial and error process to see what works. What works for one person, may be totally ineffective for another. Just let me know if you would like to come and visit.

On a different note, I had someone innocently tell me last week how sorry they were that Judi and I were having to go through this and how sad they were that our lives had been ruined. I could write an epistle around both of these comments, but I'll keep it to a few lines since most of you already know how I feel about this. I obviously wish this had never happened, but it did. I wish it had been me instead of Judi, but it wasn't. Our lives have certainly been changed forever, but they have not been ruined. We will move forward and find new things to share together and grow stronger as a result of it. As the title of this post says, it's the little things that are important. I continue to take refuge in the belief that God has a purpose here and that we will be enriched in the long run. I will admit that this is the only thing that keeps me moving on some of the more difficult days. I will also admit that each day of late seems to test my faith and resolve. I only mention it so that each of you will know how important your prayers are to us.

Thank you all again,

Steve

Slow and Steady

Our girl continues to fight the good fight and I continue to do my best to knock the obstacles out of her way. She has made significant physical recovery over the last few weeks and shows continuous; albeit slow, mental gains as well.

Judi continues to grow stronger physically on all fronts.

She is beginning to recover significant strength in her neck and holds her head up for longer and longer periods of time. I know she is tired of hearing me tell her to hold her head up and I am afraid I am going to rub off her eyebrows with the constant "help" in holding up her head. I know that she understands that I am only trying to help, but she still puts the "stink eye" on me at times when she just wants to be left alone. I am confident we will win this battle, but it is going to be a long process.

Her left side continues to grow stronger at a fairly significant pace. She is regaining control of the motion in her left leg and when standing is very comfortable carrying weight on it as well. The more weight bearing activities we can do with her, the more control the brain recovers of the leg. I think all of us are becoming more and more confident that she will be able to walk again based on the response we see. Her left arm is going to require a lot of work, but she is starting to regain control of it as well. The issue here is the significant loss of muscle that has occurred during the time since her accident. We remain positive here as well, but there are sure to be some challenges in front of us.

We are trying to restore her back strength as well. I believe this is going to be our major physical challenge once we get the neck restored. One of the things we are doing to restore her normal posture is to get her out of the wheelchair as much as possible. This also has a lot of psychological impacts as well. She has taken ownership of my recliner and we try to get her in it anytime we can. She spends several hours each day sitting in it as opposed to sitting in a wheelchair and it is clearly making a difference. I came home the other day and she looked like the "Queen of Sheba" sitting there in my chair. When I gave her a hug and kiss she wrapped her hand around my head and gave me a big hug back. I'll admit that tears of joy have been few and far between of late, but I can't describe how impactive these seemingly simple things are on my ability to keep on going.

Speech therapy continues to show slow results. Judi has all the physical pieces, but is still struggling to execute everything in the proper sequence to clearly form words. We are focusing a lot of our effort in this area. We continue to believe it will just time and there is nothing that indicates she won't ultimately succeed.

Her awareness level continues to improve. She enjoys watching TV (especially America's Funniest Home Videos) and looking at magazines while you read to her. I can't tell if she is trying to read it as well. We will continue to try and have her write and respond to words that we write down. It is difficult to tell if she understands or not, but we continue to expose her to it. Writing still eludes her, but I can't tell if it is an eye/hand coordination issue, mental limitation or a combination of the two. Her yes/no responses are improving. She has periods where she will actively participate and is usually 100% then. These are still very limited windows and the majority of the time she just won't commit one way or the other. We continue to work with her and reinforce that there are no wrong answers. This is still a very significant improvement from where she was just a month ago and indicates that she has the ability.

The leg continues to cause both of us a great deal of issues. I have figured out how to minimize the duration of the attacks and she is fighting hard to control them as well. We are exploring several treatment strategies. As always, the complicating factor is not implementing a strategy that impacts the brain stimulation we are trying so hard to promote. More to follow as our direction becomes clear.

As I mentioned in the last post, we started Judi on an anti-seizure medication to see if it would improve her mental status. The first medication kicked her butt and I had to take her off of it. We have subsequently started her on a different medication and she seems to be tolerating it well. We will have to monitor her response once the medicine level builds up to the appropriate levels in her system. The EEG results were abnormal in some areas on the right side of her brain (which we expected) and showed nothing abnormal on the left side. EEGs are "hit and miss" as far as seizure activity goes. None was detected while she was being monitored, but that is only a 30 minute snapshot. At least now we have a baseline to monitor her against.

My biggest problem right now is that Judi has caught the "crud" that is going around. She was spiking a pretty high fever for a couple of days, but that seems to be under control. Now we are dealing with the congestion, cough and (I suspect) sore throat. These would typically be relatively easy to manage, but in her condition each presents a challenge of its own.

Please keep us in your prayers as we take on these new challenges. Judi loves to have visitors and if anyone would like to drop by we would be tickled to have you. She has a busy schedule, but we can always work around it. Just drop me an e-mail (swilk@knology.net) or give us a call (706) 855-6940 if you would like to see her.

Steve

FYI

I had several folks ask me about the title on the last post. Most had figured it out, but had never heard the song. The line is from a song by Rodney Atkins named "If You're Going Through Hell" and I latched on to it this year since it just described exactly how I felt. When I hear it, I turn it up very loud and and sing along (it is a scary thing) and usually end up with tears in my eyes as I renew my resolve to win this battle. I suspect many of you can relate as well. The chorus/refrain is what I hammer on hard!

These are the lyrics:

Well you know those times
When you feel like there's a sign there on your back
Says I don't mind if ya kick me
Seems like everybody has
Things go from bad to worse
You'd think they can't get worse than that
And then they do

You step off the straight and narrow
And you don't know where you are
Use the needle of your compass
To sew up your broken heart
Ask directions from a genie
In a bottle of Jim Beam
And she lies to you
That's when you learn the truth

If you're going through hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I'd fall right into the trap that they were laying, yeah

But the good news
Is there's angels everywhere out on the street
Holding out a hand to pull you back up on your feet
The one's that you've been dragging for so long
You're on your knees
You might as well be praying
Guess what I'm saying

If your going through hell
Keep on going, don't slow down
If you're scared don't show it
You might get out
Before the devil even knows you're there

Yeah, If you're going through hell
Keep on moving, face that fire
Walk right through it
You might get out
Before the devil even knows you're there

If you're going through hell
Keep on going, don't slow down
If you're scared don't show it
You might get out
Before the devil even knows you're there

Yeah, If you're going through hell
Keep on moving, face that fire
Walk right through it
You might get out
Before the devil even knows you're there
Yeah, you might get out
Before the devil even knows you're there.

I have told many of you that I looked into some very dark places this year. It was only my faith and the continued support and prayers from you that gave me the strength to keep going. Never ever under estimate the power of prayer!

Steve

You Might Get Out Before the Devil Even Knows You're There

It has been an interesting few weeks to say the least. Therapy continues to be intense and productive.

Judi continues to gain the most ground in PT. We have started electrical stimulation therapy on her neck and left leg and it is showing some promising results. Her neck control has improved significantly, but we still have a long way to go before she holds it up continuously. The leg continues to grow stronger day by day. The legs are getting a lot of activity from routine as well as therapy activities. I am more confident than ever that she will be able to walk again in the near future (although it will be a while before the stamina and muscle strength returns). More about the legs later.

In OT space, she is doing better with the tasks they are asking her to do. She has developed an affection for the "reacher." This is the device with a clamp on the end that she activates by squeezing a trigger on the other end (about three feet long). Similar to what is used to pick up trash on the side of the road. She is becoming pretty good with grabbing things she shouldn't and I am sure I will be assaulted at some point when I least expect it. We continue to work on the left arm and it is continuing to improve slowly, but surely.

Speech continues to show improvement as well. We have started using music to get her to relax and maybe sing along to some of her faves. She has hummed to a couple and we still hope to find the secret to opening the flood gates. She has all the individual pieces, but still needs to put them in the right order to carry on a conversation. More on speaking later as well.

Now for the other side.

Judi's right leg is just about to drive both of us nuts! She has developed a need to move and push that leg continuously. She has bent a 3/16th inch piece of steel that makes up the foot plate of her wheel chair as well as the tube that makes up the leg by pushing on it. We often have to remove this extension to prevent her from potentially damaging her knee and/or ankle. When she is in this mode, she is totally consumed by it. If you have ever had a severe muscle cramp, multiply your response by 10 and you are getting close to how she responds. She can't seem to stop it on her own, but I can get her to relax for brief periods of time by holding her very tight and essentially getting her to relax to the point she is nearly asleep. When she is in bed, I have to essentially wrap her in my arms and legs and talk her to sleep. If I move too much, she wakes up and starts all over again. As you can guess, there is little opportunity for me to sleep in this mode and her bed rail and I are developing an intimate relationship. She is trying hard to control it which only adds to her frustration. I am struggling because I am afraid she is hurting and I can't figure out how to get her some relief. So much has changed with her in the last few weeks that it is impossible to connect this to any one thing. I suspect it is a combination of mental and physical reactions as her awareness continues to grow and the therapy continues to stress weak muscles. We are going to move her into different chairs in our home (fixed, recliner, etc.) to see if there is one that makes her comfortable and see if that allows her to sleep. Some of you know that Judi suffered from a pretty severe case of "restless leg syndrome" prior to the accident and there is some concern this may be surfacing again. The main problem is that the medications that are used to treat this condition tend to slow mental activity which is the opposite of what we are trying to accomplish. We will continue to search for the solution and I am sure we will ultimately find it.

Judi also had her first neurologist appointment. We had been waiting until her recovery reached a point where she was actually stable enough to evaluate and treat as appropriate. I walked away from the appointment with mixed feelings, but overall felt we had accomplished a great deal. Judi has had a few minor seizures during her recovery which is very common for people with this type of injury. Due to the limited number and duration of the seizures, we decided not to treat her with an anti-seizure medication up to this point since it also tends to slow the brain activity that we are trying to stimulate. Judi also frequently "zones out" and has a blank stare on her face. If you touch her or talk to her, she will come right back to you. She has done this throughout her recovery after she became alert again. We believe this occurs when she is trying to make a mental connection in response to some new stimulus. We have been assured that these are not seizures due to her response when she is touched or talked to in this state. We refer to this as "Judi Land" when she goes here and we usually just watch her and make sure there are no additional symptoms that emerge. After looking at all of Judi's medical history and discussions with her neurosurgeon, there is just no good reason why she is not talking. The majority of the language function resides on the left side of the brain and Judi has not exhibited any other symptoms of left brain issues. Based on all of the data that we have, the neurologist indicated there is a possibility that she is having low level seizures on the left side of her brain that are not severe enough to show any of the traditional symptoms. This could be the reason she is struggling to talk. Based on all of this, they did convince me to put her on an anti-seizure medication for a limited period of time to see how she responds. We have also scheduled an EEG for early Feb (first available time) to monitor her brain activity which may also provide some valuable information as well. My girl also proved me right once again in the Dr.'s office. During the discussion of her symptoms, I indicated that I felt she was fully aware of what was going on round her and they gave me that "sure she can" look that everyone in my situation learns to identify. When we discussed the side effects of the proposed medications, one of the most common is that they get "edgy" and a bit short tempered (just what I need with the most independent and forceful woman I have ever met). When this came up, I made the comment to please not administer something that sets the anaconda free and Judi busted out laughing. All of the Dr.s and nurses looked at me and I simply responded: I told you she understands. I think there are some new believers.

There was also another first this weekend. The weather was so perfect Monday that I decided to get on my motorcycle and just get away for an hour or so (Judi's caretaker was here so that I could get some errands done). I have always found that this was good medicine when the world started to close in on me. This was the first time I had really set off to just go into "Steve Land" since Judi was injured. I am not sure how it happened, but I found myself on roads that we had ridden together (as doubles or with both bikes). There must have been a lot of irritants in the air that day because I couldn't get my eyes to stop watering and ultimately had to head back home. It did give me some time for some special thanks and prayers as I contemplated how much our world has changed.

Thank you all for your continued support of Judi and our family. Your prayers are the best medicine she can receive and I am sure that we will ride together again very soon. Just FYI, someone asked me how long Judi and and I had been riding together the other day. Our first date together was on a motorcycle and that was almost 31 years ago.

Steve