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