January 2010

Over the past couple of weeks, John's physicians have begun changing some of his medications. As with most aspects of brain injury, there is the constant hope of finding the perfect combination of drugs and dosages to help John along in his recovery. Unfortunately, when his medications are altered, it sometimes causes a bit of a setback until they have the opportunity to fully transition into his system.

One of the physicians John recently went to see was a movement specialist. I had no idea that there was such a specialty however recently John has been having difficulty with movement, particularly with walking. Although he has had almost constant rehabilitation, one of the side effects of brain injury can be dystonia and John has recently been showing indications of having it. Although there is no confirmed diagnosis, John's physicians will be watching closely and altering his medications as necessary.

The best and most descriptive definition of dystonia is, "is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.[1] The disorder may be hereditary or caused by other factors such as birth-related or other physical trauma, infection, poisoning (e.g., lead poisoning) or reaction to drugs, particularly neuroleptics.[1]" While we don't know what exactly caused this to happen, we are glad that his physicians noticed it almost immediately and have been aggressive with treatment plans. Unfortunately, there are no real "cures" for dystonia and the best options involve long term medication administration and trying to alleviate any pain associated with it.

John fits into a unique catagory in that he has an injury which is cannot be treated in a traditional way. Brain injury is specific to the individual. Although there is statistical data about brain injuries, no person can say for certain what his long-term prognosis might be.

You may have noticed that there has been much talk of traumatic brain injury with veterans returning from war and lately there have been some studies which show that concussions are also a form of traumatic brain injury. There have also been studies to determine the effects of repetitive concussions in NFL players. While John's injury is of a different type, we know that when he was younger and playing sports he suffered at least a couple of concussions. We have been told that at times, those who have had concussions then suffered a brain injury later have a bit of a harder time recovering. The brain is fairly resilient but it can only take so much. John's tests have revealed that he has no "damage" to his brain however the tests simply cannot show how many or which pathways are injured and in need of repair because his brain was without oxygen.

This is where the being patient part comes in. As much as we want John to heal quickly, this is a process which will take time. There will be times when his healing process will be less overt. This doesn't mean it isn't happening, it just means that it's hard for us to see. His progress has been so miraculous up to this point...it's remains unbelievable to me that 6 months ago he was in a coma and we weren't given much hope of him surviving by healthcare professionals much less that he would have healed so much in the past months. He certainly has been given all available opportunities to thrive despite his injury and this will continue.