May 23, 2010

Recently, John's therapists had him outside playing some softball:




Over the past few weeks, John has continued to struggle with swallowing and speech. There are some days that he can talk and seems alert and then there are days when he is only able to mumble and is unable to speak clearly. Walking is always difficult however he has had a few days that he has been able to do more walking with less assistance. We have been told that this is most likely because of the dystonia which has become a huge problem in John's recovery process.

It is obvious that this progressive disease will be a constant battle in his life and there will be times when it is worse than others. The biggest thing is that it is progressive which means that there is no good ultimate outcome and in the meantime, we simply treat it with medications and hopefully force it into some sort of remission temporarily. I should mention that there are times when John is more alert and able to say words, etc. however there are also days when he is anxiety ridden and unable to relax. It seems as though there is an internal battle between the brain continuing to wake up and the physicality of the muscle rigidity. Our hope is that this is not painful for John and we make every effort to pay close attention for any cues which might indicate pain.

A couple of weeks back, John was due to be released from TIRR because he was not improving enough according to insurance standards. I am happy to report that last week, John did show some improvement in therapy sessions and as such has been extended to mid-June. This is good because TIRR provides a more intense level of treatment for John and gives him the best hope for regaining strength and mobility. The insurance process is complex, time consuming and extremely confusing. There isn't a day which passes that John and Holly do not receive a pile of letters from physicians and insurance folks and going through them and trying to decipher what is or isn't covered and more importantly what will be covered in the future is arduous and scary. While John did everything in his power (i.e. long term insurance) to protect himself, we are told everywhere we go just how unique John's situation is. A lot of facilities won't even take John just because he isn't old enough or because he requires a high level of care and most won't take insurance for any appreciable amount of time. Hopefully, you never have to experience this daily struggle but I wanted to mention it as a reminder to folks about what can happen and the importance of planning ahead.

Holly wanted to mention again that she never ceases being grateful for the constant outpouring of support from John's co-workers, friends, and well-wishers. John is loved and although we knew that before all this happened, we could never have imagined just how much he is loved! Thanks so much for your prayers and support.