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Gifts for all occasions in the Galleria! The "What is the Deal?" Deal-of-the-Week: Gifts just right to say Thinking of You. April 3, 2005 Maybe Terri Too? By Jan A. Larson The death of Terri Schiavo was a tragedy in many ways. One of the most tragic aspects of the case was that even though Terri was allowed to lie in a disabled state for 15 years while litigation and allegations swirled, she did not receive a thorough diagnosis of her condition (no MRI or PET scan was ever performed) or the therapy that might have provided her with some opportunity for a more meaningful and productive life. It is possible that the autopsy of Terri's body will reveal the extent of the damage to her brain and will provide some idea of what her true condition was. Of course, knowing what her capabilities were after her death is meaningless. It is too late to help her now. Some readers may have experience with friends or relatives that have suffered brain injury and others may be familiar with amazing cases of people that were written off by the "experts" only to experience miraculously recovery, at least to some extent. Last week I received an email from a lady in the U.K. that had read my recent column entitled, "The Bigger Picture". She told the tale of her son - also written off by the "experts" but who, through the persistence of both of them and the care of some dedicated medical professionals, "came back" from severe brain injury. Her email is reprinted below with permission. -- Terri Schiavo's parents are not being selfish, delusional or misguided. My son was also a "Terri". I am an American who lives outside London and my 23-year-old son received a traumatic brain injury due to a hit & run accident 3 years ago. We were fortunate that we lived a short distance from one of the few specialist neuro critical care units in the U.K. Against all odds and due to the brilliant work of the neurosurgeons my son survived. He was however diagnosed as PVS. If I had been living in the U.S. and he had been married, I too could have found myself in the position that the Schindlers are facing. Luckily for both of us we were living in a country where there is a different outlook on what constitutes "quality of life". I have seen the video clips on the Schindler's website and I believe with all my heart that Terri is not PVS but minimally responsive. I was fortunate to be able to have Adam treated at the Royal Hospital for Neurodisability (RHN) in London. This is one of the few hospitals in the world that specializes in treating people who are PVS, minimally responsive and people suffering from locked-in syndrome. In addition to his brain injury my son had sustained severe bodily injuries, was paralysed done his left side, was deaf, mute, epileptic and blinded in one eye. He was tetraplegic. I spent 15 hours a day for 8 months in this 300+ bed unit. So I lived day in and day out with some of the "Terries" of this world. My son was one of them. At RHN they have developed a world-renowned therapy (SMART) which was used every day to test each of my son's senses for even the most minute reaction. These reactions were closely monitored and recorded every day for consistency. It took almost 5 months before there were any consistent reactions from my son. Once there was an indication that Adam was "in there" the therapy teams then worked on bringing Adam out. The Adam referred to in this link is my son. RHN has two sections, the rehab/hospital section and the residential accommodation. Many of the residents have been successfully drawn out of PVS and MR states. To see the lives that many of them lead today, participating in social activities, using computers and advanced technology to communicate is amazing. My son came out of his minimally responsive state thanks to the efforts of the team at RHN and was eventually moved to a mainstream brain injury unit for another 8 months. Adam is currently in a residential neuro rehab home and has been coming home every weekends and holiday for almost 2 years. We expect to have him home again full time by the end of this year. His rehab will continue at home with the support of a full therapy time and round the clock careers. I had been told by the neurosurgeons that most of what we would get back with my son would come back within the first 6 months and after that we would get very little back. Wrong! He has been assessed by many neurologists over the last 3 years and most of them have given us very bleak predictions of the future. WRONG! Today my son has been assessed as having the university-level intelligence he had prior to the accident. He is no longer deaf or mute. He is able to speak so that most of what he says can be understood. He spells out what we cannot understand. He no longer takes medication for his epilepsy. He is able to walk across the hydrotherapy pool with help to stabilize himself and can do 5 lengths of the parallel bars. He has regained most of his long-term memory and his short-term memory started to come back 4 months ago. He is able to use the computer to play games and send e-mails to his friends. He has retained most of his original personality and sense of humour, is regaining continence and has now had his stomach tube taken out so that he is able to eat a full diet again and feed himself. He has been weaned off his epilepsy medication completely and remains seizure free. He also brushes his teeth and is able to wash everything but his back, bum and feet while sitting in a special shower. He has had the sight in his blinded eye return. He remembers the words to almost every song he has ever heard and sings along with them--although I do think he could benefit from singing lessons! When not doing therapy he spends his time socializing, listening to music, watching TV, shopping, going to rock concerts and having meals out in restaurants.We have just been given the OK to transport him in a conventional car seat rather than his wheelchair and we are taking him on vacation to the Canary Islands in April. The "experts" have given up trying to predict how far my son will progress. They are just watching in amazement. Of course his recovery is due to the loving and continued interaction and stimulation of his family and friends, occupational therapists, physiotherapists, speech & language therapists, hydrotherapists, neuropsychologists, music therapists, computer therapists, acupuncturist, cranial chiropractor, Chinese medicine specialist, specialised dental services, technology specialists, bio-medical engineers, case managers, neuro optical rehabilitation, wheelchair specialists and a legal team second to none. How could people get my son's prognosis so wrong? I have learned first-hand that there is a big difference between neurologists, neurosurgeons and rehabilitation specialists. The rehabilitation specialists had a much more "let's wait and see" attitude because they see the progress that people like my son make everyday and the neurologists and neurosurgeons were on the whole very pessimistic. So, that brings us to the question of could Terri Schiavo have been misdiagnosed. Very definitely, particularly if her assessments have been done by neurologists or neurosurgeons rather than rehab specialists. We will never know if Terri could have benefited from the same type of intervention that my son has had. She will unfortunately never be given that opportunity. She will be dead. If you look at any of the work of Dr. Keith Andrews from RHN who is one of the world's leading authorities on PVS you will see that his work has shown that over 40% of those thought to be PVS may have been misdiagnosed. http://www.donoharm.org.uk/doctorsfed/spring2004/5.htm http://www.comarecovery.org/artman/publish/ReportOnTheVegetativeState.shtml What a shame that people have not erred on the side of caution and have condemned Terri to such a horrible death. It terrifies and sickens me that I, too, could have had to fight to keep my son alive. Funnily enough, at the time I was fighting to get the funding for my son's treatment I said to Dr. Andrews that I wish I was back at home (meaning in the good old U.S.A.) where I wouldn't have to fight for the funds for his rehabilitation. Dr. Andrews chuckled and replied, " no you wouldn't have to fight for funding, they would have just switched off his machines." I found this hard to believe at the time but I am now shocked at how right he was. Lois J. Harden lois_harden@hotmail.co.uk -- Send feedback to the author. The "What is the Deal?" column will appears weekly on the Pie of Knowledge website. Guest submissions are welcome and encouraged. To submit an article to "What is the Deal?" click here. To subscribe to the "What is the Deal?" mailing list and receive early notification when a new column is available, click here. The Pie of Knowledge will never, ever divulge email addresses to any third party for any reason unless so ordered by a court of law. 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