Today was a weird day. We just couldn't get it together. The energy all around us was off. Have you ever had that feeling that you just weren't in step with your surroundings? We had good intentions. After waking and going through the morning routine of waking up, Chest Physio therapy and just getting out the door which can take 2 hours we drove down the road to a farm near our home. The place just had a bad feeling. The animals were behind fences (some petting zoo) and it just drove Shira nuts. When Shira cries she chokes and too much crying just leads to desating (vital signs start to go down because of all the choking). I guess i'm really tense because I read a letter from one of our doctors last year that said, 'Shira is doing well as she must be a stronger Phenotype.' You can read what that is here http://en.wikipedia.org/wiki/Phenotype
You know, when Shira was first born the neurologist looked at her and told us she was so weak she probably wouldn't live a year. Now that Shira is 3 she is considered stronger. None of the medical professionals really discuss the care she gets and the effectiveness of Dr. Bach's NIV Protocol because he is an unproven quack.
All us SMA parents hear the same thing 1) your child is so weak take them home and love them until they die 2) No you can't put your child on the AA diet its unproven 3) No you can't use the cough assist your child is too young, too weak, you'll give her a pneumothorax (blow out her lung) 4) There's nothing you can do for your child and on and on.
I just get so pissed off when another parent phones or writes me from another part of the world and I hear the same BS come out of the mouthes of these doctors with absolutely no experience in the care of SMA patients through the patients life. And the poor parents see all of us with our older kids and they scratch their heads because if they apply what they are being told and then look at us you start thinking that someone is not telling the truth.
I know how hard it is to fight against a system that is supposed to be helping you. A system that runs on conventional wisdom with all research carried out behind closed doors until a cure is found. We don't here about what happens to all the patients that are tested on we only here about successes.
Then what about the patients that suffer from serious stuff life Shira where they are actually missing genes. Cancer can be cured and you can live with it for a long time because you are a whole person with the added cancer. I'm not downplaying the terror and everything else cancer brings including death but you have a chance of being cured or and going into remission. I'm no fool and I see SMA patients dying left and right, there is no cure and life expectancy is short. The problem i have is that the medical system doesn't like this sort of patient. The medical system likes the patients where they have a chance to live. You hear about how effortlessly and quickly the medical system here responds to cancer patients. I rarely see a cancer patient in the news advocating for their life but I see parents with children with disabilities or families with geriatric parents in the paper advocating all the time.
What is this? Are we only survivalists? Do we only care about winning and not just playing the game anymore. I guess we are only a country of winners and to be a winner you have to be rich its still not ok to be Joe Shmoe and be a winner you have to be a movie star, rock star, business tycoon, habitual bank robber on CNN, and you have to be rich or famous!!! And when you are famous you get service even if you are a real bad but famous criminal, you get quick and effective medical care should you need it.
Now i'm not saying that we don't have what we need now because we do but I relive the terror of loosing my child every time a newly diagnosed family calls me for help wondering how I got what I have for Shira.
I've decided to post the Hippocratic Oath both the old and new maybe if you are having trouble with your doctor you can give him a copy.
Hippocratic Oath -- Classical Version
I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfil according to my ability and judgment this oath and this covenant:
To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art - if they desire to learn it - without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but no one else.
I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.
I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.
I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.
Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.
What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.
If I fulfill this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.
Translation from the Greek by Ludwig Edelstein. From The Hippocratic Oath: Text, Translation, and Interpretation, by Ludwig Edelstein. Baltimore: Johns Hopkins Press, 1943.
Hippocratic Oath—Modern Version
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and
understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these
related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with
affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.