myotonic muscular dystrophy - Muscular Dystrophy Message Board

ronnie0a · 06-13-2003, 01:33 PM

My wife of 30 years, Addie Lee Alexander (the former Kay Ann Joncas), was killed in March by the administration of drugs that are not dangerous to most of us. My 911 call had saved Addie's life, as on previous occasions, but this time the Firemen refused to transport Addie to the nearby Trauma Center, where we had prepared the staff to treat myotonic muscular dystrophy (MMD or DM:dystrophia myotonica). Then at the County Emergency Room, the staff refused to follow the protocol established by their parent organization at UCLA. Even though Addie was responsive when taken from our home, her condition deteriorated through the night, as she was repeatedly given strong drugs that cause myotonic paralysis of her vascular system. I was unable to prevent this series of wrongful actions that led to Addie's death, despite all my years of training and caring for this disease.

If others have had similar experiences, please let me know. I will have a battle against Los Angeles County, who claim that they "just treated her like any other coronary patient" - even though Addie did NOT have coronary heart disease!

becks · 06-14-2003, 07:21 PM

First of all, my heartfelt sympathy is extended to you even though I do not know you nor did I know your wife....I've not had a similar experience either, but I am intrigued since you mentioned your years of experience/training/caring for this disease. My husband was diagnosed just 5 months after we were married (we'll soon celebrate 27 years together) and still we know so little about myotonic dystrophy....how did you learn so much? I'd appreciate any help you can give to shine light on this challenging disease. Thanks

Quote:

Originally posted by ronnie0a:
My wife of 30 years, Addie Lee Alexander (the former Kay Ann Joncas), was killed in March by the administration of drugs that are not dangerous to most of us. My 911 call had saved Addie's life, as on previous occasions, but this time the Firemen refused to transport Addie to the nearby Trauma Center, where we had prepared the staff to treat myotonic muscular dystrophy (MMD or DM:dystrophia myotonica). Then at the County Emergency Room, the staff refused to follow the protocol established by their parent organization at UCLA. Even though Addie was responsive when taken from our home, her condition deteriorated through the night, as she was repeatedly given strong drugs that cause myotonic paralysis of her vascular system. I was unable to prevent this series of wrongful actions that led to Addie's death, despite all my years of training and caring for this disease.

If others have had similar experiences, please let me know. I will have a battle against Los Angeles County, who claim that they "just treated her like any other coronary patient" - even though Addie did NOT have coronary heart disease!

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