Muscular Dystrophy Telethon!
Addie Lee Alexander
Born Kay Ann Joncas December 18, 1948
March 29,2003 Memorial at Veterans Park in Sylmar, CA, 11:00 AM:
The Alexanders' Photo Gallery Menu
"Inattentive" and "stubborn" from early childhood - myotonia slows down "reflexes"
Physical symptoms start age 11 - couldn't let go when holding hands with boys, due to hand cramp... couldn't answer when called on in class due to jaw cramp
Drop out of high school after Sophomore year - care for grandmother. Hope to be nurse aid... strength insufficient after only a few years
Diagnosed age 18 - when father's diagnosis informed the family of the disease. Father had pacemaker implantation for the sudden heart stoppage syndrome - he was having uncontrollable rates over 300
First husband divorced
Unable to complete Oregon State sponsored clerk-typist training at age 20. Unable to type due to hand cramps. Unable to carry more than one or two files at a time. Unable to cross rooms in a timely way...
G.E.D. age 21 - scores barely passing due to neurological strain on mental activities. I.Q. scores at college entrance level. Retake of failed G.E.D. area, with special tutoring, was very good by contrast to routine teaching methods on first round. The distraction of severe pain every day was never any help in concentrating, either
Married second husband at age 22 - still married now! He was a dancer she loves to watch. She's unable to dance more than a minute or two - has "noodle knees"
Husband enters Navy, age 24, to earn benefits and security. She can always get work as a waitress, but it never lasts long. She's a hard worker, but all the work goes to overcome the pain, just to stand upright, and to speak clearly
Gall bladder out age 25
Unable to conceive children determined age 25. Eventual histerectomy at age 30
Dysphasia first seen at age 25. Daytime sleep apparent
Unable to complete saleboat training at age 26, due to limitted strength to right and get back into a capsized boat. Got a new waitress job every time she was fired due to inability to keep up with coworkers
Unable to continue waitressing at age 28, even for a friendly restaurant owner, Donna. Unable to get treatment from Navy Hosptial, who denied existence of Muscular Dystrophy. Husband hospitalized after "airvac" from submarine, led to Donna holding job open. came into work until husband's Navy medical discharge
Unable to complete Bryman school at age 29 even with limitted goals, due to teachers objecting to "inattentiveness in class"
Unable to work, age 29 30 31, during husband's return to college in Oregon. Lived in wonderful forrest setting on the Nehalem River
Unable to work, age 32 33 34, during husband's research at Army Research Labs. Lived in small town setting in Laurel, MD
Eating out, began having meats "fine chopped" age 33
MDA Clinic in MD tells husband to return to home state, since they have no clue how to mitigate pulmonary distress, age 34. This is the first time that the myotonic heart syndrome showed up. Returned to Oregon age 35
Age 35 apply for SSI while husband in unemployed; Husband is making "too much money". Apply for SSDI; she doesn't "look disabled", so her disease is discounted
Age 36 appeals for SSDI in Massachussettes. Told by Administrative Law Judge that she is unAmerican "trying to take money from hard working Americans". She doesn't understand why the judge is persecuting, after the suffering it took to earn SSDI, but she refuses to allow further contact with SSA because "the judge told me I can't"
Changes name to Addie Lee at age 37 to honor Grandmother
Husband got Security Guard Jobs for Addie, where she just needed to sit behind a desk and check identification. This was an attempt to return to work, after SSA refused application for SSDI that she had worked so hard to earn. The Judge had said that she was trying to "take money from hard working Americans" and she wanted so badly to prove that she was a good citizen - after all the suffering it took her to have earned "20 quarters in a ten year period". Addie was a lot "harder working" than most of us!
Age 42 husband took government job to assure benefits. Gov't catastrophic Blue Cross plan, that doesn't cover catastrophic care! Addie's Security Guard jobs ended as soon as husband was no longer working for those employers. Since SSA refused to recognize the disease, discrimination by employer was just allowed
Mixing meals with milk to help swallow. Eating lots of Mac and Cheese to get food down. "Mechanical Food" does no good. Daytime sleep dominates life
Age 50 pulmonary distress becomes a daily fight. Personal physician still opposes use of the word "dystrophy" as taking away somehow from the "MDA kids". Trip to mother's funeral at age 51 results in need for a home oxygen generator continuously, and short term hospitalization for the increased heartbeat irregularity. Husband begs to have a pacemaker implanted, but doctors won't provide treatment if Addie says "No" plaintively. She repeatedly asks why she hasn't gotten her angiogram that she thinks the doctor keeps promising. The doctor schedules angiograms when the husband is present, but cancels when Addie plaintively asks why it's needed.
December 14-20, 2000 Addie has her 52nd birthday in the hospital, after calling 911 when she became unable to breath. She snapped right back when provided with oxygen and heart medicine. She is scolded by her attending doctor for having called 911 when she found herself alone and unable to breath. Husband was refused time off to care for her, despite having earned several weeks of leave for this purpose. Husband had been refused time off after his operation on his spine on November 20, 2000. Addie got hospice care for one month over Christmas 2000, but since her care was being threatened by her husband's employer to make him work during what should have been a period of recovery, Addie collapsed shortly after her Nursing prescription was ended by Dr. Fanous. Dr. Fanous gave Addie a lecture about the disease myotonia congenita, and how benign it is, shortly before her collapse in February, 2001 - and wouldn't listen when told that he was discussing a totally unrelated disease! Addie demanded to return to seeing her Dr. Cohen, who acknowledged her muscular dystrophy, even though prefering not to call it that - but she collapsed before she saw Dr. Cohen again
Age 52 February 20, 2001 five weeks of respiratory weening. After what should have been another short term hospitalization, except that doctors told her to come in two days later when she called about not being able to breath, the ambulance drivers thought she "looked so well" they forced her to walk to the ambulance despite an irregular heartrate of 300 showing torsade de pointe. The firemen agreed with each other that, since they didn't understand what they were seeing on the heart monitor, Addie should be treated as a "complainer" and refused to take her to Holy Cross Hospital immediately. When Addie arrived at Holy Cross the emergency doctor said she'd been without air for nearly 15 minutes. The pulmonologist at Holy Cross decided not to prepare for swelling and cramping when weening off the "vent" because she "doesn't have asthma". More unnecessary damage due to failure of doctors to look up this disease before "treating it"
After 5 weeks at Providence Holy Cross, Mission Hills, CA, with insulin resistant diabetes, kidney failure, infections, uncontrolled blood pressure and heartrate, and unable to eat, Addie transferred to Barlow Respiratory Hospital, Los Angeles, with gastrointestinal feeding to wean off the ventillator. After a week, transferred to St. Vincents, Los Angeles, for a week for angiogram and v-lead pacemaker. Pacemaker stabilizes (relatively) the heartrate below 100, and keeps blood pressure up - blood pressure still needs control to keep it down. Back to Barlow, she weans off the Vent in a couple weeks, but is unable to move herself despite strength in the normally tested muscles of shoulder and hip - she has no forearm or calf strength! But after 12 weeks in bed she's determined to be "no longer critical" and Blue Cross refuses to pay for any further care
May 18, 2001 North Valley Nursing Center is so frightening, with pulling off a big toenail the first day and every evaluation needing to be repeated and all rehab started over, that Addie becomes completely obsessive. Overcome with vertigo when things aren't "right" - "slipping off bed" when actually sitting firmly on side of bed, "playing with the trapeze" which isn't there anymore, "claustrophobic" if wheelchair isn't moving "as a wheeled chair should"
July 2001 CA Long Term Care Ombudsman needed to obtain minimal nursing care at North Valley. Vast improvements in feminine hygiene, and bedsore care. MDA Clinic finally scheduled at Cedars Sinai Los Angeles. Addie suffers through another diagnosis for myotonic dystrophy, so we can try to pressure Dr. Laaly to provide reasonable treatment for the right disease
MDA Clinic Questions
A MEMORIAL IN VETERANS PARK, SYLMAR, CA
With the Whales Now!
September 2001 Addie's pacer implant post-op finds that the v-lead essentially corrects the "myotonic heart" syndrome. Residual effects of NOT having had it implanted after her previous pulmonary collapse in 1983 continue to prevent a return to normal life. Addie "sees things" ever since her "near death experience", and mental state and imbalance limit her control of the MMD "noodle knees"
November 15, 2001 Addie's MMD cateracts appear, just four months after told that she "may have a cateract forming in the right eye, but not in the left." Addie is told that her eyes have been neglected by not having treatment for inability to close
December 2001 Addie is able to see her own doctor, by my driving her there myself, amid threats by the senior Rn at the Home that he'll call the police if I try to "remove her from care". Dr. Cohen asks that we excuse his colleagues, since MMD is so rare and they're just "tertiary care" - forgive physicians who hadn't bothered to tell Dr. Cohen of the diagnostic records sent him from Cedars Sinai and St. Vincent! But now he's got the records and schedules Addie for ophthalmologic treatment
December 2001 Addie is seen by Dr. Stiles, the Ophthalmologist that we've been trying to have her see since being tranfered back to our own neighborhood. Dr. Stiles schedules a January 3 surgery on the right eye (the worst eye is done first)
February 7, 2002 Dr. Stiles schedules surgery on the leftt eye. Addie does not tollerate even mild sedation, and is admitted to Northridge - where the admitting physician refuses to provide treatment for any of Addie's needs except treating for pneumonia and diabetes. He refuses to allow Addie access to her own physicians, and we have to take Addie home against medical advice (AMA) after she gets the cataract procedure on February 14. Addie comes home with severe toothaches and worse than when she went in
April 18, 2002 Addie is seen by the Dental Practice that has always treated her. The Dentist recommends Hospital Dentistry, since she can't cope with the complications Addie is sure to have. Dr. Cohen sends me off on a wild goose chase to find a Dental Surgeon who will treat Addie outside a hospital... told that Dental Surgeons pull teeth, they don't do reconstructive Dentistry. Addie goes on strict pain medication every six hours, from the "as needed" that she's been on. The Dentist wouldn't even provide an antibiotic, since she was refusing to treat Addie! After all the frightening dental "evaluations" we returned to Dr. Cohen, who took one look at the lesions that had developed while we were seeing Dentists, and said "she's got shingles!"
September 26, 2002 Addie got her electric wheelchair, finally. It would have been such a blessing if the Home had gotten it while she was recovering. Blue Shield bought it without protest when the doctor gave up on the wheelchair company the Home was "working with" and wrote out a new prescription. Now we just need to figure out how to transport her. We're not yet experienced in scheduling Vans. September 26, 2002 After Addie's eyes responded to our four times a day eyedrops, HEAVY eyedrops, Dr. Stiles became convinced that she should have another eye exam. The exam showed glaucoma developing in the left eye, and he did a LASER procedure today. October 2, 2002 Dr. Stiles is happy with the results of Addie's surgery. He took photos showing the ptosis in her left eyelid, and will now plan correction of that...
December 12, 2002 (Thursday) Dr. Stiles corrected the ptosis in Addie's left eyelid. Addie tolerated outpatient surgery real well... Saturday Addie had recurrence of involuntary motions as the medications used with the "local" anaesthetic wore off, but she sees out of that left eye again!
Addie is becoming real agitated because her husband's new supervisor is refusing to continue the accommodations, and even assistance that were finally available from the FDA District Office where he works. He is told that he must stop working from home, because Addie is there and will be a distraction. The written agreements to allow work from home, and necessary accommodation for timely response to an emergency call, are claimed to be "lost" when the former supervisor retired
Addie has an experienced home nurse, who will begin taking her to the doctor and out for walks in her wheelchair once we familiarize her with the nieghborhood. March 19, 2003 is the first doctor visit scheduled for morning with Ronnie at work. The new supervisor demands that Ronnie not leave work until calling the District Office and getting personal permission to respond to emergencies. After only 20 minutes trying to get permission, Ronnie rushed home. While on the way, he found out that Addie was put on Access Paratransit to go home. Addie was unable to keep food down, so she went to bed early. She seemd to be sleeping with little discomfort, but stopped breathing at about 7:50PM
March 20, 2003 Addie died in her sleep last night. She was "pronounced" at half past ten this morning, but she stopped breathing just after falling asleep last night - just before eight. We tried all night to get her back, but her vitals just continued to get weaker as the night and morning passed. Her love and kindness will be missed... The firemen had her back before leaving the house, but she got "typical" emergency room treatment (instead of reasonable), and her vascular system was paralized by four epinephrine shots before she even got to Intensive Care - nothing I said would get the ER Docs to call a specialist, or stop giving epinephrine shots, trying to made her "look normal". By the time they started a dopamine drip, it was too late. More to come: Administrative Actions are going forward against those who perpetrated this homicide.
May 21-22, 2003 Ronnie held meeting with USFDA concerning the activities of the Suprevisory Consumer Safety Officer who released incorrect medical information to his coworkers, resulting in her retaliation that led to Ronnie not being present at routine doctor's appointment in AM of 03/19/2003. Addie's traumatic response to that "abandonment" led to the improper transport to the County Hospital by the Los Angeles Fire Department Engine 91. FDA committed to once again brief supervisors that employees' personnel information must be held confidential... asserting that the release was "meant to improve productivity." More to come: SCSO Jonetta Collins' history of retaliation against employees who demand their Constitutional rights is becoming legend in FDA.
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