About Me

  • Gender Female
  • Age 65
  • Relationship Domestic Partners / Common Law

My Story 0 Appreciate this

My sister has MS. Unknown to her at the time, she was exposed to a toxic soup of Monsanto chemicals, including Agent Orange, when she was stationed at Ft. Sam McClellan, Georgia in the mid-1970s, shortly after she graduated from high school. Her health problems started shortly after as reproductive issues, and both she and her children have had health issues that can also be related to this exposure and the changes in her DNA that it caused since then. Since she was unaware of that exposure until recently, she just thought she drew the short straw of the family gene pool when it came to her health. Then, in 2011, she developed chronic lymphocytic leukemia - a leukemia that is most common in people in their late-60s/early 70s with no cause. When you get it younger than that, it's presumptive for exposure to Agent Orange. Then came heart disease, fibromyalgia, "mystery" nerve damage (including damage to her left optic nerve which has left her blind in one eye), dementia-like symptoms that she and her doctors believed were related to some "minor" strokes, and COPD (she is on oxygen 24/7). Her doctors have determined that these are all likely results of that exposure. I'm not sure when she started experiencing muscle weakness, losing her balance and falling down; perhaps as long as 2-3 years ago. She blamed it on the strokes. She moved to Florida last year, as her doctors told her the cold, dry air in Oregon was making the COPD much worse and she had a life-long friend who lived there. When she started building a new medical team, her neurologist said he wanted to test her for MS. She told him it was a waste of time, that it had already been ruled out in Oregon. Nevertheless, he insted and she acquiesced. She was diagnosed in October. She loses her balance. Her legs are weak. Her reflexes that would normally catch her if she loses her balance to the rear left are non-existent, so she has near misses, and sometimes she falls. Words fail her. She tells me she knows the word, she can "see it in her mind's eye," but it's like she just can't make it leave her brain and come out of her mouth. She loses track in conversations. After her latest hospitalization, her insurance company refused to cover a stay in an MS-specialized rehab, claiming that she didn't need that level of occupational and physical therapy in order to just live at home safely. She can't start taking any medication for the MS until she leaves rehab, because they're not licensed to administer it. And she's been told that when she's able to start them, her MS meds will likely cause her leukemia to return. The VA says that "Although exposures to high levels of these compounds [radioactive compounds, chemical warfare agents, airborne polychlorinated biphenyls (PCBs) and Agent Orange] have been shown to cause a variety of adverse health effects in humans and laboratory animals, there is no evidence of exposures of this magnitude having occurred at Fort McClellan. There are currently no adverse health conditions associated with service at Fort McClellan." So she is not eligible for any VA health care benefits. She has Medicare and a low-cost Medicare supplement with high co-pays and deductibles, and doesn't qualify for Medicaid in Florida. So she goes without treatments and prescriptions that aren't covered. I live in California and feel completely helpless. She lives alone. How will she take a bath or shower safely when she gets out of rehab? How will she navigate safely from her livingroom to her bedroom? What if she forgets she put water on to boil for tea, or hard-boiled eggs? She has a cane and a walker for home, and a friend got her a wheelchair for when she goes out with friends. She has friends who are nearby and can come in to help, although not regularly, and none are able to take her in. Her children are in Pennsylvania and Minnesota, and her sisters are in California and Oregon. Her social security and disability are not enough for her to move into assisted living, and her kids can't bring her home with them until her son retires from the National Guard in 2 years. So she's alone. I live paycheck to paycheck, I have to work so can't travel. She will be living alone for at least two more years until she can move in with her son's family. I'm scared and angry. I'm hoping joining this community will help me direct those energy-draining, destructive feelings into something constructive for my sister, my family, and others.

Interests

Living Well with MS Emotional support, Insurance and money matters, Healthcare, Mobility and accessibility
Getting Involved Walk MS, Volunteering
Research Research news
Hobbies and other interestsPhotography, music (I sing in two barbershop harmony choruses)

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