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Because hope matters

October 22, 2009 - Linda Lobeck
It seems like every month certain causes are brought to our attention to raise awareness for things like leukemia, breast cancer, domestic violence, and Alzheimer's disease. Awareness is half the battle and puts these very important issues into the limelight. October is also an awareness month for two rare diseases — PSP and CBD — both diseases that my mother was diagnosed with more than four years ago. Both diseases led to her death in August at the age of 71. Until she received her "official" diagnosis at the Mayo Clinic and we had a name for what was going on with her, I had never heard of these diseases. Thank goodness we had the care of Dr. Barry Johnson locally to guide us through the continual changes in my mom's condition. PSP is Progressive Supranuclear Palsy, a neurodegenerative brain disease with no known cause, treatment or cure. It is often misdiagnosed as Parkinson's disease because of the general slowing of movement. It affects the nerve cells that control walking, balance, mobility, vision, speech and swallowing. The odds of getting this disease are 5-6 people for every 100,000. Symptoms begin usually when a person is in their early 60s. But this disease has no known geographical , occupational or racial preference. Like my mom, people with PSP eventually are wheelchair bound or bedridden. The survival rate is 6-10 years after the initial symptoms occur, but this time was shorter for my mom. The other disease is CBD or Corticobasal Degeneration, another rare neurological disease in which parts of the brain deteriorate or degenerate. Causes of CBD are also unknown and symptoms usually begin after age 60. Initial symptoms are often stiffness, shakiness, jerkiness, slowness and clumsiness in either the upper or lower extremities. The stiffness pretty much took over my mom's one side with her arm and leg, but gradually moved to the other side. She had walking and balance difficulties early on when we weren't sure what was going on with her. A person with CBD will usually become immobile due to rigidity within five years of the onset of the disease. Today, I received an e-mail and I was ready to delete it as junk mail like so many others. But then I saw the words, "CurePSP/CBD" and had to open it up. What I found out was that CurePSP is a foundation for PSP/CBD and related brain disorders and is located in Hunt Valley, Md. The mission of CurePSP is to "increase awareness of progressive supranuclear palsy, corticobasal degeneration and related brain diseases; fund research toward cure and prevention; educate health care professionals and provide support, information and hope for affected persons and their families." The website for CurePSP is at "Because hope matters," is the theme behind the foundation and I hope a cure can be found as well as discovering how to prevent someone from going through what my mother did. She gradually had to give up her independence — going from using a cane, to a walker, a wheelchair and being bedridden. But as my sister said during my mom's funeral, "when life gave her lemons, she made lemonade!" Let's hope that research will somehow lead to cures for so many fatal diseases — hope does matter!


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