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The truth is you have no idea what a phucking horrible disease this is until you are touched personally by Alzheimer’s. I have been her caregiver and experienced my Aunt Jane’s battle first hand as her disease has advanced from moderate to advanced Alzheimer’s disease. I watched her, the super passionate artist who once re-created, Georgia O’Keeffe paintings to scale, lose her passion for painting as well as the ability to write her own name.
See that’s the thing about this disease, it hijacks more than a person’s memory. Alzheimer’s disease robbed my aunt of the ability to perform the most basic functions. After Aunt Jane’s official diagnose in 2012, things were pretty normal, aside from the incessant asking of the same question or forgetting you have 20 Philadelphia cream cheeses in the refrigerator. Things progressed very slowly until her husband passed away. Most Alzheimer’s patients respond poorly to significant change or transition, it causes even more confusion to an already blocked and confused mind. She asked numerous times where he was while she watched his casket sink into the ground. We soon realized that to Aunt Jane, Arnold would forever be, “in the hospital”. Aunt Jane eventually stopped asking about him while making a new home at a Memory Care facility in Naples, Fl. Aggression and agitation are common symptoms of Alzheimer’s disease. Aunt Jane also lost the ability to communicate her feelings or able to let someone know she is in pain. These days, in between her bouts of crying, you see she also has developed PulBulbar affect, or PBA, a condition in which one has no control over the urge to cry or laugh. Aunt Jane cries, there is hope though, there is a new medication which has successfully slowed the symptoms of PBA like the uncontrollable crying. I am hopeful for her to find some peace. She still is herself deep down. She still tells me to stop talking! There is one thing that Alzheimer’s can’t steal, that’s love, it’s a feeling which is about the only thing this phucking disease leaves you with.
Chances are someone close to you will be effected by Alzheimer’s. In 2016 there were more than 5 million Americans with ALZ. By 2050, an estimated 16 million Americans will be effected. Every 66 seconds someone in the USA develops ALZ.
However, in the intense political competition for federal dollars, other diseases come out far ahead of Alzheimer's. Washington has committed some $5.4 billion this fiscal year to cancer research, about $1.2 billion to heart disease and $3 billion to research on HIV/AIDS. Research funding for Alzheimer's will reach only about $566 million.
Research into finding a way to stop the progression of the disease can save our country trillions of dollars over the coming decades. And curing or controlling this nightmare illness is no longer a dream – and certainly not a waste of our precious medical research funds.
Please join me to help raise awareness so this devastating disease gets the funding it deserves.
Make a donation. No donation is too big or too small. Then join me by doing something you love on June 21st, The Longest Day.
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