The day after I talked with a group of friends about how Lydia had wandered from her skilled nursing facility right after our last get together in December, they called to tell us they thought Lydia had a grand mal seizure and fallen, hitting her face on the edge of the bed and they sent her to the hospital to get CT scans and other tests. She was admitted to the hospital from the ER to get the seizures under better control.
Lydia–my brilliant and multi-lingual role model–earned a degree in chemistry and then an MBA in finance and marketing. She worked in Wealth Management in Beverley Hills, was active in professional marketing and financial associations, her alumni groups, fundraisers, Toastmasters, etc.
With her great love of art, culture and adventure, she had traveled around to many countries solo, but unfortunately, this disease has robbed her ability to process language both incoming and outbound. One often-misdiagnosed neurodegenerative disease, and her dreams of life are dashed.
It’s an education for people every single time we meet a medical professional. It’s often diagnosed as depression, bi-polar, schizophrenia, Alzheimer’s, mid-life crisis are often and the meds for those may hurt instead of helping in addition to wasting valuable time.
I want to help people avoid having to go through the hell Lydia has.
Even at this hospital, the 14 nurses and doctors were unfamiliar with the disease. This is not the first time we’ve seen that happen in the hospitals or other medical facilities she has been to, even after all the test results we take to EVERY facility when she gets shuffled through our “fractured medical system.”
Lydia’s diagnosing doctor is the chairman of TheAFTD.org Medical Advisory Council, and other doctors still don’t take advantage of his team’s experience and expertise.
Please help me help others avoid this terrible odyssey by raising awareness of this disease. Every little bit helps. Please spread the word to your networks of the AFTD’s 2017 With Love campaign. Any donation helps (especially with a $90,000 matching gift), but I really want to RAISE AWARENESS, and that’s how you can help.
For more info about Frontotemporal Degenration, please see TheAFTD.org