Alzheimer's Misunderstood Cousin...

While Alzheimer’s is constantly at the forefront of the health care industry and the media, there is another far less “famous” type of brain disease, called Frontotemporal Dementia, often misdiagnosed as Alzheimer’s or misdiagnosed period. I’d certainly never heard of it and it obviously wasn’t on the minds of many of our doctors, as we went through a seemingly endless quest to determine what was wrong with my mother. We were told everything from Alzheimer’s to grieving to Hydrocephalus (better known as water on the brain). One doctor actually wanted to put a shunt in her head to drain it… My mother was an amazing woman…strikingly beautiful in a Liz Taylor kind of way, talented and gifted, and possessing a strong, resilient personality. She was someone who had suffered a great deal of loss in her life: losing her only brother in World War II and then her husband, my father, who died of a sudden heart attack at the ripe old age of 37. There she was, left with two children (that would be me at 10 years old and my brother at 7) and no paying job. rnBut, after my father died, my mother reinvented herself. She started an interior design business, which became very successful to the point where she was asked to be on the Architectural Commission for the City of Beverly Hills. And, her second husband turned out to be the great love of her life and a fantastic father to us. All was well with her world…until he started to get sick…a lot. rnMy dad suffered from a variety of illnesses: Melanoma Cancer, Myasthenia Gravis (often compared to Multiple Sclerosis) and Leukemia. He fought each disease until he simply couldn’t fight any more…talk about a trooper. And through it all was my ever-strong mother, caring for him in ways only she knew how. But, when he finally succumbed to the Leukemia, something changed in my mother… almost immediately. rnWhen my stepfather died, I was already married and had two children of my own. I invited my mom to stay with us after the funeral for a few days, so she wouldn’t have to be alone right away. I knew that she would quickly pick herself up, start traveling and partying with all her widow friends and life would be good for her again. But, after several weeks, we couldn’t get her to leave my house. People kept telling me she was grieving, but I knew better. Something was incredibly wrong. rnFinally, after many misdiagnoses, she was diagnosed correctly with Frontotemporal Dementia, similar to Alzheimer’s, but affecting the frontal and temporal lobes of the brain, the areas generally associated with personality, behavior and language.Doctors said that her final years would be very similar to an Alzheimer’s patient…that “they all end up the same.” It was devastating. How could this happen to someone so vibrant?! rnI never got my mother back as I had known her and watched her deteriorate through different stages for eight long years. There was the OCD phase, where she would use toilet paper rolls exactly half way down and then pile them up on the toilet. Or, she would eat the same thing every day: exactly half a croissant and half a cup of coffee, storing the leftovers in neat rows in a cabinet for us to discover weeks later in horror. There was the hitting stage, where she would hit me and then giggle about it like a child. Then there was the memory loss, inability to speak and then nothing…where she laid curled up in bed in a fetal position, staring blankly. I was with her when she finally passed away…telling her it was okay to go. Now, I would give anything to have the hitting and OCD back. At least, I could still have a conversation with her. rnWhen my brother, Dan, and I came up with the concept for the “I’m Tired of…” bracelet campaign, which raises money for important causes, like Alzheimer’s and Dementia, it was driven by several factors, one of the strongest being our own personal experiences with disease…a father lost to heart disease, a stepfather lost to many diseases and, finally, a mother lost to this obscure Dementia, perhaps the greatest motivator of all. My intent is to raise awareness and help to find a cure, so others don’t have to tell a story like mine.