When sharing with people what my mom’s health challenge was they often didn’t know anything about LBD. I must admit, I didn’t either when I first heard the diagnoses from her neurologist at UCSF. When sitting with him to hear his feedback on all the tests he’d ran he told us, “don’t look this up, it’s a horror show.” Well, I had to look it up and indeed it sounded frightening. It’s essentially Alzheimers and Parkinson’s disease all rolled into one with a few extra shitty things thrown on top. Robin Williams, Ted Turner and Tom Seaver were all diagnosed with LBD. It’s often misdiagnosed which led to confusion when we received a second opinion saying that she had Alzheimers and not LBD. In truth, LBD is misdiagnosed a large majority of the time but ultimately you can’t know for sure what the disease is until your loved one passes and an autopsy is done. So many of these diagnoses are best guesses especially when it comes to LBD which accounts for 5% of all dementias second only to Alzheimers.

When researching and googling it’s important to understand that despite a list of symptoms that may occur your loved one is unique and not all will present. You also may feel confused and wonder what does that really mean and how does it apply to my loved one? It’s in hindsight that I can look back and say “ok, I get it now, I see the personality change.” When it’s happening you don’t understand that your mom saying to you “you’ll be ok, you’re smart, you’ll figure it out” and hang up the phone when she used to pour over every detail and offer stellar advice in what you should do next. You don’t realize yet that she’s changing and can’t process or engage in the same ways any longer. You just don’t realize it yet and neither does she.