Blood isn’t thicker than water

Receiving a diagnosis of EOALZ, around age 46- wasn't a surprise- because I could tell I was having difficulty with memory, balance, and I was hearing & seeing things. The problem with my diagnosis was that it was wrong. Partly because after speaking with my neurologist about my symptoms- after testing & such- she said sarcastically," well you're not seeing things are you?"- so I was too embarrassed to tell anyone- including my husband. My anxiety & depression grew- and I went from being a strong person who never took an aspirin to one having night terrors & very dark thoughts. After moving & seeing a new neurologist- I spoke up & admitted to the hallucinations- for some reason it was so embarrassing for me to admit. But then she changed my diagnosis to Lewy Body- which I had never heard of. I think I was about 48 years old. The good news is that medication has improved my quality of life. The LBDA.org website was such a valuable source of information. And the best part is that I've met incredible people online with Lewy Body that I'm able to commiserate with! As far as the "Blood is not thicker than water" title? I found incredible strength from strangers- now friends- with dementia- not from family. I've learned that my family, like many, can't understand what we are dealing with. Thank God for online support.


Susan Maroulis

Aug 16, 2016