Sandy’s Story

Site created on February 10, 2020

Today was a tough day the words the doctor said were Lewy Body Dementia. My mom has been through a lot the last three years and that tough road just Got tougher. I am no longer on Facebook but you may contact me via email at Today is a processing day mom under stood the words that were said but then later said what did the doctors say.. love and prayers are needed thank you

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Journal entry by Melissa Sexton

Today I wanted to just recap on how we got to this point a backstory .

August 16 2016 Sandy had a massive stroke damaging 5 areas of her brain. She recovered and was able to walk talk and do most things after a few months of therapy. May of 2018 she had major back surgery which caused another stoke and extreme delirium . I started noticing disturbing signs of neurological problems. She developed tremors right away , cognitively she had a lot of setbacks, and she became very childlike. After two years of testing and different doctors I took mom to a different neurologist that saw what I saw... and we finally got the news of Dementia with Lewy Body . Mom was having auditory hallucinations, extreme sleepiness,unable to maintain any house work ,mail, or finances, lots of anxiety, and forgetting what day or time it was. This was heartbreaking to watch she worked hard to be a nurse and she was a very good nurse.

Lewy Body Dementia differs from Alzheimer’s it tends to be a faster decline and shorter life span. It is also the second most diagnosed type of dementia that gets misdiagnosed the most. A lot of times in the early stages it’s diagnoised as Parkinson’s do to the tremors it causes.

My mom is losing the ability to write legibly Her handwriting is very small she struggles to hold a pen. She is able to still tell us what she needs she can still walk and feed herself but as this disease progresses those things will no longer be something she can do. 

I hope by putting this bit of information out that someone can use it to help there loved one maybe sooner in the early stages of this. Diagnosis is key to getting the proper help and medicine for Lewy Body Dementia . Their is no cure for this and most people live 2-5 years .we are probably on year 4 of this journey but their is no way of really knowing . Did this start before her first stroke or did the stroke cause the brain to start building up these proteins in the cells that steal a persons mind. 

The reality is time is precious ,with this nothing is guaranteed ,and the outcome is the same the person will die with this. The complications that come with Lewy body are swallowing issues, ridged muscles that cause a person not to be able to move on their own or at all, extreme memory loss not knowing how to feed oneself, not recognizing what food is or people ,falling if they can still move.

If you have a loved one with some of these red flags please seek out a neurologist that specializes in Dementia. It’s key to giving the person quality of life. 

Thank you for taking the time to read a little bit of what mom has had to endure the past four and a half years. It has been an extremely hard road. All I want for her is peace and for her mind not to be locked up in confusion,for her to be free.


Again mom is in memory care at Wealshire of Bloomington in Minnesota she loves getting cards ,

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