I am not a doctor. I am providing information based on experiences that my mom has with natural remedies. The purpose of this blog is to help folks to educate themselves. Use this information with your own discernment.

13 August 2010

Who Is Lewy Anyway?

Lewy Bodies Dementia is the most misdiagnosed form of dementia.   From my experience, doctors have no idea what it is and if they do have an idea, their eyes glaze over whenever I suggest that I believe that they've misdiagnosed my mom.

She doesn't have Alzheimer's as they've diagnosed, not as far as I'm concerned; following I will tell you why I believe my mom has Lewy Bodies in her brain.

I live with her and see the changes that occur.  One minute she can appear fine and the next minute she has her eyes closed while talking about wild hallucinations that she demands an explanation from me.   She has Parkinson symptoms.  She loses her balance and rarely can find words to express what's on her mind.

One minute she will be alert and laughing with no warning she becomes stupefied, sitting in her chair, mouth open and leaning to the left.  She can't walk without needing to hold on to something, she can't figure out how to open the door, she doesn't know who I am, she is trapped inside the world in her mind.

Drugs, all drugs cause her to have scary hallucinations, hallucinations that caused her to dial 911 one night at 2am.  To my horror I was woken by a police officer in my bedroom as he shined a flash light in my eyes, "Mame, this is the police."  Horrifying is the only word that I can use to describe the feeling that came over me.  I felt like my privacy was violated... well, it was!

Food.  Processed food, wheat and dairy products cause her troubles.  Food that raises her blood sugar fast, simple carbohydrates, are all very bad for her mental state of being.  White food is another friend of Lewy, bringing him out from hiding, creating disturbances that put him front and center.  It's scary for my mom.  It's frightening for people around her, especially folks that don't know what to expect.  Sometimes I have no idea what's going on or what to expect, but I'm learning about Lewy.

On Wednesday, after my mom came home from the Day Care Program that we've enrolled her in, my mom was lethargic.  Cheryl was a little concerned, she couldn't believe how fast my mom went from being alert to not having the ability to keep her eyes open.  Hallucinations are always more intense when my mom is tired, she was tired after the day program.

I've made observations for nearly 2 years.  Food matters when it comes to my mom's happiness.  Living food, live food like fresh vegetables in a salad, help us to have more good days.  Sleep is important too.  I know that she has trouble distinguishing between day and night when she has dairy before bed or any simple carbohydrates.  Ashwagandha helps her insomnia, it provides her restful sleep which contributes to good days.  Phosphyltidal Choline in her oatmeal every morning helps her a lot, giving her more good days...  it's similar to the Excelon patch, only with no side effects.

Who is Lewy?  It's a mean and nasty neurological disorder, a disorder that lots of people have but don't know it.   From my understanding, it comes on suddenly; poor nutrition, uncontrolled blood sugar, blood pressure and cholesterol creating the perfect scenario for a future with Lewy.  I also believe that the foods that we consume, foods that we believe are safe are the biggest culprits to lead us down Lewy Lane.

Lewy sucks, coming on strong, making life very difficult for all in the vicinity of the demented patient.  Care Giver stress is elevated when Lewy is around, mostly because we have no idea if it's going to pass or if it's the new "normal" for our patient.  Drugs don't work.  The only things that seem to work to calm my mom are Homeopathic Remedies that are prescribed by our Naturopath Doctor.

Hyoscyamus is the remedy that I give her when she is confused and wants to "go home."  A little drink of the homeopathic and within 15 minutes she is calm and realizes that she is already home.

Who is Lewy Anyway?  A visitor that makes the hair on the back of my neck stand on end.  However, Lewy provides opportunities for me to grow and learn, this disease named  Lewy destroys lives, he destroys families and does whatever he can to drive everyone mad.

It's a freakish ride that we are on, never knowing what each day will bring.  Lewy has taught me to take one minute at a time, reminding me that NOW is all that matters.

A new report is out New Report Highlights Delayed Diagnosis and Care Giver Burden in Lewy Bodies Dementias

October 10 - 16th is the Lewy Bodies Dementia Association Awareness Week.   It's up to us, the Care Givers to help our wards and the only way we can do it is to educate ourselves.  Pay attention to changes.  Speak up and question everything.


  1. Your mom's change after coming home from her adult day care could be what they call "showtime." We've experienced that many times. It seems like the person works so hard to seem OK sometimes, and it wipes them out. It would happen anytime there was someone new around or someone my FIL hadn't seen for awhile. He'd be knocked out for a couple of days after an episode.

    Definitely quite a roller coaster ride. Hang in there, keep writing, that's a great way to help yourself and others. Take care.

  2. Thanks Lisa... I think it's called Sundowning. It does seem to last awhile. Today she had acupuncture, it seemed to help her almost immediately. Her frowning face was all smiles after the treatment.