No tricks, just treats.

“C’mon old lady, Were going to Nana’s!” I open the garage and watch as my three year old hunches over in her best Nana impression and shuffles to the car.

Nana wasn’t feeling well this week, she had a few panic attacks last week and has been needing an extra hand with some things. My daughter is used to spending almost everyday after daycare at Nana’s, so I wasn’t too surprised when she told me for Halloween she wanted to be her “Best Friend Nana”.

My little princess decided that she didn’t want to go trick or treating but instead wanted to take care of Nana.

“We are going to make Nana soup, and cuddle her in the warmer blankie. Aren’t we momma?” Sophie tells me.

“Is that all Nana does when you are sick?” I ask

“Also the sneezy papers and the minty”  she says as she straightens her dress in her lap. I giggle at her interpretations of tissues.

“The minty?” I repeat wondering if my mom gives her a vapor rub.

“Yea, in my favorite mug.” She confirms.

“Ohh, Mint tea.” I say

“Yes, the minty.” She simply restates.

As we pull up she climbs out of her car seat and shuffles up to the door. We usually just dart in but she knocks on the door and Nana’s caregiver, Analise lets us in.

“Oh Nana, I heard you were sick this week!” she climbs up to the couch where my mom is sitting and feels her head with the back of her hand.

“Why? are you the doctor?” My mom says perplexed.

“No mom, this is your Nana, she’s here to take care of you this evening and make you feel all better like you usually do for Sophie.” I tell her. She looks at me for an extra moment and then nods her head.

As my daughter shuffles around the house getting all her favorite items for my mother I watch in amusement. I’m full of utter admiration that on a holiday where my little one could dress up as anyone in the world like her favorite animal, a princess, or a character from TV. She chose to be my mom. Someone I have always strived to be like.

My mom, who has trouble remembering who this little kid running around her house is half the time inspired Sophie so much she completely forgot about the candy.

I pour a bag of M&M’s into the sugar cookie dough I just made, and scoop out dollops at a time onto the cookie tray.  It’s my little treat for her huge heart.


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Spending time by myself gives me the exclusive freedom to make my own choices without necessarily  affecting other people directly. I sincerely notice my seizure symptoms worsen when I’m experiencing other people’s discomfort, high energy or depression. My tools for emotional detachment is to physically remove myself from the situation, followed by logical rationalization of the situation, and then forgiving myself for consistently having to excuse myself from society.

I consciously seclude myself from other people out acceptance that I might unconsciously and publicly embarrass or hurt myself. I try to surround myself with people who want to see me succeed and also know how to help me in an emergency; this means ending unhealthy relationships and showing appreciation to those who consistently help me be a better person.

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The Calm Before The Storm


Living with an invisible disease often adds an unfortunate layer of invisibility to the patient; from forgetting triggers when you’re finally present enough to enjoy life, to the hospital you woke up in (after 3 grand mal seizures in 45 minutes) sending you a bill for the ambulance because they felt it wasn’t a necessary call.

The misunderstanding of invisible diseases is just that; they aren’t recognized until it is too late. Loved ones will cut you out of their lives, while new experiences will lead to lessons and recognition of reality on a new level. After experiencing sickness on such a violent level, my only goal in life at the moment is to remain as calm, happy and stress-free as possible. I now sincerely try to avoid large crowds, though recognize when it is safe and worthwhile to enter bigger cities. I now put my work laptop away when I have been looking at it for too long, though deal with pressing issues as they arise. I now speak out when I’m in a stressful situation, and leave when I start feeling ‘funny’, and I try to only surround myself with people who care about my well-being.

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Blessing in Disguise

Lewy Body Dementia has a unique characteristic where periodically for what seems like a completely random moment your loved one will appear to be fully aware of themselves.

As a Nurse a in a hospice facility I get to witness a lot of  “Goodbyes”.  While there are often moments of clarity in the last stages of life, the sporadic moments of alertness seen in patients with LBD are remarkable.

Last April, there was a small family of three with the father a bedridden man, Brady, whom I very much enjoyed.  Brady had a daughter, Charlotte, in her late forties and a son who was around fifty five. The son was severely Autistic and it seemed that Charlotte had always been his primary caregiver. One night she was sobbing at Brady’s bedside praying for help with what to do. Brady’s health was withering fast in his last few months.

 I was never too far when he’d blush and apologize for something he’d done or said during a hysteric episode. I’d smile and just nod most times, but there’s a look in these patients eyes. It’s like a light is on, like you know they know what they are saying. I spoke about these moments with my colleagues that validated these feelings. I just could never tell the families of my patients. How unfair would that be? I, only the nurse, would get these last special moments.

But that night in April I got to witness a blessing in disguise, where Brady put his hand on his crying daughter’s head and said

“I’m so proud of you Char, and it’s time to let me go.” He looked over at his sleeping son sprawled out on the chair by the window. “He won’t be as strong as you are in the end.” I was adjusting Brady’s medications so he fell into a quick slumber just moments after. However, it was as clear as day that Brady knew what he was saying, as well as knew who the people in his room were.

That was the last time I saw them, Brady passed away about 6 days later.

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Medicine Monday: Baby Steps

If I told you there would be a cure for Dementia tomorrow, I’d be lying. However, there are medical breakthroughs every day. To get to the solution we have to breakdown every part of every open question. The Wexner Medical center at Ohio State University is doing just that.

 Lewy Body Dementia is typically misdiagnosed for other types of dementia. This can send patients down the wrong treatment and pharmaceutical path for years. Dr. Douglas Scharre, director of the division of cognitive neurology at Ohio State’s Wexner Medical Center and principal investigator of the study, and team just published in the Journal of Alzheimer’s Disease. Their research compared 21 patients with Lewy Body Dementia, and 21 patients with Alzheimer’s disease, and 21 patients with Parkinson’s, finding clinical differences which characterize a specific cognitive profile and body inhibitions amongst all three groups.

With teams like this, we are asking the right questions and providing support to the Doctors faced to make these difficult diagnoses.

Tomorrow isn’t here yet, but we are making baby steps in the right direction.

Journal Reference:

Douglas W. Scharre, Shu-Ing Chang, Haikady N. Nagaraja, Ariane Park, Anahita Adeli, Punit Agrawal, Anne Kloos, Deb Kegelmeyer, Shannon Linder, Nora Fritz, Sandra K. Kostyk, Maria Kataki. Paired Studies Comparing Clinical Profiles of Lewy Body Dementia with Alzheimer’s and Parkinson’s Diseases. Journal of Alzheimer’s Disease, 2016; DOI:10.3233/JAD-160384