Frontotemporal Dementia

I am not the kind of girl

yes, at 55 I am allowed to call myself a girl

I would love to be referred to as a lady

but somehow I don't think I fit that description

sorry, I digress

I am not the kind of girl who looks at the glass as half empty

I am also not a cock-eyed optimist

I choose to look at the facts presented to me

process them

manage the ones I can

move forward

putting one foot in front of the other

I try hard not to focus on

the "what if's", or "why us's"

It is what it is

There are blessings in each day

I try to find them

I smile

Occasionally I am faking it

but it usually works

and I see something to smile about

Living with Frontotemporal Dementia

challenges me each day

This past week Kenny had a seizure

Seizures and FTD are not common

but not uncommon

as the disease moves toward the end stages

His symptoms

post seizure

were almost stroke-like

His eyes lost their twinkle

his voice did not have it's normal charming lilt

he did not smile

I thought I had lost him.

FTD has no roadmap

Each person's journey is his or her own

so there is no way for us to plan

We know the averages

life expectancy

but that's all

There is no

if this happens

then this will happen next

It's sort of like real life

We don't really know

What I do know

is this

I am not ready

to say

good bye

to this man.

My Valentine

~

I love thee to the depth and breadth and height my soul can reach

Elizabeth Barrett Browning

photo taken week of

October 3, 1981

Elbow Beach Club

amazing honeymoon

photo taken by cheryl sparks

on the island of

Corfu, Greece

Through the Looking Glass

When discussing our husbands

a friend suggested that

living with Frontotemporal Demetial

is much like living Alice's adventures

Things are not what they appear to be

Unless they are

I look at my husband

He is as handsome as the day I met him

I look closer

It is not him

I listen

His voice is the same

I listen closer

I do not understand

It is not him

It is the disease speaking

He kisses my nose

He kisses my shoulder

It is my Kenny

I treasure those moments

They give me strength

All I really need is love,

but a little chocolate now and then doesn't hurt!

Lucy Van Pelt in Peanuts by Charles M. Schulz

photo by cheryl sparks

Starbucks

Salted Caramel Hot Chocolate

All of your cravings

satisfied

in a single

sip

Holy Haberdashery, Batman!!

This is my new closet!

Our new closet,

but really,

it's mine!

I would like you to know, as I have said

Kenny and his brother

built the main house.

Hammers, nails,

bricks and mortar.

Everything.

This addition we have done is something we never planned to do.

Who plans to have an illness in their family?

A first floor

bedroom,

bathroom,

CLOSET

seemed to be the way to go.

Having first built a colonial restoration

all of the closets in my house

could fit in this closet!

I

may

never

come

out

of

the

closet

!

I'm just saying!

Love this!

photo by cheryl sparks

photo by cheryl sparks

Our Trip to Egypt

We were tourists. Visitors in a land very different from ours.

It was a dream come true in many ways. We were going to see the pyramids.

Our reasons were not a dream come true.

Kenny had been diagnosed with Frontotemporal Dementia.

Our neurologist and neuropsychologist both said that if we were able, we should travel.... soon.

I made a decision that cruising would be simple. Sort of like a traveling hotel.

We had a wonderful time.

Met amazing people.

One couple we have even stayed in touch with.

I digress.

Egypt

The traffic

YIKES!!

Makes Boston look like the suburbs.

Our arrival to Giza was eye opening for me.

The juxtaposition of the man and the donkey with the oil rigs was stunning.

The children were beyond beautiful.

I have no pictures of them... they were all over us, trying to get money.... and boy were they good.

I forget how much a picture was! (too much)

The pyramids

...smaller than I thought they would be.

I don't know why.

I mean they were built by hand.... and they are still standing.

I still thought they would be enormous.

The sphinx was having work done.... a nose job, I think..... ;)

And then there were the camels.....

We were told that there would be a special place where the camels and their owners could be trusted.

Clearly, we were not listening

Kenny found one he liked, and decided to hop on up.

I stood near one.

The smell was incredible.

Pictures were taken.

Monies were to be exchanged.... misunderstandings were to be had.

Off the camel, Kenny and the camel man went... and I flipped off my shoes and chased them.

Oh, yes I did.

Finally, they stopped, Kenny jumped off, and we ran back to the group.

I have absolutely no idea how much money I ended giving this man..... I just wanted to get my man back!!!!

As I watch the news this week,

I am thankful we were able to spend time in Egypt,

but feel so blessed to live in this country.