Lewy Body Dementia Awareness Week

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This is an emotional post for me to write. How do I talk about this? How do I detach myself long enough to educate people about this devastating disease that is now insinuating it itself into my life and even more so, my parents' lives?

For most people who have known my dad for a long time, they will identify with him as being gregarious, active, vital and genuine and I hope this is how they will always think of him.

About four and a half years ago, my mom started noticing that my dad was having some memory issues. She wasn't the only one. People at his job had noticed too so it needed to be checked out. Not too long after that, he began to develop some movement difficulties. My Dad was referred to a neurologist and was diagnosed with Parkinson's Disease.

For the next while his condition was treated as Parkinson's with medicine for movement disorders and he also took a medicine to slow the memory problems. It was suggested that he retire from his job as he worked around high voltages as an electrician for the local electric company.

In early Spring , my mother started noticing some major changes in Dad. This was during a major trip they'd taken to Australia earlier in the year. He was more often confused, his movement had slowed even more and he was at times "seeing things" that were either not there or his brain was mis-identifying objects. The symptoms worsened once they were home.

Mom was dissatisfied with the doctor that was tending to Dad's "Parkinson's". His bedside manner was undesirable and he was ONLY treating the movement disorder. She came into contact with the Senior Mental Health chapter near her and they arranged for an in home evaluation and a following meeting with the psychiatrist.

It was determined that Dad has Dementia with Lewy Bodies. He is 69 years old.

Most people hear the word "dementia" and automatically think of Alzheimer's, but this particular dementia differs from Alzheimer's in that it includes hallucinations and due to the movement disorder, falls. It differs because the patient can phase in and out of certain symptoms. That is to say, one day the patient may forget how to do something and the next day they may not. It also brings with it a bouquet of other issues, such as REM sleep disorder, excessive daytime sleepiness and restless leg syndrome. All of these things can have occurred before the actual diagnosis.

Lewy Body Dementia usually has a rapid progression and there is no cure for it. Commonly misdiagnosed as Parkinson's Disease, it used to be considered rare. It no longer is as it may potentially be the second most common subtype of dementia after Alzheimer's.

Because DLB has no cure, it gradually renders people incapable of tending to their own needs. Caregiving is thus very important and must be carefully managed over the course of the disease. Caring for people with DLB involves adapting the home environment, schedule, activities, and communications to accommodate declining cognitive skills and parkinsonian symptoms.

My goal at this time is to support my parents as much as I possibly can, both physically and emotionally and to educate people about this disease. Hug someone you love today because you never know what tomorrow may bring.


The Lewy Body Dementia Association has a full, comprehensive website devoted to this disease and have launched their awareness week today, running until October 16th.

So. Excited.

Tomorrow I get to meet this lady. I am bursting at the seams with excitement! There will be more about this after the weekend. I promise.

The Graduate

I didn't expect to get so emotional at Hannah's high school graduation ceremony last night, but when they presented the Class of 2009, my eyes welled up and my face got all wobbly as I tried to contain myself. It really hit me. This beautiful creature that I seemingly just birthed yesterday is now on the cusp of adulthood. Striding across the stage in her four inch heels, towering above most of her classmates, I felt a strange mixture of emotions; sadness, pride, appreciation that I have had the privilege of getting her this far (not without the help of others) and honour in knowing her at all.



Hannah and I had a rough start to her life. I was not much older than she is now when I gave birth to her. Without beleaguering the point, her biological donor and I split up when I was 8 months pregnant. It was one of the most stressful times in my life and I do believe she saved my life. At night, when my emotions would get the better of me, she'd move around in my belly as though to say "it's okay mom, I'm here" and then she'd grow very still, calm. She was, is and always will be the first true love of my life. This is not the same love you feel for your own parents, or your siblings or your spouse. It goes so much deeper because she is a part of me. She shares half the same chromosomes as me (well, so does my twin but that's different!) Without the unconditional support of my parents and siblings, I would not have made it through the first year of Hannah's life on my own. I am forever grateful to them. She shares very special bonds with her grandparents and her aunts and uncles.



As Hannah began to change and grow, I vowed to myself that she would be an independent person and be self-reliant. She has more than exceeded my expectations. She became a sweet personality, eager to please and fun to be around. She shares my quirky sense of humour and sometimes only a phrase ("Razzle Dazzle") will set us to giggles. I can recall her being about two or three and holding a flashlight under her chin, saying "I'm the lepterchaun" in her most menacing voice. That memory will always make me smile!



I could not have asked for a better child to raise for the first time. Everyone she touches tells me how much they love her and how kind and sweet she is. People loved having her for sleepovers because she was well-behaved and respectful. She is playful, energetic and fun. She has a compassionate heart and a strong mind. She has always acted much older than her age and while I think that may be because of her early circumstances, it is not a bad trait to have.



She will be attending University on the other side of the country come September. I don't know how I will endure her being that far away, not able to rush to her side for any perceived crisis or thing, or just to hang out. My heart scrinches up whenever I think about it. I think I'll wait until that time before I get too freaked out.

For now, brimming with pride, I'll just sit back and admire the woman she is becoming and envision what the future holds for her.

Hannah, I love you my baby, my beautiful girl. I'll always be here for you.

Snow

Snow
It won't be long before we'll all be there with snow
Snow
I want to wash my hands, my face and hair with snow

Snow
I long to clear a path and lift a spade of snow
Snow
Oh, to see a great big man entirely made of snow

Where it's snowing
All winter through
That's where I want to be
Snowball throwing
That's what I'll do
How I'm longing to ski
Through the snow-oh-oh-oh-oh

Last night I went for a walk with my neighbour and friend. It was past 8 o'clock and most people were hunkered down for the evening. It was considerably warmer than the previous two days, evidenced by the fact that it had snowed the better part of the day. Big, fat, fluffy flakes that went on and on. Decorated houses shone brightly and the air was relatively still. It was magical.

I know I often wax poetic about the autumn, but last night was the perfect winter night to be out, enjoying someone's company and enjoying the crisp air. I could have walked on forever, but I'm glad it was only an hour and a half - my legs were quite stiff this morning! I returned to my love and spent a quiet evening with him in our cozy living room.

I felt giddy again this morning as the packed snow crunched and squeaked beneath my boots. I don't know why I love snow so much. I don't care to be out in it much; I used to ski but gave that up ages ago; I don't really like to be cold. I suppose it is because there is just something so cleansing about it. For a brief time the city is covered under a blanket of pure white. And here in this city, one has to take advantage of it because all too soon the wicked rain appears and turns the city back to dismal grey.

Today it is much colder again, but I hear tell we shall be bestowed with more of the lovely white stuff on Sunday. I plan on another walk and the only thing that would make this even better than last night's stroll would be for it to be actually snowing. Crossing my fingers!

Funnier

My mom reminded me of another of my grandmother's favourite jokes:

What did the brassiere say to the hat?

"You go on a head, while I give these two a lift"!

Heeheeeee!

A Funny

Okay, for some unknown reason, this just popped into my head today. It is a joke my grandmother told me when I was quite young and I was both delighted and horrified when she told it to me. Delighted because it was "naughty" and horrified because she was always so proper and it just wasn't her style. Ready?

What did the stomach say to the burp?

"If you're quiet, I'll let you out the back door"

!!!

Knee-slapper, eh? That Granny!

Kootenay Impressions

As you head further northeast in the province, you begin to notice the flame-coloured trees that are being ravaged by the Mountain Pine Beetle, glowing in the sun amidst their green neighbours. The odd birch tree stands out, gleaming green and white - victors cheekily displaying their healthy foliage. No nasty beetles on them!

All the other trees perch on the hillsides, muted in their summer splendor, mourning the loss of their compatriots.

The sun dances under the glacial glares of the mountains, as they dare it to melt their icecaps. The sun obliges enough to send forth waterfalls washing down the mountainsides, some trickling, some gushing.

Moving deeper into the Kootenays, you begin to notice a different summons of death amid the trees. They stand stalwart, like great wizened old men. Their branches jut out of their decaying trunks at odd angles, giving the appearance of many crooked arms. Darkened foliage hangs as ashen grey beards. They are dead, but they remain standing. Same song, different lyrics you might say.

...

Okay, our trip was nowhere this bleak, but it was interesting to see the variety of afflicted trees. Not sure what caused the ones to die right in their tracks, but there they were, waiting for the other shoe to drop as it were. Or the axe to fall.

More about the trip another time. Tired.

The Power of Advertising

If you ever wonder who they write all those commercials with catchy songs and funny premises for...it's me. I am their target audience. After seeing the commercials for this and this, I have been fighting the urge to go out and BUY! Lately I find old commercial songs popping into my head at certain times. For example, whenever I make the kids chicken noodle soup now, I sing:

When I want chicken noodle
Mom makes Lipton Chicken Noodle
It's the only chicken noodle
That'll do

'Cuz Lipton chicken noodle
Is delicious chicken noodle
And there's lots of little noodles
That you chew

Thanks Mom for chicken noodle
Thanks for Lipton Chicken Noodle
It's the only chicken noodle
That'll do!

In the original commercial, I vaguely remember a kid in a chicken suit (on stage as though he was in a school play) walking around with his wings flapping, so of course I have to add this to the act. It's most entertaining for my kids.

Then yesterday, after Kes had a wipeout on the concrete, hubby mentioned that she might need some Ozonol on her knee. I then broke into this:

How about a little squeeze?
You've had a little fall
You've scraped your elbow or your knee
That's the time for a little squeeze
Of Ozonol

And just randomly popping into my head came this 1980s Canadian anti-smoking tune. It was rather mournful and to the point:

I never did a thing
That made a smaller person
Lose the way
My freedom won't allow it
My freedom...
Won't allow it

That one is quite obscure and I could not even find it on a Google search. Anyway, it's funny how having kids makes you wax nostalgic and recall the weirdest things from your youth.

We've been hosting a Japanese exchange student this week at our home. We had expected them around 8pm on Saturday and there was a huge mixup with the times and they ended up arriving at 10:30am. We didn't get the call until around 3:00pm as we were out shopping for groceries in preparation. Fortunately we are only five minutes from the school and got there quickly, but these poor kids had been waiting there all day! Some of the host families are in Surrey! I felt so bad for the three or four we left behind. And then they had to be back at the school at 7:45 the next morning for a day trip to Victoria, poor kids! Her name is Mina (meena) and she will be with us until Sunday and although she is relatively quiet and unobtrusive, I am finding one more person in the house to be overwhelming. The great part is that even though we were led to believe that she would have no English, hers is quite good. As good fortune would have it, English is her passion and she works very hard at it. Naturally she came bearing lots of gifts that only come packaged the way the Japanese do it. Everything was gift-wrapped neatly. There was a tin of rice crackers in a variety of flavours, a wooden "catch the ball" toy for the kids, as well as a couple of story books that Mina laboriously translated for us into English (how very sweet!) along with a little setup of the storybook characters in beanbag form (I'll try and snap a photo of that), a jar of cherry blossoms packed in salt that you make into a tea (peculiar, but not bad), and a little box of confections individually wrapped in rice paper - they are shaped like little bells and are like eating a sugar cube - yum!

So now you know why I have been a little quiet these last few days.

Hayden has turned into a mina bird and repeats most things you say to him. He is learning more shapes now, so along with DIE (star) and MOO (moon), he now has KIRKLE (circle) , OVOVO (oval) and GOGOGO (triangle). If I ever need to distract him, as I did this morning while we signed some insurance papers, I pop in A Treasure in My Garden and he stands there enthralled - this is by far the best purchase I have EVER made. The songs are sweet, short and not the kind that drive you batty after hearing them 10,000 times.

The other thing he really likes is Hi5. I ADORE this program! Not only are the songs catchy and short, but the show contains none of the typical preachiness that you find in so many of today's cartoons and kids shows. I mean, I know we have to make kids aware about the environment and social issues early on, but please. We are talking about year and a half old kids. They want colours, they want music, they was flash, they want entertainment. They are not going to understand the nuances of saving the rainforest ditties. Don't they get enough of that forcefed to them in school anyway? How many times has my teenaged daughter had to go out and pick up other people's garbage, cigarette butts and dirty diapers in the community? More times than I like to count. And don't we have city services (and pay taxes) for that stuff?

Okay, somewhere along the way that turned into an unintentional rant! Sorry about that!

The movers have been booked and are arriving on April 27th to do the packing. I am sick with excitement, mostly because I don't have to do it! Sure, I'll pack a few things so I know where they are, like my makeup. But for the most part, I'll enjoy that present-like atmosphere of opening boxes on the other end, not knowing exactly what is in them!

My Grandmother's Kitchen

Some of the best memories I have as a child under the age of eight, are in my grandmother's kitchen. It was a relatively big kitchen compared to what you might find in a house today. At least that is my memory of it. There was an alcove for the table and chairs with windows all around it. There were two doors into it from the house, one from the hallway and one from the dining room and another door out to the back yard. To me, that house is still what I have in my mind as a traditional house. My twin sister and I grew up in that house until our mother remarried when we were eight. I have such fond memories of Cathy and I sitting at our little red card table with the fold-out legs and nursery rhyme characters like Jack and Jill on the beige vinyl table top. We had matching red folding chairs to go with it. (I think my mom might still have the table, at least.)

I have vivid memories of my sister sitting woefully in front of a plate bearing brussels sprouts and my grandfather bopping by and surreptitiously grabbing one or two of them and stuffing them in his mouth, while I suppressed a giggle. I always ate my brussels sprouts like a good girl, but then again, I LIKED them (and still do!)

I can still remember which cupboard the treacle was kept in, which we used to eat on Yorkshire Pudding for dessert.

I can remember bursting through the door from the back yard into the kitchen with handfuls of dandelions for my Granny's yellow canary, "Cheepy". He was a sweet little bird and liked to sing to anything electric, such as the vacuum cleaner or blender. The day he died Granny picked us up from school which was a rare treat and then broke the news on the way home. I recall her carefully taking him out of a paper bag to show us his little body. The kitchen was not quite the same after that, without him singing joyfully from his cage.

I can remember peering out the kitchen window when Granny would say "there's Grandad's plane going over, wave to him!" when Grandad would go on business trips. He was (and still is at the age of 90) an interior decorator.

We would ask Granny how old she was and she'd say "one hundred and seven", and the light shining through the kitchen windows would glint in her eyes.

I DO recall one dreadful evening when I was about six and as I was heading out of the kitchen after supper, Granny said "where do you think you're going?" and threw me a dish towel. It was dishes forever after that (on alternate nights, thank goodness for twins!) with careful, nay stern, instructions from her: "don't take the dish I just put in the rack, let it drain!"

That house, and therefore kitchen, is long gone. It was torn down to accommodate something more modern, I'm sure. Based on my personal memory, I used Paintbrush to create a floor plan of the main floor of that old house. It seems so huge in my memory, but I am sure had I visited it again as an adult, it would not have seemed so big.


It's a little tiny, sorry. If you click it, it gets a little bigger.

In my own experience, kitchens tend to be places of congregation. No matter how much seating you have in the rest of your house, company will always gravitate towards the kitchen. It becomes the nucleus of a house. Laughter and happiness abide in the kitchen. My kitchen shall be no exception.

I am very happy that our new house has a family room/kitchen area that is of a good size. I hope that I can build the same kinds of memories for my children and subsequently my granchildren. Maybe I'll even get them to call me "Granny"!

What Inspires Me?

I've decided to participate in Sunday Scribblings to challenge my writing a little bit. Also, it might stop me from complaining so much here!

Inspiration has always played a large role in my life. I have been writing since the tender age of six. My first "published work" was in the school gazette at Shaughnessy Elementary School. The teacher had asked us to write about fire drills and what to do. I had drawn a picture (my artistic skills have not improved since then) of some stick people walking and written the caption "when there's a fire, shut your mouth and close the door". I remember the teacher really liked it and getting my first taste of "being published" had me hooked big time. I've written ever since. I've not had anything formally published, mind you, but we'll get there.

Writing is not the only creative thing I do. Since the age of six, I have also knitted. Over the years, I picked up sewing, cross-stitching, paper-crafting, paper-quilling, rubber-stamping and scrapbooking. I'll try anything crafty if it interests me enough.

I can find inspiration in the smallest things. It can be watching people on the bus, for example. Yesterday I spotted an elderly asian couple on the #20. The husband was lovingly tying a scarf around his wife's neck and adjusting it so it was "just so". He also was not wearing socks inside his running shoes, which caught my eye. I thought it was so sweet that I jotted a note down about it and plan to use that scene in a story sometime.

I love colours that are rich and deep. Pastels are okay and they certainly played a part in my life in the 80s, but give me a deep plum, a rich chocolate brown or an indigo blue any time now. I like to buy yarn and envision what to make with it, rather than getting the pattern first and buying the yarn second. Of course that scenario doesn't always work out if you don't have enough of the yarn!

Going into craft stores can set the creative juices flowing like mad. I've already made my wishes clear in the event of my death. I can spend hours just poring over all the exciting textures, colours and sparkly things!

I wouldn't say that I seek inspiration out exactly, rather it comes to me on its own. The times when I am uninspired are the darkest for me.

Recently, I have received inspiration that is more than creative for me. When Hayden was born with clubfoot, little did I know where that path would lead me. I now have had the opportunity to be involved in two wonderful projects related to clubfoot and the correction of it. I am inspired to make a trip to Uganda to see how one of the projects is helping out there. Another mother and I have discussed the idea of going one day. Working with Dr. Pirani has been rewarding and inspiring in itself.

Of course, my best creations are my three kids. And I am inspired to keep them inspired.