It not just a cane........it's a lightsaber too!

My disability brings about all kinds of fun for my Grandsons.   The adaptive devices that I depend on for mobility and balance, begin to do double duty.  To a child, my home looks like an amusement park.   My Grandsons have fun playing with my cane and my lift chair.  Many times I will look for my cane, but lo and behold, it has been snatched and is being used to fight off stormtroopers.  

My chairlift, in their eyes, has become a great way to escape from pirates or alligators. I love that they look at my adaptive equipment with a sense of fun and wonderment.  The pure simplicity of a child is pure joy!

Does your home become a play land, too?

Do Overs!

If you had the chance what would you change about your day?  What would you"do over"?

 

Many people keep a journal of the things they are thankful for in their lives.  But I'm going to journal in a different way.  I'm writing a, "Do Over Journal !"

Each night before bed I'm going to think about my day and journal what I would do over if I could. Maybe I would show more patience to the grocery clerk, pray more, or even give more hugs and kisses to the ones I love.  Since my disability is a huge part of my life, some of my do overs would be specific to that.  (Ex: I shouldn't have written a nasty note to the monster truck owner parked in a handicapped parking spot.)

My,"Do Over Journal," hopefully will serve a purpose.  By re-examining my daily behavior, I will make lasting change.  Well, I can always hope!

What would you do over?

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What the new me would tell the old me!

I would love to talk to my young self!   I would tell her that her body was absolutely amazing and would plead with her to take good care of it.  I am like most people when they were young.  I ate bad food, slept way too little, and thought exercise was walking to the car.  My body was something I rarely thought about and it was taken for granted.

The human body seemingly works with little effort, but in reality it's a well choreographed dance, "The Dance of Life."  Each and every blood vessel, nerve, muscle, and bone has a particular job.   It was only when my health started wavering that I gave my body a second thought.  There are many interesting facts that detail how our bodies work.  Here are a few:

1. Nerve impulses travel to the brain at speeds of up to 250 miles per hour to and from the brain, faster than a Formula 1 race car.

2. Our muscles are actually more powerful than they appear to be.  Human strength is limited to protect our tendons and muscles from harming themselves.   This limitation can be removed during an adrenaline rush, during which some people have lifted boulders or even cars off themselves.                                                                 

3.  Human bone is as strong as granite. A block of bone the size of a matchbox could support nine tons of weight.

There are more fascinating body factoids you can find at:

http://distractify.com/old-school/2014/07/20/amazing-facts-about-the-human-body-1197776387

www.disabledworld.com

http://www.factslides.com/s-Your-Body

So we all need to show some respect for our hardworking bodies!  Even if we suffer from an illness or injury, our bodies continually work hard and do their best, each and everyday.

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Nana don't...........anymore!

Safety is more than just a word, it's a way of life for this Nana. (My precious grand boys call me, Nana)  I am in pretty good shape, but a fall with a hit on the head could be catastrophic .  Because of this my daily rituals have changed, somewhat. There are things that Nana just won't do anymore.  Nana don't play!

I love candles: the look, the glow, the smell.  If your house is bathed in the warm glow of candlelight even the biggest messes will be overlooked.   However, I don't think it's smart for me to be working with an open flame.  Nana doesn't want 3rd degree burns, so now Nana uses flameless candles.  They're a great substitute for the real thing, but I do miss the smell.

One of my favorite things to do is cook.  I could spend hours preparing great meals for my family. My cooking routine has changed somewhat since it's harder to carry hot pans safely. Especially pans of boiling water. Ouch!   So whether I'm making pasta or boiling a lobster, now I wait till someone in my family can carry the pan.  Nana doesn't want to be painfully red as a lobster!

When it comes to vertical height let's just say that I got left out.   I'm very short so many times things are out of my reach.  In the past I would just whip out my trusty old step stool, but now............NOT!  I could see myself getting dizzy and falling off.   It truly is the recipe for disaster! We tried to arrange our home where the things I use are in easy reach, and if that doesn't work I just yell, Someone Help Me!

So this Nana plays it safe!  With a disability you can still achieve your goals, you just have to   approach them in a different way.

What changes did you make?

In Praise of the Caregiver!

“Caregiving often calls us to lean into love we didn't know possible.” 
― Tia Walker

Today I will give praise and honor to the caregivers in our lives.  What would we do without them?  They give so much of themselves each and every day.   Whether you are in need of a full time caregiver, part time, or just a helping hand from time to time, caregivers play a huge roll in a disabled persons life.  Many times the caregiver in our life is exhausted, frustrated, and overwhelmed, but that doesn't stop them from caring for us.  They trudge forward and do tasks that make our lives better.

At this stage of my illness I am pretty much independent.  I still drive, cook and clean and do just about anything else, always with safety in mind.  Even though I still have a great deal of independence I still need help from time to time.  When I do my family takes on the roll of caregivers. Their support, love, and physical help is greatly appreciated.  I know that there is a possibility that as the years go by I may need a higher level of caregiving, but I know they will always be by my side. How blessed am I ?

Many people have paid caregivers.  They are equally important!  Just because they're paid for the gig doesn't change the fact that they have a difficult job.  

So let's give our caregivers, whomever they may be, a big thank you! I bet you'll make their day.

Do you have a special caregiver? 

Three Simple Things: Summer Must Haves!

Whooo Hoooo!  That time of year is here.  You know, the time of endless days, barbecues, tan lines, fresh tomatoes and corn, impromptu gatherings with neighbors, sandy, hot toes, and so much more.  When it comes to summer everyone has opinions on their summer must haves.  Well, I am right there with ya!  Here three simple things that make my summers..........extraordinary!

Watermelon

 

What can I say about watermelon?  Let's face it, when you think of summer your mind roams to that delightful, juicy fruit.  Well, at least mine does!  On a really hot, summer day a cold slice of watermelon makes your heart smile.   When I taste watermelon, I taste my childhood!  

Ice Pops

Bring on the Ice Pops!  These really bring back so many memories and feelings of summer.  Even to this day they are super cheap but super good!  My mom would by a box and it seemed like there were a gazillion in there.   I can remember running outside with an ice pop in my hand and no shoes on my feet.  The sticky, melting juice ran down my arms, but that was no problem, because I would get clean with the backyard hose.............and then get another ice pop!    Brain freezes never felt so good!

Road Trips

Summer is just not summer without a "road trip."   My husband and I love to travel, and our preferred method of transportation is the car.  I know that sounds strange, but airplane travel is so hard these days.  We love to plan our road trip with every single detail thoughtfully and precisely considered.   Our plans don't always work out the way we want, but we do have fun plotting the journey.  We have made a pilgrimidge  to Yellowstone, Grand Canyon National Patk, Panama City Beach and many more unbelievable destinations.  Some might say we are gluttons for punishment, but we love it.   It's how we roll!

 

What are your summer must haves?

 

 

 

 

A Different Me!

In life we are in a constant state of change, not just physical changes but emotional changes as well, and let's not forget the soul. 

Dystonic muscles were not always a part of my life.  I could walk, jump, run and scamper with the best of them.  Little hints of what to come were there but not recognized as a future nemesis.   For the most part the body gave what it was supposed to, and I accepted the rewards without question.  I made it through the teen years, worked, and had lots of fun in between.  Next came the married with kids years, where I am very thankful that I was able to raise me kids without my mobility disorder plaguing me.  

Once it was confirmed that there was a neuromuscular problem, something in me changed.   My persona became different and at times unrecognizable.  In the early years I was outgoing by nature, never meeting a stranger, and in truth I probably scared many away with my constant chatter.  I lived life out in the open, always ready for some fun.  However, when my symptoms began my personality began to change as well.  With each stumble and fall, a small fraction of me changed with my confidence level starting to wane.  I became aware of crowds,  and I felt embarrassed to walk in front of them.   The first time that happened I was totally shocked.  I was a person who in her former life could talk to a crowd of a thousand people without any problem.  With each phase of my disease I changed a little more.  I used to love to go to Starbucks and get a treat, but when I'm in between Botox shots for my voice I shy away.  My husband tells me to just drive up and tell them what I want, but that's easier said than done.  I am now shy, and I worry what others will think.  I know I shouldn't, but I do!

With my mind and body changing another part has changed as well, my soul.  My soul is who I am, good or bad.  The inner me now looks at life a bit differently.  I treasure every moment of this beautiful world, and I thank God for letting me live in the time of medical miracles.  No longer do I worry and stress about the small stuff.  I am more empathetic towards people and less judgmental.  I am in no way thankful for my disease!  I would much rather be healthy, but my disease has forever changed me; mind, body, and soul.

How have you been changed?