Inspiration

I love fireworks. So much potential for third degree burns.

Heartbreaking…

THIS IS ALS

4th of July is by far my favorite holiday. Fireworks, Family, Friends and Fun. Bikinis, Boats, Beer and BBQs. No expectations, no pressure. I am so lucky to have experienced some of the most epic 4th of July’s ever! 

This 4th of July I’m sitting on my couch listening to the fireworks and reminiscing about all the wonderful ones I have been apart of. The photos above show the last 3 … ALS 4th of July’s. 

The first one was July 2015. I had officially stopped working and moved onto the boat in San Diego. We were still full of hope and having fun. (Seriously look how tan we were!) We knew what ALS was and we knew we had a timeline but we still didn’t “get it”. We had spent the day fishing and enjoying family and friends and then cruised the bay for one of the most mind…

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Inspiration · Science & Medicine

Getting Back My Voice?

This is really exciting news! I have lots of voice recordings from my Digital Media classes.

How I Live Now: Life With ALS

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This news is both moving and a profound reason for hope! When I was diagnosed three years ago, voice banking would have taken eight hours, and I simply didn’t have the strength – or money – for such an endeavor. As you will see in the video,141136 this company was able to recreate this man’s voice with only three hours of recording. Maybe one day, my half hour of recording will be enough to get my voice back!

“I’m shouting hard… This is the start!”

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Inspiration

Share Your Journey

Sharing your personal experiences can truly make a difference in someone else’s world, it certainly gives a sense of meaning to my life. Someday this pain will be useful…
Inspiration · Noteworthy Quotes

Write Your Own Life Story

   Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.”

~ Walter Anderson

Inspiration

My New Normal

On January 28 of this year I was diagnosed with “probable” limb ALS (Lou Gehrig’s disease, or a disorder called amyotrophic lateral sclerosis). Although my life is forever changed, I am convinced there are many ingredients paramount to overcoming the trials of any devastating disease. I truly believe that a positive attitude is critical in conquering the adversity of any disability. I have spent hundreds of hours researching ALS and have a wealth of information on dealing with this horrible disease, both physically and emotionally. I have found an abundance of self-help gadgets and even devised a few of my own. Carolyn Younk, Care Services Coordinator, ALS Association, Wisconsin Chapter, has suggested I help inspire others in despair. Yes, I have my own mountains to climb, but I can beat that mountain and help others do it too. I have faith that we are given challenges for a reason, that there must be a silver lining in all of this madness. I want to share my journey and personal army of ideas and discoveries with other people and families that don’t have my strength, looking for someone they can identify with. So, here I go, ready to chronicle my research and thoughts. The way I see it, I can melt into a puddle of goo or I can take the reins and ride this bronco. Giddyup (gĭd′ē-ŭp′).