Mayo Clinic gets $5.75 million gift to study Lewy Body Dementia

Wow – What a generous gift!
Fantastic… now we may be able to get somewhere in understanding this ruthless disease!

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http://jacksonville.com/news/health-and-fitness/2015-01-28/story/mayo-clinic-gets-575-million-gift-study-lewy-body-dementia

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Did Lewy Body Dementia contribute to Robin Williams death?

Click the link below to read Lewy Body Dementia Association’s article.

LBDA comments on Robin Williams.

It seems so long ago that we saw changes in Mom that were concerning enough to seek a diagnosis and help from her doctor. But in thinking back prior to when we realized this was more than just “normal aging” there were small signs that could easily be justified away…and were. Symptoms fluctuate in the beginning which I believe must make it more confusing for that person. I also think it’s human nature to preserve our dignity and not admit there is a problem. (That is why I believe the stigma attached to dementia needs to end. It is a terminal illness.) There came a day that Mom broke down and admitted that she just couldn’t take pretending anymore. It was taking too much energy. According to her specialist in the field of LBD it is not uncommon for someone who is very social and good at reading people via expression or body language to hide their symptoms by using all of the skills they have to do it. Mom was a master. That is, until it became too much. No one knows what was going on inside the mind of Robin Williams. Personally, I believe it possibly could have played a part in his decision to end his life…but we will never know. Regardless, it is a very sad loss. He was a truly talented actor and gave us so many wonderful movies to warm our hearts and make us smile.
Rest in Peace Robin Williams

My TEDx Talk

This is a talk given by an old friend of mine from grade school. Even back then I knew he was going to go places in life. Well, I was right and I’m proud to share this video which is truly inspirational. (don’t let the title “Graduation Day” stop you from watching because it will be an inspiration no matter where you are in your life)
Fantastic talk John!

Manner of Speaking

It was an honour to be invited to speak at the 2014 TEDx Lausanne. The members of the organizing committee were professional, hard-working and enthusiastic. The other speakers were passionate and supportive. The audience was amazing!

Here’s my talk:

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Protected: Oct. 31st, 2014 Life on Mom’s Lane With Lewy

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Watch “Dementia Care Tips by Teepa Snow” on YouTube

Great advice when you become a caregiver.

Watch “Gladys Wilson and Naomi Feil” on YouTube

It’s amazing to me how someone that is usually unresponsive can be “brought to life” with things like music or validation therapy (as this video shows).  Recently my daughter and I visited Mom with my 2 1/2 year old grandson.  We were shocked when Mom spoke to him with complete clarity and playfulness.  When he spoke, Mom would turn her head to him and respond, something she rarely did when we spoke to her.  How is this possible?  Does his little voice bring her back to her early days as a Mom? Is that an area of her brain that has not been affected yet?  What else could we do that will bring Mom to life again, even if only for a few minutes.  Is she able to understand more on a daily basis than we think she can just because she cannot find the words to form sentences that make sense.  Is she afraid and frustrated because no one understands her?  I truly wish there was a way to read Mom’s thoughts so I could give her what she needs or may be longing for.  It’s scary to think we really don’t know what life is like for her or how she sees the world around her.  Are there times when she knows she is living in a locked facility full of strangers and left wondering where her family is? Without the answers, these questions continue to invade my thoughts and break my heart for Mom.