a few old pictures...

  

Robin and Sister Dolly + Elissa and Tony

musical cards

Music is therapeutic. They say it's great for people with dementias or cognitive impairment. I think we all agree music soothing or uplifting or whatever it needs to be in the moment. 

While Robin doesn't sit still and listen to music, she does have a few favorite artists and songs. Queen - Bohemian Rhapsody - a absolute FAVORITE of hers. Brings a huge smile to her face.

She also really enjoys musical cards. Any with songs or where you can record your own voice.

Here's a snippet of that smile...

missing my best friend

visit from the Burgs

California visitors!

9 years ago when I moved to San Diego for college, I met one of my best friends on my dorm floor Lynsie Burg. Since then we have lived together in many places including Spain, traveled the world, attended concerts, had many a bottles of wine, and truly savored life. We both have incredible families and value that relationship. Lynsie is the other daughter my Mom never had and Lynsie's parents were my family away from home in San Diego. John and Sheri Burg were in the Twin Cities for a quick stop and were able to visit Robin.

Thankful for them, Lynsie, the entire Burg family and all their love!

research, news, and understanding the FTD Disease

Many of you know I have done extensive research on the FTD disease. Even before diagnosis I was reading about signs and symptoms. When it was confirmed FTD, I scoured the internet for more understanding of why, how, what happens, and what can I do. I attended 2 conferences in San Diego and have participated in a few support groups based on the FTD disease. 

Since it is taking my Mom's life, I want to know WHAT IT IS. I want to create more awareness in society, help others struggling through it, participate however I can in research and make a mission to find a cure. I'm drawn to this purpose.

Fortunately the 9th Annual FTD International conference is being held in Canada this year, close enough to travel to. I applied for a travel grant for caregivers and was awarded a generous amount of money. I'm still on the fence as to if I'll go as it's time away from work and a significant cost still. 

But I wanted to share the link to the conference for anyone interested in learning more:

http://www.ftdvancouver2014.com/

Also the link to the Association for Frontotemporal Degeneration. This website is extremely helpful in learning more about the disease and the latest in research:

http://www.theaftd.org/

This video also shares another perspective on the disease - "It Is What It Is"

http://www.youtube.com/watch?v=Ue3y60AsMCE

Additionally we have a local writer, Dan Browning, of the Star Tribune in Minneapolis that wrote a very personal and touching series on his wife's battle with FTD. She passed away this Spring at age 53. His blog is tough to read so prepare with kleenexes. I thank Dan for sharing his insight and giving more exposure to the disease.

http://www.nextavenue.org/expert/dan-browning

Wednesday visits

Robin's Sister Dolly and Nephew Tony make regular visits on Wednesdays. Dolly is a massage therapist and gives Robin the deluxe treatment. She loves a good foot massage and it's truly the only thing that will keep her sitting for long periods of time. It's a blessing to have their visits.

Sisters 

Tony and Robin 

Kisses!

walking in style

Thanks to Robin's Niece Elissa and her two kids, Dreah and Tae, Robin has a stylin walker outfitted with purple dazzling!

The nieces and nephew visited this past weekend. Dreah was all hands on board to help Elissa and I give Robin a nice spa day with a soak in the bath tub, pedicure, massage, and hairstyle. The kids helped clean up Aunt Robin's room and smiled the whole time. 

Thankful for their love and cheer! 

summer nights on the patio at Pier

Another fantastic dinner at Pier 500 in Hudson with Robin and many of her friends. I wish I captured more pictures but here's a videoo clip of the crew.

Thanks for all those who could make it - we'll be sure to do more. 

And thanks to Andy and Lori at Pier 500 for always setting us up with the perfect table - and the staff for giving the best service. Much appreciated!

highlights and happy!

Thank you again Kathy Stewart (from Hudson) for giving Robin a new summer hair do!

Highlights and a layered cut are perfect. Robin enjoyed the pampering and was all smiles afterwards.

Kathy - you are a blessing because this disease takes away a person's self-dignity and you bring it back to Robin with beautiful hair. Thank you!!!

Family Dinner in July

We spent this past Sunday evening in Medford with the family. Robin was a bit agitated and ready to leave from the moment we arrived but this seems to be standard for her now. We enjoyed the beautiful weather, all the farm animal, great food, and a ride around the farm property.

Sister Dolly and Robin

Gramma Donna

Cassidy, Todd, Dallas, Cael, and Camille

meeting Nick's Mom

As many of you know, Nick has been one of the greatest blessings to both my Mom and I. Fortunately he is the total package, as his family is just as wonderful. We've spent many weekends at the cabin together and time just visiting in the evenings. The other week Nick's Mom, Barb, came to meet and visit Robin for the first time. 

Instantly Robin had a smile and I could sense she knew the connection. Barb embraced Robin and jumped right into caregiving mode by giving Robin a foot massage. How lucky!