Join us for the Remarkable Robin Benefit October 16th!

Walk to Defeat ALS

We've all seen the Ice Bucket Challenge that swept the country this summer in response to raising awareness for ALS. I was inspired and touched as my Mom suffers from the disease and decided to take it one step further ... create a Team Robin for the ALS walk. 

Our team raised $1,070 and had 8 walkers the day of. $490,000 was raised by the Twin Cities walk - a huge record!

precious moments

This weekend we were so lucky to have Robin's oldest niece Sheila in town from Phoenix. She was Robin's favorite as a child and watched me grow up. Sheila and I have a unique connection in that we both moved far away from family at a young age and both lived in Europe. We share in those stories and also struggles of how difficult it is to be far from home. So grateful Sheila make it home for the weekend.

Saturday we spent the afternoon giving Robin a spa day! Bath including shaving her stick legs, a good facial, manicure and pedicure, lotion rub down and of course eyebrows.

Here are the moments captured...

yum protein shakes

Since Robin has struggled more and more with eating enough, I started making her protein shakes filled with healthy nutrients, fruits, proteins and fats. She absolutely loves them and eats until the cup is empty. So glad we found something she can enjoy!

Please spread the word about the Remarkable Robin Benefit!

4 shirts

At dinner tonight with Robin, I realized she was wearing not one, not two, but 4 shirts! It's slowly progressed to wearing an excess of shirts. While a year ago this might have made me frustrated and crazy, I now just realize "it is what it is" and laughed it off. Where and how the brain disconnected ... I don't know nor is it important. Find joy and humor in the small things! 

Hudson Star Observer story by Meg Heaton

Thank you Meg Heaton, journalist at Hudson Star Observer, for your beautiful article on Robin and the FTD Disease. Your long time friendship has been such a blessing to us both and now your words truly exemplify where our life is today.

Click the link to read the article:

http://www.hudsonstarobserver.com/content/degenerative-brain-disease-changes-everything-area-realtor

dysphagia ... what it is

A symptom of FTD and ALS is the atrophy of muscles and especially within the throat area. This leads to difficulty swallowing which is called Dysphagia.

Here are some facts from Mayo Clinic on the disease:
-"Difficulty swallowing (dysphagia) means it takes more time and effort to move food or liquid from your mouth to your stomach. Difficulty swallowing may also be associated with pain. In some cases, you may not be able to swallow at all."

-"It takes about 50 pairs of muscles and nerves to accomplish the simple act of swallowing, and a number of conditions can interfere with this process."

-"Difficulty swallowing can lead to:

• Malnutrition and dehydration. Dysphagia can make it difficult for you to take in enough food and fluids to stay adequately nourished and hydrated. People with difficulty swallowing are at risk of malnutrition and dehydration.
• Respiratory problems. If food or liquid enters your airway (aspiration) as you attempt to swallow, respiratory problems or infections can occur, such as frequent bouts of pneumonia or upper respiratory infections."

Robin's Dysphagia symptom has really progressed in the past few weeks. We are having speech therapy evaluations to determine her diet and what is best for her nutrition. She is consuming only thickened liquids (has been for some time) and all pureed foods. This part of the disease is truly scary because she is not eating nearly as much and not receiving the nutrition need to help her immune system. We pray for a solution to get her the nutrients needed.

motherly instinct

Today was a bad day in the book of Robin. She didn't take her morning dose of meds which threw her off for the entire day and spiraling downwards. She was combative, aggressive, weeping tears and not eating. I arrived after work, was able to feed her meds, shower her, curl hair, mini pedicure, brush teeth, and then bring to her the National Night Out Party. 

The Alton was hosting a great front lawn party with music, dancing, food and fun. Robin stayed for quite some time onlooking the music and young kids dancing.

After a while we came back inside to settle Robin in. She sat on the couch and I sat next to her. As I am completely exhausted, I naturally laid my head on her lap. She gave me the motherly touch of stroking my hair and brushing it back, tickling my shoulder, and squeezing my hand. It was perfection. 

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!

Paula aka "Superwoman" and "Psuedo Mom"

She's back from a long winter vacation and just in time to give me relief from the daunting tasks and time it takes to caregive. Paula Kimbllin has been such a guiding light, sounding board for my crazy thoughts, go getter, always up for the challenge, type A, tough love Psuedo Mom. She stepped in from the moment I knew something was wrong with my Mom over a year ago. She is selfless in her love and time - Doctor appointments, legal papers, send a fax here, pick up this, what do you think of this option, can you look at this facility. Anything I need, I know Paula will do and do to my type A standards in Superwoman time. Beyond words blessed to have her in our lives!

High fives to Paula!

girls night out

This past Thursday we enjoyed dinner at Robin's favorite, Pier 500 in Hudson. So many great friends joined and Robin knew them all, had a big smile, ate good food, and was truly content with the friendships and love surrounding her. We plan on a lot more of these dinners this summer.

Roxanne & Robin

Mari Gifford & Robin

Hugs from Carol Palm

Robin, Paula, and Carol

  

MaryJo, Robin, Paula and Carol

Perfection! Roxanne, Robin, Paula and Trixie

guardian angel

Both Robin and I are blessed that Nick came into our lives at the perfect time. It's apparent in the love and smiles she shows him, that she approves. She lights up when he walks into the room, knowing he brings comfort and laughter. 

Nick is selfless in giving his time, patience, love and words of wisdom. He is my rock and largely why I manage to get through the day to day emotions of this journey. 

I captured these last night as we visited Robin.

Robin's other daughters visit

9 years ago in August I was blessed to move to San Diego for college. On move in day, I met the other 20 or so girls on my floor and instantly we connected. Several of us became so close that we all lived together the following year, abroad Junior year, and at the beach Senior year. Martha and Lynsie are two of the girls that continue to be my best friends and Robin's other daughters.

We have all traveled the world together, spent many nights enjoying wine, celebrating Birthdays, gambling in Vegas, dancing at country concerts, painting walls in our many apartments, and often snuggling. 

Martha and Lynsie made the trek to Minnesota this weekend and we spent some good quality time with Robinator.