FTD Clinic Day ~ Mayo

Today from 9-2 we had the "FTD Clinic Day" at Mayo in Rochester. It was the First ever of it's kind! Dr. Boeve & his team planned this day for patients, families, & caregivers of those with FTD (Frontotemporal Dementia). Our group today consisted of 4 families, all dealing with different stages of the disease. For all of us it was the first time we had met another family struggling with the same disease... so that in itself was so Helpful! It meant so much to meet with people who are experiencing the same feelings you are & truly understand what you are going through!! They plan on having monthly meetings from now on & I am hopeful that we will be able to return. I am hopeful that Toby & Ryan will be able to come & experience this as well! It will also be nice to meet up with the families we met today & possibly meet new families along the way.

Here was the general overview of our day: Welcome, Family introductions & discussion, resources & support for families, reviewing behavior changes & challenges in FTD, Video on caregiving (at this time they took the patients for a short activity), FTD medical presentation by Dr. Boeve, & question and answer time.

I wish we would have had this available when Cathy was first diagnosed! It went over almost all of the questions & struggles we have had over the past year! I am so thankful that this is now available for families & I hope that they continue to offer this clinic!

What was Truly the most Amazing thing today was meeting the families. I wish we would have had more time to sit & visit with them. With respect for those families I won't go in to details about their situations. I will say that one patient was a husband/father/grandfather who was brilliant, witty, & humorous, one was a young man in his late 20's (YES, 20's) & the struggles and emotions that his family is facing brought me to tears, & the other was a woman in possibly her 60's. It brought our lives & our situation into perspective.

This thought may seem strange to you... but I am going to put it down... I remember feeling uncomfortable & awkward around friends when they had a Loved one with an illness. You always wonder what you should say or shouldn't say. You always feel so much for them yet know you don't know exactly how they are feeling. And I thought today going to this meeting I would finally be able to understand what other's are feeling & be comfortable talking with them. Yet... I found myself thinking, "I can't imagine how they are feeling!" Every situation is so different. One of the nurses today said, "When you meet someone with FTD, you have met one person with FTD." Every patient & every case is so different, yes we all had similarities... but our paths are all different. People often say to us, "We are so sorry for you." And I am usually thinking, "It could be so much worse, other families have it worse." I don't let myself feel the.... "Yes, this really does Suck!" You don't want sympathy I guess, just understanding.

After the meeting today Cathy came back home with us. This morning she was agitated with Gayle, which we are becoming accustomed to. Once we got into the clinic however she did very well & didn't show any aggressive/angry behavior! (sigh of relief) And on the ride home she was smiling, laughing, & rocking to the radio with me again. Once we got home she seemed comfortable & happy. She hugged up the kiddos & gave them kisses and big smiles as usual. I am disappointed I didn't get to see Aunt Charlene - she headed to her Granddaughters home for a few days & is then headed back home!!! Hopefully we can plan a trip out to Denver to see her someday soon! We can't Thank her enough for all the help she has given Cathy & us!

Special Thanks to Dr. Boeve & his staff! He is Truly Amazing... he is able to simplify things so we can better understand, he treats us like human beings & takes time with us, he truly makes you feel that he cares about your situation & I was so impressed at how he makes such good eye contact with the patients. And thanks to Angie for being such a great leader today! It was a Blessing for us families & I hope that they are able to continue this program!