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shelleynshaggy

Distinguished member
Joined
Sep 2, 2009
Messages
280
Diagnosis
08/2009
Country
US
State
OH
City
Brunswick
This past week Jim's Aunt Mary and I attended the 7th International Conference on FTD in Indianapolis, IN. Though the actual caregiver portion of the conference was only one day - it kept my whole week full!

To start at square one: Monday was probably the worst day Jim had yet. He was just very "out of it," disconnected and distant. He had problems getting the girls up - he just didn't have the ability to do it. After getting the girls off I went to bed. Apparently, Jim fell asleep and Aunt Mary had to wake him for a chiropractic appointment. After the appointment he fell back to sleep and missed getting Ruthie off the bus. Everything worked out fine. Also, despite being out of it - he still had his humor. When Aunt Mary told him she had to drop him(off) and run his response was "just don't drop me to hard." Monday's ordeal ended with a scheduling error which postponed our meeting Jim's new FTD neurologist until October 19.

My wonderful sister Jeannie drove in from Virgina (over a 6 hour trip when not bringing your 2 kids)to care for my family. Though she will probably scold me for thanking her again - without her going to the conference would not have been possible. She had a six year old, two three-year-olds, a one year old, Jim and two crazy dogs. Apparently, she survived!

We arrived at the conference Tuesday and attended the "reception" where we met several of my online FTD support group. Putting faces to the names I have known for over a year was wonderful. Included in the group were the parents of a women who was diagnosed at age 29 and passed away last October at age 31. Another family was caring for their 29 year old son/brother who was diagnosed 4 years ago. One theme was clear - all these people were diagnosed at to young an age.

Probably one of the most memorable was Sue. She and her partner have created a documentary about FTD. Here is her website: ftdtheotherdementia.com. I will post the link to the documentary when I get it. Sue was a brillant mind who was diagnosed at the age of 53. Though she has lost half of her IQ she is still brillant and it was great to hear about FTD first hand.

Wednesday was packed with the conference from 7:45 until 5:30. Though it will take me awhile to sift through my notes - I know I learned a lot. There were MANY referrances to FTD and ALS. Also FTD in relation to motor neuron disease and PSP (Progressive Supranuclear Palsy - the disease Jim's Grandma had.) I found these diseases involve some of the same protein build-ups in the brain. Researchers have been able to also link some DNA markers is this disease. Though this is great news medically - it scares the hell of me when it comes to my children.

While at the conference I met Dr. Lerner - Jim's new FTD neurologist. I was very encouraged to find out from other sources he was well aware of the mishap on Monday and upset over it. Dr. Lerner seems very nice - he even gave me his cellphone number! I look forward to the upcoming appointment.

Wednesday's conference ended with an elaborate dinner - complete with Chef Ramsey-style dinner. We ate with more on-line support group members and world renowned neurologist Dr. Kertesz from Canada. There was no hiding his compassion as he listened to each of our stories. He talked of changing the term fronto temporal dementia to fronto temporal disease due to the stigma that surronds the word dementia. Dr. Kertesz has written a book named "The Banana Lady" in which he documents stories of some of his patients and explains some of the curiosities surronding this disease. He has also written textbooks related to FTD.

All in all - I am so happy I was able to attend this conference, it is an experience I will not soon forget. I am even more thankful I was able to share the experience with Aunt Mary.

One last thing - there is a new FTD book out and it is FREE - yes FREE. You can also read it online at: Frontotemporal Disorders.

Sorry for the book-long post!
 
Thanks! This has been a great help in deciphering FTD from EL! I'm so paranoid about FTD with my husband. Thank you so much for this information! Although, he does walk outside in his underwear, he's always done that and doesn't care! He's aware of what he's doing, so I guess that is what counts!

Thank you, Shelley!
 
Just glanced through the booklet... info on symptoms and treatments appear to be right on the money. Good stuff, thanks for posting.
 
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