Tuesday, May 14, 2013

So Where Do We Go From Here?

Ever since Kiley asked me if I was going to get FTD and if that meant she also would get FTD, I've been a little troubled.  I know there is a test that can identify the genetic markers for FTD and that if my mom has those genetic markers then I have a 50/50 shot of getting or not getting FTD, but do I really want to know?

That question brings me to the presentation I heard today at our monthly FTD support group meeting.  The presenter was Dr. Ronald Devere, an Austin area neurologist specializing in memory loss and dementia.  He really tried to drive home the likelihood or should I say the unlikelihood of developing genetic dementia.

So here are the numbers I heard:

Only 15-20% of FTD cases are genetic.
.5% of Alzheimer's disease cases are genetic.
10% of people over 65 have mild cognitive impairment.
60% of people with mild cognitive impairment develop dementia.
40% of people with mild cognitive impairment don't develop dementia.

Stress is the biggest cause of memory loss.

Let's say that someone is predisposed to getting FTD or another type of dementia, something like surgery or anesthesia can trigger the development.  This happened with my mother who had a stint put in a few years ago.  She experienced extreme stress before, during and after her surgery and as she recovered, her personality and behavior went downhill.  Another person could live out their life and never develop dementia but only experience mild cognitive impairment.

So needless to say, I am not as stressed out about getting FTD. 

Saturday, April 6, 2013

More of the same...

So I went to Hallettsville to work a party on Thursday. I stayed with my parents. My mom has been calm the last few times I've seen her. Little things that seem to be getting worse...pocketing food in her cheek as she eats. She eats really fast and her chewing and swallowing can't keep up. Another thing is her messing in her pants. She was on a med for a little while that caused this problem, and she got better when the doc switched that med, but she's doing it again. Daddy is a little more prepared this time around. Even gives her Imodium before a road trip. I'm more sad for my dad that he has to deal with that aspect. One thing that has been helpful for him is an online support group called Dementia, The Journey Ahead. It's on Facebook and gives info in little spurts so it doesn't get too overwhelming. Of course our monthly support group can't be beat.

Usually on my visits, the mornings are the most difficult with mother. She seems a little more scattered than normal, but as the day progresses she seems to calm down.

I'm really glad I still have both my parents and it would be great if they aged according to the plan I had, but it hasn't.

I guess the saying, "It is what it is," is an appropriate slogan for FTD.

Thursday, January 24, 2013

Alice's Angels

We've just about come to the one year anniversary of my mother's diagnosis of FTD (frontotemporal degeneration).  This year also brings around the 2nd Annual "With Love" Campaign.  My daughter and I decided to jump on the band wagon and start a page in honor of my mother and all the angels supporting her...We are calling it Alice's Angels.  We hope you take a moment to click on the link to learn a little more about our cause.  The organization is trying to raise $50,000 between now and February 14, 2013.  Kiley and I are trying to raise $1,000.

Some important links:

The Association for Frontotemporal Degeneration - www.theaftd.org
Alice's Angels - http://theaftd.givezooks.com/grassroots_fundraisers/alice-s-angels