Post 1: About the Blog and Mary

(NOTE:  All donations will go directly to The Bluefield Project to Cure Frontotemporal Dementia, based out of UCSF.  More details will be explained in a later post.  In the mean time, please feel free to visit http://bluefieldproject.org/ for more details. Thanks!)


Hello and welcome!!! Whether you stumbled upon this blog by accident or intentionally, my family and I encourage you to read on.

Many of you may have known Mary and/or  Marge ("Nanny") before, after, or throughout  their  diagnoses; our purpose is to share who they are and how Frontotemporal Dementia (FTD) has affected all of our lives, theirs in particular.

We encourage you to share your stories via this blog by either commenting or by writing to Pennyfortheirthoughts@outlook.com and we will make sure your post is published.

This blog is too late to save our mom, our grandmother (Marge/"Nanny"), and possibly some of your own family members struck by Dementia, but that is not a good enough of a reason to stand by and do nothing.

The life and struggles of our loved ones who suffer from Dementia should be shared, in their honor, with an effort to bring hope of a cure for their children, grandchildren, and the other 100's of thousands of others affected by dementia.

Although Alzheimer's Disease is well known (and very well funded) is not the only type of Dementia. Parkinson,  ALS, FTD... these are also forms of dementia.

Unlike Alzheimer's, in cases of FTD, the deterioration of brain tissue has little to do with the function of memory. In fact, FTD patients often know what is happening to them for the first few years.  The primary signs and symptoms are that of communication. 

Dementia is not just a disease of the mind; it slowly deteriorates the brain which then cannot send and receive messages from the body; resulting in the eventual death of life functions (communication, swallowing, responding, walking, initiating, etc.)

Regardless of type, dementia is a death sentence upon diagnosis. It may take years or over a decade, but the end result is always the same.

To get to the point, my family started this page
-->to educate,
-->raise funds,
--> and to tell Mary’s story.

I only ask you for you to read this first post, and after that, it’s up to me to keep you engaged.

To educate -- FTD -- Can you imagine being dropped into a remote Chinese village where you could not speak, read or understand the language but you were lost and needed directions? Or, ever have those moments when you have a total brain fart and no matter how hard you try, you can’t think of the word? It’s on the tip of your tongue….argghh! But just can’t find it.....frustrating, no?

Now, imagine being both lost for understanding and unable to articulate a response or message to the outside world.  It's like a chinese finger grap -- the harder you try, the less you understand and the bigger the brain block. 

The situation only worsens...until eventually, you can’t find the words at all – you have nearly gone mute- the words are still up there-- trapped in your head-- you just can’t get your brain to send them, and when they are received they go to the wrong center. You say yes when you really meant no, but do not even realize you have made a mistake.  You try to write it down, but all you come up with are squiggles, shapeless forms. And reading? Forget about it, might as well be a different language...words you used to read effortlessly now is nothing by jibberish to you.

That’s just the start-- year one.

Frontotemporal degeneration (FTD) represents 10-20% of all dementia cases—and typically strikes you while still in your prime 40s-60s (but seen as young as 21!! and late as 80), yet nearly no one has ever heard of it (myself included until 2008 when my 56 year old mother was diagnosed).  It’s time to get the word out. Alzheimer’s – though equally terminal – is what folks know. Which means it is also where money goes, and research is focused. Alzheimer’s medication will not help an FTD patient.

My mom, at 56, was told by some of the best medical professionals, “Sorry, no medicine. no treatment is available. No cure. Please go home and prepare for the road ahead.”

To Raise Funds – Without research, there will continue to be no medicine and no cure. Most FTD cases are not inherited. Most are spontaneous (unknown cause or related family history), some are genetic (the family has some history of dementia, but there is not a clear connection between cases, and some are hereditary (an autosomal dominant gene is passed down from one generation to the next). My family is in the 10% that is hereditary. Are you familiar with the fear of Huntington’s disease? Our case of FTD harbors the same fear, 50/50 chance of passing it on to offspring. I will discuss this in more detail in a later post - but this is meant to be an intro – I’m just reeling ya in! (Is it working?)

In May, 2013, Heidi and I (siblings) ran the Pittsburgh Marathon in honor of my mom and Nanny. Additionally, we will continue to write in this blog and hold other functions/races to keep building on our initial fund raising goal.  Every penny matters.   Every penny is a cent closer to giving the next generation a shot at holding on to their mind, body and life. I will discuss later on where specifically your donation goes, but it is ALL for research - The Bluefield Project -- based out of University of California-San Francisco (UCSF) but works closely with other universities in the United States as well as the United Kingdom in order to utilize each other's findings rather than compete against each other.  So please keep reading but also please consider the “Donate” button in the right column.

“Penny for their Thoughts”  

Finally and most importantly -- To Tell Mary’s Story: Mary was many things: a wife, daughter, sister, mother of 5, grandmother to 4, aunt, a school nurse, a soccer mom; but more importantly she was the keystone to our family. Our mission is to take you on her journey; to touch you with her moments of joy and sorrow, strength and need via our memories and our experiences.  We encourage you (yes, you!) to share your own stories – whether it’s about Mom or Nanny or your own husband or wife, grandparent, etc. We want you to comment or to click on “Post to this Blog, - click here” button and share.

Together, we will walk through the before, the during, (positive and not-so great times—there are some good ones ;)) and with a sad, yet peaceful heart, the after.

And finally, we will also tell you of the future. When something this terrible is genetic, it doesn’t stop with my mom. In our family, Momis at least the third generation inflicted with FTD. Please help me make it the last.

My heart goes out to the over 15 MILLION Americans that are caregivers to dementia stricken loved ones. If sharing Mary’s story helps others going through this, and lets them know they are not alone, then it’s worth it.

From Mary, Marge and all of the Hall's/Flanagan's... ~thanks~

NEXT POST:
 "Something is up with mom?  The first signs" .....