Penny for YOUR thoughts


Today is November 21st, 2016.

Today my mom, Mary, would have been 65.

She would have been married to Dad for 38 years

She would have 7 grandchildren. 

She probably would still be rocking a perm hair do and wearing ugly Christmas sweaters (but not as a joke, but because she actually liked them…)

She would have my dad in the dog house right now--for buying yet another car (that doesn’t run,) for yet another project that he won’t get to anytime ever….

 

Instead, she passed away at only 61.

Instead, she was married for 34 years, 11 months and 2 weeks.

Instead, she met only 4 of the grandchildren.

Instead, she lost her ability to read, write and speak, beginning at the age of 56.  She went from being a nurse to having 24-hour care in just a few years.  Eventually she became wheelchair bound and then bedridden.  She lost her ability to eat and swallow and our family had to make the decision to let her go….



On March 13th, 2013, Mom died from the conditions of Dementia.  Frontotemporal Dementia (FTD). 

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Confession:  When I opened my tablet to write this post for Mom's Birthday, I was in conflict.  I wanted to outpour how much I miss her and all the awesome things about her.  It's so easy to talk on the positive attributes and make someone a saint after they've passed.  But what's important is not to remember her as a saint; but to remember her as a human.  As an imperfect mother of 5 with flaws and mediocre cooking skills (sorry mom, you made a great lasagna but let's not embellish).  And she certainly was not attention seeking.  Mom never wore more than basic blush and lipstick.  Mom dressed simply and sought satisfaction in life through actions and putting others first.  If she was alive today, she would have already assessed which of her adult children needed her the most for Thanksgiving preparations (all 5 of us now live in different states- PA, VA, MD, CA, and AZ) and she would already be there, tending to the grandchildren, making pies and just knowing what needed to be done to lessen the stress-- but none of it would not occur without some tension and arguments-- that's family, that's human nature. 


Helping and loving was easy for Mom, it was the only way she knew.   



Deeds not words shall speak me.”  -- her mantra  in her high school yearbook and defined how she lived.




And so, this year, instead of listing off everything that was amazing about her, let’s take her lead and give forward.  It’s time to start fighting again.  Time to plan another benefit for a cure for dementia/for FTD.  If you’ve followed this blog, you know this will be the third fundraiser.  You will also know the basics of “frontotemporal dementia” (FTD).  For those that are new, FTD is a dementia that strikes most between ages 40 and 60.  My family has the genetic form (linked to protein TDP43) and each of us risk (50%) having already been born with it and are now just biding our time and praying for the best.   

So, Mom, for your 65th birthday, we are going to keep fighting for your family, for your grandchildren, for the thousands and millions of others that have been impacted by dementia.   




To kick off this year’s planning here’s a (1) few quick facts for those new to this blog, (2) a quick list of help we’ll be seeking in the future, (3) and for today - a survey monkey (2 minutes of your time) that I’m hoping you all will fill out to help us plan the event.




 Quick Facts:

·       Did you know that dementia takes more lives than breast cancer and prostate cancer combined?  (not knocking on either of those, just noting the statistic)

·       Did you know that dementia (including Alzheimer’s) will cost the nation over $230 BILLION by the end of 2016?

·       Did you know FTD represents an estimated 10%-20% of all dementia cases. It is recognized as one of the most common presenile dementias (meaning it occurs in a younger population).

·       And finally, on a personal level:  Do you know anyone that has had dementia?  Alzheimer’s? ALS?  Parkinson’s?  FTD?



Some of you knew my mom well.  Some of you may have never known her, but you answered yes to knowing someone with dementia.  This disease impacts nearly everyone. Wouldn’t you want to help/honor your loved one too?



Over the next few months, my family and I will be looking for

·       Businesses to sponsor the event

·       Items/baskets to raffle off (to give you an idea, last event we raffled NFL, NHL and MLB tickets, kayaking trips, beer, wine, jewelry, lottery tickets, kids toys, gifts cards, etc.….A full list of ideas and suggestions will be posted soon)

·       Event planning/Preparation support

·       PR help – help us get the word out please

·       Event volunteers



But for today: 

SURVEY MONKEY…TWO MINUTES of your time to answer the 10 survey monkey questions.  The intent of the survey is to understand what you would like to see at a Dementia Benefit.  This year, it will be hosted in California but we’ll be doing other fundraising (like lottery tickets and sponsorships) leading up to the event, so if you’re remote, you can still help!!


The link to the survey is at the BOTTOM of this post.


To learn more about where the proceeds go, I’ll refer you to the last post that explains who Bluefield Project is, and what benefits have already occurred thanks to your support and fundraising. 

Click on “The Positive Impacts of Your Donations Explained.” 



In closing,
To all of you:  Thank you for reading and thank you for your responses in the survey (link below).




And Mom – to you, this is a promise to not forget and to not give up….



Even if you’ve forgotten my name,
Or the nickname I always called you.
Even if you’ve forgotten you loved me,
I will just remember for two. 


I know you don’t know who I am,
When I bend to give you a kiss.
You might not shed a tear,
For the things that you will miss.


But I will miss every moment,
All the th8ings we planned to do.
And I promise with all my heart, Mom,
I will always remember you.
(written by Virginia Pasqurelli)


Happy Birthday, Mom.  We all miss you. 



November 21st 1951 –  March 13th 2013
Mary Margaret Hall
Beloved Mother and Wife



SURVEY MONKEY:


SAN DIEGO EVENT - click here -- https://www.surveymonkey.com/r/FC8YNLY



PENNSYLVANIA EVENT - click here -- https://www.surveymonkey.com/r/SPHN5VX






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