Firsts.

"Eg" (Emmagene/grandaughter, 3) hunts for Eggs!

Josh (grandson, 19mts) dyes his first easter egg with Mom (Megan)

Lily: "Emmys!! what you got in there?"

Every moment is a first.  But then again, every moment is a last. I could go on about how this is the first Easter in 35+ years my dad is not with my mom.  Tomorrow - April 1^st - is their Anniversary-- their 35^th Anniversary.  Tomorrow, for the first time, my dad will not celebrate with her. 

But this Easter is also, for so many, your child’s first Easter or first Easter with your wife/husband or maybe the first time you've hosted the dinner.  First time in a new house?  Or on the other end of the spectrum, first time you had to work this holiday and could not make it home or to the family gathering.

For us, it is the first Easter since Mom passed.  But yesterday was the first March 30^th we spent without her and tomorrow will be the first April 1^st since her passing.  My cousin, Shelli, recently lost her 43 year old husband to brain cancer.  It is her first Easter as a widow.  But his organs were donated and saved 6 lives.  Six people will, for the first time in a long time, have hope this Easter because of Shane.  SIX!!

“Firsts” are what you make them out to be.  Do I miss Mom today?  Absolutely.  But I missed her yesterday and I will miss her tomorrow.

Today is my first Easter spent in Texas (visiting, not living here).  I went for a run in shorts and a t-shirt for the first time outside since I started training for the marathon.  I had pizza for Easter dinner for the first time, ever, because we waited too long to get to the grocery store and now it is shut.  Heidi spent her Easter with our 19 month year old nephew for the first time and watched Josh look for Easter eggs for the first time.  Roth and Christina watched their 3 year old, Emmagene, and 20 month year old, Lily, look quizzically at the empty egg carton in the fridge and ponder what the Easter Bunny did with all the eggs, for the first time.

And so, I will eat a Reese’s peanut butter egg this holiday and smile; it was Mom’s favorite.  And I will reminisce about how much I looked forward to and loved to make homemade chocolate candy with her….candy molds,  chocolate covered pretzels, raisins, Buckeyes, chocolate covered coconut... if you could dip it in chocolate, we did.

But I will continue to live.  I enjoyed my pizza because she would have laughed at my inability to plan and then she would have made me a ham and mashed potatoes next time I was home to make up for it.  I will continue to have firsts and appreciate them because that’s what mom would have wanted.

Even if this Easter was the same tradition as last year and you feel it was routine, it wasn't.   Every moment is a first. 

So I challenge you all to look around and appreciate those firsts.  Because those firsts are also lasts.  Nothing goes according to plan, so if people were late for dinner, or the stuffing did not turn out the way you wanted, or your mother in law or aunt got on your nerves- again….who cares.  Let it go.  Enjoy where you are, what you have, and even what you don’t have.  Breathe it all in.  Look at the person next to you and the people you love and appreciate them.  Because you can.

To all of you:

I wish you a very Happy Easter/Passover/Just another Sunday.

April 1, 1978 - first days as husband and wife (Mary and Dan)

Easter 1980 something....

Easter 1993 - Nanny and Grandpop's, New Jersey

Another photo in the dining room (have you caught on to the trend yet??) - Easter 1994?

Looks like we moved to the living room this year for the Easter shot!

1999 - Home - Last year we'll all fit on the couch together (L-R Heidi, Betsy, Tina, Adam, Megan)

First time on a bicycle built for two - Mom, Heidi, Tina, Megan, and Me at the beach . All taking turns and enjoying the sun!

2001, Mom visits her first daughter at college.  

May your year be full of many firsts.  :)

Post 4: The Beginning – Part II- No Turning Back

(Written by Heidi): 

Jan 2008, Mom goes to the doctor for the first time. At the time I thought it was out of fear that they [mom and dad] waited so long to go to the doctor’s. They both thought it may be Alzheimer’s, since my mom’s side of the family has a history of it. Both my grandma’s mom and brother had passed from Alzheimer’s, or at least what they were diagnosed with at the time. From January through May of 2008 my mother received several tests trying to determine why she was quickly losing the ability to speak the words she wanted to say. I tried to not think the worst and that it was only menopause, however I realized how serious the problem was, when I talked to my mom’s friend from work.

I remember it was Greek Week and that night we were in the gym for the basketball event at Robert Morris University. I was cheering on the fraternity brothers with my sorority sisters when I noticed my phone ringing. It was my mom’s coworker and friend. She had called to discuss the plans for her daughter’s wedding I was filming that coming summer.

While on the phone she said, “Heidi, I don’t want to go off topic but the ladies at work and I am worried about your mother. She usually is a sharp person, always taking charge, and now she is having trouble saying particular words and getting her thoughts straight. For example, last week it was her anniversary, and I asked her how long she has been married and she couldn’t figure it out.”

My initial reasoning was “Well, she has been married awhile so it’s probably natural to have to stop and think about the exact number of years.” However this year was their 30th wedding anniversary and even my father, out of all people, remembered that. We (the family) already knew something was wrong, that’s why she was getting tests done, but this phone call carried a lot of weight. Realizing other people were beginning to notice made the situation feel so real all of the sudden. We could not turn back, we could not deny anything anymore.

"Mommy, my feet hurt..."
"Well, put your shoes on the correct feet next time." x

Once I got off the phone, I just wanted to cry.  We still had no idea what was wrong, but we could no longer pretend or hope it was menopause, lack of activity, exhaustion – there was not a simple explanation; that we now knew.  The issue might be worse than I could image. 

I put my phone away, posed a smile and joined my friends.  That night was one of the first, and the first of many, good hard cries that would I would fall asleep to.

~~A Note to the readers~~ - Marathon Update

Marathon Update - (from Betsy)

To all those reading this blog that run have ever run a marathon (including you, Heidi), or even considering running one:

You are insane.

Period.

Today I ran my first 20 miler.  Longest distance I’ve ever run in my life.  I will admit, the first 6-8 miles were enjoyable.  The first 4 were downhill, and then the next few were crossing over bridges downtown with breathtaking views.

And then I realized I was not even halfway through. 

In regards to preparation, I stuck to the script… I had a hearty chicken and pasta meal about 430pm the day before.  I drank plenty of water and got a solid night’s sleep.  I had toast, one egg and honey for breakfast with some tea.  I brought my camel back on the run along with jolly ranchers, cough drops (I’m fighting off a cold), and some very foul “energy” shots.  (I’m sorry, “berry” flavored is not a misconception, it’s a flat out lie.  Anything that claims “1666%” of your daily value of B12, no calories, and no sugar” screams – awful.  I’m pretty confident rubbing alcohol has a more pleasant flavor this “berry flavored” energy micro-shot (no, I have not tried rubbing alcohol, just trying to find a like product).

Oh, I also would like to note I dressed appropriately for the 38 degree run (despite the fact that it is technically Spring and nearly April).

I followed the script.  The run was long, tiring and not so sure any more about this “runners high” thing you all claim occurs on these long runs.

People say that if you can run 20, you can run 26.  I promise you, I was excited to stop at 20.  I watched my gps with intensity, willing it to count faster…19.95…19.96….19.99…20miles DONE!  STOP!

Mom – Heidi and I are running this for you.  We love you.  But I will graciously go back down to the half marathon next year.  I’m going the whole way for you this year, on Mother’s Day.  I know you’ll be there to help so I’ll keep training and get ready.

But I’m not gonna like it.

To the readers – anyone that is on the fence about donating, please help Heidi and I reach our goal and make these agonizing runs filled with rubbing alcohol shots disguised as “berry energy drinks” worth it.  Even 50cents will do.  Every penny counts. 

Thanks J

Post 3: The Beginning– PART I- Acknowledgement.

(Written from the persepctive of Betsy)

In hindsight, there were earlier signs.  Dad said he started noticing things were “off” six-eight months prior to the holidays, but was waiting to see if anyone noticed.  Heidi noticed that Mom had become more irritable about small things, but decided it to be menopause – Mom was 56 after all.

For me, it was July 2007 when I first noticed (but only in retrospect; realization of what I was seeing did not come until Christmas).  Mom helped me move out of Penn State and into Baltimore.  When we drove down to Baltimore to apartment shop I was constantly frustrated.  She seemed to just not be listening to me.  I was driving and she was reading the directions.  She would say left and when I went left she would frantically say, “no the other way!”  Or when I asked her what she thought of an apartment, her opinion was generic and lacking to say the least.  I was nervous.  I was leaving college and shopping for my first “adult” apartment.  I had spent my entire life leaning on my mom under stressful situations, and she always leaned back, took charge and made things right.  But this particular weekend, mom was more of a stander by than my rock.  I got so angry at her.  I yelled, and she didn’t yell back.  I’ll never forget her sitting in the car next to me, nervous and unsure.  And over the next few months, I became frustrated again, on different instances but all for the same reason.  I felt like she wasn’t listening, her responses were not what I needed when I tried to lean on my rock. 

I’m so sorry, Mom.  Retrospection comes with guilt and I will apologize for the rest of my days…

Summer 2008, picnic in NJ, Physically, Mom looked just fine.

 

It was now Christmas of 2007.   By now, we (the 5 of us) were scattered between Arizona, York PA, Virginia, Maryland and Robert Morris University.  We were all back at Mom and Dad’s for the holidays.  The earlier signs – moments in July, August…Thanksgiving… when we individually had each raised an eyebrow, were coming to head now.  We are all home at the same time for once and all of our stories were colliding.  We cant ignore what is in front of us any longer.

Adam found envelopes Mom had addressed and had scratched the zip code out and re-written it. 

Heidi watched Mom call to make reservations for dinner and she was having problems spelling our last name – HALL.  But it wasn’t like she forgot how to spell it, it was like she could not say the letters her mind wanted to say. 

For Christmas Eve dinner, we always had Lasagna.  Christina walked into the kitchen as Mom was finishing up.  Mom was looking at the dish, knowing something wasn’t right.  Tina saw the pot where the noodles were boiled in her peripheral and walked over to confirm what she thought she saw – the noodles were still in the water.  Mom had put the entire lasagna together and forgotten about the noodles.

The whole holiday season my mother was having problems with finding the right words to say and getting names mixed up.  It was common for my mom to mix up our names, but everything else was not right. 

And finally, it was time we acknowledged something was going on.

We pulled Dad aside and he admitted he had been noticing things as well but was waiting for us (the 5 “kids”) to come home and see if we noticed anything. 

I don’t remember all the details of when we talked to mom, but I remember Christina gently showing mom the envelope with the zip code scratched out more than once.  I remember mom crying softly and saying she didn’t know what to do.  Tina gave her a hug and said it could have been a mini stroke, it could be anything and we might be able to get it fixed, but the first step was to see a doctor.  Mom nodded in agreement.   

Post 2: A glimpse from the Past: “A Journal entry from my (Christina) freshman women’s writing class 7 November 2001:

“Perception of Mom”  re-titled  “Hind-sight 20/20”  (written 7 Nov 2001)

Mom. Such a tiny word for such a big person, job. My mother gave up her job at  twenty-nine to raise me and my three sisters and brother.  She works as a nurse at an elementary school and loves it. She loves knowing that people need and come to her for help. 

Sometimes I think that she does not feel wanted or needed in my house, maybe it’s that we do not understand her, and I sometimes certainly do not. But that does not mean that I don’t care. But how can I make it evident? Words and actions make such a difference, I know that a smile and a telephone call for no reason mean more that a letter of a thousand meaningless words. I still want to say something. She is so sad lately and I worry that I will lose her before it is her time. That scares me so much.

Making phone calls and writing letters, though she is a matter of away compared to so many other moms. So many people say that their moms’ are their best friends, three sisters are enough. No, I need a mom. Someone to tell me that I am being stupid or ridiculous, and someone to be proud of me and brag. Not too many people do that for me anymore. Though she may not always “get it;” Mom pretends to understand everything I say. She makes me feel special.

She is so important that I think about her every day, and smile when I see something that she would do, or see someone with the same hair. I love to sit on her lap and giver her hugs for no reason. That’s what moms are for and what I want to be.

I tell mom every day that I love her. No need to, she knows it, but someone has to.

There should never be a day that is not called mother’s day, they deserve that much, don’t you think? So I just wanted to say thanks mom, maybe one day I will give this to you.  You don’t say much either, but you always seem to say just enough. I can feel that you are here, even though you are not. I want it to be like that always.

Remember when we used to fight. I don’t even remember why. I think you made me mad a lot and I made you mad too. But that’s all over now. I don’t to know else to say but that you are one of those amazing women and do something for yourself one. You have to because when you show us that you can do it, we will too, everything good has something bad, but at some point the bad* will outweigh the good and then you know that it is time. Don’t feel sorry or bad because you have given us so much, and we or you will never take it back.


……A follow-up Six years later - 3/15/2013……

Well, I’m a mom now. I have two daughters, 21 months and almost three. Mom (Mary) was there to hold Emmagene (my oldest) a month after she was born in late April 2010. At that time, Mom’s understanding and use of communication was significantly decreased; she had a keen sense of perception and awareness of others. She couldn’t travel alone, Heidi came out with her.  I remember feeling a sense of absolute sadness, because I knew that this moment would only exist for my daughter (she was the first grandchild). Heidi, who was still in school at the time, told me of she and mom’s shopping adventures, buying baby clothes and toys. Mom would pick out just about anything.  By this stage, she understood they were shopping- that it involved baby clothes, but that’s where it ended.  She could not understand anymore sizes, or look at two shirts and make a decision on what she liked better, or that you cant just pick up tiny piece of clothing in the store in the store.  She wanted to help so desperately. 

“Here, and here, or here.”  She would say as she took item after item off the racks and handed them to Heidi.  Heidi would smile, take them from mom, keep a few and discreetly put the excess back when Mom was looking the other way. 

I can still hear my mom’s voice as she held my tiny baby, counting those fingers and toes, one two three four five, then she would look at me and smile as if to say…they’re all here.  Mom couldn’t find many words but love, numbers and a million gentle kisses on a tiny face. Mom reached her arms out for Emmagene at every chance, wandered by Emmagene’s crib just to take a peek at HER grandbaby,  and adjusted and readjusted the swaddle. 

I remember my husband being very cautious when my mother was with Emma, he watched my mother like I watch my children now at the park. I remember her reacting as if she knew that he didn't quite trust her and I could almost sense (or decided) that she didn't understand why he wouldn't trust her.  His feelings were sound. She was having difficulty with remembering to wash her hands, cover her mouth, all of those interpersonal skills that were learned in grade school were slowly slipping away. I remember wanting her to be the person she used to be, my heart aching for Mom—even though she was right in front of me—but knowing  these were now the moments we had to hold on to and cherish.

“One, two, three, four, five….” Mom is counting Emmagene’s toes again and smiling with pride.  I will treasure these moments forever, because eventually we will look back on these days—the early days of this dreadful disease, and realize they were the “good ones”.   

During my mom’s visit, I could tell that she wanted to help, to be a part of the process. It hurt inside because I needed her, but roles had already begun to reverse and she needed us to take care of her. As the years have passed, I have wanted to pick up the phone a million times and share my children’s milestones  and the trials of parenting, first words (always “dog”), first steps, blown out diapers, being pregnant again (and so soon).

Her visit to see Emmagene was the beginning of an understanding for me that my mom would only be a by-stander for most of my children’s lives, not by choice, but because a terrible disease was taking her from us. There is not a doubt in my mind that my mom would have experienced each of those milestones, if there were a means of treating and preventing this disease.  My mother’s relationships with my children and me as a mother are not at all what I had anticipated 10 years ago. I can only hope that my relationships with my daughters are also not stripped and shortened by FTD. The only hope is a cure, and there is hope for a cure but cures need research and research needs money. Every penny counts. Thank you!

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" .....