A Day in the Life of Bev, Her Story, Part 16!

This is the insert update in the invitation to the Year 10, 2019 annual fundraiser!

 

Greetings Friends and Family: This year’s celebration is our tenth anniversary of the annual fundraiser!  To give you an overview from Bev’s start with HD, we prepared this timeline:

 

1998: Bev learned that her biological father was in the later stages of Huntington’s Disease. She got tested and received the dreaded news she is gene positive. She lived in secret with this for 10 years, as symptoms started to appear. 

 

2003-4: Katie and Ryan were born.  More disease symptoms became apparent.

 

2009: Bev no longer wanted to keep the disease a secret. She and Bob chose to have a “coming out” party, inviting 50 friends and family to receive their announcement. They served beer and chili in their basement and educated the group on HD. A weight was lifted off Bev’s back!  Bev asked friends to help in the fight against HD and the first steering committee was formed for a fundraiser.

 

2010: The first event was held in April and 200 people attended, raising an amazing $80,000 towards finding a cure! Since then, the event has had a theme each year, drawing 150-200+ attendees per gathering!

 

2013: Bev enjoyed a “Bucket List” girls’ trip to Ft. Myers, Florida!

Bev’s symptoms worsened and it was decided that she could no longer drive. Bev’s reply, “Losing my license in my forties makes me feel horrible and frustrated. This is not something that happens to people my age. I long for the time when I would just jump in the car and take Ryan to DQ for an ice cream.”

 

2014: The Hartig family hires drivers and helpers to assist Bev through the week. She still enjoys playing tennis with her friends, lunch dates, and doing all the grocery shopping for the family.

All funds raised to this point were donated to other HD non-for-profits, but in order to send all donations to research for a cure, “The Bev Hartig Huntington’s Disease Foundation” (TBHHDF)  was created.

 

2015: The Hartig family participates in the Geist 5k, as Bev walked the entire event and Katie rode in the stroller pushed by Bob!  Bev is now taking two naps a day to maintain her energy. Her gross and fine motor skills decline and she had her first major fall, cracking her head open.

 

 

2016: At the April “Hero”-themed event,  TBHHDF hit the $1 million dollar mark of cumula

 

tive funds raised to date for research for a cure to this disease! Bev enjoyed a “Bucket List” trip with friends to Aruba!

 

2017: Bob and Bev traveled to Aruba in October to celebrate 20 years of marriage!

The disease began to rear its ugly head in many ways. Word pronunciation and articulation grew difficult for Bev. She has a sincere fear of falling or choking, common symptoms with HD, and she needs her food cut into small pieces or blended so she can best chew 

 

and swallow.

Bev’s chorea (sharp movements) are more pronounced and she receives more comments from strangers in public such as, “Are you ok?”, “What’s wrong with you?”, or “Are you drunk?’  Falls become more frequent in her day-to-day living.

 

2018: Multitasking and higher-order thinking skills become difficult.  It takes her 90-120 minutes to get ready in the morning. She can no longer play tennis with her friends.  She is emotionally challenged with the impact of the disease, as depression and loneliness set in. She reports, “My gre

atest challenge is having to step back from my role as a mother and allow others to assist them and me.”

Bev turned 50 in July and enjoyed “The Summer of Bev”!  Loved ones had parties for her and Bob hosted a grand celebration, drawing many friends and family.

 

2019: Bev needs more hands-on assistance to maintain her balance and walking. She falls frequently and needs help getting ready daily.  Holding a conversation is difficult. She sleeps on the main floor to avoid using the stairs.

She and Bob take weekly “date nights”.  Bev has an amazing positive attitude, smile, and offers firm hugs. She genuinely asks, “How are you doing?” and family members report she never misses a birthday card or phone call!

 

Bev’s story is tragic, yet common for those individuals and families battling this disease. She and her family are using it positively to educate others, to fund research, and collectively believe in hope for a cure!

 

We thank you for your participation in our lives and TBHHDF to this point. To date, $1.5 million has been donated by YOU to fund research for a cure to this disease.  We are eternally grateful for your generosity and look forward to having you celebrate a grand event with us on April 27th at 7PM!

 

In great hope to cure HD,

-The Hartig Family

A Day in the Life of Bev, Her Story, Part 14!

As written for the 9th annual BHHDF event invitation for April 29, 2018:

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Greetings Friends and Family:

Each year we sit down with Bev to get an update to share with you on her year and progress as she battles HD.  This disease is progressive and we thank you for being part of her story!

Huntington’s Disease has been in Bev’s family for the past 19 years, when she learned of her biological father’s then battle with the disease.  Soon after, in 1999, Bev was tested and learned of her positive results with HD.

Currently, the disease is progressing in Bev’s life.  She can no longer drive and needs assistance from drivers and caretakers through many parts of the day.  She is still very independent for self-care tasks, but it takes her a very long time to get ready and to start her day.

Some changes in the disease from the last 12 months include more challenges with word pronunciation and articulation.  At times it can be hard to understand what Bev is saying, as it relates to an increased loss of control and communication between the nerves and muscles all over the body, including the tongue.

This also has an impact on Bev’s ability to chew and swallow foods.  She needs her food cut or blended into very small pieces, so some of her daily regulars and easy-to-chew items include smoothies, cereal and pie.  She reports that she eats pie every day….pumpkin or apple are her favorites!

To see Bev, her movements, called “chorea”, are continually progressing. She cannot stand or sit still and her arms may uncontrollably move quickly across or above her body.  This has an impact on her balance and gait and her risk of falling is an ongoing concern.  

Due to all the moving and imbalance, it’s not uncommon for people to approach her and ask if she is intoxicated, as was the case at a recent school choir concert.  Bev’s hope is that people will have more compassion, less judgment, and an open mind to others who may be battling slow, silent diseases like hers.

Bev reports that HD is most trying emotionally as well.   As she wakes up daily, her very first thought is the reminder that HD is eternally present.  It’s not going anywhere and this is going to be a hard day. And the days will get harder as time passes.  

Bev’s main priority is to be up early with her children as they start their day. She wants to be present and in every part of their lives while she still can.  However, her biggest challenges beyond the physical aspects are having to step back from her roles as a mother and allow other people to step in to assist the family.  

On the other hand, she will say that her greatest blessing to this point to assist her with dealing with HD is her ability to openly talk about her challenges and limitations. She no longer wanted to put HD “on a shelf” and worry about it someday.  She decided to confront all aspects of it head on and living this out loud is helping her as she progresses along this journey.

Bev’s ultimate hope is that she will be part of science and research finding a cure for HD in her lifetime.  Now in our ninth year of the “Bev Hartig Huntington’s Disease Foundation”, we have successfully raised over $1.4 million and funded eight research programs.  

 

With your support, we will continue to educate, fund and believe.  Thanks to you, Team Bev, for your ongoing support and generosity!

In great hope to cure HD,   

The Hartig Family

 

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Keep in touch with updates, pictures, and ongoing info about HD on our website and FB page:

 

Facebook: fb.com/TheBevHartigHuntingtonsDiseaseFoundation

Website: bevhartighuntingsdisease.com

 

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Writers: Mindy Irish and Pam Barr

 

A Day in the Life of Bev, Her Story, Part 10, as written for the annual BHHDF Invite!

2016 2

 

Greetings Friends and Family:

Our seventh annual Bev Hartig Huntington’s Disease Foundation event is coming soon!  Each year we will be sitting down with Bev to update you on her progress, her story, and share with you exactly where she and the family are on a daily basis as they battle this disease.  Bev is no longer able to write her own story, but she is able to participate in an interview, as shared from a February 8, 2016 interview below:

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-Bev, please tell us about a typical day for you:

Bev-Since Bob travels a lot, we have paid assistants that come every morning and evening to help me get the kids ready for the day.  The person who helps me in the morning puts most of their attention on Katie, which enables me to devote a lot of my time to Ryan before he gets on the bus.  I like to be awake with the kids, help with breakfast, and enjoy some down moments sitting with them on the couch.

 

It takes me about two full hours to get ready to go anywhere.  My gross motor skills are impacted by chorea, which are jerky involuntary movements that affect my whole body.  They’re very noticeable now and you can tell my disease is progressing.  However, I’m still able to manage, but it does slow me down.  My fine motor skills are the real challenge.  Zippers, buttons, shoe tying and putting on jewelry are the areas I need daily assistance.  I still enjoy doing my own hair and make-up, picking out all my own clothes, and dressing myself.  I just have to allow for ample time when planning to go anywhere.

 

I also have two paid drivers that come three days a week and transport me to run errands, make appointments, or offer companionship if we want to go shopping or out to lunch.  I enjoy several days a week with friends who sign up to take me to lunch or shopping dates or girl time around town!

 

The doctors have always asked me about my sleep patterns and until recently I have been sleeping great.  They said that when my sleep patterns get interrupted, then the disease will be progressing aggressively.  Last night I had a horrible night’s sleep.  I had tons of anxiety and I could not get my brain to let down.  This worries me and I’m really concerned.

 

-What have you seen as the biggest changes in the last 12 months?

Bev: There is no cure for this disease.  We can only treat the symptoms.  So that means that my medication has increased because my symptoms are changing and progressively getting worse.  My balance has seen the most decline, so I’m falling more often and I fell again just this morning, actually.

 

I tend to have the most trouble coming down the stairs.  In late 2015 I had a horrible fall where I was going too fast and I missed several steps in our back hall and flew into the kitchen island, hitting my head on the granite counter.  I had several stitches in my head from that fall, and on a day-to-day basis, I’m usually covered with quite a few bruises and Band-Aids!

 

-How is your mindset?  You know what’s coming.  How do you cope with this?

Bev: I worry everyday about leaving my children and battling anxiety is my greatest hurdle.  I know I will not get to see them grow up and I will not be here for them when they need me as they get older.   I know what’s coming, the dementia and mental changes.  Early on I went through all the emotions: anger, depression, and anxiety.  I grieved the loss of the future and many days I spent my whole day in solitude, frozen by what was to come.

 

Then one day I decided to start living.  Once I decided to open up about my disease, I no longer had to hide it and bear this burden alone.  I tell my friends that I’m going to put HD on the shelf today because I’ve got a life to live!   I don’t want to miss any moment with my family or friends because of this horrible disease.  This disease does not define me and I’m choosing to make the most of each day that I still have!

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Interviewers’ Notes: 

The smile on Bev’s face and the joy she has from knowing that this IS her life and she is going to make the most of it is a blessing we received that day.  HD is a part of her life, but it is NOT her life.  She loves her family, her friends, and she lives each day as each one of us should….to the fullest.

Today is a gift and tomorrow is no guarantee!

 

From the Hartig Family-

We can’t thank you enough for your ongoing generosity and support.  We knew at the time of the diagnosis 17 years ago in 1999 that we wanted to bring purpose to all this pain.  As a team, we CAN and WILL find a cure to end this aggressive disease for generations to come.  Thank you, Team Hartig!

 

In Hope to cure HD,

 

The Hartig Family

 

 

Keep in touch with updates, pictures, and ongoing info about HD on our website and FB page:

 

Facebook: fb.com/TheBevHartigHuntingtonsDiseaseFoundation

 

Website: bevhartighuntingsdisease.com

 

Interview by Mindy Irish and Pam Barr

 

6th Annual BHHDF Fundraiser to cure HD, April 25, 2015!

Decor collage 2015

The Bev Hartig Huntington’s Disease Foundation 6th Annual Fundraiser

 on April 25, 2015 was a HUGE success!  View and purchase the photographer’s pictures HERE!

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The research to cure HD is well underway!

You can watch this excellent video update on this link on YouTube HERE 

about the research group that is making progress using the funds generated from the BHHDF team efforts!

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Bev in her gorgeous dress and smile!

Bob and Bev as they welcome their guests and give an update on the Foundation.

 

  The Emcee made an all-call for donations to the BHHDF and Bev was making her way around the room to hug the generous donors!

Attendee collage 2015

A Day in the Life of Bev! Her Story, Part 10!

This is the update that is included in Bev’s invitation to her annual event

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Greetings Friends and Family!

We are so excited to see you again soon at our sixth annual fundraiser
event! We would like to provide you with an update on how HD affects our
lives. My intention and hope is that by making my daily life real and by
shedding light on the magnitude of this disease, that you may support our
family throughout the year and help spread awareness about the presence of
Huntington’s Disease in our community.

I see my neurologist twice a year and each time she adjusts my medication.
What is prescribed helps me manage depression, mood swings, anxiety, and
some of my movement control, but even the fine motor task of closing a
Ziploc bag is something I can no longer do. My handwriting has gotten a lot
worse, but I can still use the computer (and have no problem doing online
shopping!).

One of my most frustrating life moments was that in the summer of 2013 my
ability to drive ended. I truly dislike having to rely on other people to function,
but I’ve realized it is just what I have to do. I am fortunate enough to have
several groups of people to walk alongside us in this season of our lives.
With Bob’s travel schedule and my changing condition, I need reliable help to
run our household and assist us in taking care of the children. So I have six
regular people who come into our home on a set schedule and I like to call
them “Team Hartig!” I also have a second group of people that help me as
drivers and companions on a daily and weekly basis to enable me to live life
as usual.

With their help, I’m still able to get out of the home about three days a week
to grocery shop, run errands, attend the kids’ events at school and play
tennis with my friends. Although sometimes I fall or miss the ball, playing
tennis on a weekly basis has given my body the physical activity it needs and
my mind the mental challenge and social interaction it desires. As a family
we are also planning on participating in the 2015 Geist 5K, too! Bob will
push Katie in the stroller, I will run/walk and Ryan will lead the way. This
disease may be progressing, but I’m working with all I’ve got to stay ahead of
it each day!

When I do prepare to leave the home I need about two hours to undertake
the process of getting ready, putting on my make-up, and doing my hair. My
motor skills have degenerated and it just takes me additional time to do the
simple tasks that we are all used to doing. While my gait is unsteady and my
arms sometimes have a mind of their own, I’m fortunate that I don’t fall that
often and have not sustained many injuries. The doctors tell me that those
with HD usually die due to a choking or falling incident, and I’ll be honest and
tell you I do fear that. My biological father had HD and he died after
receiving a head injury from a fall. I’m grateful that my episodes and injuries
so far are minimal and I am truly making the most of the gift of today!

My energy and mental clarity are progressively changing with this disease.
I’ve found that a morning and afternoon nap helps me to recharge and be the
best I can be mentally and physically later in the day for Bob and the kids.
I’m Bev, Wife and Mom and ultimately that is what is most important to me!

My main message to you is that this disease is devastating and I’m truly
shocked that in 2015 we have no proactive treatment and absolutely no
cure. We are simply treating the symptoms and that needs to change. I am,
however, honored to report that as a team all of you helped us raise over
$150,000 in 2014 that went directly to HD research! In November we
partnered with Oregon Health Science University (OHSU), specifically Dr.
Jodi McBride at Oregon National Primate Research Center, and their efforts
are well underway to work towards finding a cure. Additionally, our
foundation is bringing awareness and education to the effects of HD!

Our family can’t thank you enough for your ongoing generosity and support.
I knew at the time of my diagnosis 16 years ago in 1999 that I wanted to
bring purpose to all this pain. As a team, we CAN and WILL find a cure to
end this aggressive disease for generations to come!

In Hope to cure HD,
Bev for the Hartig Family

PS: Please make sure to like and select to “get notifications” from my
Facebook page for ongoing weekly updates into our research progress and
tidbits about our family throughout the year!

facebook.com/TheBevHartigHuntingtonsDiseaseFoundation

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Stay tuned every couple of months as we update on Bev’s life as an Overcomer, living for the purpose of using her story to impact and change lives for the future!  If you desire to contact her, you can reach out to her on Facebook HERE or by email at bevhartig@hotmail.com