A Day in the Life of Bev, Her Story, Part 17!

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Greetings Friends and Family:  The 2020 event is our 11th annual celebration and much has changed since our last update.  Thank you for being such loyal friends and supporters and for your support in this journey to cure HD! BevBob 22020

 

A few notes about this update: Bev is no longer able to participate in the interviews due to the progression of the disease, so this info is provided to us by Bob.  Before we talk more about the presence of the disease, it’s important we get a reminder about Bev’s life before HD became such a focal point.  This is who HD is robbing and who Bev really is.  

 

Bob tells us, “Bev was a great athlete at many sports.  She was the house organizer and set up all our gatherings and social events.  She earned ‘Sales Person of the Year’ and was professional at all she did.  She was the life of the party and never forgot a birthday. She always wanted to be everyone’s best friend.”  She is also a loving wife and wonderful mother of two.  

 

Bev’s timeline with Huntington’s Disease (HD):

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. 

 

2009: Bob and Bev chose to have a “coming out” party, inviting 50 friends and family to receive their announcement.  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!  By 2016, 

TBHHDF hit the $1 million dollar mark of cumulative funds raised to date for research for a cure to this disease! 

 

2013: HD had progressed and Bev was no longer able to drive.  From that point, she needed a driver for anywhere she wanted to go.  This was one of the first steps in Bev’s loss of her independence.  

 

2018: Multitasking and higher-order thinking skills become difficult.  She is emotionally challenged with the impact of the disease, as depression and loneliness set in. She reports, “My greatest challenge is having to step back from my role as a mother and allow others to assist them and me.” 

 

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. 

 

Here we are in 2020 and the disease has made a devastating, progressive turn for the worse in Bev’s life.  These are the grim facts and this is the ugly, yet very real face of HD:

 

At a recent doctor’s visit with the physician who has followed Bev from the start, she asked Bev to make decisions while she still can regarding a feeding tube.  Bob is leaving it up to Bev, and at this point she doesn’t want one. However, statistics show that without a feeding tube, patients with HD run a higher risk of aspiration and choking.  Currently she can chew and swallow well, so that’s hopeful and encouraging!

 

Her balance is very poor and she can’t walk alone or she will fall.  When in public, she and her assistants use a wheelchair, but when she’s out with Bob, he walks her arm in arm.   Sadly, she has had multiple falls and has received 12 staples in her head in the last six months.

 

Bev’s anxiety levels were beyond control recently, so much so that she could not focus, sit still, or even concentrate to watch a TV show.  Her meds were changed to manage this and have slowed her brain down to keep anxiety at bay. Thankfully she has gained six pounds in six months….and still loves to eat cookies and pie!

 

She can no longer talk on the phone or hold a conversation.  She now receives weekly speech services for the life skill of, “My name is Bev.  I have HD.” She also receives occupational therapy to give her physical exercise and safe movement in her day.

 

How they are coping: There is full-time help for Bev with three shifts of assistants during the day.  The AM staff help with getting her showered and dressed for the day. The day help takes her to appointments and lunches with friends, and the night help assists Bev with dinner and the needs of the family.

 

With Bev, life goes on: They have weekly Saturday dinners out with the family and Church and brunch together on Sundays.

 

Bob tells us the hardest part: “She knows what’s going on and is fully aware of everything.  She doesn’t want the help, but she knows she has to take it. In all reality, she just wants to be herself, but she can’t….she is trapped in this body of hers.”  

 

The good news: Bob promised Bev she will stay at home and will not be put in a care facility in the later stages of HD..  When asked how she’s doing, Bev always, always smiles, hugs and says, “I’m great!”. Even in the darkest of days, she still chooses joy!

 

In great hope to cure HD,   ~The Hartig Family  

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

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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

Bev and HD are featured in the “At Geist” and “At Fishers” Towne Post Publications

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Did you read the story? Bev and the annual event are highlighted in a wonderful write-up about HD and the 10th annual celebration!
 
Visit the link below to view the story or check area stores and venues for a free publication. Thank you for the feature, Towne Post Network!
 
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Source:

A Day in the Life of Bev, Her Story, Part 15

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January 2019

-by Mindy Irish

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After we last wrote in April, the rest of 2018 was noted as “The Summer of Bev”!  She turned 50 in July and several parts of this year involved many special events to celebrate her.  She is surrounded by so many friends and family and her support system is deep. What a blessing! on so many levels!

Bev’s 50th Birthday Party, July 2018! 130 people gathered to celebrate her!

Bev celebrating her birthday with her family on the Jersey Shore, July 2018!

The celebrations are such a positive to the reality and strong presence of Huntington’s Disease that is impacting every area of her life.  In meeting with Bob and Bev for this interview, they report that the disease is steadily progressing, so the point of this writing is to be candid and open to the strong impact and devastation HD makes on individuals and families. 

Some of the more recent challenges for Bev involve the length of time it takes her to get ready in the morning and the difficulty it is to independently complete these tasks.  What would typically take someone 30 to 45 minutes, is taking Bev upwards of 90+ minutes, and finishing is often the hardest part.

Other progressions for the disease on more serious notes involve her daily movements (called chorea) and eating.  She is experiencing very unsteady gait and her balance even when standing still is declining. She falls often and is receiving more hands-on assistance to steady herself and walk from point to point.  

Eating is also a great concern because she can easily choke, even on liquids or softer textures.  Due to this, she gets nervous and chooses to eat less and less often in fear of choking, which then impacts her weight.

Bev with friends, Fall 2018!

Despite the disease progressing, Bob and Bev are doing life daily with a positive mindset!  They have a weekly “date night” when sitters are available for the children. Bev enjoys shopping for the family with her drivers and caretakers, and makes it a great priority to get up every morning with the children as they start their day and prepare for school.

If you’re around Bev and in her presence, she has a way about her that makes you feel very special.  Her family reports that she still sends birthday cards and makes routine phone calls to check in and chat.  If you come to see her or are around her at an event, she greets you with a huge hug, sincerely asks about you and your interests, smiles, waves, and won’t let you go until a goodbye hug is had! 

Take that, HD…..Bev is winning at this fight!

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Stay tuned as we update a few times a year 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

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PS: Please make sure to like and select to “get notifications” from her Facebook page AND our Instagram page for frequent updates into our research progress and tidbits about the Hartig family throughout the year!

facebook.com/TheBevHartigHuntingtonsDiseaseFoundation

https://www.instagram.com/tbhhdf/

www.bevhartighuntingsdisease.com

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

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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

 

2017 Research Funding Update

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With the help of TEAM BEV, we just funded 4 research projects from the funds raised during 2017.  Collectively as a team, your donations and support are helping scientists dive in to study this disease and look for a cure for generations to come.  THANK YOU!

  • $100,000 – to Scripps Research Institute – Matt Disney – They have a series of compounds that they believe are brain entrant that affect many aspects of HD by targeting the CAG repeat.  They are near a real breakthrough and will use our funds to see if the compound can indeed be a breakthrough to treat HD.
  • $100,000 – to Oregon Health & Science Univ. – Jodi McBride (we funded her in 2015) – They have 3 significant ongoing projects that are using the monkey models that were developed with our funding in 2015.
  • $100,000 – to Massachusetts Institute of Technology – Myriam Heiman – Study of two genes that they believe regulate the toxic accumulation of mutant Huntingtin in the brain.  Our funding would allow them to perform the necessary therapeutic test studies in mice.
  • $50,000 – to Glycoscience Research – Larry Holler – continuing to work to get GM1 to clinical trials (we funded them in 2016)

A Day in the Life of Bev. Her Story, Part 13!

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Interviewed: December 4, 2017 by Mindy Irish

It has been quite eventful since we last wrote.  Now in December, Bev has been busy preparing for the holidays and entertaining guests in their home.  Additionally, looking back since the spring, the family traveled for Spring Break to Anna Marie Island in Florida.  All four drove down from Indiana and took two caregivers with them to assist with care for both Bev and Katie.  They loved the time in the warm weather and the sand and a break from the Indiana cold!

Family in for Thanksgiving!

Another travel, Bev also attended a girls’ trip in May to Arizona, visiting Sedona and Scottsdale.  She traveled with her caregiver Pam and they were able to safely maneuver thru the airports.  Bev uses a wheelchair to get thru more chaotic situations and is grateful to be traveling and to have the help to do so!

Another big trip was on the agenda.  Bob and Bev celebrated 20 years of marriage by going to Aruba in October and enjoyed the trip and down-time together.  What a blessing to celebrate 20 years of marriage!

Celebrating 20 years of marriage in Aruba in October 2017!

Bev’s Huntington’s Disease is still progressing even though she is fighting a great fight.  Her medications are keeping up with her symptoms, but her movements are more pronounced.  Called chorea, she moves a lot when standing or sitting and her movements can be fast and jerky.  This impacts her balance and her walking, but she hasn’t taken many falls lately.  This is always a very big concern in the winter time, too.

In addition to more movements, she is also choking a lot more, even on water.  Choking is a common impact of the degenerative disease due to the change in the muscles all thru the body.  Foods have to be strategic and specially cut to help her chew and avoid potential choking hazards.  Since choking is more frequent, she tends to be eating less and in that, she’s losing weight and doesn’t have weight to lose.

Bev’s day-to-day systems have changed as well.  She is challenged with fine motor skills like opening Ziploc bags, meal prep, cooking, writing, and wrapping presents.  She uses talk-to-text when writing on the iPhone, but it’s often disjointed and hard to understand….all relative to what Siri picks up!

She has trouble with complex tasks and multitasking is extremely difficult.  Higher order thinking and reading are all being impacted, but Bev is still very optimistic.  To offset the challenge with the disease’s progression, she has found the Kroger “Click List” very beneficial when preparing her weekly grocery list.  It’s nice these services are available to make grocery shopping more feasible.

Attending a Colts game in the fall with Bob, her brother, and nephew.

Bev is still doing tennis one time per week and has also started a Pilates private lesson with an instructor and a friend.  She has caregivers that come into the home in the morning and evening and is also very thankful for three drivers that help her thru the week to drive her to errands, appointments, or just to grab lunch and shop.  Long live the shopping!

As we prepare for the Christmas season, the home is decorated and the tree is up.  Presents wait to be wrapped and more shopping is underway.  Even with the progression of HD, Bev is smiling, hugging like a bear, and welcoming everyone into her home with a smile and genuine conversation.  She’s winning this fight on HD from her spirit, mindset, and life outlook alone!

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Save the date!  Our 9th annual Bev Hartig Huntington’s Disease Fundraiser is coming soon on April 28, 2018.  Save the date and please prepare to attend.  Our theme this year is “Team” and we need you to be part of this team to fight the great fight of this disease!

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Stay tuned as we update a few times a year 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

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

facebook.com/TheBevHartigHuntingtonsDiseaseFoundation

www.bevhartighuntingsdisease.com

Bev’s Story and GlycoScience Research Update

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Bev’s story: Listen to Bev’s 6-minute video

The BHHDF donated research funds to GlycoScience and here is an update:

I have been meaning to update you on our progress but we’ve been busy! Your funds have really moved this project forward.  With $100k we were able to get started on the pharmaceutical grade manufacturing with the GEAR (Graduate Education and Research) Center in Sioux Falls.  They were able to match the amount with $100k and have hired a PhD researcher, Dr. Aaron Harmon, who is in charge of the start-up manufacturing process.  We have known him since he was in graduate school and are very fortunate to have a researcher of his caliber on the project. We have biweekly meetings with Dr. Harmon and his team members, including Dr. Foss, Quality Control and Quality Assurance, and other researchers.  Their goal is to have the first lot of GM1 in the bottle later this fall.

 

The other $50k has gone to the GlycoScience Research lab at the Research Park in Brookings. Again we were able to use the funds to obtain another $10k in matching funds from a South Dakota Community Foundation Innovation Grant.  The lab at the Research Park has opened doors and has allowed for networking opportunities that have moved the project forward.  Thus far, with the help of a summer intern, we have been able to extract DNA from sheep blood samples and genotype over 2000 lambs to identify the lambs that are a rich source of GM1. Once tissues from these lambs are processed the GEAR center will extract and purify the GM1 to use when we are able to move into clinical trials.

 

Additionally, we have started working with Dr. Gary Dunbar at Central Michigan University.  Dr. Dunbar has done GM1 research for over 30 years.  He worked with Fidia, the Italian company that started with the cow source of GM1.  He is a strong believer in the potential therapeutic benefits of GM1.  He is also connected with the HD community in Michigan and shares our motivation to help HD patients and their families.

A Day in the Life of Bev, Her Story, Part 12, as written for the annual BHHDF Invite!

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2014 6

Bob and Bev Hartig at the 2014 “Hoe Down” BHHDF event!

 

As written for the 2017 Annual Fundraiser Invitation: 

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!

It has been 18 years since Bev learned her biological father had Huntington’s Disease (HD) and that there was a 50% chance of having it herself.  She chose to take the test and the results were not in her favor.  She has been living with HD since she got her results for testing positive in 1999.

HD is a slow, progressive genetic condition that runs in families, and to date there is no cure.  Many with HD will die from falling due to lack of balance or from choking due to the inability to chew and swallow.  Bev’s father later died in his mid 50s from the impact of a head injury after he fell while living in an assisted-care facility.  She is forever grateful to get to know his story before his passing.

After the diagnosis, but without any symptoms, Bev and Bob lived in absolute silence about it for years.  She was still doing all she wanted to do in a full life, having her children, and working full time as a successful sales rep, yet her “secret” was tearing her apart.  She knew the only way to make it through this was to be real about her struggles, make her disease public, and help educate those around her with what was to come.  They had a “Coming Out” party in 2008, the “Bev Hartig Huntington’s Disease Foundation” and board were developed, and the “Team Bev” collaborative battle to fight and bring awareness to HD began.

Here we are in 2017 and a lot has transpired in ten years.  While there is no medication to slow down or cure the disease, Bev’s current medications help control her anxiety and depression.  HD is often described as a mix of Alzheimer’s, Lou Gerig’s Disease, and Parkinson’s, so mentally knowing what is likely to come is one the hardest parts of the battle for all involved.

To paint a current visual, if you don’t know Bev and you saw her in public, you might think she was drunk, to be frank.  Her movements are sharp, her balance is unstable, and she does not stand still.  Most recently when shopping in a grocery store with a friend, a store manager approached her and blatantly asked, “Are you ok?  Do you have something wrong with you?”  Bev smiled and kindly replied, “Actually, yes.  I have a degenerative disease called Huntington’s Disease.”  The manager apologized and realized his approach was extremely inappropriate.  This disease tears families apart.  It is destructive and debilitating, but Bev’s life is bringing awareness to the impact of HD.

A typical morning for Bev requires she take two full hours to get ready for the day.  The process of taking a shower, doing her hair and make-up, and getting dressed are daunting tasks, but she allows ample time for the routine.  Choking is becoming more frequent as she attempts to chew her foods.  The challenge comes from a combination of her tongue getting in the way and her oral muscles periodically failing to work in unison.  To combat this, she slows down as she eats, takes smaller bites, and stays away from foods such as tortilla chips and steak, which tend to be problematic.

To assist Bev in keeping her days productive, she has four hired assistants that share the role in the morning and evening to aid her with starting the day and getting the kids off to school.  She also has hired drivers transport her three times a week to appointments, grocery shopping, and errands.  “Tuesday Tennis” is still a fantastic social and physical outlet she is so very grateful she can enjoy….and also brings a big smile to her face!

At this point in the progression of HD, Bev has many positive outlooks, but she is most sad that she has lost her ability to drive.  When symptoms worsened, she discontinued driving back in 2013.  As an adult, slowly losing your independence for necessary tasks such as this is at the point in the crossroads where humility meets frustration.  Can you imagine?  She didn’t realize how much she’d miss this life freedom, but she’s grateful to be able to enjoy her eventful calendar like she does!

The family has turned their pain into purpose and Bev’s disease is now rippling large waves of impact through the HD community and into scientific research for a cure.  Since our start in 2010, now heading into our eighth fundraising event, the “Bev Hartig Huntington’s Disease Foundation” (BHHDF) has raised over $1,000,000, supporting three scientific studies and one Indiana program assisting other families living with HD!   Your continued involvement in their lives and mission is making a tremendous difference for families struggling with HD now and in generations to come.

 Thanks to you, Team, the waves of positive impact keep coming!

In great 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

Written and Interviewed by Mindy Irish and Pam Barr