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

 

2017 Research Funding Update

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!

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

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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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:

Facebookfb.com/TheBevHartigHuntingtonsDiseaseFoundation

Website: bevhartighuntingsdisease.com

Written and Interviewed by Mindy Irish and Pam Barr