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

 

 

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2016, 7th Annual Fundrasier

A BIG thank you to our event photographer Photos by TK!  You can visit his online photo gallery of the event HERE!

April 30, 2016: The theme for this event was “Be a SUPERHERO, Cure HD!”

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If you have some photos you would like to share, post them to our FB wall HERE!

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Invitation 2016

A Day in the Life of Bev! Her Story, Part 11!

October 18, 2016

-Mindy Irish

I was able to catch up with Bev recently and we realized just how close we actually are to the 2017 annual event!  It’s just six months away!

Bev just returned from what she calls a “Bucket List” trip to Aruba with her friends Cecilia, Molly and Debby!  She had a great time and her favorite parts of the trip were down times around the pool relaxing in the sun, creating memories, shopping and having NO agenda!  Hurricane Mathew made an appearance and did interfere with some of the timing of their travels, but they conquered the storm and did not let it get in the way of their fun and their joy for having a great time!

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So what is new with Bev these days?  She has a driver three days a week who comes in to take her about to appointments and grocery shopping from 10AM to 3PM on those days.  She also has morning and evening help most weekdays to help with her and the kids, but they so desire to have their list of assistants be longer!

She reports that she is falling more and is more unstable, in fact she told us during the interview that she took a fall when all alone in the morning, but was able to recover on her own.  Still, her demeanor about all this is so very positive and she won’t let it stop her from having a fantastic day!  She is happy to say she is sleeping wonderfully and is so grateful for being able to get restorative sleep and rest at night, often quite the opposite of what the doctors say to expect with this disease.  Her medicine is all still the same and they can only still treat the symptoms, as we all know, there is no cure for this disease.

What are the needs of Bev and the Hartig family at this time?  The Hartigs are in a big search with a few Au Pair companies to hire someone to live within the home to help them daily ongoing.  Additionally, they need more weekend help and more assitance for after school a few times a week, as it really is a two-person job to care for the needs of Bev and the children when Bob is working and traveling.  They ask that if you do know of anyone who has interest in these positions, please put them in touch with Bob Hartig!

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Bev with Ms. Pam, her long-time friend and daily care giver!

Bev also requests the help of any gal who would want to come over from time to time to help her with projects around the home.  She wants to get some organization complete, some pictures transferred over, and tie up several projects with loose ends.  She also says a lunch date out is always part of the plan, too!

One of the most exciting events is that Bob and Bev celebrated their 19th wedding anniversary on October 12th.  They plan to get out on the town to enjoy a nice meal together.  What a gift time is!

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SAVE THE DATE: The eighth annual Bev Hartig Huntington’s Disease Foundation fundraiser will be Saturday, April 29, 2017.  We are in process of finalizing the location and theme details and the committee will meet monthly from now until then to plan and strategize for the festivities.

We tied up our meeting with Bev just as her driver arrived to pick her up.  She had an appointment to attend and a lunch date to make, so she was off and out the door.  Bev lives each and every day as we all should….with gusto and gratitude.  She leaves no stone unturned!

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Bev out with friends celebrating Bob’s 50th birthday!

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

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

 

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

 

An Update on Bev: 1.10.16 Group Meeting Notes

 

New Year 2016

Topic: Bev Hartig’s Update Meeting

Date, Time: 1/10/16  @ 5:00 PM

Location: Hartig Home

 Agenda:

  • Introductions
  • Purpose: To communicate with everyone the many changes and updates to Bev’s condition since her “Coming Out” meeting in 2008, when she courageously decided to educate others about her diagnosis with Huntington’s Disease.
  • Brief Overview of HD and Bev’s Diagnosis 

Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25-year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications. Everyone has the gene that causes HD, but only those that inherit the expansion of the gene will develop HD and perhaps pass it on to each of their children. Every person who inherits the expanded HD gene will eventually develop the disease. Over time, HD affects the individual’s ability to reason, walk and speak.

Symptoms Include:

  • Personality changes, mood swings & depression
  • Forgetfulness & impaired judgment
  • Unsteady gait & involuntary movements (chorea)
  • Slurred speech, difficulty in swallowing & significant weight loss

Stages of HD

Although symptoms of HD vary from person to person, even within the same family, the progression of the disease can be roughly divided into three stages.

Early stage HD usually includes subtle changes in coordination, perhaps some involuntary movements (chorea), difficulty thinking through problems and often a depressed or irritable mood. Medications are often effective in treating depression or other emotional problems. The effects of the disease may make the person less able to work at their customary level and less functional in their regular activities at home.

In the middle stage, the movement disorder may become more of a problem. Medication for chorea may be considered to provide relief from involuntary movements. Occupational and physical therapists may be needed to help maintain control of voluntary movements and to deal with changes in thinking and reasoning abilities. Diminished speech and difficulty swallowing may require help from a speech language pathologist. Ordinary activities will become harder to do.

In the late stage, the person with HD is totally dependent on others for their care. Choking becomes a major concern. Chorea may be severe or it may cease. At this stage, the person with HD can no longer walk and will be unable to speak. However, he or she is generally still able to comprehend language and retains an awareness of family and friends. When a person with HD dies, it is typically from complications of the disease, such as choking or infection and not from the disease itself.

In all stages of HD, weight loss can be an important complication that can correspond with worsening symptoms and should be countered by adjusting the diet and maintaining appetite.

  • Update on Bev and her current needs:

Medical Updates, Social Emotional Updates, and Personal Updates

-No Driving per Neurologist

-No Alcohol (Only a spritzer or Maximum 2 spritzers with mostly Sprite can be tolerated with Bev’s current medicines.)  Substituting with grape or cranberry juice is great too so that Bev can feel a part of the social scene.

-Balance is the biggest issue for Bev right now, and falls are becoming more common and can be dangerous.

-No heels for Bev

-Bev needs escorted on ice and with stairs at all times

-Dietary concerns and choking can be an issue with tongue muscle control, but Bev seems to be doing ok with this for now.

-Assistance with organization and reminders: Bev can always use help with reminders and organizational tasks as these have become increasingly more difficult.  She could especially use help with organizing her closet and office right now (per Bob!)

-Currently, The Hartigs have hired help with Katie to get her ready for school, and after school until bedtime at 8:30pm Monday through Friday because Bev is not able to do this any longer.

-Assistance with driving and meals (Sign up Genius emails sent out)!

-The Hartigs have hired drivers every Tues, Wed, and Thursday.

-The Hartigs do NOT need help with meals, but have asked for weekends to be added to the driving assistance calendar so that Bev can get out of the house for a bit and Bob can spend time at home with the kids and family after traveling all week with work.

-Please sign up to help on the sign up Genius, even for just an hour or 2 on a Sunday!  It would be GREATLY appreciated by Bev (She is getting really bored with all the Football/Sports Bob and Ryan are watching at home on the weekends.)

Sign-Up Genius Link: Sign Up Here!

  • Website and Facebook Pages

http://bevhartighuntingtonsdisease.com

https://www.facebook.com/TheBevHartigHuntingtonsDiseaseFoundation

  • Upcoming BHHDF Event April 30th 2016

** Please continue to check website and Facebook for details and updates

Thanks Again!

Kristy Busack      440-7221

Bev’s Drivers and Companions Sign-Up

If you are able to help Bev in any way, here is the link to her sign-up system.  Thanks for all you do!

As of 1/11/2016, per the volunteer coordinator:

“At Bev’s request, Saturdays and Sundays have been added to the sign-up. She would love to have more social outings during the weekends, plus several of her working friends are only available on Saturdays and Sundays. So please sign up when you can!” -Diane

SignUpGenius-logo

SignUpGenius for Bev Hartig:

http://www.signupgenius.com/go/9040849a8af2ea31-driverscompanions

Bev’s Update Meeting, January 10, 2016

An important note. Please spread the word:
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Friends,
I am writing to invite you to attend an “Update Meeting” regarding our dear friend Bev. As many of you may have attended Bev’s “Coming Out” meeting in 2006 when she courageously decided to educate others about her diagnosis with Huntington’s Disease, or have attended one of the BHHDF events, there have been many changes and updates to Bev’s condition we would like to share with you.
 
The Hartigs are graciously inviting anyone interested in learning more about Bev’s continuous battle with HD into their home this Sunday January 10th at 5:00pm. In effort to be efficient and courteous of time, we would encourage you to think about any questions/concerns you may have ahead of time and email them to Kristy Busack at busackk@wws.k12.in.us.
 
Please forward this on to anyone we may have missed.
Thank you,
Kristy Busack & The Hartig Family