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

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

—–

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

 

—–

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

 

Facebook: fb.com/TheBevHartigHuntingtonsDiseaseFoundation

Website: bevhartighuntingsdisease.com

 

—–

Writers: Mindy Irish and Pam Barr

 

Advertisements

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!

—–

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!

—–

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

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

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:

Facebookfb.com/TheBevHartigHuntingtonsDiseaseFoundation

Website: bevhartighuntingsdisease.com

Written and Interviewed by Mindy Irish and Pam Barr

 

 

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!

1016-aruba-trip

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!

1016-bev-pam

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!

1016-anniversary-flowers

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!

october-2016-bob-party

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:

—–

-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!

—–

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

A Day in the Life of Bev! Her Story, Part 9!

It’s been since April 2015 that we have written an update on Bev.  Now in October, several of us felt it was time to catch up with Ms. Bev and see what has been going on for her and the family!  So I had the privilege of sitting down on the morning of October 8th with her and her AM caregiver Pam to recollect about the many memories over the past few months.  What a true joy it is to have this role!    –Mindy Irish

—–

After a great summer, the kids got off on a great start at school.  Bev and the family still receive morning help throughout the week and also on weekdays as soon as the children get off the bus.  The after-school hours are an important time to receive help, because according to Bev, this allows her to have quiet, calm moments with each of her children while someone else can help with the responsibilities of tending to the home and preparing meals.

Bev’s children are of utmost importance to her!

Katie attends school at a nearby intermediate school, but most recently she has been in transition to receive services from a private center in the afternoons that can better meet her needs socially and academically.  Katie is a smart gal who knows what she wants, but her ability to communicate it with others is very challenged.

She is learning new strategies for functional life skills, and the staff at the new center are enjoying getting to know her.  Bev asks for prayer that Katie can receive financial aid from Bob’s insurance to pay for her to be full time at the center that specializes in servicing individuals with her needs.

Bob and Bev enjoying the night out!

Bob and Bev enjoying the night out!

In late September, Bob and Bev traveled to Costa Rica to enjoy five nights away to celebrate their anniversary and Bob’s upcoming birthday.  They left their home at 3:45AM the morning of the trip and after a long, long flight, they got lost on the dark roads of Costa Rica.  Siri was not on call to navigate them, but they finally found their way, arriving at the hotel at 11PM that night.  What an incredibly adventurous and frustrating day!

While the travel put them off to a rocky start, Bev reports that the trip was just what they needed, including respite and alone time together.  The weather was pretty overcast and rainy, but they took the time to relax and meet new people at their hotel. Despite the cloudy skies, they hung at the hotel pool and got drunk!  I asked if she wanted me to put this in there, and she says, “Oh please do!  It was a blast!”  That’s our Bev!

Costa Rica collage

Swimming (or drinking!); Dinner date!

In addition to the fun pool days, they also experienced a “Bucket List” item for Bev by doing a zip line over the rain forest.  They saw monkeys, rode horse back up a volcano, and took in the sights and sounds of the rain forest.  Bev is SO thankful she made this trip with Bob and was all smiles telling me about it.

See Bev’s Zip Line video on her Facebook page HERE!

Bev and Bob: 1, HD: 0……..she is still living a BIG life in spite of this disease!

When asked how Bev is doing physically and mentally, she reports an incident of a fall this summer.  She was home alone with Ryan and Katie and Katie was having a really rough evening with behavior and physical needs.  It was very stressful on Bev and she ran upstairs to get something she needed to take care of Katie.  On her return down the back stairs into the kitchen, she missed the last few steps and flew head first into the kitchen island, including hitting her head on the granite counter top.  She immediately called her friend Frannie, who is a surgeon, and she came over to take a look at it.  Bev ended up needing staples in her head and was pretty shaken up from this fall.

Bev explained that falling is one of her biggest fears.  She reports that her father who also had Huntington’s Disease suffered a tragic fall and ended up dying from head injuries due to a TBI, traumatic brain injury.  Her fear is completely understood as she battles the ongoing effects of HD.

Currently Bev is not playing tennis, but really wants to restart so she can be active again AND get to enjoy social times with her dear friends.  She says her energy is actually pretty good and she has not had any medication changes since her last doctor’s visit earlier this year.

Polo 1

Bev at her fundraising event at a local Polo Club; September 2015

Bev is SO thankful for the help she receives and tells us that she really needs the morning help to get the kids up and on the bus as the day begins.  As soon as they leave, she usually takes a short nap to recharge, since she is up around 5:30 to get Katie ready for school.  This regroup helps her be present for the kids when they return home in the afternoon and also gives her the extra pep to be able to help with homework and dinner prep when needed.  For now the family does not have help overnight, but they know that time is coming soon and they’ll need a caregiver to be there in case Katie gets up overnight or Bev is in need of night time assistance.

When asked what her needs are at this time, she beams with gratitude for the help she does receive.  She has a few drivers throughout the week and the AM/PM help as we’ve mentioned.  She is also in need of someone to drive her on Mondays, Wednesdays and Fridays in the case she needs to run errands or attend an appointment AND simply to get out and enjoy life with other people.  Who doesn’t like a midday lunch and shopping date with a great friend?!

Bev also reports they will need a good Saturday night babysitter so she and Bob can have their ongoing weekly date nights.   This person would be someone who is able to care for an individual with special needs and be available on a regular basis.  We suggested checking in to some of the local colleges for students who are in education and best suited for what the Hartigs need.  Bev and Pam are looking into that option, but if you know someone who would fit this calling, please let the Hartigs know!

Bev college friends

Bev dining out with college friends in Indy at Bella Vita; September 2015

Our Bev is just amazing to be around.  Every time I get the chance to interview and write for her, I leave feeling like I’m a better person because of her.  She inspires me to be present in the moment, focus on what really matters, and make the most of TODAY!

What a great message her life is to so many!

And, she wants me to tell you she still loves her online shopping.  That’s her forte and she’s quite proud of that!

——

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 Bev’s Facebook page for ongoing weekly updates into our research progress and tidbits about our family throughout the year!

facebook.com/TheBevHartigHuntingtonsDiseaseFoundation