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

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

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Greetings Friends and Family!

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

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

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

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

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

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

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

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

In Hope to cure HD,
Bev for the Hartig Family

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

facebook.com/TheBevHartigHuntingtonsDiseaseFoundation

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

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

BHHDF meeting 2

(Bev with Cami!)

As we complete the first full month of 2015, Bev reports having a wonderful Christmas with the family.  Bob’s parents came for seven days and enjoyed time together as a family.  The kids are back in school and it is good to have routine back in place.

Bev loves to make it to tennis lessons twice a week and is very grateful for the ladies who transport her weekly to make that happen.  She enjoys the exercise and the challenge of the sport!  She is planning to run/walk the 2015 Geist 5k with Ryan (who she says is super speedy and blows her away!) and with Bob pushing Katie in the stroller.  She is looking forward to that upcoming May event!  If you are participating in the event, consider joining Team Bev to run alongside her and cheer her and the family on!

Bev also went to a pilates class with her friends Krista and Becky recently.  Bev loved the new workout and says her abs were sore for days!  She is not sure when they will be back for another session!

The family is still receiving help from daily caregivers, but sees much turnover when people have a change in life circumstances or there is a need for a substitute.  On those days when people call in sick, Bev has no back-up plan and the family does their best to take care of Katie and meet Bev’s needs.  If you are interested in helping out, please visit this link to sign up as a companion, caregiver to Bev or to bring a meal.  They greatly appreciate the team effort!SignUpGenius-logo

Sign-Up Genius for Bev

The Bev Hartig Huntington’s Disease Foundation Planning Committee met last week to plan for our April 25, 2015 event.  The highlight of the meeting was getting an update from our Board Members that our 2014 funds were sent off to our chosen researcher and scientific research is underway to find a cure for HD!

As a team, from 2014, we all raised and donated $150,000 to research for a cure.

Stop and digest that.

It is truly amazing how many efforts go in to this cause and how the compound effect really adds up one dollar at a time!  As a team, and from the Hartig family, we cannot thank you enough.  Through these efforts, BIG changes are happening for the future for all those impacted by Huntington’s Disease!

BHHDF meeting

Stay tuned every couple of weeks 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

A Day in the Life of Bev! Her Story, Part 8!

Bev and Bob celebrated their 17th wedding anniversary in late October!  They went for dinner at the Alexander Hotel in downtown Indianapolis.  Bev reports that the food was amazing and the bar is spectacular.  The hotel is brand new and is quite the scene and was an excellent place to celebrate this special date!

Planning for the 2015 Bev Hartig Huntington’s Disease Foundation annual event is well underway.  Bev’s team met once in October and once in November to assign roles and team leads and to nail down the theme for April.  After much consideration, we landed on the theme, “Around The World to Cure HD”!  The event will focus on the variety of countries, traditions, and fare from all over the world and the attire will be cocktail dress with a twist from the country of your choice.  We anticipate having food themes from Mexico, China, Italy and various other countries for a variety of décor and food choices.  Start planning your outfit now as you make your travels!

The Hartig family is preparing for the holidays.  They will be staying in town this year and Bev reports that her parents came to Fishers for Thanksgiving and that Bob’s parents will be in town for Christmas.  It is a blessing to have both families visit and celebrate in the Hartig home at this time of year!

The first of Bev’s fundraising events kicks off on Sunday, November 30th from 2-5PM at Dahlia’s Boutique in Fishers, IN.  The store will be open for holiday shopping and a portion of the proceeds will be donated to the BHHDF.  These events are so fun to gather and socialize and also raise awareness and funding for a greater cause!

As 2014 winds down, we reflect on the blessing of time, health and memories made for another year, one day at a time.  May the start of 2015 be a great launch to a wonderful season in your life and may everyday be a gift despite the challenges that life brings.  As our hero Bev lives life to the fullest one day at a time, may you also look at life and approach it with, “I will never say I can’t.  I will always say, ‘I’m going to try!’”

Give thanks.  Be blessed.  We look forward to a marvelous 2015!

Stay tuned every couple of weeks 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

You are a Survivor. breast cancer. inpiration

A Day in the Life of Bev! Her Story, Part 7!

Bev August 2014 2Summer is over and the school year is in full swing.  The Hartig family had lots of fun this summer, but they’re happy to be back on a regular routine.  Bev and the family traveled to the Jersey shore in early July.  They were there for a large family gathering to celebrate Bob’s father’s 80th birthday.

In early August, just before school started, Bob and Bev traveled without kids to British Virgin Gorda for a work event.  They were away for six nights and had a fabulous time.  When asked what her favorite memories there were, Bev had a good time bar hopping at the swim-up pool bars and her favorite stop was the “Soggy Dollar” Bar (get it, you swim up with soggy dollars in your pocket?!)  She also enjoyed the jeep rides and hikes out to the sea baths that collected on the shores of the island.  We’re so happy the two got to enjoy some down time away from home!

“It takes an army of people to raise a special needs child,” said Bev.  She gives great thanks to the many people that helped out day and night while they were out of town.  Bev is very grateful for the assistance she receives for both her and Katie and beams when we talk about those that take time out to help the family in any way.

Bev also celebrated a birthday this summer and had a fabulous time at several events.  Her friend Shelley rented a pontoonBev August 2014 3 boat and took it out on Geist with a group of Bev’s friends.  I was able to attend and it was a wonderful, quiet day on the water celebrating Bev.  Additionally, Bob took Bev to Ocean Prime for her special day and she got the sea bass on risotto.  She lights up when asked about her birthday and I will say that she is one very well loved lady, a testament to who she is.

As school is underway, Bev shared some of her new routine with me.  Katie attends a new school this year and her bus arrives to pick her up at 6:50AM versus the 8:20AM time from the elementary years.  So that means Bev is up at 5:30AM daily to start the process to get Katie going.  Neither one likes to rise that early in the morning, so they like to allow extra time to get things underway for the day.

Ryan Katie Summer 2014This school year Bev is going to volunteer with the Fall Creek Intermediate PTO.  She will be on the Box Tops Committee and together we’ll be counting tops to benefit the school as they come in.  She also plans to continue doing tennis a few times a week.

As of now, Bev still has a driver on Tuesday and Thursday each week.  She also has after school help daily, but the family is in need of someone to replace another assistant on Mondays from 3-8:30PM.  Duties include cooking dinner, doing laundry, and helping to bathe and change Katie.  If you or someone you know has interest in this position, please let the family know.  Her online sign-up system is also in need of many spots for meals, drivers and companions, so please consider helping out and taking a look at her needs on this link HERE!

Bev reports that her symptoms and mood are steady and similar to what they have been lately, but she feels the cognitive SignUpGenius-logochanges are further along than the physical changes that everyone sees.  She is pressing on daily to live a very big life despite the devastating effects of this disease.  Bev is my hero!

Stay tuned every couple of weeks 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

A Day in the Life of Bev! Her Story, Part 6!

Interviewed June 23, 2014

 

TennisBev had been to tennis lessons that morning and Bob asked her to help pull weeds in the yard and in the heat.  Together with Ryan, they got the job complete!  The former Friday through Wednesday, Bev and Ryan were blessed to take a trip with some Chicago friends of theirs.  The family had attempted to find someone to travel with them to help with Katie, but no one as able to assist, so Bob agreed to stay home and actually enjoyed some alone time creating memories with just her on Father’s Day!

 

Bev and Ryan’s trip included a stop at Dollywood theme park!  She reports that Ryan is not really one for amusement rides, but that he had a fabulous time.  At one point he was even chosen to go up on stage and be a part of a bubble demonstration at one of the shows they attended.  They got to do the rides at the theme park, the water park, a zip line and a white water rafting adventure down the Smokey Mountain River!

rafting

The rafting trip was lead by a 21-year-old guide who confidently lead the packed boat down the river.  This was Bev’s third time to raft and she loved every minute of it.  They had a great time….and everyone stayed in the raft!

 

This summer Bev reports that the volunteer assistance has dropped off, but she is very thankful for what she receives.  She has a Nanny that comes daily to help take care of Ryan and Katie.  This gal is the daughter of one of Katie’s initial First Steps coordinators and actually has a lot of training in working with people with special needs.  Bev and Bob are very grateful for her assistance!

 

R summer funSo what else is planned for the rest of the summer?  In July the Hartig family will make a trip to the Jersey Shore for a surprise birthday celebration for Bob’s Dad’s 80th birthday!  Their friend Mickey will attend with them to help take care of Katie.

 

Additionally, Bob won a trip to Virgin Gorda and the couple plans to travel at the end of July and early August to enjoy some alone time.  The kids will stay back with family and sitters and it will be a great way to complete the summer.

 

We hope your summer has been as active as Bev’s and it’s great to hear about all that she’s been up to, while enjoying some down moments away from the school-year agenda!

 

Stay tuned every couple of weeks 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

 

 

 

 

A Day in the Life of Bev! Her Story, Part 5!

2014 1 Interviewed May 5, 2014 by Mindy Irish

The fifth annual Bev Hartig Huntington’s Disease Foundation fundraising event on April 26, 2014 was another success!  There were over 165 people in attendance and the funds donated are well over $100,000, with a final official number still in count.  As I got to speak to Bev on this year’s event roughly one week later, this is her feedback on how it all went and some fun-to-know behind-the-scenes info that is very interesting!  Thanks Bev for the interview!

 

What was your feedback on this year’s event?

Bev: This was the best one yet!  It was a fabulous theme and most everyone dressed up in country, hoe down gear.

 

What stood out most to you about the event?

Bev: I loved seeing all the people from all seasons of my life.  This year four college friends were able to attend and this was their first year that they could attend all together.  They came in from Texas, Minnesota, Chicago and Southern Illinois.  It really meant a lot to me that this group of gals had made an effort to support me together this year.

 

 

What did not go as planned or what was different than you expected?

Bev: I loved seeing all the people dancing, but the country line dancing looked really hard.  Maybe we needed more entry-level instruction.  It seemed hard to follow, but looked like people were enjoying it!

 

What’s one thing we don’t know about the night?

Bev: I did not eat the food!  It looked great, it’s just that I was so busy talking and greeting people, like at my wedding, I just did not have time to eat!  I hope it tasted great!2014 2

 

Tell us about what you do the day of the event to prepare for the night.  What is the scoop?

Bev: I shopped earlier in the year for a few dresses and even traveled to Chicago with a friend to buy a dress.  I ended up wearing a turquoise one that I found here in town at Von Mar and just loved it!  I got my first-ever spray tan and that was quite an experience in itself!  I do my own make up, but I did go to my hair stylist to have my hair curled.  I also went the day before to get my nails done. My team was there setting up all day and I arrived around 6:20PM ready for the night!  I stayed until 1PM and by the time I got home, I was wiped out.  This was such an amazing night, but does take a lot of my energy.   2014 3

 

You spoke on the mic in the middle of the event.  Did you have a plan for that and were you nervous?

Bev: I was very nervous about speaking, but I knew it was something I wanted to do.  I made sure to have a poem prepared to end my talk and I wanted to call my committee up and thank them for their efforts.  I want to speak at the events for as long as I can to share where I am in my journey and thank my guests for coming.

 

What are a few staple items and events that you think we should keep each year?

Bev: That photo booth was just WAY too much fun!  People loved that and I want that to stay.  We also need to find another awesome theme like we did this year.  I really enjoyed seeing the guests get into the theme and dress up.  That was very special to me and really made the night.  Overall, the entire evening brings me joy.  Seeing people from all parts of my life come together to support this cause is so fulfilling.  I feel so very loved!

 

So the event is over.  The guests go home.  What happens next?

Bev:  The next morning at around 8:30AM, we have family that is in from out of town come to our home for a traditional gathering where we serve egg kiche, coffee and breakfast goodies and just enjoy the moment.  The kids are here and it’s a highlight for them to spend time with both sides of the family and anyone who has come in from out of town.  It is so enjoyable and our guests stay until about 1PM…and then we crash!  Afternoon naps are certainly in order!

 

As far as the event planning, what is the next step?2014 5

Bev: We gather with my team as a group and I write thank you notes to each of them and offer a gift as a token of my appreciation for their time and efforts invested.  Each one has a role and brings their gifts and talents to my cause in such unique ways.  I’m so grateful and blessed to have this team!  We’ll meet again soon to start planning for next year’s event and we continue to manage the incoming donations and paperwork that goes along with it all.

 

Tell us one thing we don’t know about the weekend.

Bev: Bob’s sister was in town and all of our guest beds were full, so she slept in my bed with me and Bob needed somewhere to sleep.  The only bed left was the top bunk in Ryan’s room!  Bob is a trooper and crawled up there for a good night’s sleep….except he reports that mattress is not the best in town!  Thanks Bob for taking one for the team!   2014 4

 

Thank you Bev for the interview on this year’s event.  We know this cause is part of your story and all of us that have attended, helped, donated and invested time are so honored to be a part of this. It strikes me most that the efforts and funds raised now are truly going to impact generations to come.  No effort is too small and goes without notice. We may never personally see the results, but the cumulative effect will make a tremendous impact on the lives of others someday, exactly the why that Bev intended this Foundation to be. Go Team Bev!

 

View all of the photographer’s pictures from the event on her Facebook page HERE!  Thank you Photographer Donna Rogula!

 

Stay tuned every couple of weeks 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

A Day in the Life of Bev! Her Story, Part 4!

By Mindy Irish

Trip 4Bev just returned from a five-day trip to Big Sky, Montana with the family and some close friends!  Along with their friend and assistant, Micky, the five of them made it Tripthrough the challenge of the airport adventures and the long flight across the country.  When they arrived, they were greeted by snow and more snow and couldn’t wait to hit the slopes!

The group skied a total of four days and Bev was on the slopes for three of those days!  She enjoyed seeing Ryan be a dare devil, speeding by and taking risks with his friends and got to see Micky take skiing lessons with Katie!

Trip 2On the fourth day, they divided up into groups of girls and guys and she headed out to have a spa day, where she enjoyed a hot stone massage!  The rest of the time they enjoyed the scenery, time in the hot tub and pool, and a few nights out on the town.

They returned home on Friday before school started back on Monday for the kids.  Overall, Bev reports the trip was fabulous and everything went really well.  She is noticing she needs more naps throughout the day, but her symptoms have not changed much since we last mTrip 3et.

I’m so motivated by Bev’s “No Excuses” mentality!  She does not miss a beat and embraces every opportunity to create a memory, even when it involves a mountain and a lot of snow!  Live in the moment!

Stay tuned every couple of weeks 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