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

 

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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

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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!

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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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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

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

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