A Day in the Life of Bev, Her Story, Part 10, as written for the annual BHHDF Invite!

May 2, 2016 | Blog

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: facebook.com/BevHartigHuntingtonsDiseaseFoundation

Website: bevhartighuntingsdisease.com

Interview by Mindy Irish and Pam Barr