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!
https://www.facebook.com/BevHartigHuntingtonsDiseaseFoundation
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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