-by Mindy Irish
After we last wrote in April, the rest of 2018 was noted as “The Summer of Bev”! She turned 50 in July and several parts of this year involved many special events to celebrate her. She is surrounded by so many friends and family and her support system is deep. What a blessing! on so many levels!
The celebrations are such a positive to the reality and strong presence of Huntington’s Disease that is impacting every area of her life. In meeting with Bob and Bev for this interview, they report that the disease is steadily progressing, so the point of this writing is to be candid and open to the strong impact and devastation HD makes on individuals and families.
Some of the more recent challenges for Bev involve the length of time it takes her to get ready in the morning and the difficulty it is to independently complete these tasks. What would typically take someone 30 to 45 minutes, is taking Bev upwards of 90+ minutes, and finishing is often the hardest part.
Other progressions for the disease on more serious notes involve her daily movements (called chorea) and eating. She is experiencing very unsteady gait and her balance even when standing still is declining. She falls often and is receiving more hands-on assistance to steady herself and walk from point to point.
Eating is also a great concern because she can easily choke, even on liquids or softer textures. Due to this, she gets nervous and chooses to eat less and less often in fear of choking, which then impacts her weight.
Despite the disease progressing, Bob and Bev are doing life daily with a positive mindset! They have a weekly “date night” when sitters are available for the children. Bev enjoys shopping for the family with her drivers and caretakers, and makes it a great priority to get up every morning with the children as they start their day and prepare for school.
If you’re around Bev and in her presence, she has a way about her that makes you feel very special. Her family reports that she still sends birthday cards and makes routine phone calls to check in and chat. If you come to see her or are around her at an event, she greets you with a huge hug, sincerely asks about you and your interests, smiles, waves, and won’t let you go until a goodbye hug is had!
Take that, HD…..Bev is winning at this fight!
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 firstname.lastname@example.org
PS: Please make sure to like and select to “get notifications” from her Facebook page AND our Instagram page for frequent updates into our research progress and tidbits about the Hartig family throughout the year!