Caregiver Corner- Darrel K.
- What is your relationship to HPP? My wife, Blynda, has hypophosphatasia (HPP). She has two genes and was diagnosed in infancy. Both our adult children carry one gene. Thankfully, they do not show any signs of the disease.
- What has been the most rewarding aspect of being a caregiver? Helping to provide a good life. Along with the daily things we do including family time, Blynda and I also travel a bit. Although, that has led to some challenges.
- What has been your biggest challenge as a caregiver? The toughest part has been the bad times—the bone breaks, hospital stays, and long recovery times. I’ll never forget one of our trips to New Jersey, just before Strensiq became available. We were touring New York City on one of those tour buses to see the Statue of Liberty. Blynda was the last to get off the bus so I could get her scooter out. As I was coming up the steps, she missed a small step, got out of the seat, twisted, and broke her left tibia. We got to see the Statue of Liberty for six more days from a lovely hospital room. Getting home was a whole other challenge.
- How do you practice self-care? What resources do you find helpful? I try to exercise a few times a week. I’m also a yard sale junkie. I try to go out every Saturday, even if we are traveling. That drives Blynda crazy. For resources, friends and family are greatly appreciated. Our Soft Bones family are a great resource as well.
Responses