Katie Jackson: Hello, everyone, and welcome back to another episode of Help4HDTV. I am Katie Jackson and Katrina Hamel, and I have an extraordinary guest on with us today.
Sharon Recore will be joining us. Let's start Sharon by you telling us how HD impacts your life.
Sharon Recore: First of all, thank you, Katie and Katrina, for having me, I appreciate it. My husband has Huntington's disease, and Donny was diagnosed when he was 61. He is now going to be 71 this coming week.
He had a late onset of Huntington's. We knew Huntington's was in the family because his sister came down with it. We didn't know what it was. We were thinking it was just her nerves and some kind of mental issues that she had. It didn't take too long before the chorea to kick in with her.
We discovered then that it was Huntington's. Still, the way we found out for sure was a family meeting called once she was diagnosed, and we were told about Huntington's. I knew nothing of it had never heard of it. A few years later, Donnie’s brother came down with it. He never really got a full blood diagnosis.
It was more of a clinical diagnosis because he was just showing so many intense symptoms. At that point, Donnie still was not showing much of any kind of signs of Huntington's. Then 10 years or so down the road in 2010, he was coming down with symptoms. He was diagnosed in 2011.
Symptoms were, for sure, more cognitive. He had very little chorea. So, there were more cognitive issues for him, late-onset.
Katrina Hamel: Thank you so much for sharing that with us. We've talked so much about Donny in the past, and you've shared a lot of his story with us. Can you just share with everyone some of his cognitive changes? Tell us a little bit about how that's changed for him.
Sharon Recore: Over the course here of 10 years, a lot has changed. When he was first diagnosed, just like it's a 50/ 50 chance. It was still the day he went to be tested. It was always 50/50 with him.
There were some cognitive issues. He had difficulty learning anything new, like a debit card. He found that very hard, and he just couldn't deal with the PIN number for the debit card. His judgment was impaired. I could tell a couple of what I call small accidents. Like the hit a fence post, and he scraped one of our vehicles.
Just judgment issue going on there. The cognitive ability that he had. His driving was getting more and more noticeable. And he started wanting me to drive, and I did. As the months and years went on, he just slowly gave up the driving because he did realize he realized. And, but yeah, later much later, he blamed me for him not being able to drive. Huntington's definitely was showing up. He sometimes had issues with making the right decisions, especially with finances. That was an area he did struggle with.
The most prominent symptom that he has now, and I think that he has had is apathy. And apathy, of course, you think somebody is lazy. Starting to act lethargic. He definitely was not a lazy person. He was a tough physical worker. He was a dairy farmer, and he worked from sunup to sunset.
And when he got where he couldn't didn't seem to want to physically do much anymore. His symptoms were really starting to show.
Katie Jackson: Did you notice like memory loss? Was there any similar short term or longterm memory loss with Donnie?
Sharon Recore: Yes. The short term was there. Yes. I did start to notice that. It's there now, too. It's very much so there now.
Katie Jackson: Yeah, but longterm memory intact.
Sharon Recore: It is. Yes. Unfortunately for that. I really am.
Katie Jackson: Sharon, can you talk to us a little about how the cognitive impairment impacted Donnie's life and yours?
Sharon Recore: We're very fortunate to have a specialist in Huntington's and, I’m very thankful for that. Giving us some kind of support and ideas of how to deal with that. You needed to go slow with him. You just wanted to slow down and give him a chance to answer.
Maybe remind him, like showing him a picture of something. Talk to him more slowly and give him time to answer. I remember that being a big issue we needed to deal with. With the cognitive ability, they don't like change. So, you needed to put the groceries away in the same spot every time.
You needed to put Coke or Pepsi on the bottom, or it goes on the bottom shelf of our refrigerator. And if it wasn't there, that would bother him. To keep a routine going and give them a chance to answer and stay on a routine.
Katie Jackson: Did you notice that with the cognitive impairment, was Donnie ever frustrated or maybe disappointed or sad? Did you see any emotions that came out of Donnie because of cognitive impairment?
Sharon Recore: Oh, yes. For sure. All of the above everything you mentioned that it is, it's a struggle. Luckily, he's on medication, and it helps.
It helps so much, there was some irritability, medication got much better. For having Huntington's, he's done very well. He has until lately, Yeah. He definitely is declining.
Katie Jackson: I know that we love being around him every time we were with him, he's a joy to be around.
He was always smiling and happy, and we'd throw music on, and he'd be on the dance floor with us—both of you guys.
Sharon Recore: He's very social, his normal personality is social. He loved you and Katrina. He loved being at the events with the law enforcement program and everything.
After a, while it breaks your heart that they can't do it anymore.
Katrina Hamel: Sharon, I know you've mentioned a couple of things that you've done to help Donny compensate. Are there other things that, maybe somebody out there listening might be able to utilize? Is there anything that you do to compensate for Donnie's cognitive changes?
Sharon Recore: I tried to give him more social activities to keep him busy. He went to a support group that he loved, and he would go into his respite care. He loved it. And of course, it's not happening now because of COVID.
And I tell him it's not happening. They would color, they would try to draw things. They play games. And he liked to be the computer playing his 1950s and 60s music. He loved that. I did what I could to get him like set up on the computer and take them to the support group. As I said earlier, you have to show him old pictures and bring back some happiness to him.
Try to keep him as upbeat as I could. I'm still trying to do that.
Katie Jackson: It's so incredible how much we learn from each other being caregiver to caregiver. I think Sharon gave some essential tips today.
Trying to keep the spirit up, showing old pictures. Patience. I think that was her number one thing she kept saying is patience and go slow. I think that also helps frustration on all ends. If we just slowdown, which is really hard for us to do.
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