Memories Held in Pictures - By Heather Thurgood Wilmoth

My cellphone has an app that shows me photos from years gone by. Memories for each day.

Today's memories were a run of a lifetime with my husband, Nathan. Glimpses from dating through wedding, birth of our child, to now.

When I say this, don’t take it wrong. I love my husband. But I sure miss the man I began dating, fell for, and married.

I miss the walks, just being together, living life without having to always think of solutions before the problems.

Most people can say similar things due to the change and growth in time and people.

But with Huntington’s Disease, it’s more of a focal point.

You don’t have the gradual evolution of a person or relationship for the most part.

Even today, I can see more and more HD changes in my husband. But when I look back, it is so noticeable.

Again, with HD, his real voice. God knows I miss his real voice. I haven’t heard it in so long that I get so excited when I stumble across a memory video where he’s speaking.

It seems like forever since he walked all on his own, that there are times I forget that he actually could.

Not to mention our kids, one who remembers Taco Bell trips or carpet picnics in the living room when she was small. Our son, however, will never recall a day that his dad wasn’t sick.

As a matter of fact, when our son was about 6 years old, he was playing with his toys on the living room floor and looked up at my husband and said, “Daddy, I wish I knew you before you got sick.”

Best acting performance of my life. (I’d always wanted to be a working actor, and I should have gotten an Oscar for my performance in front of “my boys.”

However, I quickly got up, pretended I had to go into the bathroom for something, and lost it. I mean the ugly UGLY cry.

Then again, once we knew what to look for with Huntington’s, I don’t think I actually knew of a day that my husband wasn’t sick.

We were to be set up by his sister and one of my best friends. It didn’t take, but 2 years later it did. I can recall when we got together, thinking how he seemed different than when we

First met. Then I would shake that thought off. Well, he was going through a divorce, I had been going through a breakup, and someone was putting pressure on us.

But looking back, I realize maybe what I always took as pressure/break-up was actually HD.

Then that brings in the thoughts of, Is Huntington’s Disease why my husband gave me a second look? Maybe the first impression was the accurate one, and then the beginning of his symptoms changed his mind?

You see, the patient with HD isn’t the only one who can have the dark thoughts.

That’s just one of the evils of this disease. Not only does a Caregiver have to help keep away the Warriors’ intrusive thoughts, but their own as well.

I don’t call them Patients, I call those with HD Warriors, but in a way we Caregivers have to be the front line. A dear friend has a special name for Caregivers, and in Emma Hemming Willis’ book “The Unexpected Journey,” she uses the term Care Partner.

I will admit, I learned a lot from her book, she has become a Hero of mine in a sense.

So much so that when she mentioned HD in her book, I literally cried.

The Kitty Norton documentary, “Wine, Women and Dementia,” is another place I learned a lot.

The intrusive thoughts I’ve had during this journey that I hated myself, thinking I’m the only one who’s thought that. Well, it turns out, I’m not.

It doesn’t mean I’m no longer afraid; it doesn’t mean that coming across a memory doesn’t

It still makes me cry. I’m crying as I write this. Which is why I’ve been doing a lot of writing lately. I can write the things I can’t say in my social media videos. I try to keep them light, semi-cute and funny as well as informative.

I feel like, with the videos, most of the gadgets, etc., I didn’t know about. If I didn’t know about them, then someone else may not either, so I try to share the information I found by trial and error.

So basically, the takeaway here is, even if the memories bring tears, it’s ok. It’s wonderful, in fact, you have that glimpse of the person you love. I may cry, but I love that I have the memory and the video even more.

Another takeaway is one I have to remind myself quite often. You’re only human, dealing with a huge amount of responsibility for yourself, family, and HD Warrior.

It’s ok if you sometimes mess up, get frustrated, accidentally flip your loved one in the wheelchair because you were trying to put his shoes on (TRUE story, and I’ve felt the guilt of it ever since)

However, now that there has been some space and time between, he’s ok, we can joke about it now. And we do, A LOT.

It’s so hard for us Caregivers to do everything, even though we try, we don’t ask for help when we really need it, we hide the emotions (unless you’re like me and wear them on your sleeves-I one day must find a way to control that-lol)

But at the end of the day, we’re all just doing the best we can with what we have.