What I Wish I Had Known Before Diagnosis

I recently saw a video on TikTok. I created our TikTok to share the gadgets, tips and tricks I use for Nathan’s Huntington’s.  

As I logged on to respond to some messages I had from the latest video I shared, my for you page pops up with a video of a young woman talking to the camera about her recent HD diagnosis. 

 It stood out because of HD, but also because the year showing the date she made the video was 2016…the same year Nathan was diagnosed.  

It goes on to show her now in 2026 and the changes in her with HD progression. 

My thought throughout watching it was, I wish we had thought to have Nathan record a video similar to that for the kids.  

At the time of diagnosis, the kids were 10 and 1 ½.  Then that led me to think about all the things I wish we had done while Nathan was healthier.  

Which led to pieces of advice I give when I hear about someone thinking about getting tested or someone who has recently tested positive.  

First off, I wish that I had known then that long-term disability and long-term care were two different things. And I wish I had known to get long term care before testing to be on the safe side.  

Life insurance was already in place but that’s another thing I tell people considering getting tested. Both are typically unattainable once there is a positive diagnosis. I won’t say totally unattainable, someone out there may have been able make that happen.  

I also wish that I had recorded Nathan and the kids more. The most valuable things I find, also the most heartbreaking, are when I stumble onto a video I didn’t know I had that shows Nathan walking and talking.  

Haden especially loves to see those. It does bring tears to my eyes because Haden’s response is usually along the lines of “Wow, Dad’s walking” or “I can understand what Daddy’s saying.”  

Haden never really knew a day that his dad wasn’t sick, and even once while playing in the floor with his beloved dinosaurs looked up at Nathan and said, “Daddy, I wish I had met youbefore you got sick,” (best acting job of my life was holding it together before pretending I had to use the restroom so I could allow myself to shed the tears. ) 

I wish we had also realized about speech devices and recorded Nathan’s “real” voice.  

When we were getting set up for his speech device, his voice was already considered too late, but we tried. We were told then, “Fifty phrases and you have a voice.” 

God, do I wish we had those fifty phrases. I’d pay the companies that record that whatever it took for his voice.  

I did have a wonderful cousin who sent me a book called “All About Me,” to which instead of writing in the provided lines of the book, I asked the questions while having the camera on Nathan. Some questions he could answer, others HD had taken the memories away.  

I’m glad the kids will have that for the future. I plan on providing each of them with a copy for when they are older and will appreciate it more.  

Hindsight is always 20/20 as the saying goes. Things I wish we could have done but didn’t due to finances or things we should have done to just make memories.  

One thing that doesn’t linger is that Nathan loved then and loves now is his family.  

Something we did was to be proactive. I was on the board of directors of a community theatre I used to be involved in, it just so happened that another volunteer happened to work in the local Social Security office.  

While we were selling t shirts during a performance, I told her I had some questions and she answered them while the play was going on. That following Monday, we got the ball rolling on applying for Nathan’s disability. ( Because his job had to be modified, we were able to start the process and have it in place for when he had to stop working) 

Being proactive is another piece of advice I give. I tell people to “plan for the future, but live in today.” Tomorrow isn’t promised for any of us, so instead of wasting valuable time in worry, get acclimated to the diagnosis, then get back to LIVING.  

Another couple that are dear friends with similar personalities of ours are known for a phrase and many live by it now. “Fear doesn’t stop death, it stops life,” no truer words have been spoken. 

Living that life with a positive attitude is easy to say, harder to do, but I firmly believe that’s why Nathan is still living life and he does it with a smile.  

These are only a few pieces of advice I give when speaking to others in the HD community. Especially newly diagnosed or about to be tested.  

We felt so alone when Nathan was diagnosed and I wish I’d had known how to find someone that would have given me the tools without the trial and error. But we tend to share so others don’t have the bumps along the road in this HD Life we share.  

Heather Thurgood Wilmoth