Good for the fight against Huntington’s disease

Shaun Bateman on what it’s like to win Social Security Disability Insurance—and what it means to him to play the long game against Huntington’s disease.

Growing up, on some level I knew that my mother was sick. When I was in second or third grade, her older sister who had Huntington’s disease (HD) came to visit us. She told me my mom had HD.

There was no Internet back then. So for a couple years, whenever I would go to the library at Duke University, which was down the street from us in Durham, N.C., or the high school or public library, I would always look HD up and just sort of learn about it.

I had decided I wasn’t going to get tested until my mom passed away because I didn’t want to have to force that conversation. She died when I was 39. At my big, age-40 physical, my general practitioner said: It’s time for you to make some serious decisions about growing old.

I’d always been super active and totally healthy. I was ready to just turn 40 and get fat, watch TV, go see movies and be a normal person. He didn’t want to say yes to all of that, but suggested the first step might be to get tested for HD.

I didn’t want to go to the neurology center by myself and get my diagnosis. He asked if I’d be more comfortable if he ordered the test and talked to my neurologist. I said: That’s so much better.

A few weeks later he told me the results—I had 43 CAG repeats (repetitions of the genetic error that predicts the severity of HD). He said: Shaun, this is really, super, super serious, and I know you know that, but sometimes when something is in somebody’s family, they don’t hyper-personalize it or they ignore it because it’s always been their reality. You can’t do either of those. You have to figure out what to do medically and survive the best you can. You also have to respect it and you can’t just stop going to the gym and watch TV. The very next day I went back to the gym and I never gave up and that has helped me in the long run.

For about a year, I told maybe four people. But then, knowing—it just became something that I couldn’t bear. I’m better at friends than anything. I’m still really good friends with people I went to high school with. I think part of me has always been working on that—because I knew on some level that I would need them. After I started getting stressed out about not telling these lifelong friends, with the help of one of them, I told them all one by one.

social security
Shaun Bateman

Telling them my diagnosis made it easier for them to understand if I was having a bad day, or if I just wanted to be by myself. They asked me to post a few times a day on Facebook—a picture or a check in to where I am, or anything. Before I started doing that, I would kind of disappear. They said: If we just hear from you a couple times every day, we feel better. So that’s what I do. With Facebook you can see what you’ve done on the same day in previous years. So, it’s become a little narration of my memories. I like it a lot. I am sort of documenting the whole thing.

Sometimes I take a picture and realize I look as angry as humanly possible. And, instead of deleting that, I post it, because I feel like it’s important to know. I also want to be able to see when things get better. If it’s been a couple days of frown-y pictures, other friends will give me a call and ask: What’s up? Can you smile tomorrow? They don’t need the whole story. We’ve been friends forever. They understand and sympathize. But if I wanted to not talk to anyone for 1,000 years, they’d prod me out of that.

Social Security

You have different financial priorities if you’re trying to figure out how to exist long term while you’re sick. I had a conversation with Social Security Administration (SSA) early on about Huntington’s. The woman I talked to said an HD diagnosis was enough to be considered disabled. She said: You’re probably going to be able to work until you are 50 or 55. So from the second you leave this SSA office, work as much as you can while you’re strong, so you can pay a lot of money into Social Security.

I worked selling fragrances and skin care. After talking to SSA, I decided I would do anything my job asked. If they needed me to go to Seattle for a few months, I agreed. It was all an adventure. As travel became less easy, I changed to a local job.

When I started having the final spurt of hard times at work, I went to the Huntington’s Disease Society of America’s website and found the national number to ask some very general questions about retirement, the disability process and timing. I called and they gave me contact info for Caring Voice Coalition (CVC). I called the next day and talked to CVC Patient Advocate Allison Bartlett. She said that I qualified for assistance applying for Social Security Disability Insurance (SSDI).

She said she was going to send me stuff to fill out and warned me it would take a little while for the email to send because it was a ton of stuff. She suggested I fill it out as quickly as possible while I was clear in thought and focused on this. I got the email, and part of me didn’t even want to open it. I forced myself to fill it all out over the weekend and had it back to her by the very next workday. As disgusting as all that paper work was, I knew it would be much worse to have to figure it out without anybody pulling the right forms and telling me what to do.

I don’t know if this is true for everybody with HD, but when I first see a task like that it just looks insurmountable. I thought: I can never print all of that, read all of that, etc. This just gets more severe as the time goes by. It was exhausting. But I just sort of forced myself. And then CVC was able to corral so much more information to build my case and help me work toward an eventual approval. I would have never, never, never been able to do it by myself.

The whole disability process took a couple years. Everybody said: You just have to make peace with that. My brother had Huntington’s as well and he had long-term disability coverage with his employer. So for about two years, while he was being approved for SSDI, he was getting long-term disability from his employer. So that’s exactly what I did. It’s not a lot of money, but it’s something to live on during the longer disability application process. Every time Allison would call and say, “Well, it’s been delayed,” or, “They said no this time,” I just reminded her I was getting long-term disability.

If your employer gives you an option, especially if you are approaching retirement years, my advice is to opt-in to long-term disability. It was probably only $5 a pay check. Knowing what my future held, I purchased the maximum coverage I could. And it came through quickly when I needed it. I filled out two little teeny tiny forms.

The SSDI process can be really discouraging at first because it takes so long and there’s so much to do. But having a legal advocate is crucial. The alternative is filling a shoebox with every receipt for your entire life, keeping that organized, filling out all the forms and representing yourself. It is not possible. I don’t say that lightly. All of that is zero percent possible for a person with HD. I am probably the most type A person in the history of HD, so I was probably better than most. But I would never have been able to do it all by myself. It’s just too long, too thorough, too many things to think about, to balance and remember. There’s no way that anybody with any sort of mental disorder would be able to do it themselves.

But it’s essential because it allows me to get paid for the rest of my life. The amount will change when I hit retirement age at 65. And two years after you’re approved you get Medicare. Normally you don’t get that so early. That’s really nice. There are people trying to pass the Huntington’s Disease Parity Act, which would waive the two-year waiting period for people with HD. But even waiting two years—it’s a really good deal. I mean I don’t think anything is ever free or perfect. But it’s nice to get medical benefits before age 65.

A hopeful time

With so much new research-related stuff, I think it’s a hopeful time to have HD. Doctors have always told me that if they can cure any of the weird diseases that aren’t curable, Huntington’s should be it. Because they can test someone at any age and know if they’ll get HD, maybe they can stop it right out of the gate. It’s something that makes HD a little special and keeps a level of hope in there as well.

Sometimes I think if somebody could just fight hard enough or play a long enough game, they could survive HD. And I know that’s not something that happens, but I also know that I’m different than most people. I’m hard headed and I work out all the time. The HD buzz out there is exciting and I think that energy could keep me going, because I’m kind of stubborn about stuff like that. If there’s any hope at all, I think I’m just the kind of person that’s going to make it through. All the time I’m awake and speaking and fighting, they’re working on cures and learning things and that could mean a lot more time. I think as long as I remember that I’m good for the fight.

This post was based on a conversation with Shaun that took place in March of 2018. Look for an update from Shaun in the next blog.

Learn more about Caring Voice Coalition’s disability team here.

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