Shaun Bateman told his story in a blog based on a conversation from March 2018. One year later he answered a few questions about life after Social Security Disability Insurance approval.
How have you been since your SSDI approval?
It’s been a tremendous relief to have the Social Security Disability Insurance (SSDI) application process behind me. It’s such a long, huge process—especially the long years beforehand and all the mental decisions and planning, while also trying to stay focused and positive.
Of course, if I was stressed or confused, Allison (CVC’s disability attorney, Allison Bartlett) would take her time and explain things, which was really necessary for me. Because focus and energy are both impacted in people with HD. If it’s a long question, by the time you finish asking it, we can easily forget the initial directions and comments. Over those two years, she always made sure that I was prepared for the road ahead and understood the journey.
I had some annual tests done recently at my local HD Center of Excellence where they observe you to see if anything has changed. My results said I haven’t gotten worse except one little arm mobility issue. Everything else stayed the same. And actually, a few things got better. I think as you age, you figure out how to deal with things better—accommodate falls so they don’t happen the next time, things like that.
I have always been really sensitive to noise, and HD makes that a lot more pronounced, but now I just leave in my wireless earbuds and can remove as much of that distraction as I need to. It also allows me to play music a lot, which helps me focus and work out with higher energy.
Everything is less stressful not having to deal with Social Security. It’s a big thing it really, really is. I will also say I never really expected how much self-imposed guilt I was going to feel about the whole process, because I have known many people who didn’t qualify. But every single person has to sort of wrangle things down themselves—and also prepare for being more dependent on other people, people around you who love you and want to help.
Did it change your experience with health care?
My SSDI started in 2017. After you have been on SSDI for two years, you’re allowed to go on Medicare early. So that should start soon and is wonderful. I get breaks with the price of my insurance, based on how much I paid into the program over the years. It’s deducted from my SSDI check.
Has anything else noteworthy changed since SSDI was approved?
I haven’t heard much from them since, except I did get a little call from the office to see if I had received information about the back-to-work program. I know they check in on you periodically to see that you still need disability assistance. With some illnesses, you can get better and won’t need it anymore. But HD is progressive. While it comes on kind of fast, it does slow down for awhile. But the last 10 years of your life, you get worse more quickly. I had a doctor say one time that it’s like you live in a huge mansion and every day you turn off one light and at the end of a long time it will be darker. But the light is not extinguished until the end. While you’re alive, you always have light on.
I receive private disability insurance payments as well, which is approved until I turn 65. So that helps. If the world changes and a treatment comes between now and then, we might get to train for new careers in the future.
Probably 30 percent of all people are really against change. I am one of those people who love change. Whatever happens, happens. At some point if things have gotten bad enough and you have to ask for help, then you do. The programs are meant to keep people as functioning and intelligent as possible and I appreciate that.
The news around HD is changing a lot—has that impacted you?
I was pre-screened into a clinical trial in North Carolina, but it ended up closing down before it started. I talked to my HD Center of Excellence about it. They said that there were some safety concerns. We’re so close—of course nobody wants to do it wrong, when we are on the very cusp of change.
Our options are improving all the time and there are probably five really, really hopeful things on the horizon related to HD. Technology has increased tremendously. I finally feel comfortable saying that to some of my friends. I balance what I tell my friends, because they go through all of the emotions, too.
Hope is extremely important. And it’s also how I’m wired. That’s not everybody. If there was a cure tomorrow and everybody got better, I would be elated. At this juncture I think everybody is ready for a cure, but we’re nervous that it’s not going to work for everybody.
All of that however is a lot more than our parents ever got to hope for. There was no Internet—there were just support groups. It was a death sentence. Sometimes people just opted to commit suicide. I think there were people who gave up a lot earlier than they had to. It seemed like while they were still strong enough to make that decision. If more of those people had a little bit of hope, we would have more people around longer.
What are your current challenges or needs? Have you had any bad experiences navigating the health care system with HD?
I have found that while doctors are very informed about their specialties—and all of mine have been wonderful at my Center of Excellence—the health care system isn’t typically set up for one point of contact that knows everything about your care. Instead, that sort of becomes the patient’s role. You have to personally take control over your own health to have a good experience.
And what’s amazing is how possible this is now. We have easy access to information to help make decisions about our care. It seems like, for five years, I haven’t heard anything from an HD doctor I hadn’t already read online. You can find the answer to anything. Although, you have to be able to parse the information.
I don’t think we’re ever going to be in a situation where things are so organized and tight that everyone can just have one doctor. But it would help me to have one person who I could bring all my questions to and who could troubleshoot across the aisles.
Also, I am an “under-medicate” kind of guy. I’d rather be more grouchy and clearer than take more pills. I think providers feel obligated to offer solutions to any issue I raise, but when they offer a new medication, I’ll go read about it before I agree. If it has side effects that might affect my clarity or whatever, I don’t want it.
Some people I have known throughout the years like lots of medicine, but I have always been the kind of person who takes a less is more approach to medicating, I think I want to be able to minimize interactions as much as humanly possible.
If you had one thing that would make your day-to-day life with HD easier, what would it be?
Newer cars have so many safety functions built into them now. It makes driving a lot less stressful. So that’s something sort of simple that could make life easier for people with HD.
HD is a family disease. Almost our whole family has passed away. Most people have died early. Everybody in our family totally understands. I joke a lot that my sister is my oldest living relative, but she is my sister through marriage—her father married my mother. So actually, my brother—who is only a year and a half older than me—is my oldest living blood relative. Every other older blood relative is gone. I have uncles and aunts by marriage, but no parents and no grandparents.
That’s a huge loss—but our whole lives we have been preparing for the early goodbyes. Still, I really miss asking them questions and listening to their stories.