Nicole: I'm a bit familiar with your story because we met at the Abilities Expo, but for everyone else, could you please tell us about your background and yourself?
Jill: My name is Jill. I grew up on the far southeast side of Chicago, I'm happily married – 34 years this month – and we have two wonderful kids. My daughter Elizabeth is finishing her teaching degree to become a teacher for special needs kids and my son, who’s a little bit younger, has a disability.
He is special and is my genius turtle because he can do absolutely anything in the world, including astrophysics without being taught, but at his own pace. He doesn't quite fit into the world, so I've been working with him for 28 years to get him to where he is.
And I've had issues with all kinds of different things: medically, psychologically, etc.
Nicole: I would love to hear a bit more about how you have supported your son as he's grown up.
Jill: Oh, absolutely. Well, he started out when he was nine days old. He was having seizures and it was Super Bowl Sunday. We took him to the hospital and they did 1000 tests – everything from a spinal tap to an MRI, CT, bloodwork, etc.
He had to stay in the hospital for about three days and that was the start of my chaos. I needed to know absolutely everything he was going through. From that day on, it was just what can I do? What can I ask? What tests need to be done? How can we do this without injuring him physically, psychologically, and emotionally?
He was eventually diagnosed with an unusual form of epilepsy where his muscles lose all muscle tone whatsoever.
The first time we went to a neurologist, he was about 18 months old. I told the doctor that he was having hundreds of seizures and the doctor told me, “That's not possible. He should be dead.”
But, when the technician was monitoring his EEG, she stopped after only 20 minutes and took the results to the doctor. Within that small amount of time, he had had over 153 brain seizures.
My son was admitted and the entire time I was asking, what are you doing? Why are you doing it? What's the reason? Questioning everything. I wanted answers because in his first six years, he was on about 40 different medications, yet nothing would keep the seizures under control.
I finally got fed up with doctors just poking and prodding and trying this and trying that and nothing happening. I found a new pediatric neurologist that was about a two hour drive away with traffic. And he was the best thing I ever found for my son.
He went in depth – taking two hours for the first visit – and we learned a lot. Together, we got him to the point where he was having no more physical seizures.
He then struggled through early grade school without an IEP from kindergarten to first or second grade. That's when I started learning about schools, which are relatively complex too. I learned so much and I tried to help every other parent I came across who had children that were “not the norm.”
Nicole: What are your top tips for parents who might be in a similar spot and who don't know where to start?
Jill:
Tip 1: The earlier you get started, the better.
Even if it's at birth or kindergarten, whenever it's first noticed or they’re diagnosed with a disability.
It doesn't have to start right at schooling because there are developmental preschools and they can get incredible amounts of help.
Tip 2: Get in touch with the Social Security Administration (SSA).
If their child qualifies, apply and fight for Social Security Disability Insurance (SSDI). It gives that child an income from the moment that they're diagnosed and the day you apply.
Even if it takes you a year and a half to get approved, they will pay back to that first day you applied. You can use it to pay for doctors, medical insurance, medications, etc. That's what that money is there for. I didn't find out about it until my son was in high school and we had struggled for 18 years, even going into debt because we didn't know about it.
If someone is at that beginning point, do that immediately. It will help financially and mentally.
Tip 3: Depending on the child’s disability, they may qualify for Medicare and Medicaid.
That will cover a lot of things as well. There’s support available in these little tiny chunks, but you’ve got to fight for it. You have to be the advocate for your child.
Tip 4: Always push and push for what your child needs.
Even if it's the littlest thing, if they need it, you need to push. For example, my son needed a program in school that would take his verbal words and put them in writing. I had to fight the school district for about eight months to get this equipment for him, even though he had an IEP that stated he needed equipment or assistance. Honestly, the school districts don't have the money and the states won't help and the government only helps if they absolutely need to pay.
Nicole: Thank you for sharing that. You also have some rare health conditions. Could you tell me more about myasthenia gravis (MG)?
Jill: Myasthenia gravis (MG) is a rare autoimmune disorder. It was described to me several years ago in this way: imagine you have a stadium with 200,000 people and ask anyone with Myasthenia to stand up. You would get no more than 20 people, and that is if they had the strength to stand.
Nicole: What were the symptoms that you had and how long did it take you to get an official diagnosis?
Jill: Before my official diagnosis, I was having little symptoms for about four years. There are very few specialists and most doctors don't learn about it in med school. Yet, it’s a deadly, or can be a very deadly, disease.
I was having some weakness in my limbs, some swelling in my hands, urinary incontinence, and blurred vision occasionally. I was extremely tired all the time. I had all kinds of tests, but nothing showed up.
I’d also been having severe back pain for about 12 or 14 years prior to my diagnosis and after the injections stopped working, I went to a spinal surgeon and he suggested surgery to relieve pressure. The surgery went perfectly, but after I was having trouble swallowing, talking, and breathing.
We went back to the hospital and had another surgery to remove a hematoma, but even after that, the symptoms continued. They kept me in the hospital and within a couple of days, I had my first major crisis where I was getting help breathing.
I had about 12-14 doctors take a look at me because they had no clue what was happening. I got extremely lucky because one of those doctors was a neurologist that works with different specialists, including one doctor who treats MG. He saw the signs and within three days we started on medications.
That's when I started to do my research to try and figure out what they were talking about. I had my phone while in the hospital and I was looking up things all the time. Without that event, I may have gone weeks, months, or years without a diagnosis, like most MG patients do. I’m in the lucky group.
Nicole: You mentioned to me before that it's called the snowflake disease. Can you talk a little bit more about that?
Jill: Myasthenia gravis (MG) is the snowflake disease because no two patients have the same combination of symptoms. Last I looked, there are about 100 different symptoms that can lead towards MG and no two patients will have the same reaction to medication.
The nickname was started by an organization, the Myasthenia Gravis Foundation of America. They do tons of research and have resources available for anyone who wants to know anything about MG, whether patients, caregivers, or doctors. They give all this knowledge away for free and they get by with donations.
Personally, I've added the snowflake to my sign off when I'm texting or replying on Facebook. I put my snowflake and I put the strong arm emoji, because I am a warrior. We are warriors. We have to fight 24 hours a day, seven days a week, every single moment.
Nicole: On that note, what things bring you joy in your life?
Jill: My family. My kids and my husband didn't understand at first. Once they and my parents understood, they began learning about Myasthenia Gravis as I was learning. They all worked at it and they helped me understand things about MG that I didn't quite understand, and vice versa.
And that brought me joy. Knowing that I had a little cheering squad that was concerned and willing to help me in any way.
The second thing I would say is finding a doctor in any of the different specialties that understands that Myasthenia actually exists and knows how to treat the other disorders I have that are affected by the MG.
What's happening in myasthenia gravis is that there's a chemical being created by the immune system that's going out and eating all of the neurotransmitter receptors. And once you lose a receptor, it's gone forever, they never recover. And if there’s nothing to pick up the signals from the brain, there’s no way you can move your muscles.
All the medications are trying to block that chemical from the immune system so that you can keep as many receptors as possible. The longer you go without a diagnosis and without proper medication, the worse your future mobility is going to be.
Nicole: You mentioned your husband at the beginning and then you mentioned him again just now. I'm curious, what would you say makes your marriage successful after so many years?
Jill: Communication, understanding, arguing. We understand each other's side, even if we don't agree with each other.
We have many things that we completely and utterly disagree on. They come up every once in a while. We have several arguments. We get over it.
Nowadays, people don't listen to hear, they listen to respond. They only hear so they can respond with their argument.
What we do is we listen. We give each other the moment to vent or argue or scream and we listen. But then we reverse roles and it goes the other way. We may not agree. But we know where each other stands. And we have a very strong bond and a very strong willingness to work together no matter what our differences. But for us, our differences are fewer than our similarities.
One thing I relate back to is I'm part Native American. And part of the teaching is that you sit and you keep your mouth quiet while the other person speaks.
You gotta have that give and take and that willingness to work at making things and not just look at the bad stuff. But when that stuff comes up, you've got to sit down, discuss it and get through it. Then there's always something good next.
Nicole: What tips or advice would you have for women who may be newly diagnosed or struggling with MG?
Jill: Well first off, it's not just women. It's men and children as young as newborns. I would tell them or the parent: advocate. Advocate for yourself. Talk. Look up information.
Tip 1: Go to myasthenia.org for the best information.
Doctors don't know everything. You live it, they don't. They read about it. So give all the information you can to any doctor that you're working with. Write down how you're feeling physically, emotionally, mentally, because it all folds together.
Tip 2: Don't be afraid to fire doctors. They don't all know what you need them to know. Go to as many doctors as you need until you find the right one that fits and understands how to best treat you.
Tip 3: If you need mental health support, find a psychiatrist or psychologist. MG is murder on the brain. There are so many ups and downs.
Tip 4: We all need help, so find an organization in your view that is made up of patients.
We are here for everyone else. Those of us who've been through it. And I've only been going through it for over five years. There are new people coming in every day. There are people that have been dealing with it for 30-70 years. We need to stand together. Together is the way that we're going to all make it through this and survive as long as possible.
Tip 5: Humor is always best.
