I was diagnosed with MS a little over 19 years ago. At the time, I was 20 years old. I used to have MS attacks (symptoms flare out of control) frequently - every 5 or 6 months - but today it's been 21 months since I've had an attack. And over 22 years ago, I woke up with tingly legs and MS began. 19, 20, 21, 22, ... I'm a numbers geek.
A year after I was diagnosed with MS, I was one of the first to go on a drug called Betaseron. It's in a class of drugs meant to slow the progression of MS by about a third. I don't think it worked for me. There could be multiple reasons - one is I developed an immunity to it and the other is that my MS is weird. After Betaseron I tried the next newest drug, called Copaxone. It worked somewhat for about 5 years. Then I had a reaction to it which is considered "normal" - chest tightened, hard to breathe, hit all of a sudden - it definitely didn't feel "normal." It felt like, well, I couldn't breathe - I suppose it felt like I was going to die. A week later the same thing happened but my entire body shook for an hour afterward. And a week after that, the same thing happened again, but I shook for over 2 hours. I stopped Copaxone - I would have wound up in the emergency room at the least. Then I tried a couple other drugs which didn't work. Then I had our daughter, Lori - a pricelesss gift.
Right before I found out I was pregnant with Lori, I was investigating having an experimental stem cell transplant at the University of Chicago. Thank goodness for Lori. Right when I was about to make the decision to do something very risky, it seemed something was saying no - there are other plans.
I considered 1 more drug after Lori was born - it's called Tysabri. At first Tysabri seemed like it would be great, but over time, something didn't feel right about Tysabri, so I decided to wait. I recall our pastor saying, "you know I'm not going to make this decision for you, right?" Darn! After my decision he asked what I was going to do instead. I told him I would wait and hope for the best. I suppose waiting with MS can be a common thing to do.
After shoulder surgery, a friend asked me about Ampyra. Ampyra is not meant to slow the course of MS - it's meant to help with walking. But it has done so much more for me. I didn't realize what I couldn't do, but life has changed and now I can do these things:
- lift both feet with my heels on the ground
- do 100 squats, almost every night
- walk around the track without stopping
- write with a pencil
- walk further, and further, and further
- sit up straight
- while sitting, play catch or frisbee with my family
- other things - life is just sharper
So 21 months in with Ampyra. I haven't been really sick either. I think when I'm about to get sick I get very tired and go to bed - that solves things. My daughter has had 2 nasty colds and I've had a scratchy throat.
All this has been going on and is really exciting. And while a happy post with no obstacles might be nice for some people, there is still reality. I walk much more and get asked "wouldn't a wheelchair be easier?" I guess I'm not in this life for easier. The obstacles with a walker are annoying - getting a door to open is hard. People who don't know me think I'm struggling when I'm doing much better.
And while I get better, perceptions in society persist. When a person with MS discloses they have MS, things change - perceptions change. They don't change with everyone, but they do change with some - I think there's a group of people who go look MS up and find everything that could go wrong and assume, because I can't walk well, that I must have other things. I was actually told, after I left a job, that when I was interviewed someone asked if they could question my mental ability to do the job since I have MS. In the list of MS symptoms is short-term memory loss. I don't have it any more than any other mom, but some people look for that. If I forget something, a few people wonder if it could be MS, even if it's losing my keys - which I think I inherited from my mom - definitely not MS! I suppose that part of getting my Masters was proving, to myself and others, that mentally I am fine. And yet, I have this feeling (and these feelings are usually right for me), that some people want to use the listing of short-term memory loss on me. When they try it - it's been tried - it fails. And this kind of thing - making things up about disability without knowing the person behind the disability - are what cause many problems that people with disabilities experience every day.
And although the previous paragraph may seem out of place here, the fact is that as I improve on Ampyra, it doesn't mean there aren't still obstacles thrown in my face, or attempted under the radar. It's a mixed bag - one moment I'm walking and walking and walking, and the next moment something strange happens that is beyond my control.
But the good news is that I continue to get better, little by little, and refuse to accept that any given thing may not get better. One just never knows.
22 months ago I unknowingly entered into the world of disability. For 21 months, I have experienced life changes in an exciting way I never expected. I was 20 years old when I was diagnosed with MS. That was 19 years ago (yes, I'm 39). Those are the facts.
So I try to throw the bad stuff over to God, and I celebrate the facts that Ampyra has changed my life and I continue to improve.