Julie Niehoff

“When people ask me what it’s like to live with ALS, I sometimes say, “I feel like myself … but in someone else’s body…” 

I would say it all started early in 2014 with my left hand, I was dropping things a lot like keys, pencils, “butterfingers” kind of stuff. I didn’t really think anything much of it. 

But in first grade we teach finger spacing where you put two fingers down on a piece of paper for spacing between words and I noticed when I was trying to demonstrate that with my students, I couldn’t put my two fingers together when I put them on the paper.  No matter how hard I tried, I couldn’t put them down together. I thought that was weird, they shouldn’t not go together. 

I went to the doctor, my primary care at first, and he sent me to see a neurologist to see what they say. It was a month until I could get in and at the time I was getting twitching in my fingers and it was only happening in one hand.

They did all these tests and said, “Oh you must have carpal tunnel, and you can do exercise.”  They gave me a brace and some exercises to do and said that should fix it.  I thought, “That’s weird, I don’t feel pain. I’m just dropping things so that doesn’t seem right.”  So, I went back to my primary care doctor and said, “Look, I don’t believe what this doctor is saying, can I get a second opinion?”  

When I told the neurologist this and he did another test, he thought I had ulnar nerve in my arm, where the nerve in my funny bone pops out. At the time I was going to the gym a lot, so they thought I just knocked the nerve out at the gym. So, they said I had to have surgery, and they were going to put the nerve back in place and it would be a 6-week recovery. 

I told my class and the parents about it and got a sub to cover for the six weeks. Three days before the surgery, the surgeon called, he wanted to make sure that was really the problem. My right arm was doing the same thing now that my left was.

By now, I couldn’t take the gas cap off, pump gas, or put groceries in the car. I couldn’t really grip anything or raise my arms very high. The surgeon said, “Wait a minute, I don’t think you have ulnar nerve, I think it’s something else.”

On the plus side, I’m glad it was before the surgery. But now it was December/January time frame, 2014-2015, and I still didn’t have any answers. I saw another neurologist and he said, “I think you have ALS, but I can’t diagnose it. But let me send you to this doctor at USF.” 

I didn’t know what ALS was or what that meant so I sat in my car and looked it up. Never Google when your doctor tells you you have something! I was reading all these things and like, oh my gosh. I thought, “Well, you have that a little bit, but no way, this can’t be me, these people are way beyond what I have.” 

I called USF and they got me in the next day. I was 35 and a female, most with ALS I read were over 45 and male. So, I got right in, and they did the tests again. I still had bruises from the last tests. This time they did it on my tongue, cheek, everywhere. Dr. Vu was great, but he said, “I’m not sure if you have it because usually you have at least one other symptom; usually your speech starts to go or something else.” 

I left and thought, “Great, do I have it or not?”  Soon after, I started having more problems. I went back to Dr. Vu and told him I couldn’t do any of the things that I took for granted, like picking up my daughter. Finally, he diagnosed me in May 2015 with ALS. 

Okay, now I have ALS, what can I do about it?

I don’t think I was 100% convinced because I still just had problems with my arms. They went ahead and fitted me for a wheelchair. I thought, “Yeah I’ll go ahead and do that, but I probably won’t need it,” and I’m still teaching at this time.

I was still driving up until November/December, but I couldn’t fasten my seatbelt, and I couldn’t get my daughter out of her car seat. My friend would pick me up every day and take my daughter and me to school. And then in January/February 2016, I took a leave of absence.

I decided that summer that I would retire. Since I had eight years of teaching in, I was able to get my retirement in disability which was great. Otherwise, I would’ve lost everything. 

My breathing capacity was 95% when I first started at the ALS clinic and now, I’m only at 8%. I talk a lot to friends all day and that doesn’t help, they say I should save my breath, but that’s just me and the type of person I am and I’m just going to keep talking until I can’t talk anymore.

I’m on a vent 24/7 so I have a little pipe, kind of looks like a straw, and I breathe on it, and it brings air into my lungs. I found out when I talk long, my voice will start fading so I have to take a breath a lot.