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A day living with spinal cord injury

The last time we spoke to Laurie Allen, who is quadriplegic as a result of a fall in 2015, she’d just finished a modified triathlon in her hometown of Austin, Texas, USA. Now, with two months to go before the annual Wings for Life World Run to raise money for spinal cord injury research, we caught up with the funny, determined and unabashedly honest multi-tasker for insights on her day-to-day life.

Laurie, you’re married and are a senior vice president for a software company. What is everyday life like for you with quadriplegia?

When this happens, one of the biggest things you lose is time, because everything takes so long to do. The other big thing you lose is freedom. For example, a caregiver comes at six o’clock every weekday morning to help me get ready, because I can’t do everything by myself yet. So it doesn’t matter if I didn't sleep well or went to bed late – I don’t have an option about when I’m going to get up.

Then what happens?

I am always very stiff in the morning; so when I start trying to move, I have muscle spasms. And then I begin the day by using the bathroom. Glamorous! (laughs) When you have a spinal cord injury like mine, it’s a process and requires some time, even with a caregiver.

How do you bathe?

I can mostly do my own shower, but I spray the bathroom with water, and it also takes time. Another challenge is that I don’t have feeling in my hands, so I can’t sense things like whether I’ve gotten the conditioner out of my hair. Those little things that you take for granted!

What about getting dressed?

The caregiver transfers me back to the bed and helps me get my clothes on. It’s about time management. It would take me an hour just to get dressed if I did it all by myself.

Next you’re out the door?

I transfer to my wheelchair and gather my computer and my lunch – which involves thinking ahead about things like what container I can open by myself at work. Then it takes me several minutes to get into my [specially equipped] van and ready to drive.

What about at work?

I can’t open the door to the building, so someone else has to let me in, but once I’m at the office it’s pretty normal. I’ve found a docking station that I can get my computer into and out of by myself, I use voice recognition software, and I have cuffs on my hands with styluses that I use to type. They’ve moved the microwave where I can reach it, and I’ve figured out how to open the carbonated water I bring with my teeth!

Let’s jump to after work.

I lift weights twice a week with a personal trainer. I also do physical therapy once a week at my house, so that I’m working on transfers and such in a real-life setting. I try to ride my bike twice a week, although it takes other people to help me get on and off, and when there’s enough daylight I get in my racing chair once a week as well, also adding swimming.

Once you’re home with your husband, what’s the evening like?

The thing that’s difficult for me is that I always did the cooking because it was a hobby I loved. My husband hates cooking, but now it all falls to him. He has to cook and clean up, and then it’s the process to get me into bed.

Bedtime – easier said than done?

I can transfer myself into the bed and get undressed, but usually my husband does it to save time. And depending on what I’ve done throughout the day, my arms are just really tired. I have to wake up in the middle of the night and get into a different position so I’m not getting pressure issues from lying on one spot of my body too long. That’s my day!

You’ve said before you were never a person to sit still. What is this like for you?

I was not a patient person at all, and now people tell me, “You’re so patient” – but what else am I going to be? There’s really no option. There are many hard things, but I want to focus on the positive. There are lots of things you just have to laugh at.

Given your day-to-day challenges, what do you hope for from spinal cord injury research?

For me personally, it’s not the big things like walking. It’s the smaller progress science and research can make to improve our daily lives. To get a little bit of bowel and bladder function back, or some hand function, would be huge. And we are seeing progress in those areas as well as toward the larger goals – I’m seeing it myself in my own community.

And you’re still planning on participating in the Wings for Life World Run on May 6? 

Yes! Several of us are putting together an App Run in Austin, which will include a wheelchair accessible route. We hope lots of people will join us. But that’s what’s special about this event: we’re all racing together at the same time no matter where we are, and everyone who takes part or donates is really making a difference. 

So is there anything you’d like to say to those out there reading this?

We will find a cure one day. And every step we take in this research has the potential to provide those of us living with a spinal cord injury a better quality of life. Do we all want to walk? Of course we do. But in the meanwhile, we would be thrilled to have an easier day, each and every day. Please join us in progressing this research forward by participating in the Wings for Life World Run!

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