One of our AMAZING clients, Jenna, took the time to chat with SALSA (Student ALS Association at the U of A).
Jenna explains her ALS journey thus far in this open, honest, and beautifully written interview.
We hope this story inspires you as much as it has inspired us. Jenna, you are an absolute light amongst us!
“I got diagnosed (with ALS) rather really quickly due to COVID-19. What had initially started me to go down this path was after Ramsey was born (son), he’s a December baby! I had two very difficult pregnancies so I feel like a lot of the ALS symptoms were hidden with being pregnant. In January (2020), I really started to notice the mobility in my hands. I call it t-rex hands, it’s just like the muscles cramp. And I had been experiencing that for years and I just assumed that it was a muscle cramp that never lasted for very long. But then after Ramsey was born, I really noticed my legs were quite weak and I kind of chalked it up to being on bed rest—and then the pseudobulbar effect, the emotions were really all over the map. You know you talk about that postpartum just cause you could cry and you could laugh and go back and forth within 60 seconds. It was a whole whirlwind of emotions.
So in early June, end of May, I really noticed my legs and my arms were quite weak and I couldn’t chalk it up to being postpartum anymore, so I made a call and went to see my local doctor. We talked about what I thought it was. I assumed it was AMS and so I explained my symptoms of weak hands/legs and my shoulder constantly felt like there was a pinched nerve. So I went to the doctor and explained it to her and she referred me to a neurologist in Edmonton at the Glenrose Hospital. And because of the symptoms that I had explained, they wanted to see me in-clinic immediately. So I went to my family doctor on a Thursday and by Tuesday of the next week, I was in the Glenrose starting testing. I had an EMG (muscle test to examine muscle response) right off the hop—and the testing wasn’t going well—and when it was all said and done, the doctor said that it was very serious and he wanted to admit me to either the Grey Nuns Hospital or the University Hospital that day.”
“My dad drove me up to the city and because of COVID, I couldn’t have a family member with me. So he dropped me off at the emergency doors at 7 AM, went in and I said I was there to see the doctor—they pulled up my chart, took a read, and called in the neurology team. I was in the emergency room for the day. They (neurology) started off with the process of elimination. They do blood draws and test you for everything they could possibly think of. Because I was in-house, I was able to get a CT and an MRI that day. By 8 o’clock that night, I was moved into the neurology unit at the University—I then had swallowing and physio assessment. Then on the Friday of that week, the doctor had called another team of neurologists to do a second opinion. So with them, they came in, did the EMG testing again—and they stepped out the room to talk about it. This was close to lunch. They came back at about 12:30 and they had decided that they had ruled out everything else that it could possibly be and I was diagnosed with ALS.
I was by myself in the city. I called my family because they wouldn’t release me until they spoke to my husband. So I called all my people, got my kids sorted out. My dad and my husband came up, spoke to the doctors and I was released— and then the 10th of July, I went to the Kaye Clinic, met my team of doctors, and came up with a plan. So we did that and started medication and therapies and kind of just digesting the news.
And then we bought a house. The house we were living in was too small and was not really going to suit my needs. So we bought a bigger house and my dad and my mum, friends, and community, all came together and renovated it. So we have walk-in showers, we widened all doorways just to be proactive for what our future is. The renovations were complete in November and we moved in and now we just live. My husband always says we live 15 mins at a time and we just do what we need to in that 15 mins and move on.“
“When you get diagnosed with something like this (ALS), you really take a step back and you look at your life and what’s important and what’s not. I’ve always been easy going, go with the flow, that’s my personality— but with a little bit of some high strung in there. Just like you know, the things that would maybe upset you like you burn supper. Like you can be a little hard on yourself, but now I’m like oh you burned supper? Just move on, order pizza. Like the little things have no importance and I’ve been given the ability to look at what’s important and who’s important in your life. Your address book changes, the people you thought would be there for you, maybe aren’t and the people you never expected, they come into your life and so it’s a gift as much as it is a curse. But I look at it and I think okay, you can either spend your days sad or hurt or mad, but at the end of it, that’s not how I want to live. So I have my moments where I am mad or sad, but then it’s over because really, that’s not what’s important.
You find joy in the little things. Like my kids, I'm so much more relaxed as a parent now. So I feel that with this diagnosis, it’s really also been a gift because you think differently about the world around you— what was important to you before you got diagnosed, is probably not important to you after you’ve been diagnosed. And the things that are important aren’t money or status or how many Facebook likes you got. What’s important are the people who are there. In a world where you’re so connected to your phone—I could go without a phone because that’s not your focus anymore. So it’s really been about disconnecting, unplugging, and focusing on the connections that mean something to you.”
“I feel that at first, you’re numb. I like to live in my own happy bubble, so I don’t dwell on the future. I’m realistic. I know what the future will be I guess, but I don’t dwell on it. But at the same time, you have to be proactive, so getting your ducks in a row. My speech has been affected. I used to be a very fast talker and now I feel like I’m a slow talker—so that’s been difficult. With managing (ALS), I am trying all the available drug therapies that I can which within Canada, there’s only 2 approved drugs and I am on both of them now—one of the IV drugs I take is incredibly expensive. But then we figured it out, we got the medical coverage that we needed to get the drug paid for. But I wish I could have known that in July so that I could have started the drugs in July versus October. But I feel that you need to have the right kind of mindset, if you have that negative mindset, I feel like your ALS symptoms are going to progress faster. You need to have a healthy mind and a healthy mental awareness I feel for any diagnoses. But for myself, I feel better if I’m having a good day. If my brain or my mind or my heart is sad, I don’t have as good of a day with my body.”
“So I feel like a big part of it is a healthy mind or a realistic wrap around of what you’re dealing with. You can’t just put your head in the sand, you have to be aware of it and proactive- so start voice banking, thinking about what are your next steps or where you’re going to have deficits. So for me, my speech is going to be a deficit so I want to get voice banking, video clips, and recordings, as well as maybe I need to start researching for an eye gaze, just the next set of equipment so that I already have an idea of how it works and how it runs. I make sure I call my brothers and they call me because I feel like you can lose touch with them if you are not seeing them on the regular due to COVID. So I think for them, their family values have become more important to them as well as for myself. Like we have huge community support, people coming together that you don’t necessarily know, but they’re dropping off a lasagna on your doorstep. People have shown up and weeded my flowerbed that I don’t know, so that’s been really nice. I guess that’s the beauty of living in a small town where everybody kind of knows you. I feel like the community has really come together for myself and my family, so that has been a blessing. You have ALS, ALS doesn’t have you. You really have to find the joy because it can be a long dark road, but it doesn't have to be.”