We started noticing Louis’ slurred speech November/December of 2019. We made a doctor's appointment with our family doctor and we went to see him on January 2nd. He kind of thought it was a mild stroke that he had in his sleep, so then he was sending us for all those tests (MRI, CT scan). Then we were told that the MRI wouldn’t happen until January 20, 2021, a year later. So I asked the people who do the MRIs, what if we pay? They said well you can get it done within a week, but you need a special requisition. So then I phoned the doctor again and he said come on in. So he got us in to see the heart and stroke doctor at the U of A and that’s where they did the MRI and CT scan so we didn’t need to pay…we’d been going through this process all of 2020 and if we would have just gotten that MRI in January 2021, a year would have been lost with our medical system. From the heart and stroke, that’s when the doctor said he sees everything normal with those results. We were referred to the Kaye Clinic, to the neurologist group.
Louis said he started noticing his speech in October 2019, but us, we didn’t notice it until basically late November/December 2019. And he always had twitching, but you don’t hear much about ALS so you think it’s probably just tired muscles, like everybody twitches once in a while right? Then the slurred speech happened and then he was losing a lot of weight. Louis also has Crohn’s Disease and we had seen his doctor for that and he said for him to be on a special diet with lactose-free and gluten-free foods, so we thought that was why he was losing weight, but it was because of ALS… he was tired all the time and he was on the CPAP machine and now he’s moved on to the Bipap and that’s helping him a lot better for sleeping.
It’s changed his life cause he can’t speak, and that’s been tough. He had to go into long term disability September after working with the same company for 40 years. He worked in asphalt, so he was on the street where he had to stand all day, like for 12 hours a day, and he’d come home with hip pains, back pains. So he had to stop. And we’ve always had values, like live everyday as you can and enjoy it, but you know you’ve got that (ALS) now sitting at the back of your head… but we’ve always had the same values. We see more family, we FaceTime them more, more people check in now. But otherwise, we’ve always been family orientated and his friends still keep in touch, but it’s hard when he can’t speak. But FaceTime is the way to go because I can be there, and I can help with Louis’ speech, so that’s what we’ve been challenged with.
Louis has an ALS iPad and he can do the sentences, but he really doesn’t like technology, never has. And even when he was working, he had an iPhone, but he would always speak to text. So it’s been very difficult that way. And his speech has gotten much worse, like a lot of us have a hard time understanding. So we tell him to just give us the one word and he still can’t get it, so he writes it down on the iPad. And his swallowing, he told me the other day that it took him 45 mins to eat a waffle. He also does the tucking to drink his liquids and we thicken a lot of things. And for a lot of foods he did like, he doesn’t want to eat cause it seems as if they have no taste or it takes him forever to chew. He bites his cheek a lot. And we belong to the ALS Society, so I do the coffee/caregivers groups and he’s done the coffee groups and you don’t see many with Bulbar ALS. And a lot of them you’d never know (they had ALS), the ones that we have met through the Society. I think there’s one other person that has Bulbar ALS, but otherwise most of them, they all speak but most of them I think it’s their limbs that have been impacted. Also his hands aren’t as strong as they used to be, but other than that, he is still able to walk. And I always make him a list of things to do throughout the day, so he does keep busy. And my daughter, she lives at home, my oldest, and she helps a lot with Louis, so that’s kind of a blessing since he’s not home by himself. But I’ve moved my job and I’m now only 5 mins away. But we’ve had a great team!
The ALS team? Remarkable, not a negative thing to say. Our appointments are very long when you go there. You go every 3 months and you’re there for 3-4 hours. You see the nurse, the social worker, the speech therapist, the dietician, the psychiatrist, the respiratory therapist and then the last person we see is the neurologist. You can email/phone them and within a day you’ve got a response back. And even the ALS Society, like Deb and Christie, thank heavens for them. Like the equipment we’ve received for Louis, and they are just so supportive. But you know, a lot isn’t said about ALS…like people don’t understand what it really is. And you never hear about it, which is very sad. Some of it is discouraging, but the team is remarkable, we have nothing negative to say. We’ve been blessed with them. With a recent ALS diagnosis, have a great support system and keep a journal of when things happen so that when you have to talk with the doctors, you can keep track of when you notice things. When I go to appointments, my binder comes with me and I write everything down. And one wonderful thing is, they allowed us, the first time we went to meet the ALS team, to record the meeting and my daughters were on speaker, so that’s a very good thing/idea… it was remarkable for them to allow us to do that. Reach out to people and enjoy as much as you can.