Guest post by MS Walk ambassador, Darcie opens up about how her neurologist’s foresight saved her quality of life.
I like to think that I’m one of the fortunate ones because my neurologist put me on my disease modifying therapy (DMT) right away for my MS without hesitation. Since I’ve been on it, I haven’t had any relapses – it’s been seven years now. His theory was why wait? He’d seen good results in other patients who have multiple sclerosis and took this DMT, and because I hadn’t been on another medication he thought it would be the best option for me – I like to think that my neurologist positively changed my life. I take a once a month transfusion, and although it has its documented side effects, I haven’t run into any issues and it’s drastically changed my quality of life. So now I can still do everything I enjoy doing, but I just have to make sure that I don’t get overtired. I still play volleyball for an hour and a half twice a week, and I’m still able to work full-time, which I’m thankful for.
MS research has improved my quality of life in terms of providing me with an available treatment for my MS. If it wasn’t for this DMT and the fact that my neurologist saw the potential for this drug to help me, I wouldn’t be where I am today. Both of my relapses before I went on this drug were quite severe, and I couldn’t imagine what my future would have looked like without it. But I do know that there’s no end all be all in terms of treatments, and that what works for one person might not work for the next. There’s also much more information about MS since I’ve been diagnosed.
Right now, the most difficult thing is not having enough time and energy to do everything in the day, so sometimes, especially when it’s stressful at work, I’ll come home, cook super and then have a nap so I’m able to continue into the evening. I’m not always able to cook nutritional meals like I used to, because it’s hard to make the effort if I’m not at my best. I have 2 adult children with their own neurological issues, my son Kyle is 24, has high functioning Autism and lives at home with me. My daughter Tyra will be 21 in May, and has Irlen’s Syndrome. I’m very proud of them both and it’s very important for me to be their support.
Some people may not know this about me, but I’m a science fiction fan and love action movies like Marvel, Star Wars, and Star Trek. I also participate in cosplay for comic expo’s. There are two conventions held in Saskatchewan and I enjoy going with my kids, who also like anime and gaming. My daughter and I usually go in costume – we see what we have around the house and then buy whatever else we need – last year I went as a Klingon! If I had to pick a favourite movie it would the original Star Wars – I’ve seen it about 25 times.
I’ve been involved in MS Walk for 15 years – it started when I got hired at Saskatchewan Blue Cross, our title sponsor here in Saskatchewan for the past 20 years, so the MS Walk has always been a big event at our organization. At first, I supported the cause along with my coworkers as I had a co-worker with MS and another with a spouse with MS. Little did I know that 5 years later I would be diagnosed and it became personal. I admire the comradery I see at the event – you’re among strangers but they’re not strangers, they’re family – just in a different way. I want to thank everyone who walks each year and joins our MS Walk family. Your involvement helps me and the people I know who live with MS, feel understood and cared for, and it’s a great feeling!
Throughout the month, we’ll be profiling people who are determined to improve their quality of life while living with MS. We’ll be sharing examples of what living well with MS means to different people affected by MS, and we want to know your tips on how you manage to maintain your quality of life. Whether you’ve benefited from advancements in MS research, or make sure to get that extra hour of sleep, we want to hear about your #LifeWithMS!
Glad to hear your doing Well, it takes the right medicine for all.
I have just been put on one (fampyra) witch seems to be helping!!!
Thanks for sharing.