If you have not met Monica she is fantastic. This woman is a force to be reckoned with–she is a mom of a child with an ultra rare disease who has successfully started a foundation and raised enough funds (and momentum) to support research in a disease state that has barely a handful of cases. In addition, she is smart, fun and kind and generally a delight to be around!
These days Monica and her team have been busy. I asked her to send over a quick update of what their organization has been up to, but first let me give you some background on SYNGAP1.
So, whether you are a family affected by SYNGAP1, (or other special needs parent), a researcher, clinician, a curious person with epilepsy or just a fellow advocate, I hope you will join my chat with Monica Weldon on 3/27 on Instagram Live at 12pm PT/ 3pm ET / 7pm GMT.
You can find the chat at @livingwellwithepilepsy. Don’t miss it!
I love running. I just love the feeling when you get out there and can feel the sensation of those feet on the ground. It is a wonderful feeling. I have loved running since I started at the age of 13. However, my ongoing ability to run whenever I wanted and to the intensity I desire changed when I was diagnosed with epilepsy at the age of 19. I have focal seizures with impaired awareness and one common trigger for me is intense exercise. This has caused an ongoing frustration for me, but I never let it stop me from exercising. I can still run, just need to do it at a moderate pace. I can cycle on a stationary bike to a maximum intensity and not have a seizure, but for some reason running often can trigger my seizures.
Becoming a mother
I am now a mother to a 16 month old wonderful little boy. Isaac is happy and playful and my pregnancy was great. No issues at all during and my seizures reduced to about 6-8 a month. Since becoming a new mom, my exercise has been occasional runs or pilates, but not much. I go for daily walks of 3-5 miles, but that still doesn’t feel like much to me. I have gained weight as a result of my new medication making me feel hungry all the time and also just having a bit more of a belly than I did before I was pregnant! I want to get back into pre-pregnancy shape again. But, how do I do this when I am always tired, work full-time, and don’t want to risk a seizure when I am home alone with Isaac? This has been an ongoing struggle over the last year. However, with my husband’s support, I have started to run again. A couple of days a week of 3-4 miles and it feels great. I make sure I don’t give in to my urge of going a bit more on one day, just so I can feel more confident I won’t have a seizure. I have also incorporated legs, arms, and ab workouts into my weekly routine.
Finding a routine
The move to overcome my fears and constant worries is a good thing. I love feeling a little bit sore. Feels wonderful! I love the fact that I know I am helping my body. I also know that exercise is beneficial to controlling one’s epilepsy and I want to make sure I don’t let any worries prevent me from aiding a decrease in seizures. The way I’ve been able to do this is to exercise after Isaac has gone to bed. I’m usually very hungry by about 7pm, so I make sure to eat a banana and other quick food before I start the bedtime bath and read a story routine. My husband has usually gotten back from work around that time, and so I pre-plan by getting into my running gear before bedtime and then once Isaac is asleep, I run! It is a hard thing to balance all of these things in our lives, but it is wonderful to still feel those feet on the ground.
The topic for this blog was hopes and dreams for the next decade, which is a really scary prospect when you have a medical condition which isn’t necessarily going to stay stable. This is particularly relevant in this age of Coronavirus and the increasing number of cases of COVID-19.
NOTE: Join Jessica and Hayley on Instagram Live 3/24 at 12pm PT/ 3pm ET/7pm GMT as they chat about how this story is relevant to so many now!
However, I do think it’s a great incentive to those who have epilepsy and other chronic illnesses to be forward thinking and positive, as we spend so much of our time (especially if our seizures aren’t controlled) living from one day to the next, never knowing when plans might need to be cancelled.
I’m 37 and my biggest dream is one which existed before my epilepsy became unstable and is kind of ironic as now, I’m currently not working, I might actually have more time to work towards it. I really want a PhD by the time I’m 50.
Don’t ask me why, I don’t need one for any specific purpose, but I love learning and academia. And yes, it’s entirely possible to learn without working towards a PhD, but that is my personal goal. I was a teacher and as soon as I’d completed my teaching qualifications, I began contemplating what I was going to do next. It’s also one which I like as since, barring the odd very slight memory lapse, I don’t really have any cognitive impairment, it’s not something which I can see epilepsy getting in the way of (plenty of other things, such as my husband, might get in the way, but not epilepsy!). As far as hopes and dreams go it’s tangible and a little bit ludicrous at the same time.
My next dream is to make the contributions I have made towards the epilepsy community continue to count. I’ve never been driven by money (this is probably a good things since most epilepsy organisations are charitable foundations) but I’d love to continue to see my articles being published and shared and be able to make a physical contribution to ending stigma relating to hidden and chronic conditions. I’m working really hard at this at the moment to establish myself as a freelance writer and my long term goal is to be used regularly in the healthcare sector for research articles and have also been reaching out to local schools and colleges (using my past work experience as leverage) to go in and give talks to students about epilepsy awareness, not so much from a medical perspective, more in terms of helping friends or family deal with it and giving practical advice which is often not covered (for example if you have a friend with epilepsy organising inclusive activities every once in a while which don’t involve late nights or alcohol and picking up missed classwork for them).
Making a difference
When I trained to teach, I did so because I wanted to make a difference, and although I can’t teach at the moment that continues to be my driving force and using my epilepsy and whichever direction it leads me in seems to be as good a way as any other.