Updated Blog Post with a New Savvy Paid Opportunity (Gig)
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Weird things started happening in my teenage years that we blamed on growing pains. I would have a phantom spider bite my toe during my high school classes, I would have to get up all night to use the bathroom, and I started getting really tired in my classes freshman year of college. I would double over in pain at few times a week feeling like a knife had been stabbed in my gut, and then it was gone.
My parents sat on the phone with me while I was at a university across the country. They listened to the weird symptoms that just kept pilling on. I remember going to the Student Health Center and feeling so assured that this time would be different, this time I would finally know what was happening to me. Then the immunologist would shake his head and chuckle, and say I was a puzzle. It’s worse than good news, worse than “oh nothing’s wrong,” is “yes, something wrong, but I don’t know what it is.”
Sophomore year after a night sledding accident (you know 19 year olds), I had some minor trauma to my neck, numbness started creeping in and spreading down my left side. That internist sent me to a neurologist, the neurologist said I don’t think it’s MS, but let’s do a MRI to make sure. My parents flew out to Utah from North Carolina to be with me for that review of the MRI. I didn’t find out I had MS in the best way. The MRI report hadn’t been sent to my neurologist, and his office phoned to see if I could pick it up. My mom was waiting in a car with her childhood friend, ready to take me to the neurologist. As I walked through the hospital hallway I snuck open the report and and I read those words, multiple lesions in the brain and findings indicate a strong probability of multiple sclerosis. I read those words alone, walking down the hospital hallway, and when I got to the car I sat with that sheet of paper in my lap, knowing the bomb that I was about to drop on my Mom and wishing that I didn’t have to tell her. I did not fall apart that weekend because I had a support team of caregivers in my family. My parents were there, my brother, my cousins, Aunt, Uncle and Grandparents. I was loved and I had a surety that if or when I couldn’t care for myself that my family would care for me. When I look back on that memory, that aloneness was a very brief moment, because I had love enveloping me from all aaaaaqsides. It made the burden light.
When a young person gets a diagnosis of multiple sclerosis it is a burden that the whole family will bear together. My parents’ daughter was in the prime of her life, having turned 20, planning to head to India on a field study, and because of her MS she would go down a different path.
My parents were my caregivers for years, and then I married my husband and now we are caring for our children. In the meantime, I had the opportunities to still go to India, twice, then France, then Guatemala, then South Africa to get married. I finished my bachelor’s degree though it took me a couple extra years. I have lived a full life and still, and it’s still just getting started. I have had MS for 18 years, and though it is oh so very hard, I am here, living a meaningful life. I did not get to this life alone, but through the loving support of my parents, my family, my husband and his family.
There is so much that still awaits a youth with Multiple Sclerosis. It’s not an ending, it’s a beginning. It’s a hard journey but it can be a rewarding one. The playing field for people starting out with MS is more level than it was at the time of my diagnosis. Advocacy is expanding and people are seeing that life can be well lived by individuals with multiple sclerosis. Sixteen years ago pharmaseutical companies were scratching their heads trying to figure out how to keep us on our drugs and now instead of scratching they are asking us. They want to know from parents, caregivers and patients with Multiple Sclerosis how to best treat, care for, and support people with multiple sclerosis. It’s not just pharmaceutical companies but people and patients acting as liaisons, introducing patients and medical professionals, to develop better treatments and support for people with multiple sclerosis and other chronic conditions.
Savvy Cooperative is one such organization, a cooperative of patients, headed by two patients, Jen Horonjeff and Ronnie Sharp. They connect patients with health innovators to share their experiences and be fairly compensated for those experiences and knowledge. This fight is easier with a network of people fighting on your side. That network is expanding.
I am overjoyed that patients and parents have the opportunity to share their stories to improve the clinical process for individuals with Pediatric multiple sclerosis and their parents. With these two opportunities parents and adolescents with MS can share their experience and improve clinical trials for adolescents with MS. This was an opportunity my mom and I would have jumped at. Finally, medical professionals are listening.
This new opportunity from Savvy Cooperative is a joint opportunity for an adolescent (ages 10-17) living with multiple sclerosis. The parent and child would be participating in two focus groups, separately, from home. The purpose of the focus group is to help professionals better frame the clinical trial process for children and teenagers living with multiple sclerosis. The opportunity provides a $130 gift card, per participant. You will be compensated, if chosen by the provider, after participating in the focus group. If you do not qualify, but know someone who may qualify, you can request a new, personalized link to refer your friend. You will be compensated with a $100 gift card if your referral is chosen for, and completes, this opportunity.
My mother devoted so much time pouring through academic articles on advancements and research in multiple sclerosis it could have been her part time job. I know if you are a parent of an adolescent with multiple sclerosis you may be spending sleepless nights and extra time, on top of everything else you already do as a parent. There is an opportunity now to do something with your time, love and devotion to improve the lives for other parents and adolescents with MS. This is a part of life to be savored, both for kids with MS and their parents. You are not alone, there are communities that exist for you and your child. Feel free to reach out to me. My mom also follows my blog and I’m sure she would be happy to share her experience with you as well. You are doing a wonderful job and helping your child feel supported during this time of uncertainty. I am so grateful for my parents, who kept me going, and helped me feel secure during that scary time of being young and being diagnosed with a serious neurological condition. May God be with you, take care.
The Caregiver’s Guide to Multiple Sclerosis in Children
MS Healthline: This is a chat app where you can find support from other members in the community. Kathy Regan Young, a mother and person with MS is a beautiful woman who acts as a guide in the app. I’m an ambassador and you can find me in the app by my handle: Elizabeth5
In case your interested here are some moments from life with my parents and family. Living with MS is challenging, but it is still a life full of excitement and joy.
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