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When Danielle was diagnosed with Multiple Sclerosis, her brain and body changed but her personality stayed as A-type, plan-ahead, no-limits as ever. Read about her diagnosis journey and how she’s learning to navigate the unknown and embrace rest.
Can you tell us about your MS diagnosis journey?
I remember the start of my MS journey as vividly as I remember meeting my husband, my wedding day, the birth of each of my kids. The attack was eventful, significantly debilitating, and I remember it like it happened last week.
I had two days of blurry vision, the kind you can blink away and blame on fatigue. The third day I had diplopia (double vision with the double stacked on top of the original) that came and went. By day 4, I couldn't walk in a straight line and walked into everything drifting to the left despite every effort to go straight.
I consider myself very fortunate when it came to getting my diagnosis. I went to the emergency department on day 6 of my symptoms which happened to be a Sunday; worried about an unusual stroke presentation or something similar. A CT scan and very basic neuro exam had me headed home with referrals for Ophthalmology the following day and a Neurology consult.
It was suspected that I was experiencing a fourth nerve palsy in my left eye. Ophthalmologists agreed and gave me a prism for my glasses and sent me home. I had my neurology consult and they felt the fourth nerve palsy was the most likely but put me on the list for an MRI in 2-3 months.
My physical baseline for balance, strength, and range of motion were much higher than average as a dancer, runner, and someone who lived an abnormally active life, which made the neuro exam frustrating because my results were all very "normal" but so much below my baseline that it was hard to feel understood.
Three hospitalizations, many rounds of steroids, 2 MRIs, a lumbar puncture, and exactly 4 months later, I had a diagnosis.
What were some of the challenges you faced early on?
Oh, the challenges... When I am being my most honest, I have to admit that the biggest and hardest challenges at the beginning are the ones I still struggle with now. I can easily admit that I am the definition of an A-type personality - I have a plan for everything and at least 5 heavily detailed backup plans for the variety of outcomes. I would prefer to be prepared for every outcome and therefore "manage" any unknowns. I’m also a perfectionist, and someone who embraced and embodied the idea that there was nothing I couldn't overcome if I worked hard enough.
Enter MS, one of many illnesses that are all about the unknown. Waiting for the diagnosis, waiting for treatment options, waiting for the treatment options to fail because the only way to know they’re working is to not have another attack, but how long will it be until the next attack? A few weeks, 3 months, 5 years just waiting for the flare to settle so you know what symptoms you’re left with.
The biggest challenge for me is that my personality did not change when my body and brain did. My personality still has me wanting to finish the task when my body and brain are screaming for a rest. When I listen to my body and rest, I wrestle with the tasks I could have done if I had just pushed through. I want to make plans and back up plans for those plans, but I can no longer anticipate what the unknowns might be.
“The biggest challenge for me is that my personality did not change when my body and brain did. My personality still has me wanting to finish the task when my body and brain are screaming for a rest.”
What brought you to Synaptic, and what were your goals when you started?
As someone who was super active and in really good physical condition before my attack, and someone who worked in the medical system, I wanted to try and regain as much function as possible - even before I knew what I was treating.
My mom actually gets the credit for finding Synaptic through an internet search. I looked at the site and got on the wait list the same day!
I can say that of all of the things that make living with MS easier, Synaptic is top of the list. My goals when I started were to get a really good objective baseline of what my body could do. Then I wanted to start with balance so I could be in my house or backyard and not fall over because I turned around or looked to the side to see my kids playing while I was standing still.
I certainly had much bigger goals and dreams for my "full recovery to normal," but the team helped me to break down the big goals into pieces.
How has the Synaptic team supported you?
The Synaptic team has become a family to me. Every time I come in, they ask how I am feeling today. It may seem like a small thing to most people, but in the beginning, I could have never anticipated how significant it would be to have people who really understood that not only day to day but hour to hour I could feel so different.
Being able to come to Synaptic or Elevate and not having to explain MS - why I need mobility aids today but didn't 3 days ago, why the amazing program they developed for today needed to be changed because my body was not up to it - has been a lifeline.
Synaptic has been my safe place, a team of support for all of me not just my neurological health. The staff motivate me when I need to be patient with myself instead of pushing too hard, make me laugh when I beat myself up because the easiest things are now hard, and help me to maintain perspective when I have a flare or pseudo attack that sets me back.
“Synaptic has been my safe place, a team of support for all of me not just my neurological health. The staff motivate me when I need to be patient with myself instead of pushing too hard, make me laugh when I beat myself up because the easiest things are now hard, and help me to maintain perspective when I have a flare or pseudo attack that sets me back.”
I have managed many physical improvements, then relapses and more improvements with the team. The creativity they use to develop the sessions and the well-rounded approach I get working with so many practitioners has taken me further in my rehab than I think I could have gotten anywhere else.
Do you have any resources or advice you'd like to share with others who have been diagnosed with MS?
Advice is a hard one. EVERYONE has advice and I think mine is to do what fits you. Diet changes to manage your disease, disease modifying therapies as a prevention, physiotherapy, massage, counseling, life style overhaul - there are so many options which is kind of great because MS looks so different in each person, but what works for you might not be what works for another person.
When you can, surround yourself with a village of people who will support your choices and help you with whatever you need.
Most important though is to advocate for yourself. Keep going back to the hospital when things are not right, leave another message for the clinic even if you feel like you are harassing them, don't sit and politely wait for someone to recognize or remember that you needed something. This is not to say anyone has the right to be rude or unkind, but speaking up often, asking your questions, and taking charge of your health is something no one else can do for you.
What does MS Awareness Month mean to you?
MS awareness month is a tricky one for me. I find there is easier access to information during MS awareness month, but having an awareness month doesn't necessarily help people understand the illness. The month is filled with so much information that I’m not sure people take the time needed to understand unless they are personally affected by it.
But sharing personal stories like mine hopefully helps people understand MS better. As someone who lives with MS, I read stories about people I have not and may never meet but I find a commonality and feel less alone in dealing with this symptom or that thing.
And I hope someone out there reading about my MS journey right now feels less alone in what they’re going through.
“I hope someone out there reading about my MS journey right now feels less alone in what they’re going through.”
