Multiple sclerosis: an intruder in my family

Multiple sclerosis sits at my family dinner table as an unwelcome guest each day as there are three generations of the disease in my family.

My grandma was diagnosed with MS in 1964 at the age of 23. Her symptoms started primarily on her left side and progressed, limiting her mobility to a wheelchair. She has been in a full-time home care facility since 2004.

At the time, there were no disease-modifying therapies, so it was difficult to manage and treat her symptoms and progression. The recommended way to manage symptoms was to simply rest.

Auntie Dana was officially diagnosed with MS in 2001 at the age of 39 but reports experiencing symptoms dating back to 1986. She was put on a disease-modifying therapy, but later stopped.

It has been hard for me to see my grandma grow weaker as years pass. I look at her and feel like my fate is sealed. MS is a burden that has put stress on all my family members, but we do our best to remain positive. 

I experienced a minor flare up in 2015 – I had tingling sensations from the waist down. The tingling went away in a week and a half, but I did end up going for an MRI of my brain and spinal cord. The neurologist was unable to diagnose me and because I was feeling well, I thought it was an isolated incident.

In September 2016, when I was 35, I woke up with heavy legs and tingling in my feet. By the end of the day, I could barely walk. I took my niece and nephew to the park one day and couldn’t lift my legs when trying to run after them. I was telling my brain to move but I couldn’t.

Days later, I went to the emergency room with more tingling from the waist down. I met with the neurologist who assessed and reviewed my previous MRI.

I was diagnosed with MS.

Tears streamed down my face. I left the emergency room, sat on the edge of the curb and cried more. I allowed myself to be sad for a couple weeks as I tried to come to terms with the diagnosis. I was overwhelmed, my mind and body were on fire and my spirit was non-existent.

The next few months included some of the hardest and darkest moments of my life. I was trying to be positive, but I was in a full exacerbation. I was developing new symptoms – experiencing fatigue, brain fog, and limited use of my right hand. I would go down the stairs on my butt and couldn’t close my eyes without falling.

The worst time of day was right before bed as my thoughts would turn negative. I would let the struggles, the anxiety and all the ‘unknowns’ build up and I would panic. I felt like I couldn’t breathe.

Despite all the struggles, I’m grateful to have such a great support system at home. My partner, Dan, plays a huge part in my healing process. He was the one that picked me up from the curb at the hospital.

He loves to cook so he makes sure that I get the nutrients that my body needs. During my flare up, my energy was limited, and he took on the extra responsibilities around the house so I was able to focus on healing and gaining back my strength.

It is unfortunate that I wasn’t diagnosed with my first flare up as I could have received treatment earlier and possibly have sped up the healing process, but that’s the unpredictable nature of MS and the uncertainty of diagnosing and treating it.

I began participating in programs and services that the MS Society provided, such as an MS Pilates class and the MS Walk.

This will be my third time participating in MS Walk and this year, I was chosen to be a Manitoba MS Ambassador. I will be walking with my team, Jenny and the MSfits, in the hopes of reaching our goal of raising $10,000.

The MS Society has been making great strides with their research of treatment options and symptom management. I’ve seen how far the research has come since my grandma and aunt were first diagnosed. I’m lucky to have been given a list of disease-modifying treatments to choose from after being diagnosed. I have treatment options and symptom management support that my other family members never had.

With the progress in MS research, I’m striving to see a cure for MS in my lifetime for my grandma, for my aunt, and for myself.