Navigating the Emotional Challenges of Primary Progressive Multiple Sclerosis (PPMS)

Caregiving for My Mom Through the Years

Stephanie’s Story

“It all began with a toothache-like pain in her lower face. After several dental visits with no answers, her family doctor ordered more tests. It took multiple doctor’s appointments and emergency room trips before a neurologist finally said, 'The good news is you don’t have a tumour, but the bad news is you have multiple sclerosis and trigeminal neuralgia.' My mom, Carm, was diagnosed with primary progressive multiple sclerosis (PPMS) in 2014, when she was 52. 

From there, her life changed dramatically. At first, she had an Expanded Disability Status Scale (EDSS) score of 2.5, and though we knew it was a progressive condition, none of us fully understood what lay ahead. Fast forward almost a decade, and my mom’s EDSS score is now 8.5. She’s lost most of her mobility and is now bedridden. 

Carm, in a pink striped top, lying in bed holding a plate of food while Stephanie smiles.

Watching her decline has been devastating. Her symptoms started with facial nerve pain, migraines, and fatigue, but over time her body deteriorated. At first, she used a cane, then a walker, and eventually a wheelchair—all within the first few years after her diagnosis. When complete lack of balance and coordination took over, getting in and out of her wheelchair became too difficult without risking falls or injury, so now she spends her days in her bed. She’s fighting to keep mobility in her right hand and arm. Brushing her teeth is one of the few things she can do independently. Pain is a huge challenge for her, and she needs daily doses of pain medication to manage. It’s difficult to see someone you love go through something like this, and feeling like there’s so little you can do to help. Day-to-day life for my mom revolves around a lot of support and care. She has breakfast in bed, followed by pain management medication. Personal support workers visit throughout the day to help with her hygiene and physical therapy, and a nurse comes over when needed. Our healthcare team is vital in supporting my mom's quality of life and care from home and providing my family with some relief.

Carm, in a pink pajama top, lying in bed holding her grandson, with her other grandson and grandnephew standing beside her.

My mom stays connected with family and friends through her iPad, which has been great to help keep her spirit up. She also spends time doing research on MS and keeping up with the latest information on treatments, which we’re all hopeful about. Our family gathers for the holidays at home because asking my mom to travel is out of the question with the complexity of her care. She’s still part of every family gathering – she’s a mother, daughter, sister, aunt, and now a Nonna – all from her hospital-grade bed in our home. Even though it’s difficult to watch her MS progress, it’s made us all more caring and compassionate. Her 6-year-old grand-nephew even sneaks her treats through the bed rails! 

Living with PPMS has been emotionally draining for all of us, especially my mom. She faces physical pain and the reality of losing her independence. She used to be able to walk a few blocks for groceries, and now she can’t leave her bed without help from two people. She’s completely dependent on others for nearly everything, which has been a huge adjustment. But through it all, my mom’s kept her faith, which has given her the strength to accept her situation. 

As for me, being one of my mom’s primary caregivers has changed my life. I’ve grown up fast and become more considerate, always thinking about how I can balance my life with caring for her. I try to make time for little things, like giving her a manicure or sharing a cup of tea. We have a special bond. It’s made me a better person, but it’s also made me extremely aware of how serious and life-changing a disease like PPMS is.

   Stephanie walking at an MS Walk event, wearing a white top and green backpack with a bib reading “I walk for mom.”

I don’t think many people realize just how severe MS can be, particularly PPMS. It can strip you of your ability to walk and slowly takes away your independence. If there had been treatment available to stop my mom’s progression when she was first diagnosed, it would have been amazing. That’s why supporting MS research is so important to me and my family. We participate in MS Walk every year for my mom. She joins us via FaceTime, and it’s become our way of supporting research, raising awareness, and connecting with others in the MS community. It helps us feel like we’re contributing to finding a cure and gives us hope. 

We’re especially passionate about research aimed at repair and remyelination for people with PPMS. We hope that one day, there will be a treatment to stop the progression of MS and even reverse the damage. The hope that research brings is what keeps us going.

Carm, in a pink pajama top, sitting up in bed, with a grin on her face.

If I could give advice to families facing a new MS diagnosis, I would say to keep a sense of humour. Things will happen that you can’t control, but you CAN control your reaction. Also, build a strong care team, because it really does take a village to care for someone living with MS. And don’t forget to take care of yourself, too. This journey is hard, but staying connected with loved ones and finding strength in faith can help make it a little easier.”