By Elizabeth Crolley
When my dad received his MSA diagnosis, I wasn’t sure what to do except be there for my family. My dad was officially diagnosed five years after the onset of his symptoms, and unfortunately passed away not even two years after diagnosis. 9 months after his passing, I am now realizing there were a few things I wish I had done in that time. As a daughter of an MSA patient, I want to offer my perspective.
Spent more time with my dad
This may seem like such an obvious one, right? The thing is, from the time my dad received his diagnosis, we’ve been battling the Covid-19 pandemic (he was diagnosed October 2020). I was very cautious during the pandemic and tried to minimize both my parents’ risk of contracting Covid by limiting my exposure and visiting them in person less. I did what I thought was right at the time by keeping them safe. I don’t regret what I did because it kept both of them from contracting Covid, but I wish I could have planned better and made it possible to spend more time with him than I did the last two years.
Researched support for MSA patients in my parents’ area or online options
Another thing I’d wish I’d done was research what support was out there for both my parents and our whole family for MSA patients. My dad did receive things such as physical therapy at home but living in a rural area I think sometimes severely limits access to care. I wish that I could have supplemented that by finding a support group online so that we all could have felt a little less helpless and alone, my dad included.
Educated myself more about MSA
I wish I had taken the time to learn more about MSA. Being a rare disease, MSA wasn’t something anyone in my family was familiar with. I’m not sure how much my parents were educated on it by doctors because I wasn’t in those appointments; but I think getting to know the disease a little more may have lessened some of my anxiety surrounding my dad’s condition. I also should have researched what support was out there for both my parents and our whole family for MSA patients. The MSA Coalition seems to be a great resource for all these things… a resource I wish I knew about sooner!
Took more photos and videos
This is something I cannot stress enough. My dad was a man who wasn’t keen on taking many pictures and getting him to smile was such a difficult task. My younger self used to tease him about his driver’s license photo and that it resembled a mug shot; it totally did! Videos of course were even harder to capture. I’m lucky to have video from our wedding of our Father-Daughter first look, our dance, and him walking me down the aisle. We also have some old photos in print at my mom’s house. I just wish I had taken more candid photos of him from visits, took photos of all of us at holidays, things like that. I’ll always have my memories, but I wish I had more concrete evidence of them.
Took more time off work after my dad’s passing
I know this will probably be something that varies from person to person, but I wish I had taken more than two weeks off after my dad passed. It wasn’t nearly enough because I was also (unknowingly at the time) battling Covid which left me exhausted for weeks after my dad passed and I returned to work. I think returning to work so soon really delayed my ability to process this life-changing event that happened. Again, I know this is different for everyone. I was incredibly blessed to have two weeks off and I recognize that, but I wish I’d had another week or two myself to really rest, heal, and process.