We conducted a poll on the Patients Journey Facebook Group page, and over 250 MSA patients participated. The question posed was:
“MSA ravages our bodies but it also takes a huge toll on our mental health. What loss from MSA do you or have you feared most?”
While this was not a scientific study, it does help convey challenges, concerns, and fears shared by many MSA patients. The chart above summarizes the most agreed-upon losses (number of “votes” noted)
Additional answers and comments included:
- Loss of relationships such as family or friends
- Loss of hobbies such reading, gardening, knitting, etc.
- Loss of being able to help around the house – leaving all the tasks you used to do to your caretaker
- Loss of communication
- Loss of freedom from pain
- Having friends with MSA pass away
Thank you to all who shared their feelings here. The best way the Coalition can help people understand the disease and its impact is through patient and caregiver stories. This poll tells a story, a story of how one disease’s impact on patient and family members contributes to their emotional health. What’s not seen here is this impact is daily and it is for an extended period of time. That only the patients and caregivers can measure.