1) I enjoy socializing even though I cannot speak back. I’m interested and am listening when others tell me about themselves. I like to hear about how people are doing, their families, hobbies, vacations, experiences, weekend activities, etc.
2) I wish to be spoken to as a person and an adult. Please speak to me normally by not using slower or louder speech, or a reduced vocabulary and sentence structures. I like to be part of the conversation by making eye contact and being spoken to directly.
3) It’s easier/quicker for me to be asked ‘yes’ or ‘no’ questions.
4) When we’re together you can talk or not talk, either is fine. I’m comfortable with quiet too.
5) I use a piece of cardboard with the alphabet written out to communicate, we call it a Ouija Board. I can point to letters to spell out words. I need someone else to hold the cardboard and adjust it as I go. It can take a while for me to spell out sentences so I appreciate everyone’s patience. It’s ok if you don’t understand a word the first few times, as Tom and Adrianne can attest to.
6) When I’m using the Dynovox communication device it’s ok to fix letters/autocorrect for me.
7) A symptom of MSA is excessive drooling. If you’re comfortable doing so you can use a tissue or washcloth to wipe my mouth.
8) The best way to contact me to make plans is on Tom’s cell phone through call or text. I check my email and Facebook messenger every couple of days and am happy to get messages there too.
I hope these eight tips on how to communicate to those with MSA are helpful for everyone! I love having friends and family visit and appreciate all of our time together.
With Love,
Jackie
A Multiple System Atrophy Awareness Video
Featuring Jackie VanDenberg
About The MSA Coalition
The Multiple System Atrophy (MSA) Coalition is a 501(c)(3) charitable organization with a 30-year history of devotion to improving the quality of life and building hope for people living with MSA. The four pillars of our mission include:
Education: Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information.
Trusted Emotional Support: Providing patients and caregivers with trusted and compassionate emotional support.
Community: Building a sense of community by connecting and unifying people affected by MSA.
Funding Patient-Centric MSA Research: Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure.
