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Guest Blog by MSA patient Jackie Vandenberg

I wrote this letter to my friends and family so they would better know how to communicate with me due to speech issues associated with multiple system atrophy. Others might find it helpful in communicating with their loved ones as well.

Dear friends and family,

I always appreciate when friends and family come to visit. I noticed lately that some people struggle knowing how to talk with me as my ability to communicate decreases. I have brainstormed a few things on how to communicate with me and other MSA patients struggling with the speech:

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.