Donna Whittaker joins us on the blog today to share about her vision of the revitalized St. Joseph Support Group.
The revitalized St. Joseph, Missouri, patient Myasthenia Gravis group is planning its second meet and greet on Sunday, March 12, at 2 p.m. at the Rolling Hills Library, 1904 N Belt Highway. The meeting room is wheelchair accessible immediately inside the lower doors on the south side of the building.
Why is it call the ‘revitalized’ group?
For several years, an active group met in St. Joseph. Information was shared. Occasionally speakers shared specialized information.
The greatest benefit was the close friendships that developed among those of us who appreciated sharing our myasthenia gravis journeys with others who understood. One of those friendships led me to apply for the position I have now had for 23 years in adult education.
My daughter Amy as a toddler enjoyed Mrs. Wilson’s angel food cake. Mr. and Mrs. Wilson were the organizers who originally started the St. Joseph group in the late 1970s.
What is the goal of the revitalized group?
Of course, sharing up to date myasthenia gravis information is a top goal.
But equally important is letting others with myasthenia gravis know they are not alone with this very mysterious and confusing condition.
Why is letting others know they are not alone with myasthenia gravis so important?
I was originally diagnosed in 1957 and did not meet another with myasthenia gravis until 1977. One college roommate had ‘heard’ of myasthenia gravis. That’s a long time to feel alone.
When the Myasthenia Gravis Association began hosting patient support groups, I was honored to work with Executive Director Doris Wimmer Conley in organizing them in Kansas City. When we moved to St. Joseph, I facilitated meetings here for several years.
Since the 1990s I have been active in online myasthenia gravis groups, but meeting and getting to know others in person has levels of connection and understanding beyond online connections. When you meet someone in person that you originally met online, you feel a deep friendship immediately.
Our myasthenia gravis online community has grown exponentially but can not replace the feelings of getting to know others in person. COVID shut down the world and we all can use personal contact. It’s time for revitalizing in St. Joseph.
Who will be welcome to attend the meet and greet?
Patients, their friends, and families are encouraged to come. Myasthenia gravis affects all the family. Friends need to understand how symptoms vary so significantly from time to time.
My mother appreciated the original group as much as I did because she’d shared this journey with me from age 10 having strange symptoms through various phases of severity. She told everyone who would listen about myasthenia gravis that could affect anyone at any time. Her advocacy led to our hometown undertaker being diagnosed and on medications in a matter of days when his ophthalmologist suggested myasthenia gravis.
My daughter attended myasthenia gravis meetings from her toddler days and had the knowledge to advocate for me when she was a teenager and I was experiencing severe symptoms. Your children need to know about myasthenia gravis.
Medical professionals and others who advocate or provide services in the disability community are also encouraged to attend.
Why will this be a ‘meet and greet’?
Meeting and getting to know others will make everyone feel heard and more comfortable attending future meetings.
Future meetings can be planned around the information, ideas and topics attendees want most. Please come prepared to share what you would like to see addressed in future meetings. Programs will be planned with the attendees’ input.
Looking forward to getting acquainted Sunday, March 12, at 2 p.m. For more information please contact me at donnasjmo@yahoo.com.