In Memory of Tracy Shackelford, MG Advocate

Posted by myasthenia

Tracy with husband Mike Shackelford

 

By Mike Shackelford

Tracy Shackelford, my wife, passed away in August 2021 after a long battle with myasthenia gravis.  She will be dearly missed by family and friends.  She and I had nearly 30 years together (26 married), and she was a very special person. Let me share a little bit with you.

Tracy grew up in Wisconsin, mainly in the scenic La Crosse area.  She was always outgoing and very intelligent.  She received scholarships to the University of Wisconsin – Madison, where she got a B.S. and M.S. in Nuclear Engineering (pretty impressive stuff)!  After graduating, she worked for ComEd, focusing on Nuclear Plant safety systems.  After about six years there, we had a daughter, and Tracy decided she would rather focus on motherhood and all the joy that comes with raising a child.  Eventually, she missed working, and studied for certification as a Nuclear Medicine Technologist (NMT), to work on PET-CT scanners.  It amazed me how much one had to learn to get certified in this; no small accomplishment.  She loved this job very much as she was able to help people out, and she was very good at this.

While working as a NMT, the signs that she had MG appeared.  First it was just a problem with vision in one eye, and over time evolved into full body weakness.  Tracy was rightfully upset when she had to resign as an NMT, a job which truly brought her joy. Simple things like taking the dog for a walk, a bike ride, climbing stairs, and eventually even having the strength to brush her teeth became a daily challenge.

Tracy had great MG doctors at the University of Illinois – Chicago.  She tried many types of medications and treatments, but nothing really seemed to work.  Through all of the drugs, tests, and procedures that she endured, she always would try to maintain a positive attitude.  The nurses loved to be with her.  Tracy would also love to bake cookies or muffins when she had moments of strength to bring in to the nurse staff.  Again, she was always thinking of others.

Tracy was active in the MG community. She was always giving advice in MG Facebook groups, or just being a friend to somebody who needed a boost.   Additionally, we would attend several MG walks in the Chicago suburbs, which was a great way to meet people in person with similar stories and contribute to the cause.  In 2020, she saw an opportunity to join Conquer MG as a member of the board, focusing on social media activities. She really loved her job and it made her very proud to contribute to this organization.

The loss of Tracy has created a hole in the lives of anybody that knew her.  She was a kind spirit, always giving help and love to others.   She was a fighter as so many who suffer with MG are.  She never gave up hope though.   Someday there will be cures or treatments which really impact quality of life for people with MG.  It’s important for us to all give to this cause so that can be a reality for the future, and talk with your friends about this disease, as it is not very well known to the public.

A Note from Conquer MG

Tracy made a big impact during her short tenure as Conquer MG Board Trustee.  She rolled up her sleeves with social media, the Viking Challenge, Wellness Committee, and represented Conquer MG at the virtual NORD conference. Long before she joined the Board, we knew Tracy for her compassion and concern for others with MG. We thank Mike for sharing this tribute. – Conquer MG Board and Staff 

About Sarah Bolton

Posted by myasthenia

Interviewer for Conquer MG’s “Finding Strength One Day at at Time” Series

Sarah Bolton is a resilience coach and rare disease advocate.

Prior to becoming a coach, she worked as a cosmetologist and enjoyed helping people feel beautiful and confident in their own bodies. Several years ago during a blow drying class at the salon, she became unable to pull the round brush through the hair, and the blow dryer felt as heavy as cinder blocks. Soon after, she was diagnosed with myasthenia gravis. Sarah quickly realized that her career working behind the chair was unsustainable because of the frequent episodes of MG muscle weakness, especially in her hands.

Sarah worked with a coach prior to her diagnosis and saw the positive impact coaching had on her own life. So she decided to become a coach herself. Now, instead of being a hair-apist in the beauty industry, Sarah is able to help people in a different and even more profound way through the framework of coaching. She especially loves working with women in leadership roles as well as other folks living with invisible/chronic illnesses. In partnering with her clients, Sarah helps folks shift their focus away from how they are limited, tune into their own creativity, reinvent their relationships with their bodies so that they are in tune with what they need, and create their lives based on what they CAN do despite the challenges.

You can contact Sarah via email at bolty555@gmail.com or connect with her on Instagram at www.instagram.com/boltysbazaar.

 

An MG Wall of Hope

Posted by myasthenia

What does a world without myasthenia gravis look like to you?

In June 2021, we asked the MG community, “What does a world without MG look like to you?” Your response was profoundly encouraging. We received over 120 “tiles” – of suns and flowers, strong smiles and wide open eyes, and so much more. Together, they make up an MG Wall of Hope.

Here’s a short video about the Wall. This longer video gives you a close up view of the tiles.

Want to claim your tile and tell us (and the MG community) more? Email us at info@myastheniagravis.org

The Wall’s message

These artists are MGers like yourself. They’ve used their imagination to see a world where they have strength and hope – even if it just took seconds to draw an upward arrow. YOU have the POWER to envision that, too!

No one is saying that if you have MG, you can’t have joy and hope. But thinking of a life where you’re strong and your muscles work…well, it feels good to hold that idea in your head.

 

See the Joy

It jumps out at you: bright colors, sunny days, butterflies and rainbows, and a pot of gold. No MG? The thought makes flowers bloom and brings out our silly side.

 

Think of freedom

…freedom from weakness, freedom to do the things you love, freedom to go places.

No MG symptoms

In a world without MG, you can open your eyes wide, smile big, climb stairs with bags of groceries, lift weights, picnic with your family, and lay on the beach.

 

Where would YOU be?

If your world did not include myasthenia, would it feel bigger or more accessible? Can you find a way to access that world even with your MG? We hope so!