It was a great day of awareness, fundraising for important resources for those living with MG, and such great support in the MG Community. Keep the momentum going! All fundraising pages will remain open through December, so there is still time to reach all of our goals. Reach out to your family, friends, and coworkers and tell them all about your great experience at the walk (be sure to show them all the photos!), and encourage them to support you. Follow up and thank all those that did donate, and please contact the MG Walk Office for any tips on post-event fundraising.
Thank you all for an amazing day, a great event, and for coming together and doing all we can to reach the ultimate finish line…a world without myasthenia gravis!
Arleen was put on IVIG for 5 days for over 7 hours each day. However, she ended up with numerous infections so was placed in intensive care for several days. From February 8 through March3 she was in the hospital and eventually needed to stay at her sister’s home for 5 months due to her extreme weakness. She did physical therapy for several months and didn’t know if she could ever return to her home that she had moved into 2 years earlier after moving to Scranton from Charlotte NC. It wasn’t until August that she was able to return home. Throughout the years, she had many trips to the ER with some requiring stays in the hospital. She also learned the that there were medications especially antibiotics that could set off her MG and make things worse…something as common and simple as a ZPack for a sinus congestion. She is now very careful to carry a list of her medications and educate new doctors and medical professionals about the list of meds she needs to steer clear of.
Looking back, it seems very possible that she had MG for decades and just never knew. In 2000, she lost the muscle and strength in her upper left arm even pick up an empty glass or cup. The specialists couldn’t figure out what was wrong and after a year of PT she regained some strength but not all. Also, for many years she could not understand that after a ver good night’s sleep she would stugg;e to keep her eyes open while driving to work. She hadsome balancing issues throughout the years as well, but she, and her doctors attributed it to the polio she had at the age of 1. MG was never a diagnosis or thought that came up for all those years, despite seeing numerous specialists.
Today, she still has a hard time holding anything up and her very little stamina. She rides a motorized cart around stores, and can even experience exhaustion just by trying to eat a meal – chewing and swallowing. She will take naps throughout the day to regain energy, and will sometimes fall asleep in the blink of an eye. Arleen had to modify her day to day activitie sand basically pick and choose what she can do each day but with the help of her medications can cope and has not had IVIG in several years.
She still volunteers at her church once a week and stays active with the MG Walk as well. She completes the route pushed in a wheelchair, but continues to come and raise money year after year because she feels she is contributing to help this cause and ultimately finding a cure. She heard about her first MG Walk at the Scranton MG support group and for many years participated in the NY Walk with her daughter. She then moved to the Delaware Valley and continues to give the same important effort, happy to continue year after year.
Arleen knows how important awareness is and wants doctors to be more educated on MG. It’s scary for her to think what may have happened had her doctor not known what MG was and she could have gone undiagnosed. Arleen has an enourmous amount of praise for the Scranton support groupwhic meets every second month where she and other members encourages others with MG to be vocal about their disease and stay educated on their medication regimens and about MG. We are family, she says. Education about MG is so key.
She is excited to participate in the Delaware Valley MG Walk again this year on Oct. 1 with her daughter who will be travelling in to walk with her and a few others she hopes. She will continue to spread the word and encourage others to do the same. She knows how frustrating it can be to go without a proper diagnosis for years and wants to make sure that more people know quickly caught and the appropriate treatments can be started. Also, she knows the frustrations of “looking well” and people not believing she has a chronic illness and not understanding what’s going on. Her best advice to those going through their own journeys with MG: “There might be times you want to give up, but keep going. Find things that you’re interested in and are doable, and stay positive. Do everything you can to keep it under control…and pray for a cure.” 2013 and 2014 were bad years for her but now things are better or as better as they can be when you have MG.” Be stubborn keep fighting even if it means with medical professional, and if possible find a support group.
Not sure where to begin? Check out our fundraising tools to help you raise MG awareness and increase your fundraising!
On MG Walk Day, we gather to celebrate those we love who live with MG, commemorate the research we’ve helped to develop with funds raised!
Share your fundraising page and links to donate via email and on your social media accounts. If you have checks or cash funds to turn in, please let us know and we can help you add them to your fundraising page. Checks may be mailed to the address below. Please be sure you’ve written your team name in the memo field!
MG Walk Office
1707 N. Randall Rd, Suite 200
Elgin, IL 60123
If you have questions or want to know more, contact us today:
Checks should be mailed to: