Stanford Neurology Experience by Myotonic Dystrophy Expert Ann S Woodbury

I took my daughter – Andrea – to Stanford last week. We needed some help in pursuing “benefits” for her. It has been 1 ½ years since she left work due to her Myotonic Dystrophy (DM) and she is still unapproved for Social Security.

My journey of living with DM has been very confusing. DM is so elusive, meaning that its symptoms don’t seem obvious to an onlooker. When an outsider observes us, my family members don’t appear to be very disabled. Therefore, getting public services for them takes a lot of perseverance. An outsider can’t see what is going on inside of my family members, they can’t see the extreme effort that has to be made to fight the fatigue and the inability that my family has with prioritizing their tasks so that they can be ready for the appointment. No one can see the extreme effort that it took for them to be able to be presentable at an event or appointment. My coaching and constant checking in to see if they are on task is also invisible to an outsider.

Holding down a job is almost impossible for many of those affected with DM. All three of our sons haven’t been able to hold down a job. But, our daughter Andrea has been quite successful at it. She worked full time for Marriott Vacations. She even had a difficult job. She dealt with escalated calls, the ones where the client is angry. She even loved her job. After the first year of her employment she started getting too fatigued to get to work on time. We worked with her doctor and got accommodations for her.

The employees at Marriott work many different shifts, late into the evening and on weekends. With accommodations Andrea was able to have her scheduled shifts not fluctuate. That helped a lot due to the fact that she was able to get a normal night’s sleep. Shift work really messes with the sleep cycles of any employee.