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. It helped that Andrea no longer had to do shift work. We also got Andrea FMLA so that when she was too fatigued to work she could take time off and not compromise her job security.

A little less than 5 years ago Andrea started using up all of her FMLA. With FMLA Andrea was allowed 2,000 hours a year of time off due to her health conditions. About 5 hours ago she started using up more hours than the allotted amount. Her employers valued Andrea so they kept working with her limitations. But, in 2019 Andrea fell apart. Her grandmother passed away, then her dog got cancer and died. Andrea couldn’t function. She was always in tears. She took short-term disability. After the allowed six months on short-term disability Andrea tried going back to work. Andrea struggled through six months of working but was still maxing out her FMLA and she wasn’t functioning. She was in overload.

In Nov 2020 Andrea stepped back from her job again and took a leave of absence. She applied for short-term disability but was denied. Andrea also applied for Social Security Disability and was denied. So, we hired an attorney. It is now almost 1 ½ years later and Andrea has had no income the entire time. She would have lost her house if she hadn’t had her 401K that she could draw on to make mortgage payments.

Even without the stress of working Andrea is barely functioning. Through all of this 1 ½ years one saving grace was that Andrea qualified for Medicaid. With her Medicaid we were able to get Andrea an aid that comes in 4 times a week and helps Andrea with self-care and managing the house. To have someone come in that works with Andrea and coaches her makes it so that Andrea has a reason to get up and be productive. Her aid makes all the difference in Andrea’s life and makes it so that she can have some kind of a life.

During this 1 ½ years Andrea’s neurologist has written a leave of absence (LOA) for Andrea. This made it so that Andrea could still be considered an employee and stay on her insurance (Andrea has been double insured – yay). The LOA can only be written for 6-months leave.  Every 6 months her neurologist would write her another one. This was very helpful. But, when we reached out to her neurologist for her LOA this last December, the neurologist would only write it for 3 months. What! Did she think that Andrea was able to go back to work?  We can’t figure out why she wouldn’t continue writing her documentation the way that she had been in the past.

This caused me to realize that we needed to get Andrea to a doctor that understood DM. The local neurologist is new to DM and obviously doesn’t understand the complex brain impact of DM. I reached out to Stanford to have Andrea seen there. Dr. Jacinda Sampson used to be Andrea’s doctor here in Utah until Dr. Sampson moved back east. Eventually Dr. Sampson ended up at Stanford. We have so much confidence in Dr. Sampson. It was a process to get the records sent to Stanford and the appointment set up. After obtaining Andrea’s past history Stanford was able to get Andrea set up to see Dr. Sampson.

What a great experience we had. Dr. Sampson is SO thorough and asks questions that no one else has been asking. I took a lot of notes from the conversation with Dr. Sampson. Because Dr. Sampson has worked with Andrea in the past we think that she will be able to document the progression of Andrea’s DM. But, even if she hadn’t worked with Andrea in the past I think that she would have been able to document the extent of the impact of DM in Andrea.

Andrea’s only chance at surviving financially in the future is if she has some sort of income. And, since Andrea can’t work she needs disability benefits. We are very hopeful that this visit to Stanford will make it so that Andrea’s applications for Long-term Disability and Social Security will be approved.