Support by Myotonic Dystrophy Expert Ann S Woodbury

My children (now adults) all have a hard time waking up. Even going to bed is difficult for them but they have all eventually found routines that work for them at night so that they get to sleep at a decent time. They also use a bi-pap (Trilogy) at night. With all of this support it is still extremely difficult for them to wake up in the morning. If left to their own devices they would sleep until noon – or later. In order to wake up at a decent time they need to take stimulants an hour or more before they attempt to stay up. The stimulants that they use are Modafinil (Provigil) and some other quick acting stimulant like Ritalin or Focalin. Getting the stimulants in them well before it is time to stay up is quite a feat. My oldest, Warren, takes multiple doses spaced a couple of hours apart. He has worked out a routine with his partner to make sure that he doesn’t forget to take his meds. Modafinil isn’t taken just to help them stay awake. There was a period of a couple years where Warren didn’t take Modafinil at all. He became more and more dysfunctional. What I mean by that is he couldn’t make decisions and had no motivation. Low abilities with decision making and motivation is very typical with Myotonic Dystrophy (DM) individuals. After a crisis in his relationship he realized that not only does the Modafinil help him get up, it also helps him manage his life. Warren is now committed to taking Modafinil so that he can function in his world. Andrea, my second child, doesn’t take any meds before it is time to get up thus making getting up hard for her. When necessary she can get up earlier, like when she has a medical appointment. But then she always needs a nap after. If there isn’t anything important to get up for, she sleeps until at least noon. Andrea is the only one of my children that is able to get up when there is something important to be up for. Andrea’s DM repeats are the highest of all of my children at 550. I know that many of you don’t know your repeats. Just to show you why they don’t test for the repeats any more, Andrea at 550 is the least affected of my children. Michael and Chad have 450 repeats and Warren has 350. Michael is definitely the most affected of my children and yet his repeats don’t provide that information of how severely he is affected. My two youngest, Michael and Chad, have me help them with their morning routine. That means that around 8 am I have to stop what I’m doing and call them. Of course, the phone isn’t effective at waking them. But, I still start with the phone first. Once in a while I am lucky and Chad answers my call. That happened this morning. It simplifies things for me because then Chad can stay on the phone with me and help me wake Michael. Most of the time, after calling on the phone I have to drop in on their Alexa. I can tell you that before Alexa it was SO difficult to get them up. Sometimes I would have to drive over to their house to wake them. When I drop in on the Alexa and call their name, eventually they respond. Even waking them with the Alexa is difficult but eventually it works. In the background I can hear all of their alarm clocks going off. Chad even has an alarm clock made for the deaf. Instead of an alarm he has a device that lies under him and starts to vibrate when it’s time to get up. Of course, he sleeps through the alarm and the vibrating device. It isn’t until he hears my voice that he can wake up. For an outsider it looks like I am an enabler because for a normal adult having their mom wake them when they are 38 and 32 years old seems like mom is too involved in their life. I look at enabling as doing something for someone that they can do for themselves. As those of you living with DM know, most of our DM family members can’t do this task for themselves. If left to their own devices they become dysfunctional. So, I see what I do for my family as empowering for them. My perspective of empowering them is about helping them with something that will then support them to be as functional as possible. There has been a time or too when I have forgotten to wake Michael and Chad. Most of the time it works out okay because they have a caregiver that comes over around the time that they need to get up. She then takes over the task of getting them out of bed and they take their stimulants at that time. But it is a lot harder for her to wake them when I have forgotten to help them get their stimulants in their system earlier. Occasionally they don’t have a caregiver. Their caregivers are provided by Medicaid. In Utah there are only two companies that provide this service by working with Medicaid. It has taken us a lot of research to find this very helpful resource. If I have forgotten to wake them to take their meds and if they don’t have a caregiver that day, around noon or one in the afternoon they wake up and call me. This is very frustrating for them because then they don’t have much of their day left and also it throws off their bedtime routine. Then they aren’t tired enough to go to sleep the next night. It has a negative ripple effect for several days. I am very lucky because my husband has a good job that supports us financially so that then I can be available to support my family in these ways. Many of you earn the family income and also are the caregivers for your DM family. That is so difficult. In that case, be kind to yourself and just do what you can. Remember that if you are not kind to yourself and you push yourself too hard that eventually you might fall apart, either mentally or physically, and then you won’t be of any help to your family. It’s better to be of some help than to overwork yourself to the point that you aren’t of any help. If you’re interested in my “Personal Self-Care Formula” you can go to my website at mycausemyfamily.com and download the free pdf.