Help and Resources by Myotonic Dystrophy Expert Ann S Woodbury

We as caregivers end up in the role of helping our Myotonic Dystrophy (DM) family members. As we go through our day many things have become automated – we don’t give it a second thought because we just need to do these helpful things. If we can take a step back from ourselves and look at ourselves as an observer might, we can often find other ways to do the things that we do. For many years I was the one responsible for the dosing of medication in my family. Of course, that comes with being a mother. But as my children grew up and moved out on their own, they had to learn to take over their medication. Don’t forget that some of my grown up children live in public housing with caregivers that help them. But, with the help of caregivers, that responsibility is no longer mine alone. I do still have to put reminders in my phone so that they don’t run out of their controlled substances (Ritalin, etc.). I am still involved but less so than when they lived at home. But, my husband never moved out (not that I’d want him to) so I kept going along in my routine managing his medication. Kent was working with an Occupational Therapist (OT) after a hospital stay and I mentioned it to her. She was surprised to hear that Kent wasn’t managing his own medication. With the flat affect of DM and the poor ability to initiate activity it had never crossed Kent’s mind to manage his own medication. The OT walked Kent through the process of managing his pills and then she set it up so that Kent was accountable to her. What a relief. It took a lot off of my plate because Kent needs to take certain things up to 3 times a day. That was about 5 years ago. Kent still manages his medication himself with me observing once in a while to make sure that everything gets taken as it should. The reason that I tell you this story is because there are many services out there that we can benefit from. We just get into our routine and don’t recognize that there could be a service out there that could lighten our load. Physical Therapy (PT) is an obvious resource to most of us. But OT and Speech Therapy are neglected by most of us as another resource because we don’t realize all that these specialties have to offer. OT has a lot to offer. “Occupational therapy (OT) is a branch of health care that helps people of all ages who have physical, sensory, or cognitive problems. OT can help them regain independence in all areas of their lives. Occupational therapists help with barriers that affect a person’s emotional, social, and physical needs.” Most all of our DM family members have sensory and cognitive problems. All that you need is a referral from your General Practitioner to be provided with an OT. Another way that my family’s OT helps is by myofascial release. Because of the ways that myotonia tightens up my family members bodies, myofascial release helps them to be able to stand taller and straighter. This helps with an improved gait and even with better strength in their lungs. Speech Therapy is another area that is more helpful than we usually think. The field of Speech Therapy encompasses the neck and above. This includes the brain’s processing. “Cognitive speech therapy serves as an important step towards identifying whether an individual is experiencing age-related cognitive changes or something else. A speech therapist can design a treatment plan if an initial speech therapy evaluation reveals weaknesses in cognitive health.” Another way to ask for the service of a speech therapist for cognitive help is to request “Speech Cognitive Rehab.” If you pay attention to your family member and their food choices you may notice certain things that they avoid. The big one that my family avoids is clear liquids. This then leads to dehydration. Hydration is critical for your muscles to work effectively. Before Michael (my third child – now an adult) got his feeding tube he was having issues of dehydration. Even to the point that he passed out once. We weren’t aware of why he passed out so we called an ambulance. It turned out that he was dehydrated. The reason that clear liquids are avoided by many of our family members is because muscles in their throat are either weak or they get rigid due to the myotonia. This is called Dyssynergia. Dyssynergia is any disturbance of muscular coordination, resulting in uncoordinated and abrupt movements. When this happens clear liquids will seep into their lungs. Water and saliva are usually benign so they don’t usually cause pneumonia but to the person with the swallowing weakness it is uncomfortable even though it is subtle. So pretty soon, without realizing it, they start to avoid clear liquids. It then becomes a vicious cycle. Without the hydration they need their muscles work even less effectively. Our speech therapist helped us figure all of this out with Michael. Michael had several episodes of aspiration pneumonia. With the encouragement of a wise friend we had him get a feeding tube. He uses it for watering. (Tongue in cheek – Michael gets “watered” 2 times a day) I really give credit to the feeding tube for Michael being as healthy as he is. On page 7 of the new Nutrition Guide for Individuals with Myotonic Dystrophy available on Myotonic.org it says that the time to consider a feeding tube is when there are concerns of dehydration. A few months ago I wrote about the fact that Michael couldn’t continue to get speech therapy because he wasn’t showing improvement therefore insurance would no longer cover it. One of you readers of my blog reached out to me to inform me of some options that I wasn’t aware of. I found out that for those with speech and swallowing issues that won’t improve they can still benefit from speech therapy. It’s possible to get services under the “Management of Symptoms” category. Michael’s speech therapist is currently working on getting him covered long term under the “Management of Symptoms category. She tells me that the visits probably won’t be weekly but maybe every other week. He does so much better when he works with a speech therapist so every other week will suffice. It seems that many of my family members can’t retain the ability to implement what they are taught but if they have someone that reminds them regularly and they are accountable to the specialist then they function better. OT and Speech Therapy are services that most of us don’t realize can benefit us in non-traditional ways. But even the traditional service might help us more than we realize. When our family member isn’t having choking issues it might not cross our mind to reach out to a speech therapist. Many of us get into our own way of doing things and don’t realize there is an underlying problem. Because of the subtle progression of DM, a swallow study is a great place to start even if you aren’t aware of anything imminent. If your General Practitioner won’t prescribe a swallow study for you, reach out to your neurologist. Most likely they won’t have a problem prescribing it.