Swallowing Difficulties DM1

Swallowing difficulties (dysphagia) are common in muscle-wasting conditions. They are particularly common in conditions like Myotonic Dystrophy Type 1 (DM1). Frequently, dysphagia can cause food, drink, and saliva to stick in the throat, leading to choking and anxiety. This affects caregivers as well as people living with DM1.

Dysphagia in DM1 is thought to be caused by muscle-wasting. This hasn’t however been confirmed. Difficulties can occur at any point of the swallowing process. Some of the most common problems that can occur as a result of dysphagia are shown in the image below:

Dysphagia can lead to permanent lifestyle changes. Some people may stop eating and drinking in public areas, such as restaurants, due to the embarrassment caused by their swallowing difficulties. Conversely, they may be fearful of eating alone and need to be in the presence of somebody who can help should they find themselves in difficulty.

Here are two short clips pieces describing the experiences of people living with swallowing difficulties: Video 1 – Video 2

In more severe cases, dysphagia causes food, drink, and saliva to travel onto the lungs (aspiration) and can lead to pneumonia. This can lead to hospital admissions and, in some people, premature death.

“My father unexpectedly died due to complications relating to swallowing difficulties…. and although my day-to-day life seems increasingly impacted by problems with walking, the most frightening thing for me is that my swallowing is such that I might end up in the same position as my dad” Frank Rose, 66, lives with Myotonic Dystrophy Type 1

Swallowing difficulties don’t just affect the person living with the muscle-wasting disease. They can also affect caregivers psychologically by causing stress, concern and additional work:

“I will go above and beyond to make sure my family enjoy what they eat. Food is a very important way of bonding, sharing, and tasting with the magic ingredient of love sprinkled through every meal.

My days are spent ensuring what is eaten is safe for [somebody with an] impaired swallow, attractive (you eat with your eyes), nutritionally good, home grown where possible and has been taste tested by William [my son] in advance.

While eating together I am in choke aware mode, regularly making suggestions of: Would you like more gravy? Don’t put any more food in. [Remember to] chew. Do you need a drink? You are falling asleep…”  Jill Newman, primary caregiver for her son William, 27, who lives with Myotonic Dystrophy Type 1

SwallowDM1

We would like to improve the lives of people living with DM1 and dysphagia. To do this, we are leading a research study to explore swallowing difficulties caused by DM1. The research project is called ‘A Multidimensional Profile of Dysphagia in Myotonic Dystrophy Type 1’, or ‘SwallowDM1’ for short.

A better understanding of swallowing difficulties will improve assessment, diagnosis and treatment. In the long term we hope to reduce the life-changing consequences of dysphagia in DM1, and other muscle-wasting conditions.

Why is this research important?

In 2020, a patient and caregiver advisory panel developed a nationwide dysphagia survey for all people living with neuromuscular conditions. Over one third of the survey responses were from people living with DM1 or their caregivers. The high response rates show the motivation of people living with DM1 to improve their lives.

The survey identified that dysphagia is common in DM1. The people who responded said that specialist assessment and treatment for dysphagia was the most important priority for research, as this will help to reduce its life-changing consequences.

Who is conducting this study?

The research is led by Senior Speech and Language Therapist, Jodi Allen. Jodi works in the NHS at The National Hospital for Neurology and Neurosurgery (NHNN) in London and specialises in patients living with neuromuscular conditions and dysphagia. Jodi is completing this study as part of a PhD.

Jodi is working alongside a team of experts based at NHNN and University College London. This team includes a neuromuscular advisory group. This group includes six people living, or caring for somebody, with neuromuscular disease and dysphagia. Four of these people live with DM1.

What would taking part involve?

Detailed information about this can be found in the patient information leaflet. Should you decide to take part in the study you will be asked to complete a range of assessments. Information about these assessments can be found by clicking each of the images below:

The research is funded by The National Institute of Health Research (NIHR) and sponsored by University College London. It will take place at The National Hospital for Neurology and Neurosurgery, Queen Square, London.

For more information about the study please read the following participant information sheets for:

1. People living with DM1: https://drive.google.com/file/d/1Jjsy3LkZrin34JkkHW1m8-gnPd_6QYm-/view?usp=drive_link
2. Caregivers: https://drive.google.com/file/d/1p1x-iTDxZVI_eX-9-sQscOvMCdIXiNK0/view?usp=drive_link
3. People without DM1 who may act as ‘controls’ for the study: https://drive.google.com/file/d/1DFJ8tKOFr0ZhygY8sW_OyD4gAhLKXHhJ/view?usp=drive_link

For more information about swallowing difficulties in DM1 please click here: https://www.myotonicdystrophysupportgroup.org/wp-content/uploads/2017/09/1153-Swallowing-Leaf-WEB.pdf