The universal question, “What should we eat?” can be harder to answer when you are a caregiver for someone with multiple system atrophy (MSA). How can we have a good and nutritious meal that everyone in the family can enjoy, given the challenges patients have with dysphagia (difficulty swallowing) and caregivers have with time?
The first thing to consider is a discussion with your doctor or neurologist, who might then set up a consultation with a dietician, someone who has experience with the specific needs of patients. Speech language pathologists are another important resource when swallowing difficulties need to be addressed. These professionals will suggest ways to manage these issues; those methods may include using thickening liquids, perhaps changing the patient’s position to eat upright, decreasing distractions, and special techniques for swallowing. Only a professional familiar with your patient’s full medical history can approve a diet that will meet his or her needs.
Once the medical professionals have been consulted, then what about the day-to-day tasks of preparing a meal? The good news is that there is a lot of help available, and especially so because these challenges are not unique to MSA. The American Speech-Language Hearing Association (ASHA) has developed the National Dysphagia Diet, grouping foods into four categories. Category four includes all foods; category one is only pureed items that require very little chewing ability. Moving through these stages from four to one coincides with the progression of MSA. But it is completely possible to meet the challenges of stage one while still sharing a family meal.
The first thing to know is that there is equipment to make it easier. Standing blenders, immersion blenders, strainers, and slow cookers—these can all become your friends. These tools can take a meal that works for the family into one that works for the patient, too. For example, a meatloaf can be prepared, and then processed with a sauce or gravy in a standing blender or food processor. It’s still the same delicious meal, just pureed.
You can also choose foods that are soft to begin with. Rice pudding, soft boiled eggs, and applesauce are some favorites. This vanilla custard is rich in protein. If foods need further mechanical processing, the equipment mentioned above will be invaluable.
A book that is especially helpful in adapting regular food for a patient is Soft Foods for Easier Eating Cookbook. [1] Written by a registered dietician, it has both the basic information on following an easy-to-chew, soft, or pureed diet, and a wealth of recipes with the methods to modify them for each category of the dysphagia diet. The appendix includes lists of products, manufacturers, distributors, organizations and sample menus for different stages.
Another resource that has been made freely available by the ALS division of the Muscular Dystrophy Association is Meals for Easy Swallowing. It’s 114 pages packed with good information and recipes, and you can see it here.
Caregivers have so many demands on their time that it can be daunting to have to plan and make meals, too. These resources will help with that issue and give you the ability to easily answer that daily question, “What’s for dinner?”
[1] Woodruff, Sandra and Leah Gilbert-Henderson, Soft foods for Easier Eating Cookbook. Square One Publishers, Garden City Park, NY. 2010.
Contributed by Diane Adkins, MA, MLIS, The MSA Coalition Board of Directors
