Resources for people with dysphagia & those who care for them (collection #2)

Here are three more dysphagia resources I recommend for basic information and practical tips on eating safely and with enjoyment.

Dysphagia - This web page from the National Institute on Deafness and Other Communication Disorders in the U.S. provides a basic, easy-to-understand overview of dysphagia in a question and answer format. It also includes a clear diagram of anatomy involved in swallowing.

A Manual for People Living with ALS - ALS stands for Amyotrophic Lateral Sclerosis (ALS), the most common form of Motor Neuron Disease (MND).  A Manual for Living with ALS is available as a free PDF from the ALS Society of Canada. It includes a section on adapting to swallowing problems and maintaining good nutrition (pages 36  through 41) and a page of recommended cook books (page 81) as well as a section on maintaining oral health (pages 55 through 57).

Although some of the manual's information is region-specific (e.g. community resources), the content on food and nutrition will be helpful no matter where one lives.  

Puréed Foods for Swallowing Problems (PDF) - Wendy J. Dahl, PhD RD, developed this clear, concise resource that describes the characteristics of the ideal pureed food and explains how to prepare it as well make meals tasty and appealing. Dr. Dahl also is the author of Textured Modified Foods: A Manual for Food Production for Long Term Care, 2nd Edition.

Resources for people with dysphagia (collection #1)

Maple Custard, a nourishing, tasty, easy-to-swallow food

Last November, an intern's question prompted me to update my inventory of education material for people with dysphagia. Keen, energetic interns never fail to inspire me, but when we're so busy collecting and discussing new information, I don't have much time to refine my notes into a publishable blog post. You may have heard me lament I don't write quickly. You also may recall last week I vowed to finish some of the things I've started, blog posts being one of the main unfinished things.

This morning I pulled out the draft post where I'd compiled dysphagia resources, re-visited each site to refresh my memory about its content, and decided, yes, each one is well worth sharing. Here now, with brief commentary, are three resources.

Please note: Not every tip or recipe in these resources will be appropriate or safe for people with specific types of swallowing disorders who must limit their intake to a particular consistency for solids (e.g., pureed) and liquids (e.g., honey-thick).  Though people who can eat soft and minced/finely chopped foods usually also can eat pureed foods, the reverse is not necessarily true.

Meals for Easy Swallowing (PDF)

This is a publication from the ALS division of the Muscular Dystrophy Association (U.S.). An ALS clinic coordinator, registered dietitian, nurse & speech-language pathologist compiled recipes "derived from our patients and their creative spouses who translated their caring into foods that look good, taste good, are easy to chew and to swallow, and minimize discomfort." In addition to recipes for beverages, soups, breads, entrees, sauces, vegetables, and desserts there are helpful tips on food preparation, service, menu-planning. Most recipes are suitable for a pureed diet but there are some recipes for soft and minced textures, too.

A separate Nutrition Issues page discusses related topics such as maintaining weight, hydration, choking and feeding tubes.

WebWhispers Laryngectomee-Friendly Recipe Collection

WebWhispers is an international Internet group that provides information and support to laryngectomees and those with laryngeal cancer as well as more diverse group of persons with other head and neck cancers, permanent tracheostomies, caregivers and health care providers.

To help its members eat safely and with enjoyment, the website's library includes recipes "specifically tailored to laryngectomees at various stages or abilities." The Food-Nutrition-Recipes section also includes books and articles, practical tips for managing eating problems and more recipe links.

Easy to Swallow

Food stopped being a pleasure and instead became a chore.

~ Claire Wade

And so Claire Wade, a young woman with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome), took steps to restore her joy in eating.  She collected recipes from renowned chefs, who included Nigella Lawson, Graham Kerr and Sophie Grigson, and published them on her site, Easy to Swallow. There are recipes for soups, main meals, vegetables, sauces, desserts and drinks.

Though the site hasn't been updated since September 2006, the content remains timely as well as tasty with helpful tips and creative, appealing recipes. I've picked a few to test including the Pumpkin & Ricotta Rotolo and the vegetable mashes and purées.

Dysphagia ebooks (PDF documents)

I'm really impressed with PDF Search Engine. 

This morning I entered the search term {dysphagia} and obtained 48 results. I opened and quickly skimmed each PDF document. Here are the ones (12)  I tagged and saved to Connotea or Delicious (more about these tools in a separate post):

Resources for the health care professional

• Identification and Management of Dysphagia in Children with Neurological Impairment
• Identification and Management of Dysphagia in Adults with Neurological Impairment
  
• A Canadian Success Story for Stroke Patients with Dysphagia
• CASLPA Position Paper on Dysphagia in Adults
• Management of patients with stroke: Identification and management of dysphagia
• Rehabilitation medicine: 2. Diagnosis of dysphagia and its nutritional management for stroke patients
• Formal Dysphagia Screening Protocols Prevent Pneumonia

Education handouts for the patient/client

• Dysphagia � When It is Hard to Swallow
• Dysphagia Pureed Diet
• Dysphagia Diet Level I (Pureed)
• Dysphagia Diet Level II (Mechanically Altered)
• Dysphagia Diet Level III (Advanced)

Image credit: Head and neck overview from SEER's Web-based Training Modules.

Dysphagia: four more resources

Image:  Chest x-ray of pneumonia

#1) Dysphagia -- very thorough discussion of normal swallowing physiology,  pathophysiology, clinical presentation,  diagnosis, treatment; includes videographic images. An excellent article to give to an intern or student.

#2-4) Cochrane Review Abstracts & Plain Language Summaries:

• Interventions for dysphagia in acute stroke

• Non-pharmacological therapies for dysphagia in Parkinson's Disease

• Treatment for swallowing difficulties in chronic muscle disease
  

More on dysphagia: a book, a blog and a "movie"

One dysphagia link leads to another:

1) The Dysphagia Cookbook -- Although I'm not sure when Dr. Elayne Achilles' web site was last updated (it's copyright 2004) it's well worth checking out her cookbook information,  sample recipes,  and helpful dysphagia links.  Update, 02 Februrary, 2012: Unfortunately, the web site is no longer maintained. The Cookbook, however, is still available for purchase from online booksellers.

One of the recommended links is:

2) The Dysphagia Resource Centre blog (last updated March 2008).  I haven't finished exploring the entire site yet, but my favourite find so far is this next resource that I will be sharing with my colleagues as well as every dietetic intern who has a placement with me:

3) Swallowing: An Animated Sequence -- interactive animation and a detailed explanation of a normal swallow.  Please forward this one to your colleagues and students, too!