ALS Nutritional Toolkit for Individuals with ALS and Their Caregivers

ALS Nutritional Toolkit For individuals with ALS and their caregivers

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist

Introduction

This nutritional toolkit was prepared for the ALS Society of Quebec by Christina Manganaro, registered dietitian-nutritionist. Christina completed this project as part of a stage specializing in neurology towards completion of her master’s degree in nutrition. The toolkit was created as a resource for individuals with ALS as well as their caregivers, family members and friends who are living in the community. The contents of the toolkit can be found on the following page. The purpose of the toolkit is to provide tips and recommendations as a guide for those living in the community; however, they should always follow those provided by their health care team. An online version will be available on the ALS Society of Quebec website under the resource section. The French version of the toolkit is also available both online and as a hard copy.

For reprinting permissions, please contact Christina Manganaro at [email protected]

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 ALS nutritional toolkit contents

Section 1 – Tips for easier swallowing, optimal nutrition & general information • Tips to make every spoonful count • How to puree and modify your foods • How to thicken your liquids • Tips for easier and safer swallowing • Tips for you and your family if you have experienced changes in your swallowing • What to expect when getting your PEG or RIG tube

Section 2 – Modified diets for swallowing difficulties • Pureed texture • Minced texture • Soft texture • Regular texture • Unsafe foods for those with swallowing difficulties

Section 3 – Resources in your community • Useful resources and websites for dysphagia • Pureed foods and thickened beverages in your community: Montreal • Pureed foods in your community: Salaberry-de-Valleyfield and Beauharnois • Pureed foods in your community: Valcourt • Where to find Campbell’s trepuree in your community? • Where to find Epikura in your community?

Section 4 – Recipes • Thickened ice cream • Recipes & cookbooks

Section 5 – Other resources & references

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Tips to help make every spoonful count

If swallowing has become more difficult and meal times have become more tiring, making every spoonful count is important to help maintain a healthy weight and to make sure you get all your nutritional needs. Here are some tips to help you achieve this. Review these with your dietitian- nutritionist so that they can help you personalize your diet.

√ Eat 6 or more smaller meals or snacks per day √ Have beverages after from meals √ Take short breaks during meals √ Eat the foods you love! √ Enjoy regular fat, thick and creamy yogurt as a snack o Try Greek yogurt for extra protein √ Add 1-2 scoops of protein powder (Beneprotein ®) to purees or beverages o See Beneprotein ® recipes √ Add 1-2 tablespoons of butter, margarine, mayonnaise, gravy or cream sauce to purees vegetables or meats √ Stir 1-2 tablespoons of flaxseed oil or fish oil to smoothies or cooked vegetable purees for added good fat √ Add ground nut or seeds to desserts or smoothies √ Mix plain soft tofu into purees, desserts, soups or smoothies √ Add 1-2 tablespoons of nut butter into smoothies or desserts o See recipe booklet: Smoothies with milk √ Mix 2-3 tablespoons skim powder, soy powder, cream, or sweetened condensed milk to milk, milk beverages, mashed potatoes, cream soups and sauces, cereals, pureed fruits, milk-based desserts, puddings, hot cereals, milk shakes √ Use whole milk instead of skim milk, 1% or 2% milk √ Use milk instead of water when making soups, sauces, hot cereals, or hot cocoa √ Add liquid pasteurized egg to milk shakes or smoothies – do not use raw eggs √ Blend beans or lentils and add to meat purees √ Add ripened, mashed avocado to vegetable soups and purees √ Add a spoonful of fibre supplement to purees or beverages for extra fibre √ Have ½ to a whole bottle of nutritional supplement between meals

References Ordre Professionelle des diététiste du Québec (OPDQ). (2015). Régime riche en énergie et en protéines : Suggestions. Manuel de Nutrition Clinique . Retrieved from http://opdq.org/mnc/regime-riche-en-energie-et-en-proteines/ Dietitians of Canada. (2014). Eating Guidelines for Increasing Your Energy and Protein Intake. Practice-based Evidence Nutrition (PEN). Retrieved from http://www.pennutrition.com/viewhandout.aspx?Portal=UbY=&id=JMfsUQE=&PreviewHandout=bA==

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 How to puree and modify your foods

Your health professional may have suggested for you to begin modifying your foods into purees to make it easier swallow. Here are some tips to puree your foods:

• Using a blender or food processor will make it easier. • Measure out desired portion of foods and cut into smaller pieces so that the food purees more evenly. • Add the recommended amount of liquid to make blenderizing easier. See chart below. • Use hot, cooked meats vegetables and casseroles and soups when pureeing as these are easier to blend compared to cold uncooked foods. • Blend at a low speed. • Stop processing and scrap down the sides of the bowl to make sure that all the ingredients are incorporated evenly. • Strain any lumps or seeds. • Once food is pureed, reheat or cool before serving. • Blend one food item at a time. • Wash and rinse bowl properly between foods.

Recommended amount of liquid to use Food type Amount of food Amount of liquid Fruit 125ml (1/2 cup) cooked or canned 15ml (1tbsp) of juice from can or fruit juice Vegetables 125ml (1/2 cup) well cooked or 30-45ml (2-3tbsp) of cooking water canned vegetables or vegetable juice Meat 125ml (1/2 cup) of tender meat, 45-60ml (3-4tbsp) vegetable juice, fish or poultry broth, gravy or sauce Cereal 125ml (1/2 cup) of cooked cereal or 60-120ml (1/4 – 1/2cup) of milk or 30g (3/4 cup) cold cereal (reduced milk beverage to a powder)

*Add additional liquid if necessary to get a uniform consistency

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Foods which are harder to blend • Coarse bread with nuts, seeds or dried fruit • Granola or whole grain cereal • Fried noodles or rice • Fried meats • Sausage, wieners, or meats with tough members • Chicken skin • Fish with bones, anchovies • Fried eggs • Nuts • Fruits with seeds or tough skins (berries, oranges, cherries, grapes) • Raw or fried vegetables • Corn, lettuce, celery • Hard cheese • Ice cream or yogurt with nuts, candy pieces, fruit chunks or seeds • Baked goods with nuts, seeds or coconut • Popcorn, coconut, chips, relishes, chocolate chips

References Clinical Nutrition Services. (june 2014). Blenderized diet . Montreal, QC: McGill University Health Centre. Jackson, F.J. (2011). Dysphagia Diet 5 Levels for Difficulty In Swallowing Diet. Jackson Siegelbaum Gastroenterology . Retrieved from http://gicare.com/diets/dysphagia-diet/ Hess, L. G., & Plowman, E. K. (2014). Safe Swallowing for PALS: What I Need to Know and Why it Matters. University of South Florida Health . Retrieved from http://nssrlab.org/wp-content/uploads/2014/07/Swallowing-Booklet-web-Word-2013-format_2.pdf McCarthy, J (Ed.). (2012). A manual for people living with ALS (7 th Ed). ALS society of Canada . Retrieved online from http://sla- quebec.ca/images/finder/files/PDFS%20AND%20ATTACHMENTS%20%20Phil/ABOUT%20ALS/Resources/Manual/2012%20ManuaL %20People%20Living%20With%20ALS%20-%20ENGLISH%20Final.pdf Nestec (2011). Tips for managing life with dysphagia. Nestle Health Science . Retrieved from http://www.dysphagiaonline.com /en/pages/08_tips_for_managing_life_with _dysphagia.aspx Nutricia Nutilis. (2011). Tasty food. Safer food . Retrieved from http://dysphagia.ie/uploads /documents/FINAL_Nutilis_recipe_book _printed_04.03.11.pdf

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 How to thicken your liquids

Your health professional may have recommended that you drink thickened liquids for safer swallowing. Clear liquids are those that are not thickened and are naturally thin (water, juice, coffee, tea). Here are some tips on how to thicken your liquids at home. For more information about dysphagia and thickened liquids see the information booklet by NestleNutrition.

Pre-made products (available at your pharmacy and other specialty stores see Useful resources and websites for dysphagia for details): Resource ® Dairy thick in nectar and honey Resource ® thicken up juice in nectar and honey Resource ® thickened water

Commercial thickening agents: Resource ® ThickenUp clear (pharmacy & other specialty stores) Resource ® ThickenUp powder Simply Thick ® (available online: http://www.simplythick.com/ )

Household thickeners: • Cornstarch • Xanthan gum • Instant potato flakes • Instant pudding powder • Plain unflavoured gelatine • Baby cereal

What to do when thickening your liquids: • Prepare liquids based on the consistency recommended by your health professional (nectar, honey or pudding). • For commercial thickeners: follow the instructions on the packaging • Use a wire whisk for mixing. • Start with 5ml or 1 teaspoon of thickener. • Slowly add thickener to liquid and stir vigorously for 20 to 30 seconds, until thickener is well dissolved and you get the desired consistency. • Clear liquids can take 1 to 5 minutes to thicken. Nutritional supplements can take up to 15 to 20 minutes to thicken. • Serve beverage right after mixing. • Some thickeners will get thicker if they sit (potato flakes). • If using commercial thickeners can also make large quantities of liquids using a blender. See below for details.

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 More tips and info when thickening liquids • Add cornstarch, potato flakes, flaked baby cereal, or commercial product to hot liquids (soups, sauces, gravies). • Add plain unflavoured gelatine or commercial thickener to cold liquids. • Take note that when thickening hot beverages, they will get thicker as they cool • Carbonated beverages (soda pop) can be thickened too, but they will lose carbonation through stirring process. Whisk liquid before adding thickener. • For milk-based products, use commercial thicker, instant pudding or baby cereal to thicken liquid. Add a teaspoon (5 ml) of vanilla or flavoured syrup for extra flavour. • Do not thicken liquids with unsafe thin liquids (ie. ice cream) (see below). • If a liquid is too thick, add a clear liquid. If a liquid is too thick, add a small amount of thickener. Try not to “under thick” your liquids. It is safer to have a liquid that is thicker than one that is thinner. • For recipes using Resource ® ThickenUp Clear http://www.thickenupclear.com/dysphagia-recipes

Making larger quantities of honey or pudding thick liquids Liquid Quantity of thickening powder Honey consistency Pudding consistency Milk 185 ml 265 ml Apple juice 200 ml 280 ml Orange juice 185 ml 210 ml Prune juice 200 ml 265 ml Nutritional supplements 175 ml 200 ml (Boost, Ensure, etc) Adapted from Guidelines for Caregivers and Patients on Thickened liquids, Royal Victoria Hospital, 1995

Instructions • Pour liquid into blender first, then add thickening powder. • Blenderize at low speed to 10 seconds, until a smooth consistency is reached. • Strain if there are lumps. Refrigerate and use within 4-5 days.

Unsafe thin liquids Thin liquids include foods or drinks that melt at room temperature. The following are foods that are unsafe to drink if you have trouble swallowing regular liquids and should not be included in your diet (see thickened ice cream recipe for details on how you can still include some these foods in your diet): • Ice cream, frozen yogurt, sherbet • Popsicles • Ice chips • Jell-O®

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Aspiration Aspiration happens when liquid (or food) passes into the lungs instead of the stomach. This can be dangerous as it can lead to chest infections or pneumonia. Be aware of possible symptoms as it can also be a sign that you need to a different solid or liquid consistency. If you notice and changes in swallowing, contact your health care professional as soon as possible

Possible signs of aspiration: • A change in voice (wet or gurgly) • Coughing or choking during meals • Increased chest congestion, such as more coughing, secretions and difficulty breathing than usual • Fever

Aspiration can happen when: • You eat to fast • You eat too much at a time • Your liquids are too thin • You get tired while eating

Dehydration Be aware of the symptoms of dehydration. It can happen if you do not drink enough. • Dark yellow, strong smelling urine • Small amount of urine • Feeling tired, dizzy or light-headed • Headache • Thirst • Dry mouth • Cracked lips • Dry skin • Reduced skin rigor – skin does not bounce back when you pinch on the back of the hand or forearm • Low or no appetite • Feeling agitated or restless • Muscle weakness

References Association Professionelle des Nutritionnistes Experts en Dysphagia (APNED). (january 2011). Les liquides à consistance adaptée. Montreal, QC : APNED. www.apned.info Food and Nutrition Services. (2013). How to Thicken Liquids. Capital Health . Retrieved from http://www.cdha.nshealth.ca/patientinformation/ nshealthnet/0562.pdf Laroche, R. (1995). Guidelines for Caregivers and Patients on Thickened liquids . Montreal, QC: Royal Victoria Hospital. Nestec (2011). Tips for managing life with dysphagia. Nestle Health Science . Retrieved from http://www.dysphagiaonline.com/en/pages/ 08_tips_for_managing_life _with _dysphagia.aspx Ordre Professionelle des diététiste du Québec (OPDQ). (2015). Régime de textures adaptées pour les troubles de la déglutition. Manuel de Nutrition Clinique. Retrieved from http://opdq.org/mnc/regime-de-textures-adaptees-pour-les-troubles-de-la-deglutition/ University of Pittsburgh Medical Center (UPMC). (2015). Thickened Liquids: Nectar-Thick . Retrieved from http://www.upmc.com/patients- visitors/education/nutrition/pages/thickened-liquids-nectar-thick.aspx

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Tips for easier and safer swallowing

• Rest before each meal, if meal times have become more tiring. • Eat in a peaceful environment with no distractions. • Make sure to be sit upright when eating or drinking. • Tuck your chin into your chest. • Wear dentures and eye glasses. • Avoid talking when eating. • Moisten dry foods with gravy, sauce, cream, butter and broths. • Cold drinks and foods may be easier to swallow. • Choose softer foods. • Eat slowly and try eating one food at a time – try not to mix different foods in the same mouthful. • Cut foods into smaller pieces and take small bites. • Do not mix solids and liquids in the same mouthful. • Completely swallow and empty mouth before taking another bite. • If someone is feeding you, they should be sitting at the same level as you. • After eating, remain in an upright position for 30-45 minutes. • Practice good oral hygiene before & after each meal and before bed. • Follow any additional instructions provided by your health care team.

References Association Professionelle des Nutritionnistes Experts en Dysphagia (APNED). (january 2011). Votre alimentation de plan purée. Montreal, QC : APNED. Jackson, F.J. (2011). Dysphagia Diet 5 Levels for Difficulty In Swallowing Diet. Jackson Siegelbaum Gastroenterology . Retrieved from http://gicare.com/diets/dysphagia-diet/ Hess, L. G., & Plowman, E. K. (2014). Safe Swallowing for PALS: What I Need to Know and Why it Matters. University of South Florida Health . Retrieved from http://nssrlab.org/wp-content/uploads/2014/07/Swallowing-Booklet-web-Word-2013-format_2.pdf Nestec (2011). Tips for managing life with dysphagia. Nestle Health Science . Retrieved from http://www.dysphagiaonline.com/en/pages/ 08_tips_for_ managing_life]_with _dysphagia.aspx

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Tips for you and your family if you have experienced changes to your swallowing

Eating is necessary for vital function, but also serves as a daily pleasure and a social and cultural tradition. Sharing meals with family and friends helps us to remain connected to them as well as to enrich our lives. Developing a difficulty to swallowing foods and liquids may cause you to feel certain losses connected to no longer being able to eat foods the way you would like to. You may also feel sad or angry if you can no longer eat some of your favourite foods.

Your family and friends may experience similar feelings as you go through these changes. They may also feel guilty about eating these foods in front of you. If they prepare your meals, they will also be learning how to customize foods based on your current needs. Meal preparation may take longer and may play into their free time. Though, it is important to remember that they want to help you as best they can. These changes may also leave you both feeling like you can no longer share a meal together because of your different eating habits and needs.

Here is a list of losses that both you and your family may experience as your swallowing and eating habits change. You and your family may be affected by these losses during any time in the progress of you illness.

Individual with ALS Caregiver s, famil y members & friends

• Loss of eating for • Loss of free time pleasure & enjoyment • Loss of social • Loss of social Loss of activities outside the activities outside the sharing a home home meal • Loss of time with • Loss of independence friends & family • Loss of control of body together • Loss of employment functions • Loss of finances

Christina Manganaro 2015 ©

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Despite this, having difficulty swallowing should not interfere with your ability to share meals with your family and friends. Instead of feeling guilty, sad or lonely because of your swallowing changes, you and your family should embrace them and continue to participate in these activities together. Here is a list of strategies to help you and your family members:

For the individual with ALS, √ Maintain meal gatherings with family and friends, even if you’re eating different things. Use it as a time to stay connected to your loved ones. √ Let your loved ones know that it might take you longer to eat a meal. √ Determine which foods may trigger you and communicate this to your family and friends before setting down for the meal. √ Share takeout nights. Treat yourself to having modified foods from a specialized company (Epikura, Campbell trepuree) while your loved ones eat from their favourite takeout restaurant. √ If able, help your caregiver prepare meals, especially if you liked to prepare meals and cook together prior to the changes in swallowing ability. √ If you can still swallow foods safely, have small amounts to taste within the recommendations of your health care provider. Do not feel pressured to please others by eating anything that could be harmful to you. √ If you are receiving enteral nutrition, schedule your feeds so that they are given at the same time as family meals. If you are on continuous feeds, have your loved one move you and your pump to the dining area so that you can participate in the meal gathering.

For the caregivers, family members and friends, √ Maintain meal gatherings and use it as a time to stay connected with your loved one √ Understand that they will probably take longer to eat their meal. √ Respect the dietary limitations of the individual with ALS. √ Know the signs of aspiration and choking and how to manage a situation if they individual is choking (Heimlich manoeuvre). √ Ask them which foods or beverages may trigger them to feel uncomfortable before sitting down for the meal. √ Share take out nights. Serve them specialized modified meals, while you eat from your favourite restaurant. √ Have them participate in meal preparation, especially is this is something you enjoyed before the swallowing changes started. √ If the individual is using enteral nutrition, continue to involve them in meal gatherings by adjusting feeding schedule to match those of family meals.

References Achilles, E (Ed). (2004). The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People with Swallowing Difficulties . Nashville, TN: Cumberland House Publishing. Liley, A. J., & Manthorpe, J. (2003). The impact of home enteral tube feeding in everyday life: a qualitative study. Health & Social Care in the Community, 11(5), 415-422. Roberge, C., Tran, M., Massoud, C., Poirée, B., Duval, N., Damecour, E., . . . Lebailly, P. (2000). Quality of life and home enteral tube feeding: a French prospective study in patients with head and neck or oesophageal cancer. British Journal of Cancer, 82(2), 263. Stavroulakis, T., Baird, W. O., Baxter, S. K., Walsh, T., Shaw, P. J., & McDermott, C. J. (2014). The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective. BMJ supportive & palliative care, bmjspcare-2013-000609. Winkler, M. F. (2007). American Society of Parenteral and Enteral Nutrition presidential address: Food for thought: It's more than nutrition. Journal of parenteral and enteral nutrition, 31(4), 334-340.

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 What to expect when getting your PEG or RIG tube

Your neurologist will decide when it is the best time for your PEG or RIG tube insertion. Here is some basic information on what to expect when getting your PEG or RIG tube:

• The PEG or percutaneous endoscopic gastrostomy tube is a special plastic tube that connects the inside of your stomach to the outside. • It is placed by two doctors using an endoscope, which is a tube that passes from the mouth to the stomach. • Inside your stomach, it is held in place by either a cap or balloon. • Local anaesthesia is injected to the skin. A small incision is made into the abdomen so that a wire can be inserted. • A RIG or radiologically inserted gastrostomy is similar to a PEG, but is instead inserted by the X-Ray department with X-Ray and scanning equipment. The tube is also held in place by a balloon. • The tube will provide a route for feeding formula, fluids, and medications. • Tube feeding can help you meet your nutritional needs when eating and drinking becomes more difficult. • It will also help you to maintain your weight. • With tube feeding, the food is in liquid form. With the right amount of tube feeding formula, it can provide all the important nutrients found in well-balanced diet. • The tube can stay in place for a year (about 6 months with a RIG). Adequate tube care can help to maintain it for a longer period. Discuss this with your doctor. • The tube can be neatly tucked away under clothes. • Many individuals with ALS have tube feeding at home and continue to participate in activities, such as shopping, travelling, and family events.

Once at the hospital: • The dietitian will visit you to find out some important information and she will need to choose the right formula and feeding rate for you. This can include: how much you were eating at home, what consistency of solids and liquids you were eating, how much fibre were you eating, your current height and weight, if you have lost any weight, and whether you would like to continue eating after the tube is inserted. • If you have private insurance, be sure to have this information ready. The dietitian will determine if your insurance covers tube feeding equipment and formula costs. If you are covered, you will receive a tube feeding pump and equipment from Nestle Nutrition.

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 • If you are covered by the RAMQ or your private insurance does not cover tube feeding equipment, you will be registered with the Programme Ministériel d’Alimentation Entérale. They will provide you with your pump (Epump by Covidien) and your tube feeding equipment (tubing, syringes). • You will not be able to eat or drink for up to 6 hours before the procedure. • Let your doctor know if you are taking any blood thinners (Warfarin, Coumadin) as you will need to stop taking these before your procedure. • You may experience pain and discomfort up to 48 hours after tube insertion, which you will be given pain medications for. • Feeding will only start 24 hours after the tube is inserted. • The dietitian will visit you to explain your feeding regimen: the type of formula you will be getting and the amount you will need every day, the feeding process of your PEG tube, and the duration of your feed. • Feeding will start off slow and progress until you have reached your individualized feeding goal rate. This may take a few days depending on how much you were eating at home and how well you handle the formula. • Your nurse and dietitian will monitor how well you are handling the feed. • Your nurse will teach you and your caregiver how to flush the tube with water, how to give medications with the tube, and how to keep the skin around your tube clean. They will also teach you how to take care of your tube at home. • The dietitian will set up an appointment with the representative of the company that will be providing you with your tube feeding pump. They will bring you your pump and some tubing samples upon your return home. They will also explain information on how to order more equipment and where to call if you have any questions about the pump. Be sure that your caregiver can attend the meeting. • Before you are discharged, the dietitian will provide you with information on how to care for the PEG at home and about home tube feeding. They will also provide you with your prescription for tube feeding formula and other equipment. • You will also need an IV pole. The dietitian will tell you if your local CLSC can provide you with one. If not, she will also give you the information so that you can buy one yourself. It will be reimbursed by either the Programme Ministériel d’Alimentation Entérale or your private insurance.

At home: • You will receive a visit from your local home care CLSC nurse and dietitian to make sure you are set up with your tube feeding at home. The dietitian can help you customize your feeding schedule.

References Cleveland Clinic. (2014). Percutaneous Endoscopic Gastrostomy (PEG). Treatments and Procedures. Retrieved from http://my.clevelandclinic.org/health/treatments_and_procedures/hic-percutaneous-endoscopic-gastrostomy-PEG Doncaster and Bassetlaw Hospitals. (October 2010). PEG insertion. Department of Endoscopy. Retrieved on March 15, 2015 from http://www.dbh.nhs.uk/Library/Patient_Information_Leaflets/WPR33240%20Peg%20Insertion.pdf Healthtalkonline. (September 2014). PEGs, RIGs, PIGs and ventilation. Motor Neurone Disease (MND). Retrieved on March 15, 2015 from http://www.healthtalk.org/peoples-experiences/nerves-brain/motor-neurone-disease-mnd/pegs-rigs-pigs-and-ventilation Mitsumoto, H. (2010). Amyotrophic Lateral Sclerosis: A Guide for Patients and Families (3rd Ed.). New York, NY: Taylor & Francis Group

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Modified diets for swallowing difficulties

Your healthcare professional may have recommended that you follow a specific diet texture because of changes to your swallowing. There is a range of modified diets depending on how easily who can swallow and chew (pureed, minced, soft, & regular).

Here is a list of the modified textured diets to be used as a guide at home when choosing foods and meals that you can safely eat. Follow the recommendations followed by your healthcare provider as they may be foods on this list that you can or cannot eat depending on your own needs. If you recognize that your swallowing abilities have changed and that you are having trouble eating or swallowing certain foods, please contact your healthcare provider. You may need to be reassessed for your swallowing. For your own safety, please do not attempt to modify your diet on your own, always refer to your health care provider for questions and concerns.

For pre-made modified food options, view the community resource section of the toolkit. Here you will find a list of available resources in your community. Ask your local home care dietitian- nutritionist or social worker for other available resources in your community (meals-on- wheels, frozen meals) that may be helpful to you.

Recommended serving sizes for each food group is also included for each diet texture. Each food group has a range of recommended serving sizes. Smaller frames may require fewer servings per day, while those trying to gain weight might require more servings per day. Review this with your dietitian-nutritionist to know what the right amount of daily servings is for you.

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Pureed texture Review the document “How to puree and modify your meals” for instructions on how to make your own pureed foods at home If you are on thickened liquids, please follow the necessary recommendations to modify your liquids provided by your health professional. Foods followed by a “*” should be considered as thin liquids and be modified as needed.

Review this list with you dietitian-nutrition so that they can personalize your diet Food group Foods to include Foods to exclude Dairy products & -smooth puddings, custards and -puddings, custards and yogurts with alternatives yogurts without any pieces of pieces of fruits, candies or nuts 2-3 per day fruits, candies or nuts -rice or tapioca puddings -ice cream*, frozen yogurt*, ice -ice cream, frozen yogurt, ice milk -1 cup (250ml) milk, soy milk* without pieces with pieces milk or milk alternative -fresh cheeses (Minigo, Quark) - cream cheese, soft cheese, sliced -3/4cup (175g) yogurt and pureed cottage cheese or firm cheeses -1/2cup (125ml) cottage/ricotta cheese -1/2cup (125ml) ice cream, frozen yogurt or milk dessert Fruits -pureed fruits & sauces without -other fruits in pieces 2-4 per day pieces, sorbet* -mashed bananas -1 medium fruit -1/2 cup (125ml) of pureed or canned fruit -1/2 cup (125ml) fruit juice -1/2cup (125ml) sorbet Vegetables -mashed potatoes -other potatoes 3-5 per day -pureed, well-cooked vegetables -other vegetables in pieces -creamed corn -1/2 cup (125ml) cooked or pureed vegetables -1/2 cup (125ml) of vegetable juice Meat & alternatives -pureed meats (chicken, beef, -minced, sliced or whole pieces of 2-3 per day pork, fish, eggs) & mixed dishes beef, chicken, pork or fish -pureed hummus, tofu and beans -peanut and other nut butters -2 eggs (smooth or crunchy) -75g (2 ½ oz) meat -seeds -1/2 cup (125ml) pureed meats -3/4 cup (175ml) legumes or tofu

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Grain products -hot cereals: pureed oatmeal, -regular oatmeal (large flakes) 6-11 cream of wheat, baby cereal -other grains (rice, quinoa, bulgur, -pureed cold cereal, blended to a millet, couscous, barley etc.) -1/2 cup (125ml) pasta, powder and mixed with -bread, rolls, crackers, dry cereal rice, other grains thickened milk, thickened cream -3/4 cup (175ml) hot or or yogurt cold cereal -well cooked pasta -1 medium muffin -pureed cake or muffin, without (about 6cm or 2 ½ icing or nuts, mixed with inches in diameter) thickened milk, cream, yogurt or pudding

References Association Professionelle des Nutritionnistes Experts en Dysphagia (APNED). (january 2011). Votre alimentation de plan purée . Montreal, QC : APNED. Ordre Professionelle des diététiste du Québec (OPDQ). (2015). Régime de textures adaptées pour les troubles de la déglutition : purée. Manuel de Nutrition Clinique . Retrieved from http://opdq.org/mnc/regime-de-textures-adaptees-pour-les-troubles-de-la-deglutition/

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Minced texture If you are on thickened liquids, please follow the necessary recommendations to modify your liquids provided by your health professional. Foods followed by a “*” should be considered as thin liquids and modified as needed.

Review this list with you dietitian-nutrition so that they can personalize your diet Food group & Foods to include Foods to exclude Servings Dairy products & -smooth puddings, custards, -puddings with pieces of fruits, alternatives tapioca, without any pieces of candies or nuts & rice puddings 2-3 per day fruits, candies, caramel or nuts -ice cream, frozen yogurt, ice milk -ice cream*, frozen yogurt*, ice with pieces -1 cup (250ml) milk, soy milk* without pieces -cheese, sliced or firm (cheddar fort, milk or milk alternative -fresh cheese Minigo, Quark, parmesan, gruyere) -3/4cup (175g) yogurt Cottage, grated Parmesan, -commercial yogurt with pieces of -1/2cup (125ml) Ricotta fruit larger than 5 mm cottage/ricotta cheese -commercial yogurt with small -1/2cup (125ml) ice pieces of fruit (less than 5 mm) cream, frozen yogurt or milk dessert Fruits -pureed fruits & sauces without -other fresh fruits 2-4 per day pieces, sorbet*, gelatine* -dried fruits -ripe bananas, avocado -fresh or canned pineapple -1 medium fruit -peeled, ripe, minced fruits -fresh or canned mandarins, -1/2 cup (125ml) of -soft, drained, canned fruits grapefruit, oranges, clementines pureed or canned fruit (pears, peaches, apricots) -1/2 cup (125ml) fruit juice -1/2cup (125ml) sorbet Vegetables -mashed potatoes or boiled -other potatoes (fries, oven baked) 3-5 per day potatoes crushed with a fork -other vegetables under cooked, in with milk, cream or sauce pieces -1/2 cup (125ml) cooked -pureed vegetables -raw vegetables, lettuce or pureed vegetables -well-cooked, minced vegetables -corn on the cob or grains -1/2 cup (125ml) of -creamed corn vegetable juice Mixed dishes -Minced mixed dishes -regular mixed dishes -Shepard’s pie with cream of -Shepard’s pie with grain corn corn -chicken, meat or salmon pie, with -chicken, meat or salmon pie, crust without crust -soup with large chunks -meatloaf or salmon loaf with sauce

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Meat & alternatives -scrabbled egg, plain omelette, -hard-boiled egg, omelette or quiche 2-3 per day soufflé or quiche, with small with cheese or vegetables & crust pieces (less than 5mm), without -peanut & other nut butters -2 eggs a crust -seeds -75g (2 ½ oz) meat -liver pâté -grilled fish -3/4 cup (175ml) -poached or oven baked fish, -whole seafood legumes or tofu crumbed canned tuna, other -other whole meats -1/2 cup (125ml) pureed minced fish -white chicken meat meat -minced crab, lobster, scallop -other, whole legumes -meat (beef, pork, veal, lamb) or -firm tofu brown chicken meat, minced served with sauce -silken tofu, hummus, beans crushed with a fork or pureed

Grain products -hot cereals: oatmeal, cream of -cereal with nuts, seeds, dried fruits 6-11 wheat, baby cereal -cereal with psyllium -cold cereals without nuts or -bread, rolls, crackers, dry cereal, tea -1/2 cup (125ml) pasta, dried fruits, mixed with biscuits rice, other grains thickened milk or cream -Whole wheat pasta or large pasta -3/4 cup (175ml) hot or -Arborio rice (fettuccini, lasagne, rigatoni) cold cereal -well cooked, small pasta with -Wild rice, brown rice, couscous, -1 medium muffin sauce, without pieces bulgur, barley (about 6cm or 2 ½ -cake or muffin, without icing or -cake with nuts or dried fruits inches in diameter) nuts, mixed with thickened milk, cream, yogurt or pudding or pureed -trifle with minced fruit Other Aerated chocolate Aero ® or Other chocolates & candies Mirage ®

Reference Association Professionelle des Nutritionnistes Experts en Dysphagia (APNED). (january 2011). Votre alimentation de plan hachée . Montreal, QC : APNED. Ordre Professionelle des diététiste du Québec (OPDQ). (2015). Régime de textures adaptées pour les troubles de la déglutition : hachée. Manuel de Nutrition Clinique . Retrieved from http://opdq.org/mnc/regime-de-textures-adaptees-pour-les-troubles-de-la-deglutition/

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Soft texture If you are on thickened liquids, please follow the necessary recommendations to modify your liquids provided by your health professional. Foods followed by a “*” should be considered as thin liquids and modified as needed.

Review this list with you dietitian-nutrition so that they can personalize your diet Food group & Foods to include Foods to exclude Servings Dairy products & -ice cream*, frozen yogurt*, ice -ice cream*, frozen yogurt*, ice alternatives milk*, without hard pieces milk*, with nuts, dried fruits or 2-3 per day - fresh cheese Minigo, Quark, caramel Cottage, grated Parmesan, -firm cheese, aged Cheddar, -1 cup (250ml) milk, soy Ricotta, cream cheese, brie, Parmesan, Gruyere, fondues, milk or milk alternative camembert, sliced, soft cheeses cheese with seeds or dried fruits -3/4cup (175g) yogurt (light cheddar, brick, gouda) -puddings with dried fruits, nuts or -1/2cup (125ml) -various puddings, without dried seeds cottage/ricotta cheese fruits, nuts or seeds -commercial yogurts with granola, -1/2cup (125ml) ice -commercial yogurts with fruit nuts, fresh fruit, seeds, or cream, frozen yogurt or pieces, without dried fruits or chocolate chips milk dessert nuts, with fruits that are permitted Fruits -fresh fruits: banana, avocado, -fresh fruit: grapes, clementines, 2-4 per day peeled & sliced apple, berries oranges, grapefruit, apples with -canned fruits: apricots, pears, skins -1 medium fruit peaches, fruit salad, mandarins, -fresh fruit salad or tropical -1/2 cup (125ml) of crushed pineapple -fresh or canned pineapple, not pureed or canned fruit -ripe, peeled fruit: mango, kiwi, crushed -1/2 cup (125ml) fruit papaya, melons, cantaloupe, -dried fruits: raisins, dates, apricots, juice -pureed fruits or sauces prunes, cranberries -1/2cup (125ml) sorbet -sorbets*, gelatine*, jello-O Vegetables -well cooked vegetables -al dente cooked vegetables 3-5 per day -creamed corn -corn on the cob or grains -mashed potatoes, fries, boiled -raw vegetables -1/2 cup (125ml) cooked potatoes, hash browns -lettuce or pureed vegetables -bean sprouts -1/2 cup (125ml) of -peas vegetable juice Mixed dishes -sandwiches: egg salad, tuna, fish -Shepard’s pie with corn grains mouse, minced meats -other mixed dishes -meatloaf or salmon loaf -meat pie (Tourtière) -meatballs -Shepard’s pie with creamed corn

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Meat & alternatives -scrambled, poached, boiled -eggs in vinegar 2-3 per day eggs, omelettes, quiches -grilled, roasted, barbecued, fried, -braised, stewed meat browned meats -2 eggs -brown chicken meat, minced -sausages -75g (2 ½ oz) meat white chicken meat -grilled, barbecued, fried fish -3/4 cup (175ml) -liver pâté, pâté, creton, sausage -whole seafood legumes or tofu meat with casing -nuts & seeds -1/2 cup (125ml) pureed -fresh or canned fish, without -peanut & nut butters meat bones -semi-firm, firm tofu -poached, baked, boiled fish -canned, crumbled tuna -chopped seafood -canned beans -baked beans -silken tofu, hummus Grain products -hot cereal: oatmeal, baby -granola, cereal with nuts, seeds or 6-11 cereal, cream of wheat dried fruit, cereal with psyllium -cold cereal without nuts, seeds -sliced bread, muffin or cake with -1/2 cup (125ml) pasta, or dried fruit seeds or nuts, dried fruit rice, other grains -sliced bread, without seeds or -pumpernickel or rye bread -3/4 cup (175ml) hot or nuts -crusty bread cold cereal -french toast, pancakes -bagels -1 medium muffin -muffin without nuts, seeds or -croissants or waffles (about 6cm or 2 ½ dried fruit, soaked in milk, cream -Melba toast ® inches in diameter) or yogurt as needed -cake without dried fruits, nuts -Rusti ® type of cracker and/with -Arborio rice, white rice, risotto, seeds millet, couscous, barley -Wild or brown rice -small pasta with sauce -puff or flaky pastry -tea biscuits -whole wheat or large pasta -soda crackers (lasagne, rigatoni, etc) -trifle with fruits -pasta baked in the oven with cheese (au gratin) Other aerated chocolate Aero ® or -other chocolates: Caramilk ®, Mirage ® Toblerone ®, etc -chocolate with dried fruit or nuts -nachos, chips, pretzels -popcorn -flaky pastries

Reference Association Professionelle des Nutritionnistes Experts en Dysphagia (APNED). (january 2011). Votre alimentation de plan molle . Montreal, QC : APNED. Ordre Professionelle des diététiste du Québec (OPDQ). (2015). Régime de textures adaptées pour les troubles de la déglutition : molle. Manuel de Nutrition Clinique . Retrieved from http://opdq.org/mnc/regime-de-textures-adaptees-pour-les-troubles-de-la-deglutition/

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Regular texture If you are on thickened liquids, please follow the necessary recommendations to modify your liquids provided by your health professional. Foods followed by a “*” should be considered as thin liquids and modified as needed.

Review this list with you dietitian-nutrition so that they can personalize your diet Food group & Foods to include Foods to exclude Servings Dairy products & -ice cream*, frozen yogurt*, ice -ice cream*, frozen yogurt*, ice alternatives milk* without nuts or dried fruits milk* with nuts or dried fruits 2-3 per day -various cheese without nuts or -various cheese with nuts or dried dried fruits fruits -1 cup (250ml) milk, soy -various yogurts without nuts or -various yogurts with nuts, dried milk or milk alternative dried fruits, with fruits that are fruits, granola, or coconut -3/4cup (175g) yogurt permitted -various puddings with nuts or -1/2cup (125ml) -various puddings without nuts dried fruits cottage/ricotta cheese or dried fruits -1/2cup (125ml) ice cream, frozen yogurt or milk dessert Fruits -drained canned fruit -dried fruits (raisins, banana slides, 2-4 per day -unpeeled, fresh, ripe fruit apricots, prunes, dates, -citrus fruits, watermelon cranberries) -1 medium fruit -fresh grapes without seeds, -1/2 cup (125ml) of tender, peeled apple, cantaloupe pureed or canned fruit -pureed fruit or sauce -1/2 cup (125ml) fruit juice -1/2cup (125ml) sorbet Vegetables -vegetables cooked al dente -raw vegetables: broccoli, celery 3-5 per day -lettuce, raw vegetables: peeled carrots, cauliflower cucumbers, chopped tomatoes, -1/2 cup (125ml) cooked radishes or pureed vegetables -varies potatoes -1/2 cup (125ml) of vegetable juice Mixed dishes -mixed dishes with tender meat, -other mixed dishes chicken, fish, vegetables -club sandwich (bacon) -sandwich or croissant with sliced meats, eggs or minced meats (hamburger) -meat pie (Tourtière) -meatloaf or salmon loaf, meatballs -Shepard’s pie

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Meat & alternatives -various eggs or egg dishes -grilled or very tough meats 2-3 per day -tender, braised, stewed or -dried sausages boiled meat or chicken -peanut & other crunchy nut -2 eggs -liver pâté, creton butters -75g (2 ½ oz) meat -fresh fish without bones -nuts & seeds -3/4 cup (175ml) -lobster, shrimp, scallops legumes or tofu -sausages -1/2 cup (125ml) pureed -legumes meat -creamy peanut & nut butters -silken or firm tofu Grain products -muffin or cake without seeds, -muffin, cake, breads, cold cereals 6-11 nuts or dried fruit with seeds, nuts or dried fruit -all pastas -pumpernickel bread -1/2 cup (125ml) pasta, -millet, bulgur -tradition bagels rice, other grains -risotto, white rice, brown rice, -crispy, crunchy cookies (biscotti) -3/4 cup (175ml) hot or wild rice, couscous cold cereal -bread without nuts or seeds -1 medium muffin -croissant, pancakes, waffles, (about 6cm or 2 ½ french toast, soft bagels inches in diameter) -crackers -hot cereals: oatmeal, cream of wheat, baby cereal -cold cereals, without nuts, seeds, or dried fruit, in milk -puff or flaky pastry -soft cookies without nuts Other -chocolate without nougat or -chocolate with nougat or caramel caramel -adhesive candies: jelly beans, -crisps, chips liquorice, caramel -pop corn -pretzels, nachos

Reference Association Professionelle des Nutritionnistes Experts en Dysphagia (APNED). (january 2011). Votre alimentation de plan tendre . Montreal, QC : APNED. Ordre Professionelle des diététiste du Québec (OPDQ). (2015). Régime de textures adaptées pour les troubles de la déglutition : trendre. Manuel de Nutrition Clinique . Retrieved from http://opdq.org/mnc/regime-de-textures-adaptees-pour-les-troubles-de-la-deglutition/

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Unsafe foods for those with swallowing difficulties

Some foods are harder to chew, move in your mouth and swallow. Review the list with your health care professional to see which ones are still safe for you to eat. If your health professional has also recommended that you eat a modified diet, review this section of the nutritional toolkit too.

Foods that may be more difficult to eat : • Hard foods: nuts, seeds, candies, raw vegetables, • Crunchy foods: toast, chips • Stringy, fibrous texture: string beans, pineapple, lettuce, celery, oranges, watermelon • Mixed consistency: cereal that does blend into milk (granola, muesli), watery soups with noodles, meats or vegetables, stew with lumps, yogurt with pieces of fruit, candy or cereal • Crumbly, flaky foods: pie crusts, dry cookies, day old muffins or cupcakes, dry minced meats, crackers, croissant • Dry foods: dried meats, popcorn, toast, dry cereal, graham crackers, Melba toast, fried noodles or rice, • Vegetable and fruit skins or seeds: grapes, beans, peas, sweet corn, apples, pears, berries • Husks: corn on the cob • Sticky foods: nut butters, caramel • Soft, sticky, doughy, fresh bread: white bread, doughnuts, cinnamon rolls • Foods that melt: ice cream, popsicles, jell-O, sherbet, frozen yogurt • Very spicy foods • Acidic foods: some dressings, picked items

References Hess, L. G., & Plowman, E. K. (2014). Safe Swallowing for PALS: What I Need to Know and Why it Matters. University of South Florida Health . Retrieved from http://nssrlab.org/wp-content/uploads/2014/07/Swallowing-Booklet-web-Word-2013-format_2.pdf McCarthy, J (Ed.). (2012). A manual for people living with ALS (7 th Ed). ALS society of Canada . Retrieved online from http://sla- quebec.ca/images/finder/files/PDFS%20AND%20ATTACHMENTS%20%20Phil/ABOUT%20ALS/Resources/Manual/2012%20Manual%20 People %20Living%20With%20ALS%20-%20ENGLISH%20Final.pdf Nutricia Nutilis. (2011). Tasty food. Safer food . Retrieved from http://dysphagia.ie/uploads /documents/FINAL_Nutilis_recipe _book_printed_04.03.11.pdf

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04

Useful resources & websites for dysphagia

Dysphagia tips from Nestle Nutrition: http://www.dysphagiaonline.com/en/pages/08_tips_for_managing_life_with_dysphagia.aspx

Pureed foods See community lists for other available pureed or modified foods in your community Ask your local home care dietitian-nutritionist or social worker for other available resources in your community (meals-on-wheels, frozen meals) that may be helpful to you.

Epikura– reshaped pureed foods. See list: Where to find Epikura in my community?

Campbell trepuree – see list: Where to find Campbell’s trepuree in my community?

Food molds Varieties of foods molds available to make your own reshaped pureed foods at home: • http://www.hubert.ca/73153/Baby-Carrot-Food-Molds-for-Pureed-Foods.html • https://www.dysphagia-diet.com/c-488-puree-molds.aspx

Thickeners & thickened products

Nestle Nutrition products Website: https://www.nestlehealthscience.ca/en

• Ask your local pharmacy if they can order your products (Also check-up if they have any at Walmart or Costco) o ThickenUp or ThickenUp Clear: ~$20 per canister o Beneprotein: ~$20-25 per canister (can be covered by RAMQ with prescription)

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Stomomédical 599 boul St-Martin ouest Laval (QC) H7M 1Y9 To order: 450-786-0786 or toll free: 1-866-986-0786 Opening Hours : Monday to Friday 8h30AM to 6PM, Saturday 9AM to 1PM

157. St-Charles West, Longueuil, Qc., J4H 1C7 (450) 928-4848 or toll free: 1-866-986-0786 Opening Hours : Monday to Friday 8AM to 7PM, Saturday 9AM to 5PM http://www.stomomedical.ca/en/contact-us.html Free delivery across Quebec with purchases of $50 and more. Fee of $6.25 for purchases less than $50.

Available products: Resource ® thicken up juice in nectar and honey Resource ® Dairy thick in nectar and honey Available in orange, apple and cranberry 237ml tetrapacks x 27/case 237ml tetrapacks x 27/case • $1.57 per 237ml tetrapack • $1.85 per 237ml tetrapack • $42.43 per case of 27 • $49.85 per case of 27 Resource ® thickened water with lemon Resource ® Beneprotein 237ml tetrapacks x 27/case 6 boxes of 227g/case • $1.50 per 237ml tetrapack • $23.44 per 227g case • $40.50 per case of 27 • $140.64 for 6 boxes Resource ® ThickenUp clear Resource ® ThickenUp 12 boxes of 125g cases 12 boxes of 227g cases • $17.36 per 125g case • $7.20 per 227g case • $208.30 for 12 boxes • $86.40 for 12 boxes 1 box of 24 sachets 1 box of 75 sachets • $0.61 per sachet • $0.49 per sachet • $14.72 per box of 24 sachets • $36.43 per box of 75 sachets Some oral nutrition supplements, enteral feeding formula and gastrostomy products also available (tubing, 1000ml vinyl bags for gravity and pump feeding). For full price list see attached sheet.

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Centre de stomie du Québec inc 418-522-1268 or 1-800-463-5318 http://www.stomie.ca/ • List of available products: http://www.stomie.ca/fr/produits/alimentation-specialisee/ • Delivery across Quebec

Well.ca • Variety of Resource ® thickened products & powder available online • To purchase: https://well.ca/brand/resource.html • Free shipping for orders over $29 CAD

Simplythick • Gel food and beverage thickener • Nectar and honey consistencies available in a variety of sizes • http://www.simplythick.com/ • Recipe booklet: available online

Other nutritional products

Beneprotein • Available at your local pharmacy • Can be covered by RAMQ if prescribed by your doctor • $20-25 per 227g canister (before RAMQ coverage) • See recipes for ideas on how to add Beneprotein ® to your foods

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Recipes • Resource ® ThickenUp Clear http://www.thickenupclear.com/dysphagia-recipes • ALS association: http://www.alsa.org/als-care/resources/publications- videos/factsheets/recipes.html#breakfast • Dysphagia-diet.com https://www.dysphagia-diet.com/t-recipes-dysphagiapuree.aspx

Cookbooks • “The Dysphagia Cookbook” by Elayne Achilles, Ed.D. o Available at the ALS Society’s library o Tailored for individuals eating a soft diet o May have to adjust recipes for pureed diets • “Soft Foods for Easier Eating Cookbook” by Sandra Woodruff, R.D. and Leah Gilbert- Henderson, Ph.D. • Saveurs partagées : la gastronomie adaptée aux troubles de la déglutition, Sidobre Pascal; Chevallier Christian o Available for $30 online at amazon.ca o Check local bookstores • La purée dans tous ses états, Danielle Daunais et Daniel Lavoie, nutritionniste o Order from University of Montreal for $24.25 (includes delivery fee) o Order form: see attached • For more information and other available cookbooks: http://swallowingdisorderfoundation.com/which-dysphagia-cookbook-is-right-for-you/

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Pureed foods and thickened beverages in your community: Montreal, Laval & South shore

Pureed foods : Ask your local home care dietitian-nutritionist or social worker for other available resources in your community (meals-on-wheels, frozen meals) that may be helpful to you.

Campbell ® Trepuree pureed meals

Meals on Wheels - L'Association des Popotes Roulantes du Montréal Métropolitain 1919, rue Saint-Jacques, Montréal, QC H3J 1H2 [email protected] • 514-937-4798 • Can order 12 ($33) or 24 ($66) portions at a time - $2.75/250g portion • Each meal comes with a serving of pureed meat, vegetables and starch • 12 varieties of meals per purchase • Home delivery is possible in certain areas of Montreal (Ahuntsic, Anjou, Centre-Sud, Outremont, Plateau Mont-Royal, Rosemont- Petite Patrie, Sud-Ouest, Villeray) with additional cost of $2.50 for delivery • Call by Monday for delivery on Wednesdays. • Pick-up at the head office is also possible • Order meals online : http://www.popoteroulante.org/bondecommande_trepuree.php • Website: http://www.popoteroulante.com

Mayrand 5650 Métropolitain Est, Saint-Léonard • 514-255-9330 • Case of 24. Cost: $52.00. • No delivery • Opening hours: Monday, Tuesday, Wednesday, Saturday 6:45 AM – 4:30 PM. • Thursday, Friday: 6.45 AM – 9:00 PM. Sunday: 9 AM – 4 PM

West Island Volunteer Bureau 1 rue de l’Eglise, Ste.Anne-de-Bellevue • 514-457-5445 • Purchase at counter, or delivery only to West Island. • Opening hours: Monday to Friday : 8:30 AM – 4:00 PM. • Cost : ~ $57.00 for a 24 case

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Duvernay, Laval Résidence Le Maria Chapdelaine 1850 boul Lévesque Est • 450-662-9605 • No delivery • Communicate with Josée Perrault between 8 AM – 10 AM and 2 PM – 4 PM. • Complete your order before Wednesdays.

Hot pureed foods Meals on Wheels - Santropol Roulant delivers in the Greater Montreal area • Contact Paulo, Client-relations Coordinator: 514-284-9335 • Must be referred by health professional (dietitian, doctor, social worker, nurse, etc) • Delivers hot meals on Monday, Tuesday, Wednesday, Friday & Saturday from 3:30pm - 6:00pm – request pureed foods • Each meal costs $4.50 and includes: a main dish, two accompanying vegetables, and the choice of: a home-made dessert, a home-made diabetic dessert, a fresh fruit salad, a green salad, or a pudding. • Territory & website: http://santropolroulant.org/what-we-do/meals-on- wheels/become-a-client/

Epikura Agrigourmet 514-508-4383 5106 rue de Charleroi Montréal-Nord, Qc [email protected] • Delivery of Epikura frozen meals: http://www.agrigourmet.ca/Epikura/ • Epikura is a company specializing in reshaped pureed foods • Order form: • Delivery available in Montreal, Laval and South Shore (Longueuil, Boucherville, St- Lambert) – see website for minimum delivery fee for different areas: http://www.agrigourmet.ca/la-livraison/ • Can also pick-up food from head office • Instructions on preparing foods:

Thickened liquids, thickeners & other products (Nestle Nutrition thickened products)

Pharmacies: See Nestle Nutrition document on dysphagia for full product list:

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 • Montreal: Pharmacie (Proxim) Morin – 514-254-7513 o 5955, rue Sherbrooke E, Montréal, QC H1N 1B7. • Pierrefonds: Jean Coutu – 514-620-7920 o 4930, boulevard Saint-Jean Pierrefonds (QC) H9H4B2.

Stomomédical 599 boul St-Martin ouest Laval (QC) H7M 1Y9 To order: 450-786-0786 or toll free: 1-866-986-0786 Opening Hours : Monday to Friday 8h30AM to 6PM, Saturday 9AM to 1PM

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Pureed foods in your community: Salaberry-de-Valleyfield and Beauharnois

Check Epikura and Campbell’s Trepuree lists for suppliers in your community

Ask your local home care dietitian-nutritionist or social worker for other available resources in your community (meals-on-wheels, frozen meals) that may be helpful to you.

Fresh frozen meals • Suroît Hospital prepares minced or pureed frozen meals and can accommodate any other dietary restrictions (diabetic, allergies) • Meals are $5 each and delivered once a week with Meals on Wheels • Call Manon Loiselle at 450-371-9920 ext 2030 to order meals • No reference from a health care professional required

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Pureed foods in your community: Valcourt

Check Epikura and Campbell’s Trepuree lists for suppliers in your community

Ask your local home care dietitian-nutritionist or social worker for other available resources in your community (meals-on-wheels, frozen meals) that may be helpful to you.

Hot pureed meals • Centre d’action bénévole Valcourt can provide pureed meals through their meals on wheels service • Call Collette Fontaine at 450-532-2225 • Meals are $5 each • Delivered 5 days a week (Monday to Friday) • No reference from a health care professional required

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Where to find Campbell’s trepuree in your community?

• 12 varieties of meals available • Each meal comes with a serving of pureed meat, vegetables and starch

Montreal Meals on Wheels - L'Association des Popotes Roulantes du Montréal Métropolitain 1919, rue Saint-Jacques, Montréal, QC H3J 1H2 [email protected] • 514-937-4798 • Can order 12 ($33) or 24 ($66) portions at a time - $2.75/250g portion • Home delivery is possible in certain areas of Montreal (Ahuntsic, Anjou, Centre-Sud, Outremont, Plateau Mont-Royal, Rosemont- Petite Patrie, Sud-Ouest, Villeray) with additional cost of $2.50 for delivery • Call by Monday for delivery on Wednesdays. • Pick-up at the head office is also possible • Order meals online : http://www.popoteroulante.org/bondecommande_trepuree.php • Website: http://www.popoteroulante.com

West Island Volunteer Bureau 1 rue de l’Eglise, Ste.Anne-de-Bellevue • 514-457-5445 • Purchase at counter, or delivery only to West Island. • Opening hours: Monday to Friday : 8 :30 AM – 4 :00 PM. • Cost : ~ $57.00 for a 24 case

Laval Le Centre SCAMA 3168 Cartier, ouest, Chomedey • 450 681-4240 Email : [email protected] • Purchase at counter • http://infoaineslaval.qc.ca/

Résidence Le Maria Chapdelaine 1850 boul Lévesque Est, Duvernay • 450-662-9605 • No delivery • Communicate with Josée Perrault between 8 AM – 10 AM and 2 PM – 4 PM. • Complete your order before Wednesdays.

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Estrie/Sherbrooke Sercovie 300, rue du Conseil, 2e étage, Sherbrooke (Québec) J1G 1J4 • (819) 565-1066 Email : [email protected] • $5.25 per meal • 12 varieties of meals offered : • http://www.sercovie.org/index.php/services-alimentaires/repas-trepuree

St-Jean-sur-le-Richelieu En passant… Comptoir Santé 378 boul. St-Luc, suite 100, J2W 2A3 • 1-450-349-1750 or 1-888-848-1750 Email: [email protected] • http://www.enpassant.ca/ • Delivery with minimum purchase of $30 with $5 delivery charge • For orders $65 or more, the delivery fee is $2

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Where to find Epikura in your community? • Reshaped pureed foods • Website: http://www.epikura.com/en/where-to-buy-epikura/

Anywhere in Quebec Vagabond’âge distribution • Delivery only • 514-510-1393

Montreal Agrigourmet 5106, rue de Charleroi, Montréal, H1G 2Z8 • 514-508-4383 Email : [email protected] • www.agrigourmet.ca • See order form attached • Delivery available in Montreal, Laval and South Shore (Longueuil, Boucherville, St- Lambert) – see website for minimum delivery fee for different areas: http://www.agrigourmet.ca/la-livraison/ • Can also pick-up food from head office

North shore/Laval Expo-Médicb 139 boul. Concorde Est, Laval • 450-975-2299 • Delivery available • www.expomedic.info

South shore En passant… Comptoir Santé 378 boul. St-Luc, suite 100, J2W 2A3 St-Jean-sur-le-Richelieu • 1-450-349-1750 ou 1-888-848-1750 • [email protected] • Delivery available for orders over $30 with an additional delivery fee of $5 • For orders over $65, the delivery fee is $2 • http://www.enpassant.ca/

La Croisée de Longueuil 300 rue Lamarre, Longueuil La petite cuillère Cuisine des Habitations Paul Pratt • Delivery available to Longueuil only • 450-748-4918 • www.lacroiseedelongueuil.qc.ca

Laurentides Region Centre Josée Pressé 590, des Anémones, Mont-Laurier, J9L 3G3 • 819-440-7801

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Outaouais Region Les Entreprises Médicales de l’Outaouais 131, Gréber boul., Gatineau, J8T 3R1 • 819-643-5363 or Toll free : 1-800-363-3498 • Email : [email protected] • http://canadacaremedical.com/contactus.php

Centre-Du-Québec Centre d’action Bénévole Drummond 157, Lindsay st.,#200, Drummondville, J2C 1N7 • 819-472-6101 • www.cabdrummond.ca

Nicolet Carotte joyeuse 525,du Port rd., Nicolet, J3T 1W3 • 819-293-6544 • [email protected] • www.carottejoyeuse.ca

Quebec City area La Baratte 2120, Boivin st., Ste-Foy (Québec) G1V 1N7 • 418-527-1173 • www.labaratte.ca • Delivery available • See order sheet attached

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Recipe - Thickened ice cream

ThickenUp and ThickenUp clear can also be used to thicken ice cream following the same instructions to thicken liquids.

Desired consistency Portion of ice cream (without any pieces of chocolates, nuts, fruits, caramel) 125ml 250ml Nectar 1 scoop 2 scoop 1 stick 2 sticks Honey 2 scoop 4 scoop 2 sticks 4 sticks Pudding 3 scoop 6 scoop 3 sticks 6 sticks

Steps for mixing • Measure out the desired portion of ice cream • Add appropriate quantity of powder to ice cream • Mix powder into ice cream for 20-30 seconds until powder is no longer visible • Allow to stand 1-5 minutes. Return to freezer. Serve when ready. • Monitor the individual with ALS for any choking or changes in voices • Thinner ice creams, such as ice milks or sorbets may need an additional scoop of thickener to get the right consistency. Modify as needed. As with clear liquids, it is safer to have an ice cream that is thicker rather than thinner.

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 Alternative recipe

Xanthan gum is a microbial thickening agent used in many prepared foods such as gluten-free products. It can be purchased in the health food section of your grocery store: 1 small bag costs between $13-18. Xanthan gum can be added to cold or hot foods.

To make a xanthan gum gel

Ingredients • 1 tablespoon (15ml) of xanthan gum • 1 cup (250ml) of water

Instructions • Slowly add water to xanthan gum • Stir vigorously using a fork or whisk • Some clumps may still appear, let the mixture to sit in the fridge for about 15 min which will allow the rest of the xanthan gum to dissolve • You can also use a blender to dissolve the xanthan gum instantly • It can sit in the fridge in a covered container for up to 2 days

Ice cream recipe

Ingredients • 1 tablespoon Xanthan gum gels • ½ cup (125ml) ice cream of your choice (without added candies, nuts, or fruits)

Instructions • Soften ice cream at room temperature for about 5 minutes • Stir in xanthan gum gel • Refreeze and enjoy • Monitor the individual with ALS for any choking or changes in voices • Add an extra tablespoon for pudding consistency

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04 References

Association Professionelle des Nutritionnistes Experts en Dysphagia (APNED). (january 2011). Votre alimentation de plan purée. Montreal, QC : APNED. Clinical Nutrition Services. (june 2014). Blenderized diet . Montreal, QC: McGill University Health Centre. Food and Nutrition Services. (2013). How to Thicken Liquids. Capital Health . Retrieved from http://www.cdha.nshealth.ca/patientinformation/nshealthnet/0562.pdf Jackson, F.J. (2011). Dysphagia Diet 5 Levels for Difficulty In Swallowing Diet. Jackson Siegelbaum Gastroenterology . Retrieved from http://gicare.com/diets/dysphagia-diet/ Hess, L. G., & Plowman, E. K. (2014). Safe Swallowing for PALS: What I Need to Know and Why it Matters. University of South Florida Health . Retrieved from http://nssrlab.org/wp- content/uploads/2014/07/Swallowing-Booklet-web-Word-2013-format_2.pdf McCarthy, J (Ed.). (2012). A manual for people living with ALS (7 th Ed). ALS society of Canada . Retrieved online from http://sla-quebec.ca/images/finder/files/PDFS%20AND%20 ATTACHMENTS%20%20Phil/ABOUT%20ALS/Resources/Manual/2012%20Manual%20Peo ple%20Living%20With%20ALS%20-%20ENGLISH%20Final.pdf Nestec (2011). Tips for managing life with dysphagia. Nestle Health Science . Retrieved from http://www.dysphagiaonline.com/en/pages/08_tips_for_managing_life _with _dysphagia.aspx Nutricia Nutilis. (2011). Tasty food. Safer food . Retrieved from http://dysphagia.ie/ uploads /documents/FINAL_Nutilis_recipe_book_printed_04.03.11.pdf Ordre Professionelle des diététiste du Québec (OPDQ). (2015). Manuel de Nutrition Clinique . Retrieved from http://opdq.org/mnc/regime-de-textures-adaptees-pour-les-troubles-de- la-deglutition/ Supermarche.ca (2013). Popotes roulantes . Retrieved from http://www.supermarches.ca /communautaire/pages/default.asp?cat=Popotes%20roulantes University of Pittsburgh Medical Center (UPMC). (2015). Thickened Liquids: Nectar-Thick . Retrieved from http://www.upmc.com/patients-visitors/education/nutrition/ pages/thickened-liquids-nectar-thick.aspx

Prepared for the ALS Society of Quebec by Christina Manganaro, Dt.P., dietitian-nutritionist 2015-04