What is dysphagia?

People living with dysphagia have difficulties with swallowing, which may impact their nutrition, hydration and ability to take certain medications.

Although we may take our ability to swallow for granted, it is a complicated and well-coordinated process involving many different body parts.

Interesting tidbit: Swallowing requires the concerted actions of many pairs of muscles and cranial nerves (nerves in the skull). Under normal circumstances we swallow about 500 to 2000 times daily (food, liquid and saliva).

When we eat, swallowing starts in the mouth, where food is chewed, and then moistened and softened with the addition of saliva.  Subsequently, food and/or liquids are moved to the back of the mouth towards the throat, and into the esophagus (food pipe).  They are then pushed down the esophagus, in a well-coordinated manner, into the stomach.  At the same time, our body prevents food from going to the wrong places: coming out our nose, going down our airway, or moving in the wrong direction (back up from the stomach).  

Diseases affecting the brain, nerves and muscles may impair the action or control of the swallowing process, causing food and/or liquids to get “stuck” or “misdirected” anywhere along the process, anywhere from the mouth to the esophagus.

Blockages, such as due to cancer, or narrowing of the esophagus, may also cause dysphagia, as the flow of food/liquids is restricted.

Your health care provider will review your medical history and the history of your symptoms, and perform a focused physical examination to help find the cause of your dysphagia.  You may be referred to a speech-language pathologist, who is a clinical expert in the diagnosis and treatment of dysphagia.  You may need a swallowing assessment, which is sometimes done with the help of x-rays and instruments to look at the structures involved. 

• Instrumental swallowing tests include those that involve x-rays, such as modified barium swallows / videofluoroscopic swallowing studies, or those that involve the use of an endoscope with a light and camera, such as flexible endoscopic evaluation of swallowing. 
• Each test has different strengths and weaknesses, and one or both may need to be used in different circumstances. 
• These tests can observe what happens when you swallow food and drinks, and how certain maneuvers affect your anatomy and physiology. 
• Results of these exams provide your speech-language pathologist a basis on which to recommend swallowing treatment and rehabilitation. 

Living with dysphagia

There are many strategies to ensure adequate nutrition and hydration despite swallowing difficulties.  Some of these include: strengthening muscles used for chewing and swallowing, ensuring proper positioning during eating, employing strategies to help facilitate swallowing and airway protection, and modifying diet textures to help optimize the safety and efficiency of swallowing.

Not all those living with dysphagia need diet alterations. For those who may benefit from diet alterations, many types of textures may be recommended, ranging from thin and thickened drinks, to foods that are pureed, minced and moist, soft and bite-sized, or regular texture. The choice of food texture for a person needs to be individualized, after careful assessments by a speech-language pathologist and/or a dietitian. Ideally, an alteration in diet consistency, particularly a change in liquid consistency, should be informed by a swallowing study. Long-term use of altered diets in the absence of appropriate follow-up can lead to malnutrition, dehydration, and loss of quality of life.

What are the nutritional needs for good bone health?

For postmenopausal women and men over 50 years old, Osteoporosis Canada recommends following Health Canada’s recommendation regarding adequate nutritional intake for good bone health.

Adapted from Table 2, Appendix 1, Osteoporosis Canada 2023 Guideline 

Source: Health Canada

• https://www.canada.ca/en/health-canada/services/food-nutrition/healthy-eating/dietary-reference-intakes/tables/reference-values-elements.html
• https://www.canada.ca/en/health-canada/services/food-nutrition/healthy-eating/dietary-reference-intakes/tables/reference-values-vitamins.html
• https://www.canada.ca/en/health-canada/services/food-nutrition/healthy-eating/dietary-reference-intakes/tables/reference-values-macronutrients.html

To determine the quantity of each nutrient in one serving of food or beverage, please consult with Osteoporosis Canada’s Nutrient Calculator.

For example:

	Calcium	Vitamin D	Protein	Magnesium	Vitamin K
Milk, skim (1 cup)	316 mg	2.6 μg = 104 IU	9.0 g	28 mg	0 μg
Soy beverage, fortified (1 cup)	319 mg	0.80 μg = 32 IU	4.2 g	31 mg	0 μg
Egg, large (1)	24 mg	0.81 μg = 32.4 IU	6.3 g	5 mg	0.12 μg
Yogurt beverage, with vitamin D added (200 mL)	168 mg	1.28 μg = 51.2 IU	5.26 g	17 mg	0 μg
Banana, medium (1)	6 mg	0 IU	1.0 g	32 mg	32 μg

People living with dysphagia may benefit from food and beverages of different textures, to improve swallowing efficiency, safety, or both.  However, nutrient-rich ingredients do not need to be compromised with these modified diets! 

Below are some suggestions of dietary calcium, vitamin D, protein, magnesium and vitamin K, as per different liquid and food textures.  Be aware that eating foods that are not recommended on one’s “dysphagia diet” may increase the risk of swallowing problems and aspiration.  Please consult with a speech-language pathologist and a dietitian to determine which liquid/food textures and food items may be most appropriate.

Food textures and drink thickness are described using standard terminology from the International Dysphagia Diet Standardisation Initiative (IDDSI).  This consists of a scale of 8 levels, ranging from level 0 (thin fluids), to level 7 (regular, easy to chew foods).  Foods and drinks are stratified by characteristics like particle size, moisture, stickiness, and softness.

Description of different textures of drinks and foods:

Thin fluids (IDDSI 0)	Flows like water Fast flow Can drink through any type of cup or straw as appropriate for age and skills
Slightly thick fluids (IDDSI 1)	Thicker than water  Requires a little more effort to drink than thin liquids Flows through a straw or syringe
Mildly thick fluids (IDDSI 2)	Flows off a spoon Sippable, pours quickly from a spoon, but slower than thin drinks Mild effort is required to drink this thickness through standard bore straw (standard bore straw = 5.3 mm diameter)
Moderately thick fluids or liquidised foods (IDDSI 3)	Can be drunk from a cup Moderate effort is required to suck through a standard bore or wide bore straw (wide bore straw = 6.9 mm) Cannot be piped, layered or molded on a plate because it will not retain its shape Cannot be eaten with a fork because it drips slowly in dollops through the prongs  Can be eaten with a spoon No oral processing or chewing required – can be swallowed directly Smooth texture with no ‘bits’ (lumps, fibers, bits of shell or skin, husk, particles of gristle or bone)
Extremely thick fluids or pureed foods (IDDSI 4)	Usually eaten with a spoon (a fork is possible) Cannot be drunk from a cup because it does not flow easily Cannot be sucked through a straw Does not require chewing Can be piped, layered or molded because it retains its shape, but should not require chewing if presented in this form Shows some very slow movement under gravity but cannot be poured Falls off spoon in a single spoonful when tilted and continues to hold shape on a plate No lumps Not sticky Liquid must not separate from solid
Minced & moist foods (IDDSI 5)	Can be eaten with a fork or spoon  Could be eaten with chopsticks in some cases, if the individual has very good hand control Can be scooped and shaped (e.g. into a ball shape) on a plate Soft and moist with no separate thin liquid Small lumps visible within the food (equal to or less than 4mm width and no longer than 15mm in length) Lumps are easy to squash with tongue82
Soft & bite-sized foods  (IDDSI 6)	Can be eaten with a fork, spoon or chopsticks Can be mashed/broken down with pressure from fork, spoon or chopsticks A knife is not required to cut this food, but may be used to help load a fork or spoon Soft, tender and moist throughout but with no separate thin liquid Chewing is required before swallowing ‘‘Bite-sized’ pieces as appropriate for size and oral processing skills (no longer than 15 mm)
Regular, easy to chew foods (IDDSI 7)	Normal, everyday foods of soft/tender textures that are developmentally and age appropriate Any method may be used to eat these foods Sample size is not restricted at Level 7, therefore, foods may be of a range of sizes Does not include: hard, tough, chewy, fibrous, stringy, crunchy, or crumbly bits, pips, seeds, fibrous parts of fruit, husks or bones May include ‘dual consistency’ or ‘mixed consistency’ foods and liquids if also safe for Level 0, and at clinician discretion. If unsafe for Level 0 Thin, liquid portion can be thickened to clinician’s recommended thickness level

Source: https://cms.iddsi.org/media/publications-iddsi/detaileddesriptions/english/V2DetailedDefnEnglish31july2019.pdf

Dietary sources of calcium, vitamin D, protein, magnesium and vitamin K, as per different textures.

	Calcium	Vitamin D	Protein	Magnesium	Vitamin K
Thin fluids (IDDSI 0)	Milk, fortified orange juice (with no pulp), fortified soy/almond/rice beverages	Milk, fortified orange juice (with no pulp), fortified soy/almond/rice beverages	Milk, soy beverages	Milk, soy beverages, orange juice, watermelon juice	Carrot juice, pomegranate juice, cherry juice
Slightly thick fluids (IDDSI 1)	Nutritional supplement, fortified orange juice (with no pulp), milk, fortified soy/almond/rice beverages	Fortified orange juice (with no pulp), milk, fortified soy/almond/rice beverages	Meal replacement beverages, milk, soy beverages	Milk, soy beverages	Fortified meal replacement beverages
Mildly thick fluids (IDDSI 2)	Full fat milk	Full fat milk	Full fat milk	Full fat milk
Note: Some smoothies, milkshakes, and yogurt drinks may be mildly thick and can be enjoyed without adding thickener.  Most liquids will need a thickener added, however.
Moderately thick fluids or liquidised foods (IDDSI 3)	Smooth yogurt	Smooth yogurt, egg custard	Smooth yogurt, egg custard	Smooth yogurt
Note: Thin fluids (IDDSI 0) can be thickened with thickening powders or gels. Using different amounts of thickening agents may result in fluids of different textures (IDDSI 1 to 4) Also, thickened fluids should remain thick at room temperature.  Some ice cream, sherbet, Jello and popsicles melt at room temperature, and may not be safe to consume for those restricted to thickened fluids.  If in doubt, the item should be tested at room temperature.
Extremely thick fluids or pureed foods (IDDSI 4)	Yogurt, kefir, cream soups, pudding	Yogurt, cream soups	Yogurt, kefir, pureed green peas, pureed meat/fish	Pureed bananas, pureed baked beans, pureed spinach, pureed avocado, soft silken tofu	Pureed leafy green vegetables (spinach kale, collard greens), pureed carrots, pureed kiwi, pureed pumpkin, pureed broccoli
Note: Most foods can be pureed and made into the right consistency by adding fluid (water, broth, milk, etc.).  Meats that are to be pureed should be cooked with moisture (boiled, poached, steamed or braised).
Minced & moist foods (IDDSI 5)	Cottage cheese, custard	Boiled/poached fatty fish, egg salad	Mashed green peas, mashed beans and legumes, hummus, finely ground meats served with sauce to further moisten and soften food, egg salad, mashed fish	Mashed bananas, hummus	Mashed blueberries, mashed bananas
Soft & bite-sized foods  (IDDSI 6)	Soft cheeses	Scrambled eggs, poached eggs, egg salad	Scrambled eggs, poached eggs, egg salad, tender meats, soft fish	Ripe bananas, soft tofu	Blueberries, ripe bananas
Regular, easy to chew foods (IDDSI 7)	Fortified tofu	Eggs, soft fatty fish, fortified tofu	Soft meats or fish, tofu, eggs	Tofu, bananas	Vegetables (spinach, kale, collard greens, carrots, broccoli, iceberg lettuce), fruits (bananas, blueberries, kiwi, pumpkin)
Note: Although there are no restrictions on the size of food particles for IDDSI 7, certain types of textures should be avoided.  These include foods that are hard, tough, chewy, sticky, fibrous, stringy, or foods that may contain crunchy or crumbly bits, pips or seeds, fibrous parts of fruit, husks or bones.

Note: Certain foods can fall into different IDDSI categories depending on their consistency/texture.  These may differ by brand for store-bought items.  Cooking methods (amount of moisture added, amount of time cooked, cooking style) may also affect the IDDSI level of foods. 

Supplements

Ideally, calcium, protein, magnesium and vitamin K requirements can be achieved through diet alone.  Consult with Osteoporosis Canada’s Nutrient Calculator to gauge the nutrient content in various foods.

However, when the recommended targets cannot be met from diet alone, supplementation may be helpful.

Calcium and Magnesium: 

Although calcium or magnesium supplements are mostly in pill form, liquid versions of these supplements are also available.  For those who cannot swallow thin liquids, thickening agents can be added to create the desired texture.

Vitamin D: 

A supplement of vitamin D is likely required, as natural and dietary sources will be inadequate.  In fact, Health Canada recommends that all adults over age 50 take a daily vitamin D supplement of 400 international units (IU) per day to help meet our vitamin D needs.

For those who are unable to swallow vitamin D pills, liquid vitamin D, or dissolvable vitamin D tablets may be options.  Given the concentration of liquid vitamin D, only a few drops would be needed.  These can be dropped directly into the mouth, or mixed with a spoonful of texture appropriate liquid or food.

Protein: 

There are a variety of protein supplements, from protein shakes to protein powders.  The thickness of these products differs by brand, and by the amount of liquid added to them.  Given the great variation in these classes of products, the appropriate choice of supplement should be reviewed with a speech language pathologist or a dietitian.

Vitamin K: 

Similar to vitamin D, supplements of vitamin K are available as pills or capsules, but also as drops or dissolvable tablets.

Which osteoporosis medications are safe for those living with dysphagia?

For those who, after careful consideration and discussion with their health care provider, need medication to help treat their osteoporosis, a medication family known as oral bisphosphonates is usually the first prescription medication treatment.  This involves a pill, usually taken once weekly.  However, this pill cannot be crushed and mixed with foods, as the pill has a special coating to optimize its absorption.

For those living with dysphagia, there is a chance that this pill may get stuck anywhere in between the mouth and the esophagus.  If this pill gets stuck in the esophagus, serious complications may occur, such as inflammation, irritation, or damage to the esophagus.  The pill may also be aspirated (get into the lungs), which may result in pulmonary complications. 

For those living with dysphagia who require medication to optimize their bone health, a non-pill option would be ideal.  There are several options including injection and infusion (intravenous or IV) medications.  Speak with your health care provider to determine which option may be best for you.

Although there may be many challenges and adaptations to daily routines, health does not need to be compromised for those living with dysphagia.  A balanced diet prepared appropriately can provide the adequate nutrients needed for bone health and overall wellness.  Contact speech-language pathologists and dietitians, or visit their websites, to learn more about dysphagia and treatment plans.

How can I access a Speech-Language Pathologist or a Dietitian?

• For some individuals, your first encounter with a speech-language pathologist or a dietitian may be in the hospital, when dysphagia is first diagnosed.
• More commonly, dysphagia is diagnosed in an outpatient office or clinic.  Your primary care provider can refer you to an outpatient speech-language pathologist or dietitian, but referrals are usually not necessary.  However, if you have a private health insurance plan, the insurance company may require a referral from your primary care provider, before reimbursements are provided.

• You can find a speech-language pathologist through Speech-Language & Audiology Canada’s website: https://member-membre.sac-oac.ca/search/custom.asp?id=7109
• You can find dietitians in private practice through Dietitians of Canada’s website: https://members.dietitians.ca/Web/Web/Membership/Directory/Find_a_Dietitian_Directory.aspx

Resources:

• Learn more about dysphagia:
  • Dysphagia: https://www.sac-oac.ca/wp-content/uploads/2024/06/Info-Sheet-Dysphagia-EN-Digital.pdf
  • The Role of Speech-Language Pathologists in Dysphagia: https://www.sac-oac.ca/wp-content/uploads/2023/02/dysphagia_position_statement_en.pdf
  • Swallowing problems (Dysphagia): https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Pages/brochure.aspx?itemid=564
• Learn more about different dysphagia diets:
  • Pureed Foods and Thickened Liquids: https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Pages/brochure.aspx?itemid=1454
  • Minced and Moist Foods: https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Pages/brochure.aspx?itemid=1488
  • Soft and Bite-Sized Foods: https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Pages/brochure.aspx?itemid=14
  • Easy to Chew Foods: https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Pages/brochure.aspx?itemid=15
  • Complete International Dysphagia Diet Standardisation Initiative (IDDSI) Framework: https://cms.iddsi.org/media/publications-iddsi/detaileddesriptions/english/V2DetailedDefnEnglish31july2019.pdf
• Speech-Language & Audiology Canada: https://www.sac-oac.ca/
• Dietitians of Canada: https://www.dietitians.ca/
• Osteoporosis Canada’s Nutrient Calculator: https://osteoporosis.ca/nutrient-calculator/

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Credit:

Adrienne Mak, Honours Bachelor of Arts (prospective Speech-Language Pathology student)

Kerry Grady, Senior Manager, Clinical & Education Programs, Osteoporosis Canada

Adrian Lau, Endocrinologist, Women’s College Hospital; Vice Chair, Scientific Advisory Council, Osteoporosis Canada

Reviewed by:

Jennifer Cameron-Turley, Interim Director of Speech-Language Pathology and Communication Health Assistants, Speech-Language & Audiology Canada

Deidre Burns, Clinical Dietitian in Inpatient Care & Dysphagia Management, Nova Scotia Health Authority

Wendy Ward, Chair, Nutrition Working Group, 2023 Osteoporosis Clinical Practice Guideline

COPN Review Committee (Joanna Sale, Laura Rothman, Teri Charrois, Zahra Bardai)

COPN Executive Committee (Jackie Herman, Tammy Clark)

(COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.)

Being diagnosed with osteoporosis can be a confusing and frightening time and it is important to know that you are not alone. It is also common for those with osteoporosis – as well as their support network – to be in denial of this “silent” disease as there are typically no symptoms until a bone is broken!

Many may question, “Why and how did this happen to me? How will this impact both my daily activities and my long-term health? What steps should I take to reduce my fracture risk? Can I improve my bone health? Will this impact my intimate life? How will I manage the pain of my fracture?”

Oftentimes, we have hit the wall, felt angry, depressed or experienced other feelings and not known where to turn for support. Be patient and give yourself time to learn about osteoporosis and how it will impact you. Individuals who have osteoporosis share their learnings and strategies and find Osteoporosis Canada resources to help you live your fullest life possible.

Your first priority is to take care of yourself! Identify who should be part of your healthcare team

Don’t let denial get in the way of looking after your health. Identifying your healthcare team is your first and most important step. Each person’s situation is unique and is based on many factors such as overall health, age, medical history, and lifestyle. There is much research and advances in osteoporosis treatments happening and by working with your healthcare team, you can learn and implement personalized approaches and treatments to help monitor and improve bone health, reduce the risk of fractures, exercise safely, and improve your well-being.

Reach out to your personal support network

Talking with those close to you about your situation can help you to overcome any anxiety or fear that you have. A support network is also important when you need practical help whether that be support with daily chores, shopping, lifting or moving objects. Since others can’t see that you have osteoporosis, it’s important to let them be aware of your diagnosis and to ask for help when needed.

Get educated and join a program and/or support group

Making a list of questions you have in advance of meeting with your healthcare team can often be helpful. Consider having a family member attend your appointments with you, which will help educate them while also being there to help document important information and instructions.

If you use the internet to research information about osteoporosis, take care that you are consuming credible and reliable evidence-based information as there is so much inaccurate and conflicting information about this disease. For reliable evidenced-based information and support take time to go through the Osteoporosis Canada site where you will find a wealth of resources including programs and support groups to help you in your journey.

Progress over Perfection

Depending on your personal circumstances you may need to modify your activities and hobbies. 

Take time to breathe and adjust to your new reality. Creating an action plan with small daily steps can add up to a lot of change.

Steps you might take could include:

• Realizing that chores do not need to be done all at once – pace yourself appropriately
• Educating yourself about osteoporosis and how to support bone health
• Modifying exercises and focusing on increasing balance and strength to reduce falls and fractures
• Reaching out for help from those close to you
• Keeping a journal or calendar to track your medication/s, progress, and actions so far
• Finding new hobbies and activities that align with your interests and capabilities

Advocate for yourself

Acknowledging and accepting that you have changed and that you have an increased risk of fracture is one of the most important steps you will take. From there, it is important to advocate for yourself – to get the support you need whether that be in the form of expanding your healthcare team or asking for help with daily activities. Remember that unless you share your situation with others, they will have no idea that you need help – so speak up!

Wherever you are on your personal journey, realize that you are not alone. Make an action plan and plot a course to take care of your health and well-being.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Osteoporosis is a common but often overlooked disease in men – a broken bone may be the first sign you have it. Often, osteoporosis in men can be secondary to an underlying cause, be it a pre-existing condition, lifestyle-related factors, or certain medications.

Men at Risk – Shocking Numbers That Demand Attention

According to Osteoporosis Canada, at least one in five men will break a bone as a result of osteoporosis. Men account for 25% of the 30,000 hip fractures caused by osteoporosis in Canada, and 33% of them will die within one year. Men are also less likely to receive any intervention after experiencing an osteoporotic fracture. A Canadian multi-centre study showed that 90% of men with fragility fractures remained undiagnosed and untreated for osteoporosis¹. According to Statistics Canada, of the patients that received osteoporosis management care, men were 3.6 times less likely to have a BMD test and 4 times less likely to receive osteoporosis treatment than women. Hip fractures that are associated with osteoporosis are known to be a sign of an increased risk of future fractures. Studies have shown that less than 25% of male patients received medication to prevent a future fracture after a hip fracture. In contrast, 80% of male patients received medication to prevent a future heart attack after an initial incident^2,3. 

“Men, far too many men, get osteoporosis too…. the fragility fractures I had been receiving were the most obvious but far too often missed warning of osteoporosis.”

– Larry Funnell, a man living with osteoporosis and COPN member

Important Considerations for Men Who Might Be at Risk of Osteoporosis:

1. Get assessed. It is not normal to have a fragility fracture, to break a bone from a minor fall or standing height.

Who should be assessed for osteoporosis and fracture risk?

• Men (and women) taking certain kinds of medication(s) that may increase bone loss and/or fall risk. For instance, the long-term use of glucocorticoids can interfere with bone formation. Glucocorticoids are used to treat various medical conditions such as rheumatoid arthritis, COPD, and asthma, among others;
• Canadians 70 and older are considered to be at increased risk of osteoporosis or fractures;
• Canadians under the age of 70 who have already experienced a fragility fracture or who have additional risk factors for fracture;
• Men who have hypogonadism (low levels of testosterone that lead to low bone mass);
• Men being treated with androgen deprivation therapy for prostate cancer. This therapy can accelerate bone loss to a rate similar to that of menopausal women. Androgens are essential for developing and maintaining bone mass;
• Men (and women) whose lifestyle habits (such as the high daily consumption of alcohol) negatively impact their bone health. Research shows an increased risk of osteoporosis for those who regularly consume 3 or more alcoholic drinks per day. Increased alcohol intake also contributes to an increased risk for falls and is often associated with poor nutrition.

2. Educate yourself about osteoporosis. Osteoporosis Canada’s website, National E-Newsletter and the COPN “Unbreakable” E-Newsletter provides timely, science-based information on how to live well with Osteoporosis – including treatment, nutrition, exercise, support and much more.

• Talk with your healthcare provider to determine your risk of osteoporosis.
• Speak with your pharmacist about any possible contraindications of medications you are taking that may affect your bone health.
• Have a conversation with your physiotherapist and/or occupational therapist about fall prevention, strengthening, how to safely move your body, safe lifting etc.
• Learn to exercise safely. Keeping fit is important to maintaining and supporting bone health

3. Communicate openly. Talk to those around you about osteoporosis

• Ask for help when you need it to prevent placing unnecessary stress on your bones. You may not “look” like you need help, but few will refuse when you say something like, “Excuse me, would you be able to lend me a hand?”
• Most of us want to help others, but when you are asked to help, consider doing so without the heavy lifting. You might say, “I would love to help you, but I am unable to do the lifting. Let me find someone who can.” Openly sharing your knowledge of osteoporosis will help reduce the stigma men living with this disease may feel and could open the door to help others who may be at risk.

Communicating openly gives you the opportunity to talk about osteoporosis so you can help others gain a better understanding of this disease.

4. Seek treatment.

• Bisphosphonates and denosumab have been shown to reduce the risk of vertebral fractures in men.
• There is no evidence that testosterone reduces fractures in men.
• If your doctor has recommended medication for osteoporosis, talk to them or your pharmacist to find the best option for you. 

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

References:

1. Papaioannou, A., Kennedy, C. C., Ioannidis, G., Gao, Y., Sawka, A. M., Goltzman, D., Tenenhouse, A., Pickard, L., Olszynski, W. P., Davison, K. S., Kaiser, S., Josse, R. G., Kreiger, N., Hanley, D. A., Prior, J. C., Brown, J. P., Anastassiades, T., Adachi, J. D., & CaMos Research Group (2008). The osteoporosis care gap in men with fragility fractures: the Canadian Multicentre Osteoporosis Study. Osteoporosis international : a journal established as result of cooperation between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA, 19(4), 581–587. https://doi.org/10.1007/s00198-007-0483-0

2. X. Canada PHA of. Government of Canada [Internet]. / Gouvernement du Canada; 2022 [cited 2023 Jun 15]. Available from: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/osteoporosis-related-fractures-2020.html

3. Y. Austin PC, Tu JV, Ko DT, Alter DA. Factors associated with the use of evidence-based therapies after discharge among elderly patients with myocardial infarction. Cmaj. 2008 Oct 21;179(9):901-8.

Credit to: Dalton Budram MD, BSc (PGY-1 Internal Medicine, UofT).

COPN – the Canadian Osteoporosis Patient Network (COPN) exists today due to the dedication and perseverance of four pioneering women: Sheila Brien, Priscilla Coles, Ina Inse and Gail LeMieux.

Since 2004, this community has been a strong voice for Canadians impacted by osteoporosis, advocating for improved care and offering essential support and reliable information. Thank you to all of our members, both past and present, who have shared their time, energy and lived experience with us. We cordially invite you to join us in commemorating COPN’s 20th anniversary.

In the early 80s, support for osteoporosis patients was frail – there were no medications, limited information and few, if any support groups for patients. It is during this time that a few women patients from St. Michael’s Hospital in Toronto came together to create a support group which eventually formalized to become Women and Osteoporosis.

In April 1998, the group realized that they had synergies with Osteoporosis Canada which operated nationally. So, Women and Osteoporosis joined forces with Osteoporosis Canada.

In 2002, Priscilla Coles, a volunteer for Osteoporosis Canada, had an epiphany. She realized that patients needed more say in their treatment and met with other founding partners, Sheila Brien, Gail LeMieux and Ina Inse, to discuss how patients could unite with a national voice to have more of a say in their treatment. These women had all suffered fractures and understood first-hand how osteoporosis could create life changing situations, loneliness and frustration from a lack of information and resources. Their spark was lit – and united, these women set out to create a community and make a difference for others with osteoporosis. They did not want anyone, regardless of their geographic location, to feel ALONE.

As volunteers and speakers, they started in Toronto, and then, reached out to others in smaller communities to provide support. Their mandate was to share experiences and provide patient insight, influence decision makers and provide the patient perspective. A patient focus and a patient voice became their driving force.

In 2004, The Canadian Osteoporosis Patient Network (COPN) was sanctioned as the patient arm of Osteoporosis Canada by the Board. With the support of OC, a dedicated web page for COPN and a patient newsletter was launched providing more support to patients and caregivers, eventually creating a virtual community across Canada.

In the early days, while budgets were slim, COPN focused on distributing information to support groups, doctors, and hospitals. As well, COPN hosted seminars recruiting members at these meetings and increasing membership through word of mouth. By 2009, COPN was 1900 members strong. While their milestones are many, one very important milestone COPN achieved was working with the University of Waterloo’s Kinesiology Department to publish a series of exercises called Too Fit to Fracture – this was a landmark resource available to help those who had recently fractured.

This year, COPN is celebrating its 20^th anniversary!

COPN remains committed to:

• Leading with our patient voice
• Connecting those affected by osteoporosis with evidence-based information and resources
• Advocating for improvements in osteoporosis care
• Supporting and inspiring those living with this disease

From 2004 through 2024, COPN continues to be true to our founders’ vision:

All Canadians affected by osteoporosis live well and live safely.

Priscilla, Gail, Ina, Sheila 2004 COPN Founders

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Our family and friends can form a valuable support team for us as we work through the challenges of living life with osteoporosis. They can be both cheerleaders and caregivers who provide us with encouragement and assistance when we need it. 

In this article, we will explore practical strategies you can use to help build and educate a personal support network you can rely on. Your network – the people you spend most of your time with every day – may not have a good understanding of what osteoporosis is and how it impacts your daily life and activities. We’ve been in this position, and we are here to help by sharing ideas about how to talk to your family and friends (as well as acquaintances) about your osteoporosis and how to ask for support when you need it.

Why is this important? Living with osteoporosis is an emotional and physical journey that lasts a lifetime, so it’s important to have a support team that you can rely on and feel comfortable talking with during your journey. 

10 strategies to help your support network learn the about osteoporosis:

There are many ways your support team can learn about osteoporosis. Some may prefer to read reliable information, while others would rather talk with you, listen to podcasts, watch webinars or participate in your appointments. Sometimes, a member of your team may not understand how serious osteoporosis really is. Education is the key. Here are some ideas to help you begin to build their knowledge base and get support.

1. Share articles from the Osteoporosis Canada website where you’ll find important evidence-based articles about this disease such as:

• What is osteoporosis? What is it not?

• Risks or limits for those with osteoporosis

• Facts and stats on osteoporosis

2. Invite someone from your team to join you at your next healthcare appointment to learn more about your treatment and specific needs. Encourage them to ask questions. Don’t forget that the professionals on your healthcare team are also part of your larger support team. These healthcare professionals may include your doctor, pharmacist, physiotherapist, dietician and/or other specialists who support you.

3. Listen to a webinar or podcast together that discusses osteoporosis and some of the important lifestyle changes that you may want to make to help you avoid fractures.

4. Print reliable resources about osteoporosis and share them with team members who prefer to read the information.

5. Invite them to join you in the exercises you are doing to improve your bone health and prevent fractures. This is an excellent opportunity to discuss how osteoporosis affects you and what you need to do to keep safe.

6. Cook together and discuss the importance of a nutrient rich diet for bone health. Join an online cooking webinar with Osteoporosis Canada and view their many recipes online.

7. Teach your family and friends about your diet, exercise, precautions, and routines. While they may not have osteoporosis, you can help them support their bones by paying attention to their own health. Discuss the importance of exercising to create strong muscles, improve bone density as well as balance to prevent falls. Also, help them learn about the importance of calcium and vitamin D to maintaining healthy strong bones.

8. Let them know that managing your osteoporosis is important for your physical and mental well being. Tell them how much it means to you to have them there to talk to and learn how this disease impacts you.

9. Share what you are working on to live well with osteoporosis. This might include exercises to improve your bone strength and balance, a well-rounded diet, and changing how you do daily activities to lower fracture risk.  

10. Ask them to help you create an “elevator pitch” to briefly summarize what osteoporosis is and how it affects you. This might be helpful if you are in a situation where you need to avoid an activity that puts you at risk of a fracture or have to ask for help. For example, you could say,  “I have osteoporosis – my bones can break if I  ____________ . Will you help me? You could use this “pitch” when you are at the airport and need assistance lifting your luggage from the carousel or are at home and need someone to get the turkey out of the oven.

Let family and friends know how they can help you:

Tell the people on your care team exactly how they can support you. Some examples include: getting grocery bags in and out of the car, ensuring meals are rich in calcium, shovelling snow/salting outside in the winter, removing tripping hazards (such as area rugs) from the floor, installing grab bars in the bathroom or railings in all stairwells. 

Support can also involve talking and providing emotional support when you need it. We understand that talking with family members and friends about osteoporosis isn’t always easy. These practical suggestions can help you  open the door to conversations about living with this disease and build a support network around you that you can count on. Be sure to visit the Osteoporosis Canada website, where you will find a wealth of evidence-based articles, podcasts and tools that you can share with your family and friends such as:

• OC Blog https://osteoporosis.ca/news/oc-blog/
• Unbreakable the OC Podcast https://osteoporosis.ca/oc-podcast/#podcast-episodes

We invite you to forward and share this article with your support network or anyone that you think would benefit from this information. Join our community by subscribing to this e-newsletter and learn more about the resources available from Osteoporosis Canada.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Living with osteoporosis is a unique journey for each of us. For those with mild osteoporosis there may be little impact on how you live – while for others with more severe osteoporosis, it may require us to modify daily activities.

Whatever our fracture risk, it is important that we take care of our health and well being. Having osteoporosis may require us to think in different and creative ways about how we do our daily activities- this is part of our journey.

1. Be kind to yourself

Living with osteoporosis may bring unique physical and emotional challenges, so it is important to be kind to yourself. Practicing self compassion will help you move forward on your journey. Remember to:

• Take things one day at a time and recognize that you are doing your best.
• Celebrate the little things you accomplish throughout the day by doing something you enjoy.  
• Take time for self-care activities like exercise, nutrition, and good sleep.  

2. Focus on your mental well-being

Mental well-being means empowering yourself to be your best by keeping engaged, enjoying activities you care about and maybe even finding new ways to enrich your life. There are various aspects to your well-being including: 

• Mental health – This includes your emotional, psychological, and social well-being. Having good mental health enables you to better cope with stress and learn and work well. Nurture your mental health by being socially connected, challenging yourself intellectually, getting involved in activities that are meaningful to you, and sharing your concerns with your medical practitioner.  
• Social engagement – Being social helps you build meaningful relationships with others and your community. Engaging in social activities can help you develop a sense of purpose and belonging.
• Emotional well-being – This involves managing your emotions to gain control, minimize difficulties, and reduce stress. Ways to help you regulate your emotions include breathing deeply, taking a walk, meditation, and exercise. 

3. Protect your energy levels

It can be challenging to thrive when you are feeling tired, exhausted, and/or overwhelmed. Lacking energy understandably has an impact on your daily activities. Here are some ways to help you manage, boost, and protect your energy levels:

• Balanced nutrition – Eat a well-balanced diet that provides essential nutrients for energy production in your body. Think fruits and vegetables, whole grains, lean proteins, healthy fats and foods with bone building nutrients including milk products and fortified alternatives. Consider having your groceries delivered or ask a friend or family member to help, as they can be heavy to carry and drain your energy. 
• Adequate rest – Try to have a regular sleep routine in an environment you find comfortable. If you are having trouble sleeping, try some gentle stretches before bedtime. 
• Energy conservation – Pace yourself when going about your day, take rest breaks, ask for help, prioritize your tasks and give yourself permission to leave some tasks for another day. Alternate easy tasks with more difficult tasks and save the most challenging tasks for when you know you will have more energy. Take larger tasks and break them up into smaller ones – don’t do them all at the same time. Position yourself in a comfortable and safe way when performing your tasks. Keep objects in cupboards within an easy reach. 
  
  

4. Protect your physical health

As those of us with osteoporosis know, physical health is important to maintaining healthy bones and preventing future fractures. No matter what your capabilities are, consider these important factors:

• Regular physical activity – Any activity is better than none, including low-impact exercises like walking, swimming, tai chi, or gentle yoga. Please check with an osteoporosis trained health professional to ensure you are moving safely during your exercises. 
• Preventive care – This includes routine self care activities such as regular exercise, nutrition and good sleep. This also includes avoiding smoking and limiting alcohol consumption. Attending regular appointments with your healthcare practitioner for health screenings and addressing any new issues is also important.
• Safety and independence – Avoid physical activities that put you at risk for a fracture such as lifting heavy objects or walking on slippery surfaces. Continue to do osteoporosis safe exercises for increased strength and balance which further reduces your risk of falls and fractures. You can create a safe environment at home that minimizes the risk of falls. For example, wear proper footwear, install grab bars in the shower, remove slippery area rugs, and use a grabber to pick things up.  Don’t hesitate to ask for help when needed.  
• Pain management – Especially while recovering from a fracture, reducing your discomfort through things like medications, assistive devices, and physical therapy can be helpful. 

Remember: You are more than your diagnosis!

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Special Credit to: Cristian Garcia, MSc, MD Candidate.

Sleeping well is vital for our overall health and well-being. The Public Health Agency of Canada recommends adults get 7 to 9 hours of sleep, however, getting quality sleep as we age can be harder due to medications and health issues. Quality sleep is just as important as regular exercise and a healthy diet. 

Osteoporosis can affect the quality and quantity of our sleep. Sleeping positions that used to be comfortable may now cause us discomfort or not give us adequate support. We may find ourselves tossing and turning or worried if some sleep positions are causing us harm.  Thankfully, there are ways to improve our sleep positions that provide support for our bodies and improve the quality of our sleep. 

What sleeping positions are best for your body? 

Spine alignment in a “neutral” position without putting any strain on your other joints is the key. A “neutral spine” is when the head is positioned so that the ear is over the shoulder and the shoulder is in line with the hip joint. Use this posture when you’re sitting, standing, or lying down too. Whether you are a side, back or stomach sleeper, your goal should be to stay in this neutral position as it lengthens your spine and protects its natural alignment.

The fetal position (curling up) may be your favourite way to sleep, but it can cause strain on the back of your neck and make the spine curve forward which also strains your vertebrae. If this is one of your favourite sleeping positions, gently and gradually practice elongating your spine into a “neutral” position. If you are a daytime napper, think about what position your body is in, especially your head and neck. Is your spine in a neutral position? The same applies to napping, whether you are sleeping in bed, on a chair, on a sofa or in the car. Change takes time; be patient with yourself and listen to your body. 

How do I choose a mattress to support my osteoporosis? 

If you live with osteoporosis, an ideal mattress would be one that provides you with good spinal support in a neutral spine alignment without causing pressure on your joints.  The “best” mattress is debatable and each person should test a mattress before buying.

Medium-firm mattresses may help with lower back pain, and be easier to shift around in. A firm mattress may cause discomfort for some at the hips and shoulders. Innerspring (coil spring) and memory foam (all-foam) are the most common and affordable mattresses. Foam mattresses “cradle” the body more, adapt to body temperatures, and if too soft, may make it challenging to shift around in.

A restless sleeper may benefit from an innerspring mattress to allow movement without disturbing their partner. Consider the bed’s assembled height as it may be a risk if the bed is too high or too low. Your feet should be able to rest on the floor while sitting on the bed to avoid sliding off.  Think about your room size and space on both sides of the bed to safely get in and out of the bed.

What pillow is best for osteoporosis? 

The purpose of a pillow is to keep your head and neck aligned in a neutral position while you sleep. The first step in choosing a pillow is to determine your dominant sleep position – the position you usually fall asleep in. 

Back sleeper: Choose a pillow that cradles the head and supports the natural curve of the neck. Place another one under the knees to flex the knees and relieve spine tension.

Stomach sleeper: Choose a thin, “scrunchable” pillow since your face is very close to the mattress. Keep in mind that in this position, the head is turned to the side most of the night adding strain to your neck and spine. 

Other things to consider when buying a pillow are:

• Test the firmness of pillows by using the squeeze test – the harder you have to squeeze to flatten it, the firmer it is;
• Consider hypoallergenic pillows and check the breathability and heat retention of the materials if you have allergies. 
• Purchase a pillow with a good-quality cover, and if in doubt, consider buying a pillow protector that can be washed. 

Overall, the best pillow for you fills the space between your shoulder and head so they are neutral.    

“Comfort is very subjective, but when the head and neck are aligned in its best neutral position and is well-supported for sleep, you will awake more refreshed.”

– Sharron Steeves, retired physiotherapist

Where should you go to receive more advice from a professional?

You and your doctor can discuss your needs and options. Often a physiotherapist or occupational therapist can assist you by assessing your ideal neutral spine alignment for sleeping.  

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Osteoporosis can have a significant impact on our physical and emotional well-being including how broken bones and the diagnosis of osteoporosis can affect our sexuality and intimacy.

Sexuality can be about how you identify sexually and who you are physically, emotionally, and spiritually attracted to. Being sexual can be more than having sex, and can include touching, kissing, flirting as well as having sex.

Intimacy can be emotional and/or physical, may or may not include sex and can be about feelings of closeness, emotional connections and feeling supported in a personal relationship.

Two people can be very intimate and involved in a social and emotional context (e.g. best friends) yet never sexual with each other. However, two people can be very sexually involved but never intimate with each other. Many relationships are both sexual and intimate.

Communication is key:

When one partner is affected with osteoporosis, it impacts both partners in a relationship physically and emotionally. Good communication with your partner is essential; it should be honest and ongoing and include personal beliefs, fears, expectations, and the relationship as a whole. It will ease and support a transition to a new type of sexuality. A technique or a position may not be acceptable to both partners, as some positions may put too much pressure on the partner’s osteoporotic bones. These intimate details, unique to each couple, need to be discussed before adaptations can be made with respect to pain and fracture risk.

Important details to discuss with your partner include:

• Fears: Fear can act as a barrier to intimacy and sexual activity. Partners may have fear around rejection of intimacy. Many people fear rejection from a partner who perceives or experiences a decline in affection or intimacy. You may also fear getting hurt or hurting your partner with certain positions. There is also the fear of performance failure due to medications, depression, anxiety, and other factors.
  • Your partner may have the same fear as you. It is good to share your thoughts and feelings so that both you and your partner can help each other navigate these fears.

• Self-image: Living with osteoporosis can make us feel less attractive and less confident in our bodies. We may not want to be intimate with our partner if we are not comfortable in our own skin.
  • You may be both surprised and delighted to find that your partner still finds you as sexy as ever and looks forward to the increased intimacy that overcoming these challenges together will bring.

• Pain: The severity of osteoporosis, fractures, aches, and poor mobility can impact your sexuality and/or intimacy.
  • Be creative, use any safe additional support that might help and go beyond intercourse.
  • Find positions that are safe and more comfortable for everyone involved depending on the severity of the osteoporosis and the fracture risk – avoid putting too much pressure on osteoporotic bones.

Talk about your fears and concerns with your partner. Recognize that there has been a change and move towards realistically accepting these changes in your life.

For example, what is interfering with your intimate or sexual activity? Then share your thoughts. It is important to talk about what you miss. Talk about what your needs were before your diagnosis, and how these needs may have changed. Talk about what you and your partner can still hope to get out of the relationship. Find out how your partner feels about the changes in your body.

Remember that sexuality and intimacy are not just about having sex. There are many other satisfying ways to be both sexual and intimate. You may need to do some problem-solving to identify these other ways. You may also consider talking to a healthcare professional to help you navigate intimacy and sex with osteoporosis. Often just holding, massaging, kissing, or caressing can be pleasurable and create a feeling of intimacy. Many of us believe that good, passionate sex must be spontaneous, but many experts advise that planned sex is just as rewarding. Planning is often essential for people living with chronic pain or experiencing fatigue that may result from the pain. Consider the time of day when you are most likely to feel energized and the time when your medications may be providing the best pain relief. Make this journey of discovery part of the fun.

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.

Support groups, one of the online programs offered by Osteoporosis Canada, are all about connection. They connect people who not only live with osteoporosis but want to live well with osteoporosis. Each monthly meeting is another opportunity to share knowledge and concerns, to encourage each other — and to just plain spend time with people who know what you’re talking about, because they are in the same situation.

Feedback describes how powerful group participation can be:

• “It’s wonderful to connect with people who share the same experience.”
• “I feel privileged to take part in a group. This is a lonely disease if you don’t have a support system.”
• “I feel so much more confident now, armed with the knowledge, support and friendship I’ve been given over the past year.”

The Basics

OC’s support groups are managed by Sandy Owczar and Cathy Pearcy, the organization’s two Managers of Community Engagement. Though all groups meet virtually rather than physically, they are with two exceptions broken into regional categories. “This allows discussion in each group to be specific to its own context,” explains Cathy. She adds that the two non-regional categories — Under 40, and Men With Osteoporosis — are also context-specific. “Men face some different issues than women do, often work-related, and people under 40 are also in different circumstances because they are still in the child-rearing and career-building stage of life.”

Each group holds a one-hour meeting every month, via Zoom. A few groups are coordinator-led; most are facilitated by a trained volunteer who either has osteoporosis or has a close connection. Membership is free, and people may remain part of a group as long as they wish.

How to Join – and When

How to join is straightforward. Click the support-groups link shown below; click the appropriate category; and fill in the pop-up email addressed to one of the Managers. Include some basics about your location, circumstances, and diagnosis, both what it is and when your diagnosis was received.

When to join a support group is not as obvious as how. The Managers want to know about your diagnosis, because that information tells them where you are on your journey with osteoporosis. Says Sandy, “That helps us suggest which OC resources will be most useful for you right now.”

Brand-new diagnosis? Call the OC telephone support line; register for any or all of the online webinars (Bone Health 101; Osteoporosis and You; Living Well With Osteoporosis).

Once you’re past that first shock, once you have acquired some information and you feel ready to explore how to live well with the disease — this is the time to consider a support group. Members themselves decide what topics to discuss and are free to participate as much, or as little, as they wish.

It’s your personal journey, but you might like some companionship along the way.

Support groups: https://osteoporosis.ca/support-groups/

Other online programs: https://osteoporosis.ca/programs/

Telephone support: 1-800-463-6842 (Canada only)

Reaching Out: A Support Group Story

After my diagnosis, I felt angry, scared, and overwhelmed. I had just moved to a small, rural community while the pandemic was in full swing and was feeling lonely and isolated. At my doctor’s suggestion, I went to the Osteoporosis Canada (OC) website to learn more about this disease. I discovered so many new things but had lots of questions.

One day, as I was checking out the OC website, I found the “Get Involved” section on OC’s homepage. I moved my cursor over it and spotted, “Get Support” and “Support Groups” in the drop-down menu. I clicked on “Support Groups”, read the description, and knew right away that I had found what I was looking for: a way to connect with others who had osteoporosis while keeping myself safe during the pandemic. I clicked on the group in my area and sent a short email to the address that was provided. I had a very friendly and quick reply from the group’s manager and attended my first virtual osteoporosis support group meeting shortly thereafter. It has been 16 months and I’m still there!

I was a bit nervous about attending my first meeting, especially because it was on Zoom, and I’d hardly ever used this platform before. But the welcoming and supportive group helped me learn the basics of Zoom. They made it easy. I listened closely as people shared their thoughts and experiences.  Some group members had faced multiple fractures, and some were still recovering from them. Others, like myself, were fortunate enough not to have had any fractures (my fingers are still crossed). I was glued to their every word, hoping to figure out how to avoid having a fracture or what to do if I did.

A lot of learning has happened since then and I’m still “glued” to their every word. Sometimes, I even share my own bits of what works for me. Here are some helpful things I’ve learned from my support group:

• Change can happen over time. Changing too many things at once can feel overwhelming.
• Scatter exercises throughout the day, doing bits at a time. You can even do some balance or strength training while you are brushing your teeth or waiting for the kettle to boil!
• Sitting is really hard on the spine. Find ways to get up and move around every 30 minutes.
• Give your spine “time off” in the day. Lay on your back on your bed (or the floor) for 10-20 minutes.
• Use walking poles to help you get the weight-bearing and cardiovascular exercise you need without putting too much pressure on your joints.

You don’t have to be alone with this disease. You can reach out and get connected with others who understand what you are going through. You can join one of Osteoporosis Canada’s support groups today!

Warmly,

Jackie Herman

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Credit: COPN, the Canadian Osteoporosis Patient Network is the patient arm of Osteoporosis Canada, a national network of people living with osteoporosis.