ACCESS Health Volume One, Issue One Spring/Summer 2009 Welcome to ACCESS Health Welcome to ACCESS Health - a quarterly newsletter brought to you by CILT’s Peer Support Program. We hope to bring you current and pertinent news, tips and resources pertaining to health issues. As many of us know, living with a disability can be challenging, but as the years go by, and our bodies start to change, facing new challenges brought upon us by the aging process can be, at times, a harsh reality. Everyone, whether or not they have a disability, has to face the aging process. However, when one already has a disability, the aging process can present changes in our bodies that we haven’t been used to in the past, creating even more difficulties including increased pain, fatigue, muscle and joint stiffness, weight gain, infection, etc. All of these, coupled with our already existing disability, can make everyday life seem, at times, almost unbearable. The topic of Aging and Disability seems to present an unfamiliar front to researchers. For instance, when one googles “aging and disability”, much of the existing research discusses disability as a result of the aging process—for instance, arthritis, rheumatism, dementia, etc.rather than on the challenges one faces in the aging process as someone with a pre-existing disability. This is what we hope to do in this newsletter. If there are any topics that you would like us to address, we want to hear from you. We feel that our time would be much better spent on addressing issues that are of concern to you, as adults living with disabilities, facing the aging process. Please feel free to contact us at (416) 599-2458, extension 227, by TTY at (416) 599-5077 or by email to peers@cilt.ca.In the meantime, we hope you will enjoy reading about some of the topics we have chosen to address in this issue. Aging With a Disability: Knowledge and Information is POWER In the past getting older was a not an issues for people with disabilities. In the past, we didn’t age, we just died! We are the first generation to live this long, so the question is not will we live, but how well will we live? So now, people with disabilities are asking questions about the quality of our living and the quality of our aging. It is important that we keep ourselves as informed as possible on wellness, self care, health care, exercise, advocacy and aging with a disability. There are many people who live with disability long-term, and long-term can be five to thirty or more years post onset, who are experiencing changes in function and experiencing new or more significant secondary disabilities as they age. Secondary conditions are those that occur because of the pressures of the primary disability and may include, as stated earlier, pain, fatigue, changes in skills or physical conditions, fractures, pressure sores, etc. Some of these changes may be part of the typical aging process but these changes may occur at earlier ages for people with disabilities than for people without disabilities. Those of us who have lived with disability long-term are now experiencing signs of aging that combine elements of aging with conditions unique to living with a disability. The process of aging not only relates to chronological age but also to duration of time spent living with disability. Depending on one’s lifestyle, genetic heritage and type of disability, living long-term with a disability produces wear and tear on muscles, skeletal and other body systems. Changes in energy and activity levels have been found to be directly related to type of disability and age. Heavy use or overuse of certain body parts to compensate for lost motor ability in other parts of the body can lead to problems over time. As people with disabilities age, the physical penalty increases. Many people with disabilities considered their disabilities to be static. A new or increased level of disability or a new or more significant secondary condition(s) was not anticipated. Believe it or not, researchers are currently working on defining the issues that people with disabilities are forced to face in the aging process, and trying to come up with some sort of prototype of what we can do to ease the effects of the aging process on our “already disabled” bodies. But what do we, as people with disabilities, do while researchers define what these issues are, engage in pain staking slow, detailed studies, confirming or unconfirming the voluminous clinical and anecdotal information that already exists related to aging with disability? What do we do while we wait for the dissemination gap to be filled? We all know that research takes years to perfect, and we may not even have access to this research until years after this generation has passed on. For people with disabilities, as for everyone, the clock is ticking, life is short, and there is an urgent need for information now! We want to be able to anticipate the type, severity and course of age-associated changes that are likely to occur as we reach middle age and older age. We want to know: what to expect, what preventative steps can be taken to ease the effects of aging on disability, how to translate living longer into living better and actively, how to prevent losing our achieved independence, and what to do to delay new conditions and increasing disability. In other words, how do we: mitigate risk factors (including effective use of assistive technology), access resources that will offer knowledgeable review, assessment and intervention, and find options and choices regarding fitness, physical, social and financial options. Throughout upcoming issues, we will try to bring you as many resources as possible that will help you cope with the aging process as easily as possible. Remember, knowledge is POWER. The more informed we become, the better choices we will make for an improved and more comfortable life. Controlling Diabetes in Mid Life By Janet Smith, April 2009; www.disabled-world.com/fitness_diets/special For some, changing your diet can be one of the most difficult processes you will face while controlling diabetes. The good new is there is not one specific type of diabetes diet. You have a variety of ways to practice healthy diabetic eating and still enjoy the food you eat. Being committed to healthier eating and controlling your blood sugar begins in your mind. Just like the old saying goes, "If you think you can, you can. If you think you can't, you can't. There is much truth to that statement. You must make up your mind to take control. If you don't take control of your diabetes the consequences could be brutal and even life threatening. For me, just thinking about the complications caused by poor diabetes control is enough to motivate me to choose healthy nutrition for diabetes. Blindness, heart disease, kidney failure, and amputations are all primary complications of diabetes. The sad part is that if a person just makes the conscious decision to eat a healthy diet and get regular exercise, the number of these complications could be drastically reduced. Avoiding these horrible complications takes daily management...not just an occasional thought of diabetes control. Eating to control your diabetes rewards you with a much healthier body, and thus allows you to live your life as you choose rather than as your diabetes and health allows. Understanding Healthy Food Choices Eating a health diet for diabetes doesn't require a specific type diabetes diet. Today there is not one set diabetic diet. You'll find more than one way to control your food intake to help you control your diabetes. Eating healthy for diabetes involves portion control, and balancing your intake of each of the three main food categories, carbohydrates, fats, and proteins. Of the three main food categories, carbohydrates, fats, and proteins, carbohydrates have the most impact on your blood sugar levels. Good nutrition for diabetes begins with a basic understanding of how what you are eating affects your diabetes and your blood sugar ranges. Balancing food with your activity levels and your diabetes medications or insulin will help you get your blood sugars closer to a normal range blood sugar. Of the three main food categories, carbohydrates, fats, and proteins, carbohydrates have the most impact on your blood sugar levels. In general eating no more than 45 to 60 carbohydrates per meal is recommended. Try to stay away from processed foods and refined carbohydrates. These foods don't contain the same vital phytonutrients as fresh fruits and vegetables. Processed foods and refined carbohydrates can also cause a spike in blood sugars, making them more difficult to control. Portion control is vital to healthy eating for diabetes. Watching serving size and not overeating will help to control blood sugar as well as help to manage weight. Men and Disabilities http://www.paralysis.org/Health/HealthList, Health: Sexuality for Men, 2004 HPPD RESOURCE GUIDE Men and Disabilities10/27/2005 Men with disabilities face the same challenges as women in terms of maintaining good overall health so they do not develop secondary conditions or further disability. It’s also important to understand that men can also feel depressed and lose self assurance and confidence and may be less likely to reach out for help when their image of their bodies changes due to a disease- or injury-related disability. Although “society has become more egalitarian, intrinsic to human nature is the desire to judge, evaluate, and compare ourselves to others. Appearance, good looks and fitness are now the measure of one’s social worth. How closely we can approximate a perfect body has also unfortunately become a sign of how well we’re doing in life.” With this in mind, it’s imperative that health care promotion and programs target men with disabilities so that they can enjoy a high quality of life in terms of health, their relationships and feelings of control and power over their lives. Encouraging men to become involved in physical activities and maintain good health habits will go a long way toward increasing enjoyment of life and decreasing feelings of isolation and powerlessness. Participating in physical activity, whether on a team, with one or two other people or even by themselves can not only increase strength, but these activities can also help men with disabilities feel accepted and less isolated, as well as work off feelings of aggression. In addition, even a little physical activity raises endorphins, which can help ward off depression. “Feeling hopeless and helpless are part of [depression]…When people educate themselves and take proactive and deliberate steps to get help, including self help, the probability of overcoming depression is high.”2 One way to overcome these feelings is to be involved in activities with other individuals who share some of the same experiences. Since many men have a tendency not to talk about their feelings and to reach out for help with problems, health care professionals must be aware that a man with a disability may be hiding feelings about himself or his situation that could only get worse if they are not recognized. One of the most prominent men living with a disability in recent years had to be Christopher Reeve. He and his wife, Dana, established the Christopher and Dana Reeve Paralysis Resource Center (http://www.paralysis.org), which offers information for all individuals with paralysis, but it is especially helpful for men. One area where men with disabilities struggle with a sense of their identity is related to their sexuality. “Men wonder if they can ‘do it’ or whether sexual pleasure is a thing of the past” if they become disabled or paralyzed. The emotional changes brought on by disease or injury affect sexuality, as well, because we may no longer feel attractive or able to bear children increasing fears that their spouse or significant other will leave. As the Reeves pointed out, “healthy sexuality involves warmth, tenderness, and love, not just genital contact.” Health care promotions and programs can help men build confidence by educating them on ways to talk with partners about their concerns and how to learn new ways of experiencing intimacy, including sex. Just as other physical activities can be adjusted to compensate for an injury or disability so that they are enjoyable and challenging, men with disabilities can talk with their partners about ways to be sexually creative, within the comfort levels of both individuals, so that they can experience satisfaction and confidence in this area of their lives, as well. Health care professionals can also educate themselves and colleagues on appropriate options and advice to support men with disabilities about sexual concerns; and can initiate conversations with patients who may be embarrassed to bring the topic up. © Christopher & Dana Reeve Paralysis Resource Center, http://www.paralysis.org/Health/HealthList, Health: Sexuality for Men, 2004 Osteoporosis and Osteoarthritis http://www.osteoporosis.ca/ Despite the fact that osteoporosis, arthritis and osteoarthritis (a form of arthritis) are completely different conditions, they are frequently confused, in particular osteoporosis and osteoarthritis, because both names start with “osteo.” A few basic facts: * Osteoporosis is a bone disease in which the amount and quality of the bone is reduced, leading to fractures (broken bones). Osteoporosis produces no pain or other symptoms unless a fracture has occurred. * Arthritis (arth = joint; itis = inflammation) is a disease of the joints and surrounding tissue. Osteoarthritis and rheumatoid arthritis are the most common forms of arthritis. * A joint is the location at which two or more bones make contact and allows for movement of the bones. * A person can have osteoporosis and osteoarthritis at the same time. * Both diseases may cause pain and limit mobility, but the cause of this pain and the way it is treated are quite different. * An accurate diagnosis of your pain is very important. With an accurate diagnosis, you will be better able to develop a pain management program that works for you. * The prefix “osteo” (which means “bone”) is the only thing that osteoporosis and osteoarthritis have in common. Definitions: OSTEOPOROSIS is a bone disease. The word "osteoporosis" literally means porous bones. It is a bone disorder characterized by decreased bone strength as a result of reduced bone quantity and quality. A person with osteoporosis has an increased risk of breaking a bone (fracturing) easily. OSTEOARTHRITIS is the most common form of arthritis. It is a degenerative joint disease that involves thinning or destruction of the smooth cartilage that covers the ends of bones, as well as changes to the bone underlying the joint cartilage. Osteoarthritis produces pain, stiffness and reduced movement of the affected joint, which ultimately affects ones ability to do physical activities, reducing quality of life. Symptoms: OSTEOPOROSIS is called "the silent thief" because it can progress without symptoms until a broken bone occurs. When bones become severely weakened by osteoporosis, simple movements - such as bending over to pick up a heavy bag of groceries or sneezing forcefully - can lead to broken bones. Hip, spine and wrist fractures are the most common fractures associated with osteoporosis. OSTEOARTHRITIS most often affects the hips, knees, fingers (i.e., base of the thumb, tips and middle joints of the fingers), feet or spine. It affects each joint differently, and symptoms are easy to overlook. It can be painful - the pain may result from overuse of a joint, prolonged immobility or painful bony growth in finger joints. Diagnosis: OSTEOPOROSIS is diagnosed through a bone mineral density test, a simple, painless test that measures the amount of bone in the spine and hip. OSTEOARTHRITIS is diagnosed based on medical history, physical examination and x-rays of the affected joints. activities, reducing quality of life. Risk Factors: OSTEOPOROSIS: The risk of osteoporosis may be reduced by becoming aware of these risk factors and taking action to slow down bone loss. Low bone mineral density is a major risk factor for fracture, the main consequence of osteoporosis. Other key risk factors include older age, prior low-trauma fracture, a history of falls and use of certain medications, such as corticosteroids (for example, prednisone). Family history of a fragility fracture is often a contributing factor. OSTEOARTHRITIS: Some factors that can contribute to the development of osteoarthritis include family history, physical inactivity, excess weight and overuse or injury of joints. Treatment: OSTEOPOROSIS can be treated with lifestyle changes and, often, the use of prescription medication. Paying attention to diet (adequate calcium and vitamin D intake) and getting regular physical activity are important lifestyle changes. Weight-bearing and strength training exercises can help to manage pain and improve the strength of bones and muscles, which helps to prevent falls. Broken hips caused by osteoporosis usually need to be repaired surgically. This can include the use of specialized "pins and plates," but can also involve hip replacement surgery. This is determined by the surgeon based on the exact type of hip fracture that has occurred. If you have osteoporosis, there are effective medications that can reduce your risk of fracture. OSTEOARTHRITIS can be managed with the use of joint protection (decreasing the amount of work the joint has to do), exercise, pain relief medication, heat and cold treatments, and weight control. Severe arthritis may be treated with an operation, where damaged joints are replaced with an artificial implant. Knee and hip joint replacements are commonly performed. If you have both diseases: Individuals who suffer from osteoarthritis and osteoporosis should seek help planning a program to manage both conditions and pay special attention to advice about exercise. Regular weight-bearing exercise is usually recommended for individuals with osteoporosis, but may be difficult to follow in the presence of significant hip or knee arthritis. Keeping joints mobile requires a special approach to exercise and movement. A specially trained physiotherapist can help ensure exercises are safe and beneficial for both conditions. Where to get help Arthritis The Arthritis Society (TAS) is the leading source of information on arthritis, including osteoarthritis. For more information about arthritis, call The Arthritis Society at 1-800-321-1433 or visit their website at www.arthritis.ca. Osteoporosis Osteoporosis Canada (OC) is the leading source of information on osteoporosis in Canada. OC provides individuals concerned about their risk of developing this disease and those who have been diagnosed with up-to-date information on all aspects of bone health. Our information counsellors on our toll-free line (1-800- 463-6842) can also help you to connect with chapters of Osteoporosis Canada in your area. Links for Living Well Tips for Living Well, The Arthritis Society From learning about the importance of exercising regularly to fully understanding your arthritis medications, the information contained in this section is meant to provide you with insights, information and tips that can be used by you to help make living with arthritis a little bit more manageable. http://www.arthritis.ca/tips%20for%20living/default.asp?s=1 Living with Diabetes, Canadian Diabetes Association If you or someone you know has diabetes, the information in this section may help you to understand it. * Do you want to know how exercise can help you to manage your diabetes? * Are you looking for tips to lessen fingertip pain from testing? * Are you wondering about special situations like shift work or travelling with diabetes? http://www.diabetes.ca/Section_About/livingIndex.asp Living Well while Aging, The Canadian Health Network Canadian Health Network Seniors Section. Do you have questions about how you, or an older person you care for, can stay healthy? This section is full of information to help those 55 and over stay active and well. You can search to find out how to: Support seniors and their caregivers; Prevent falls; Manage arthritis; and Deal with loneliness when you are older. http://tinyurl.com/rp26