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Help for Patients & Caregivers


Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
Asthma Epilepsy/Seizures Parkinson's Disease
Breast Cancer Hepatitis C Sleep Apnea
CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
Cystic Fibrosis Obesity  
     

Help for Patients and Caregivers : Osteoporosis

What is Osteoporosis?   
Common Symptoms
What Causes Osteoporosis?
Treatments
Prevention
Self Care
Additional Information


What is Osteoporosis? (How much do you know about Osteoporosis? Take our Quiz!)
Osteoporosis is a disease in which the density and quality of bone are reduced, leading to weakness of the skeleton and increased risk of fracture, particularly of the spine, wrist, hip, pelvis and upper arm. Osteoporosis and associated fractures are an important cause of mortality and morbidity.

In many affected people, bone loss is gradual and without warning signs until the disease is advanced. Osteoporosis is also known as "the silent crippler" because a person usually doesn't know they have it until it's too late. Unfortunately, in many cases, the first real "symptom" is a broken bone. Loss of height – with gradual curvature of the back (caused by vertebral compression fractures) may be the only physical sign of osteoporosis.

In the United States, osteoporosis causes more than 1.5 million fractures every year — most of them in the spine, hip or wrist. And although it's often thought of as a women's disease, osteoporosis affects many men as well. About 8 million American women and 2 million American men have osteoporosis, and nearly 18 million more Americans may have low bone density. Even children aren't immune.

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Common Symptoms?
Many people don't realize they have osteoporosis until they fracture a bone. There are usually no other symptoms - although some older people may lose inches in height or their backs may curve forward. Older people with osteoporosis are especially at risk of breaking a hip if they fall down.

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What Causes Osteoporosis?
Many factors will increase your risk of developing osteoporosis and suffering a fracture. Some of these risk factors can be changed, while others cannot. Recognizing your own risk factors is important so that you can take steps to prevent this condition from developing or treat it before it becomes worse. Major risk factors include:

  • Sex. Fractures from osteoporosis are about twice as common in women as they are in men.
  • Age (starting in the mid-30s but accelerating after 50)
  • Race. You're at greatest risk of osteoporosis if you're white or of Southeast Asian descent. Black and Hispanic men and women have a lower but still significant risk.
  • Frame size. People who are exceptionally thin or have small body frames are at higher risk because they often have reserved less bone mass to draw from as they age.
  • Family history of osteoporosis or osteoporosis-related fracture in a parent or sibling
  • Previous fracture following a low-level trauma, especially after age 50
  • Sex hormone deficiency, particularly estrogen deficiency, both in women (e.g. menopause) and men
  • Anorexia nervosa
  • Cigarette smoking
  • Alcohol abuse
  • Low dietary intake or absorption of calcium and vitamin D
  • Sedentary lifestyle or immobility
  • Certain diseases can affect bone, such as endocrine disorders (hyperthyroidism, hyperparathyroidism, Cushing's disease, etc.) and inflammatory arthritis (rheumatoid arthritis, ankylosing spondylitis, etc.)
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Treatment for Osteoporosis

A comprehensive osteoporosis treatment program includes a focus on proper nutrition, exercise, and safety issues to prevent falls that may result in fractures. In addition, your physician may prescribe a medication to slow or stop bone loss, increase bone density, and reduce fracture risk.

Therapeutic Medications. Currently, alendronate, raloxifene and risedronate are approved by the U. S. Food and Drug Administration (FDA) for the prevention and treatment of postmenopausal osteoporosis. Teriparatide is approved for the treatment of the disease in postmenopausal women and men who are at high risk for fracture. Estrogen/hormone therapy (ET/HT) is approved for the prevention of postmenopausal osteoporosis, and calcitonin is approved for treatment. In addition, alendronate is approved for the treatment of osteoporosis in men, and both alendronate and risedronate are approved for use by men and women with glucocorticoid-induced osteoporosis.

Bisphosphonates: Alendronate (Fosamax) and Risedronate (Actonel) are pills that need to be taken on an empty stomach with water. These medications help slow down bone loss and have been shown to decrease the risk of fractures.

Raloxifene. Raloxifene (brand name Evista®) is a drug that is approved for the prevention and treatment of postmenopausal osteoporosis. It is from a new class of drugs called Selective Estrogen Receptor Modulators (SERMs) that appear to prevent bone loss at the spine, hip, and total body. Raloxifene has been shown to have beneficial effects on bone mass and bone turnover and can reduce the incidence of vertebral fractures. While side-effects are not common with raloxifene, those reported include hot flashes and deep vein thrombosis, the latter of which is also associated with estrogen therapy. Additional research studies on raloxifene will be ongoing for several more years.

Calcitonin. This medication is a hormone made from the thyroid gland and is usually given as a nasal spray or as an injection under the skin. It may help prevent spine fractures, and is also helpful to control pain after an osteoporotic vertebral (spine) fracture.

Teriparatide Teriparatide is a form of parathyroid hormone that helps stimulate bone formation. It is approved for use in postmenopausal women and men at high risk for osteoporotic fracture. It is given as a daily injection under the skin and can be used for up to 2 years. If you have ever had radiation treatment to your bones or if you have parathyroid hormone levels that are already too high, you should not take this medication.

Estrogen/Hormone Therapy. Estrogen therapy alone or in combination with another hormone, progestin, has been shown to decrease the risk of osteoporosis and osteoporotic fractures in women. However, the combination of estrogen with a progestin has been shown to increase the risk for breast cancer, strokes, heart attacks and blood clots. Estrogens alone may increase the risk of strokes. Given the complexity of this decision, consult with your doctor about whether hormone replacement therapy is appropriate for you.

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Prevention

The following measures can greatly reduce your risk of osteoporosis. If you already have osteoporosis, these steps can help prevent your bones from becoming weaker. In some cases you may even be able to replace bone you've lost. Click here to take a One Minute Test.

Nutrition. The foods we eat contain a variety of vitamins, minerals, and other important nutrients that help keep our bodies healthy. All of these nutrients are needed in a balanced proportion. In particular, calcium and vitamin D are needed for strong bones as well as for your heart, muscles, and nerves to function properly. (See Prevention section for recommended amounts of calcium.)

Exercise. Exercise is an important component of an osteoporosis prevention and treatment program. Exercise not only improves your bone health, but it increases muscle strength, coordination, and balance and leads to better overall health. While exercise is good for someone with osteoporosis, it should not put any sudden or excessive strain on your bones. Asextra insurance against fractures, your doctor can recommend specific exercises to strengthen and support your back.

Consider hormone replacement therapy. Hormone replacement therapy can reduce a woman's risk of osteoporosis during and after menopause. But because of the risk of side effects, discuss the options with your doctor and decide what's best for you.

Don't smoke. Smoking increases bone loss, perhaps by decreasing the amount of estrogen a woman's body makes and by reducing the absorption of calcium in your intestine. The effects on bone of secondhand smoke aren't yet known.

Avoid excessive alcohol. Consuming more than two alcoholic drinks a day may decrease bone formation and reduce your body's ability to absorb calcium. There's no clear link between moderate alcohol intake and osteoporosis.

Limit caffeine. Moderate caffeine consumption — about two to three cups of coffee a day — won't harm you as long as your diet contains adequate calcium.

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Self Care

If you have osteoporosis, it is important not only to help prevent further bone loss, but also to prevent a fracture. Eliminate hazards in the house that can increase your risk of falling (remove loose wires or throw rugs, install grab bars in the bathroom and non-skid mats near sinks and in the tub, etc.) Be careful when you are carrying or lifting items, as this could cause a spine fracture. Wear sturdy shoes, especially in winter. Use a cane or walker if you have balance problems or have other difficulties walking.

  • Maintain good posture. Good posture — which involves keeping your head held high, chin in, shoulders back, upper back flat and lower spine arched — helps you avoid stress on your spine. When you sit or drive, place a rolled towel in the small of your back. Don't lean over while reading or doing handwork. When lifting, bend at your knees, not your waist, and lift with your legs, keeping your upper back straight.
  • Prevent falls. Wear low-heeled shoes with nonslip soles and check your house for electrical cords, area rugs, and slippery surfaces that might cause you to trip or fall.
  • Manage pain. Discuss pain management strategies with your doctor. Don't ignore chronic pain. Left untreated, it can limit your mobility and cause even more pain.
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Additional Information

National Institutes of Health (NIH): Osteoporosis and Related Bone Diseases, National Resource Center
1232 22nd Street, NW, Suite 500
Washington, DC 20037-1292
Phone: (202) 223-0344 or (800) 624-BONE (2663)
Fax: (202) 293-2356
Web: www.osteo.org
National Osteoporosis Foundation
1232 22nd Street N.W.
Washington, D.C. 20037-1292
Phone:(202) 223.2226
Web: www.nof.org/

 

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CAREGIVER TIPS & INFORMATION:
  • 10 Tips for Family Caregivers
  • Questions to Ask Your Healthcare Provider
  • How to Communicate with an Insurance Provider
  • Find a Doctor
  • Information on Seating & Mobility
  • Tips for Family Caregivers from Doctors
  • Care Management Techniques You Can Use
  • Compare Home Health Agencies in Your Area
  • Keep loved ones connected & updated!
  • Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don't delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one's condition and how to communicate effectively with doctors.
5. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
6.Trust your instincts. Most of the time they'll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is "yes," you're not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one's health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you'll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control - a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you're dealing. Reliable information is available from the health agency that deals with your loved one's condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you've learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what's going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one's care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you'll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn't family caregivers?

Start advance planning for difficult decisions that may lie ahead. It's never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you'll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It's extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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