The following is an interview conducted by Hope Ditto of Disruptive Women with Grace Bender.

“Take responsibility for your own health care.” That’s the message that Grace, a Disruptive Woman and an experienced patient advocate, wants you to take away from her story. “You have to be your own advocate, but if you can’t, don’t be afraid to ask a family member or friend to step in and speak up on your behalf.”

Grace can speak from experience about being an advocate, both for herself and for her loved ones. In fact, Grace created mymedmanager™ , a personal health care and medication organization system, after her experience as an advocate for her mother. (You can read about this in a previous blog post here). While that experience focused primarily on managing medication intake, Grace’s more recent experience with her husband highlights, perhaps even more poignantly, the importance of taking responsibility for one’s health care.

When Grace’s husband first started shuffling his feet rather than walking correctly earlier this year, this was attributed to a combination of a torn meniscus and aging. When he began suffering from insomnia, stress was blamed and sleeping pills were prescribed. When he showed signs of depression, he was prescribed anti-depressants. When he developed tremors, which he actually described as feeling anxious, yet another medication was added.  While he saw various specialists, no one ever suggested that perhaps there could be a larger underlying problem to explain all these symptoms; that all of these ailments could possibly be interconnected. Grace then started going with him to some of his medical appointments.

At one point, Grace noticed that he had a hand tremor at the same time that he said he was feeling very anxious.  He then asked if she thought it could be Parkinson’s. She immediately went to the computer and did a search on Parkinson’s.  Despite her husband being what many would consider a “textbook case,” as Grace explained, none of the specialists ever put it all together. Every one of his ailments was a symptom of Parkinson’s but each one was treated separately, and there seemed to be a logical explanation for each symptom.

A neurological specialist confirmed that it was indeed a mild case of Parkinson’s.  With the proper medication for that disease and after he is on the full dose, it is expected that some of the other medications will be reduced or eventually eliminated.  Already there is an overall improvement because he is taking the proper medication and beginning to exercise.

As stated, the bottom line to Grace is that you must be your own advocate, ask questions, and seek a second opinion when issues are not resolved. With the abundance of reputable information sources available and accessible online, there is no excuse not to educate yourself about your condition, symptoms, and prognosis. You can then ask intelligent questions and take a significant responsibility for your health care. (more…)

By Grace Bender. Everyone needs to be their own healthcare advocate.  I realized this when I noticed my mother struggling to manage the numerous medications she was taking. With so many prescriptions and over-the counter medications to keep track of, I was concerned about her taking the correct dosages at the correct times and following all the various instructions.

So I decided to create a medication chart that allowed her to track her medications more easily and ensure she was taking them correctly. We then showed the chart to each of her physicians and pharmacist.  The result was a dramatic change in my mother’s medication regimen.  The chart enabled her physicians to view what they and all her other doctors were prescribing. They soon realized just how many medications she was on and that some medications were actually counteracting others.  Many prescriptions were changed or stopped and over time she went from taking 16 medications to nine.

Adverse events related to medications are the fourth leading cause of death in U.S. for patients over the age of 65.  This startling statistic led me into the patient-advocate role.  Since that time my own experiences have continued to reinforce my belief that individuals need to take control of their health and work to make sure all their healthcare providers, caregivers, and/or family members are working together as a team.

After being faced with several health scares in 2008, I decided to have an MRI breast scan for peace of mind.  I had learned that the scan was the best diagnostic and screening tool for women with large, dense breasts and a family history of breast cancer.  Since I had a mammogram six months earlier, which was normal, my physician did not think the MRI was necessary.  However, I decided to have one to be certain I was breast-cancer free.  To everyone’s surprise, the scan revealed three spots that biopsies confirmed to be multifocal breast cancer.  Since I knew my own body and had educated myself about available screenings, I may have saved my life because I was told a mammogram might have taken years to pick up the spots. This may not be the right course for every woman, but everyone should know that this tool exists. (more…)

As a member of the Susan G. Komen for the Cure Advocacy Alliance Board and a breast cancer survivor, I welcome readers of Disruptive Women in Health Care to read the statement below that was released by Komen as a result of the U.S. Preventive Services Task Force “new breast cancer guidelines.” In addition, please visit the Komen website: www.komenadvocacy.org and take a stand and action by signing the petition and help ensure that all women have access to this lifesaving screening.

Susan G. Komen for the Cure® Recommends No Impediments to Breast Cancer Screening

Until Science Improves, Current Screening Recommendations Should Remain, World’s Leading Breast Cancer Organization Reports

Nov. 16, 2009 – Susan G. Komen for the Cure®, the world’s leading breast cancer advocacy organization, has carefully reviewed the data and new recommendations from the U.S. Preventive Services Task Force (USPSTF) concerning mammography screening. Komen for the Cure issued the following statement today from Eric P. Winer, M.D., chief scientific advisor and chair of Komen’s Scientific Advisory Board.

“Susan G. Komen for the Cure wants to eliminate any impediments to regular mammography screening for women age 40 and older. While there is no question that mammograms save lives for women over 50 and women 40–49, there is enough uncertainty about the age at which mammography should begin and the frequency of screening that we would not want to see a change in policy for screening mammography at this time. Komen’s current screening guidelines can be found at www.komen.org and would not be changed without serious consideration.

Our real focus, however, should be on the fact that one-third of the women who qualify for screening under today’s guidelines are not being screened due to lack of access, education or awareness. That issue needsfocus and attention: if we can make progress with screening in vulnerable populations, we could makemore progress in the fight against breast cancer.

Mammography is not perfect, but is still our best tool for early detection and successful treatment of this disease. New screening approaches and more individualized recommendations for breast cancer screening are urgently needed. Susan G. Komen for the Cure is currently funding research initiatives designed to improve screening, and we believe that it is imperative that this research move forward rapidly. Komen also provides funding for more than 1,900 education, awareness and screening programs.

We encourage women to be aware of their breast health, understand their risks, and continue to follow existing recommendations for routine screenings including mammography beginning at age 40.”

For many years I was a caregiver and advocate for my family and friends. I discovered that taking their medications correctly was one of the main problems.  The struggle occurred mostly because they were often taking multiple medications prescribed by numerous physicians, and using various pharmacies to fill their prescriptions.

This resulted in either missing medications, or taking them incorrectly, to simply becoming frustrated and not taking them at all.  This was especially true for my mother who was on 16 prescription and 6 over-the-counter medications when I decided to design a medication chart to assist her. That developed into a healthcare and medication  system, easy-to-use spiral notebook.  This can be seen on www.mymedmanager.com or on www.youtube.com/mymedmanager.

Medications can be very beneficial, but to get the most benefit, they must be taken properly.  Following instructions from the prescribing physician is extremely important, but reading and understanding the warning labels placed by the manufacturer is just as important.

For example, many people think if the warning label says, “take with food,” it is to prevent getting an “upset stomach.” Therefore, many will ignore that warning label and take it on an empty stomach because they believe they have stomachs “made of steel.”   What they may not realize is, in many cases, food helps to increase the absorption of the medication.  There are numerous examples of this type of confusion.

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