The Importance of Being Your Own Health Advocate

Health care providers and hospitals have the best intentions in mind; however, medical errors do occur. If you feel something is wrong, it is crucial to be your own health advocate and speak up. Bringing attention to a potential issue could prevent a future error with another patient. Meena Dhanjal Outlaw suffered a spinal cord injury over 20 years ago that left her significantly paralyzed. Here, she speaks about the importance of being your own health advocate.

All Doctors Are Not Created Equal

When I had my spinal cord injury seventeen years ago, it was evident that the type of medical attention I need is by doctors who understand a spinal cord injury. I lived far away from the rehabilitation facility that practically took care of my needs, so I sought a general physician close to home. Unfortunately, I found that she was not well-versed in treating patients with spinal cord injuries,

I could go to my general physician for common colds and other minor issues. However, I realized she didn’t understand how my body functioned after a spinal cord injury.

For example, every time I had to give a urine sample, she would note that there was bacteria in my urine and instantly say, ‘You have a urinary tract infection.’ and give me a prescription for antibiotics.  I already knew from the specialized doctors I had seen thus far that I would only need an antibiotic if I had a fever or unexpected bladder accidents. So to avoid conflict with the doctor, I just never filled the prescription.

It wasn’t easy at times, but if I didn’t speak up for myself, then who will?

Pay Attention to Your Body and Ask Questions

Doctor Discussing Medication with his patient as they sit next to one anotherAt one point, I had to call my surgeon when I experienced a post-op problem. The surgeon had placed a port under my shoulder to provide easier access to the type of transfusion that will successfully treat the neuromuscular disease I have in addition to my spinal cord injury, which is called Myasthenia Gravis.

I knew there was a problem, considering the amount of blood oozing from where the incision had been made to place the catheter. The nurse in post-op knew that they had missed a stitch. After looking at the wound, the doctor didn’t think it was necessary to put in an extra stitch.

I was in pain the entire weekend after the surgery and felt I was consuming way too much over-the-counter pain medication.

Upon going for my second transfusion, I mentioned to the doctor that I was still in a lot of pain. He dismissed my pain, told me I had a small clot, and redressed the area.

Unfortunately, I felt I couldn’t speak up for myself at that time. However, since then, I spoke with my neurologist, who recommended pain medication. In addition, the doctors will now be keeping a closer eye on this area since I have several more treatments there.

If You are Concerned, Speak Up for Yourself

Self-advocacy isn’t always getting the result you think is necessary for you. Instead, it’s about not being afraid to speak up when necessary. Many people with a disability feel they cannot speak up for themselves because they don’t want to offend the doctor and possibly get more neglectful care.

I look back and wonder if I had spoken up at the time, would that surgeon continue to dismiss me or would I have had a weekend free of pain?

Take Charge and Educate Yourself – Be Your Own Health Advocate

older woman sitting in a chair and reading a book

The best form of defense for me as a woman with a spinal cord injury was to educate myself about my own condition. This helped me better take action over my situation and prevent specific problems.

For example, if I took the antibiotics every time the general physician prescribed them to me, my body could’ve become immune to antibiotic treatment. At that point of severity, the only way to treat a UTI would be intravenously in a hospital with a much stronger dose of antibiotics.

Today, I have a general physician who listens to me and is well-versed in treating patients with Myasthenia Gravis and spinal cord injuries. While visiting her means a longer drive, it’s worth it to me because her care is so important.

So to recap:

  • Don’t be afraid to speak up.
  • Become knowledgeable about your condition so that you know what to do even after leaving a physician with no treatment to remedy your issue.
  • Find a doctor that understands
  • Don’t be afraid of distance.
  • Know your rights as a patient.

For further information on becoming your own health advocate and your rights as a patient, check out this helpful link www.patientadvocate.org, and remember knowledge is power.

Becoming your own health advocate can take time, but as Meena explains in her story, that tremendously helped her. There are many struggles that can come along with a spinal cord injury such as:

  • Neurological issues that can lead to loss of bladder or bowel control
  • Poor coordination or balance when walking
  • Extreme back, neck, and head pain
  • Changes in sexual function, sensitivity, and fertility

Being your own health advocate can help you feel more in control of your condition and have more confidence in the decisions you make for your medical care. When you take an active role in your health care, you are more likely to get the resources you need.

At Personally Delivered, we carry home delivery medical supplies for a wide variety of conditions. Whether you are looking for adult disposable diapers, incontinence pads, protective underwear, catheter supplies, or any other medical supplies, we have got you covered. Our friendly, knowledgeable, and caring Product Experts are just a phone call away and ready to assist you in the purchasing process.

About the Author

Meena Dhanjal Outlaw

On January 23, 2000, Meena suffered a spinal cord injury that left her a T12 paraplegic. She worked hard to grow and push past adversity and challenges and even went back to school for a four-year diploma in writing for teenagers and children.

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Alzheimer’s & Incontinence

Understanding Incontinence in People with Alzheimer's

Alzheimer’s disease is a progressive illness of the brain that slowly destroys a person’s cognitive capabilities. This can begin to interfere with basic daily self-care functions. In the later stages of Alzheimer’s, incontinence is common.

There is a complex relationship between Alzheimer’s disease and incontinence. Because we cannot see the brain, we are unable to know when it is changing in a person affected by this disease. Alzheimer’s may cause incontinence by taking away a person’s ability to recognize the need to use the bathroom.

A person’s language, speech, reasoning, and judgement can all be affected with Alzheimer’s disease. When someone doesn’t understand a question or is unable to form the words to let someone know they need to use the facilities, time may run out resulting in a bladder or bowel accident. Memory loss also may cause one to be incapable of finding a restroom when they are experiencing urge incontinence.

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How to Manage Alzheimer's and Incontinence

When caring for a person suffering from Alzheimer’s disease, ensuring you have an understanding attitude is key. They are likely to feel embarrassed, ashamed, or even angry about the condition.

It is essential to have empathy when taking care of someone with Alzheimer’s and incontinence. Being supportive and reassuring the person that incontinence is a common condition will help to reduce their feelings of embarrassment.

Essential Tips for Family or Caregivers:

Ensure they have the right incontinence products – A person affected by Alzheimer’s can be protected all day with the right products. They’ll also have uninterrupted sleep and be more comfortable throughout the night. These products not only offer protection but can rebuild confidence and help improve quality of life. Diapers, underwear, pads, and liners are offered in multiple sizes to fit all body types.

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Establish a daily routine – Building a daily routine of going to the restroom will allow enough time for the person to regularly empty their bladder and bowels. Making going to the restroom a part of a routine can be very effective for those with Alzheimer’s since drastic changes are often uncomfortable for them.

Make sure they are drinking enough water – Six to eight glasses of fluids each day is essential. Withholding fluids can cause dehydration, which can lead to a urinary tract infection or increased incontinence. On the other hand, not drinking enough fluids, or not drinking them for long periods of time can lead to constipation. Drinking enough water paired with the daily routine above can lessen potential accidents.

Encourage your loved one to stay active – Believe it or not, gentle exercise every day can help with regular bowel movements. Just the shortest walks can be effective in increasing their health.

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Some of Our Best Product Picks for Managing Incontinence:

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Personally Delivered Daytime & Nighttime Protective Undergarments – The most advanced technology is used to provide superior absorbency and leakage protection, better than many of the leading brands. These undergarments will keep you dry, comfortable, and confident throughout the day and/or night.

Abena Abri-Form Medium Absorbency Comfort Briefs

Abena Abri-Form Comfort Briefs – These fitted briefs are one of the leading adult diapers, known for their high quality and super absorbency. Four different absorbency levels are offered, providing all-around protection. Advanced features include stand-up leak guards, re-fastenable tape tabs, wetness indicator, and elastic in rear waistband.

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Tranquility OverNight Personal Care Pads – These overnight care incontinence pads keep the skin dry and reduce odor while protecting delicate skin.

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Tranquility Select Belted Undergarment – This secure fitting one-size-fits-all product has a pair of wide two button-elastic straps and a waterproof cloth-like outer layer. The soft absorbent mat is made with super-absorbent polymers, keeping the skin dry and protects against skin breakdown.

Life with Alzheimer’s can be manageable for both the patient and the caregiver. We at Personally Delivered have Product Experts to help you find the right home delivery incontinence supplies suited for your specific needs.

Speak to one of our caring Product Experts today! Toll-free (800) 777-1111

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