A Different Normal

By Maya Brown-Zimmerman

What does it mean to be disabled? Is it different than having a disability? What does it mean to view ourselves as such, and is that different from how the world views us?

These questions came to mind after a recent online discussion with my Facebook friends about Oscar Pistorius, the Olympic athlete who recently became the first amputee to participate in both the Olympics and the Paralympics. It really got me thinking about disability and how that word might mean something different to each of us.

Personally, I consider myself to have a disability, but not to be disabled. In my mind, being disabled would mean that I have many disabilities and am unable to work. A disability can be “anything that…puts one at a disadvantage” (according to dictionary.com). Well, I have Marfan syndrome and that does put me at a disadvantage because I cannot participate in all the activities I’d like to and I’ve needed to use some accommodations in school.

I think there is a misconception that identifying as having a disability or being disabled means that you’ve given up, that you don’t see yourself as anything other than your illness or injury. This isn’t true for anyone I know, though! I believe that I can do almost anything I want to do. Having Marfan syndrome hasn’t stopped me from being a wife or mother, getting my Masters degree, volunteering, writing, or doing most other things. My body has a different set of rules and I have to respect those — so I might accomplish my goals in a different manner than others — but acknowledging my limits is not the same as giving up or giving in.

I am vocal about having a disability because I don’t want other people defining what having a disability means for me. Whether you’re active most days, or spend most of your time in bed, you have the right to define that for yourself.

So…is having a disability different from being disabled? What does that mean to you?

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and theSensory Processing Disorders Blogger Network.

By Anand K. Parekh, M.D., M.P.H.

Today, more than two out of three people with Medicare have two or more chronic health conditions such as high blood pressure, diabetes, or heart disease. And a recent report from the Centers for Disease Control and Prevention (CDC) found that more than one in five Americans aged 45-64 had multiple chronic conditions. The same report found that these Americans are less likely to get the medical care they need.

The health care law is tackling this problem head on.  Millions of Americans are now eligible for preventive care such as flu shots, blood pressure and cholesterol tests, mammograms, and colonoscopies free of charge. This matters because people with multiple chronic conditions are at higher risk for hospitalizations, readmissions, adverse drug events, and even death.

In addition, millions of individuals with multiple chronic conditions will receive better care, resulting in better health through Centers for Medicare and Medicaid Services’ (CMS) efforts to promote better care coordination throughout Medicare and Medicaid. CMS’s initiatives include the creation of new care models like Accountable Care Organizations that are responsible for the coordination of their patients’ care and promotion of electronic health records so that patients with multiple doctors can be confident that their doctors have the information they need. CMS has also launched initiatives through the Innovation Center such as the Health Care Innovations Awards program.  The majority of the projects funded by this program focus on improving care for individuals with multiple chronic conditions through enhanced care coordination by a multidisciplinary workforce.

Third, in the past, many people with multiple chronic conditions have been locked out of the insurance market. But the new health care law created the Pre-Existing Condition Insurance Plan, which has already provided health coverage to more than 75,000 people who were previously denied coverage because of their pre-existing conditions; many of them have multiple chronic conditions. In 2014, discriminating against anyone with a pre-existing condition will be illegal. 2014 will also mark the opening of the new Health Insurance Exchanges, where millions of Americans will be able to shop for health insurance and get tax credits to make insurance more affordable.

In total, implementation of the Affordable Care Act provides new and innovative ways to tackle the chronic disease epidemic, leading to improved health and quality of life.

Anand K. Parekh, MD, MPH, is Deputy Assistant Secretary for Health at the U.S. Department of Health & Human Services, where he leads the Department’s Multiple Chronic Conditions Initiative. He is board-certified in internal medicine, a volunteer physician at the Holy Cross Hospital Health Center, and an Assistant Professor at Johns Hopkins Hospital.

By Angela Robb

Angela Robb is a carepartner for her husband, Karl, who has young onset Parkinson’s disease.  She is an advocate for Parkinson Disease (PD) issues as a State Director for the Parkinson’s Action Network (PAN) in Virginia.  For the last 10 years, she has facilitated a PD support group with her husband. She is a certified Reiki Master and teaches Reiki to people with Parkinson’s and their carepartners/caregivers.

I’ve never known my husband without Parkinson’s disease (PD). He was diagnosed 5 years before I met him, at the age of 23.  We have been married for 15 years. I love my husband, but I do not love Parkinson’s. We acknowledge PD is part of our life, but not the entirety of our life.  Acceptance does not mean giving in, it means being prepared for the road ahead, wherever the journey takes us. My husband and I decided, from the very beginning of our relationship, that we are partners in this journey living with Parkinson’s. I’m a carepartner.

Importance of Self-Care

For many years I operated with the belief that carepartners needed to take care of themselves so they could care for their loved one with Parkinson’s.  Last year, I had a personal realization about this phrase. What I learned is this:  “I need to take care of myself for me, first,  not  just so I can take care of my loved one, but for just for me.” When I’m caring for myself just for myself, my self-care feels more empowering. It takes on a different meaning – it’s richer and more significant, resulting in a better me and a better carepartner for my husband.

It’s so easy for us to put ourselves last on the “care list.”, but it is vitally important to resist this impulse. It’s important that you listen to yourself and be willing to ask “How am I doing today?” or “How am I doing in this moment?” Being aware and listening to yourself is key. Here are some sample questions you can use to start:

• How do I physically feel today? Are there areas which need some attention?
• How balanced do I feel mentally today?
• How much time can I make for myself to meditate, exercise, <insert your activity here> today?
• How can I best care for myself today?

Tools in the “Toolbox”

Carepartners/caregivers need to have self-care tools in their toolbox to ensure that they are getting the care they need. If you don’t have a toolbox, take 10 minutes and list what tools you use for self-care: exercise, support group, meditation, counseling, respite care, etc. How often do you use these tools? Can you adapt your tools to fit what you need today? Do you periodically assess tools to see if they are still applicable? You may need to adapt the tools over time to fit your changing needs.

Follow your dreams

Since the progression of Parkinson’s is unknown, we decided to grab the bull by the horns and not wait for retirement to follow some of our dreams. I’ve heard many carepartners in support groups speak about losing their dreams or plans because of a diagnosis. Don’t let the disease take your dreams away from you! Alter or make a course change for your dreams but live life fully with Parkinson’s or whatever your friend or family member is living with. Accelerate your timeline if you are concerned about the uncertain future. Take that trip, spend time with your family, whatever your dreams, take control and achieve your goals!