A Different Normal

Sona Mehring is the founder and CEO of CaringBridge, a nonprofit providing free, personal websites that connect people experiencing a health challenge to their family and friends, making each health journey easier. CaringBridge sites offer a personal and private space to communicate and show support when health matters most. Follow Sona on Twitter – @gogosona.

For all the joy they bring, the holidays can also be a stressful time – especially for anyone facing illness or hospitalization, or for anyone taking care of an ill or hospitalized loved one.

If you’re facing a less-than-merry holiday season because of health concerns, it can be beneficial for you to embrace the support and positive attitudes of your friends. Stay in touch with your friends and family, don’t cut yourself off, and be open to any assistance they want to give to help ease your holiday stress.

People facing a chronic condition can sometimes be so caught up by the demands of the illness that other important needs and priorities fall by the wayside. Oftentimes you don’t realize how much others care and want to know how you’re doing. By sharing what you’re going through, you can form a community of support and help them understand what they can do to make your holiday season a little brighter.

The importance of a strong network of family and friends, even during the healthiest of times, is well established. So, when facing a diagnosis and ongoing treatment, reliance on your network of support for emotional, and sometimes physical, strength becomes even more important.

In the article “How words have the power to heal” by CNNHealth.com contributor, Amanda Enayati, she describes how blogging helped save her life by providing her with a therapeutic outlet to share her experience.

We recently surveyed people who had started a CaringBridge site and received similar responses. Ninety-one percent of respondents said that using CaringBridge to stay connected and share health updates with family and friends helped make their health journey easier and 88% said using CaringBridge positively impacted their healing process. Starting a private, personal site with CaringBridge is one option for staying connected and receiving support. It eases communication and encourages sharing when you need it most. It can be especially useful when family and friends are spread out across the country.

Your supporters want to get involved, but sometimes, they just don’t know how to help. Don’t be afraid to ask for help dealing with the special demands of the holidays, like shopping, decorating your home, addressing greeting cards or stopping by with holiday cookies or snacks. They will welcome specific requests for help and you’ll benefit from a little holiday cheer.

By Maya Brown-Zimmerman

Let me start off by saying, overall, I don’t mind having Marfan syndrome. I’ve had some great experiences as a result of being born with it and have met some of the most amazing people in the world who have become my second family. Marfan has made me who I am today and I really like who I am. If I had the chance to get rid of it, I would pass.

That said, some days, having a chronic illness really stinks. I think it’s totally acceptable to have a day of grief over that now and again. Today I’m indulging in a little (rarely played) game of “what if I didn’t have Marfan?”

If I didn’t have Marfan syndrome, I’d be a runner. I wouldn’t have my long legs, but my brother runs and he’s not all that tall, so I think it’d be doable. I’ve always admired runners, plus you don’t need to lift weights or do a million crunches to run. I wouldn’t run in the cold though. I’d either have a treadmill or use one at a gym. Some people might think running in place is boring, but I like both TV and music, so I think either of those would occupy me well enough while I worked out.

If I didn’t have Marfan syndrome, I’d have more children and I’d try to have water births, or at least go drug-free in the hospital.

If I didn’t have Marfan syndrome, then Baby J wouldn’t have Marfan either. That means I wouldn’t have an oxygen tank, cpap machine, or pulse oximeter in my bedroom. I wouldn’t have had to check J’s oxygen levels last week when he started screaming out of nowhere to make sure his lung hadn’t collapsed (which can happen spontaneously with Marfan). We’d also have a lot more time during the week to play because we wouldn’t have his therapy or specialist appointments.

If I didn’t have Marfan syndrome, I’d be a music therapist. It wouldn’t have mattered that music therapists are self-employed and therefore have to get private insurance because I wouldn’t have a pre-existing condition that makes getting private insurance impossible. So, I wouldn’t have had to make the decision to switch majors in college to something more Marfan friendly. It’s not that I didn’t enjoy my major and subsequent career path, mind you, but if Marfan hadn’t existed I probably wouldn’t have left music.

If you didn’t have Marfan (or insert whatever it is you might have), what might be different for 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 the Sensory Processing Disorders Blogger Network.

By Krista Kellogg

“It is impossible to feel grateful and depressed in the same moment.”–Naomi Williams, Body, Mind and Spirit

This week I attended the November meeting of our local community division of the National Psoriasis Foundation. The purpose of our division is to further the Foundation’s mission of finding a cure for psoriasis and psoriatic arthritis and eliminate their devastating effects through research, advocacy and education.  Our division is working to build capacity in South Florida—like our counterparts across the country—through outreach, education and awareness. The meetings take place in the evening at the end of our busy days and our group includes a high school student, parents, an entrepreneur, working professionals and our local staff contact from the Foundation.  Each time we meet, even after all my years of volunteering, I am humbled that people take the time to show up, make a commitment to the group and offer of themselves to make a difference in the lives of others.

Volunteering is a gift for both the giver and the receiver.  Coping with a chronic disease like psoriasis and psoriatic arthritis can sometimes feel like a long war won in small battles.  It is relentless. Bolstering yourself for the burden of it on a daily basis can be disheartening and exhausting.  One antidote that always works for me (even when I am feeling too busy or too tired to participate) is getting out of my own head and getting involved in the work at hand – finding a cure.  Without exception, each time I leave a local meeting, end a committee call, or fly home from a board meeting, I feel energized and inspired to do more.  It makes me feel better, less depressed about my disease and like an active participant in my own life. I am grateful to be surrounded by wonderful, giving people.  Other side effects may include increased awareness of the latest research, quality family time and fun – something all of us could use a little more of.

The human capacity for compassion and kindness is great and takes many forms.  You can find it everywhere, in droves, if you seek it out.  I found it at the Walk to Cure Psoriasis where hundreds of people step together to help those living with psoriasis and psoriatic arthritis look forward to longer, healthier lives.  I found it on Capitol Hill where advocates from all over the country visit Congress to help shape the laws and policies that affect millions of patients like me.  And I found it again this week, at our division meeting.  Finding an organization like the National Psoriasis Foundation is a great place to start.  It can open your eyes and your heart to the power of giving and the powerful effects of giving thanks.

Krista Kellogg was elected to the National Psoriasis Foundation Board of Trustees in 2006 and currently holds the position of chair-elect. She is chair of the Board Governance Committee and a member of the Development, Finance and Outreach Committees. She also served as chair of the 2011 National Volunteer Leadership Conference. Krista has palmar-plantar psoriasis.  She lives in Miami, Florida, where she is the marketing director at the law firm of Stearns Weaver Miller.

By Richard C. Senelick, MD

Carolyn had always been the strength of her family. Her husband and children considered her invulnerable and counted on her to keep the family running – working, cooking, cleaning, helping with homework and coordinating the family’s social life. She pulled it all off: running a successful consulting business, caring for her four children and serving on the local school board.

One rainy night, she was running late for a board meeting. She lost control of her car and hit a utility pole, fracturing her pelvis and both legs. What followed was a long period of hospitalization and rehabilitation. Carolyn wasn’t used to inactivity or depending on others. Her house and business were chaotic, and she felt out of control for the first time in her life. She was irritable, short-tempered and depressed. Little things which never bothered her before now caused anxiety and distress. Fortunately, she recognized that she needed help and sought counseling from a psychologist. It didn’t take long to get back on track, coping and running her business from a laptop computer in her study.

How would you deal with the sudden onset of a physical disability? How would you adapt to a new and unexpected way of living? Why do some people cope so well under enormous burdens while others are derailed by minor injuries?

Typical Reactions

It is normal to go through a period of mourning or depression after the loss of a loved one. The same holds true when we lose a physical ability or when we age and find that what was once easy to do is now more difficult.

Following a physical loss or trauma, you may experience symptoms that are a result of a loss of physical abilities. The changes may cause you to feel overwhelmed and as if you lost your previous identity.  Typical reactions include:

Sadness: This is a normal reaction that may manifest itself in a variety of behaviors. You may be angry or irritable for no particular reason. Sleep disturbance, loss of appetite and apathy are all signs of loss and depression. You may fail to gain pleasure from those things that once provided a great source of satisfaction.

Fear: With the loss of physical abilities comes a loss of control over your environment and personal needs. You may question if you will ever regain your prior abilities.  “Will I be able to dress myself and attend to my personal care? Will I be able to provide financial support for my family? Will I get better? Who will care for me if I stay like this? I don’t think I can deal with this.” This thinking results in a sense of impending doom. Physical symptoms of anxiety may follow, with palpitations, sweating, tremor, shortness of breath and a sense of panic.

Denial: It is normal for all of us to respond with the belief that everything will resolve and return to the way that it was before the injury. In a way, we refuse to believe that the changes have really happened. Many patients and families don’t want to hear what the future truly holds; not accepting the consequences of the illness, but accepting appropriate treatment may be an effective response initially. Who of us can accept up-front that we will never walk or speak again? However, if the person continues to deny the degree of their disability, this represents a significant emotional problem that requires psychological intervention.

Hope

The good news is that, with proper treatment, the majority of people adjust and go on to lead satisfying lives. It can be a stormy, difficult course, but help is available. Experts in rehabilitation psychology understand the issues that people are going through and help make the passage through this process less painful. Treatment should start early. Don’t wait to become depressed. One last word of caution: be certain that the psychologist or counselor understands the nature of your disability and has both the experience and skills to deal with your issues. Just like choosing the correct antibiotic for an infection, choosing the right rehabilitation psychologist or counselor can be the difference between success and failure. When in doubt contact your local rehabilitation hospital for a list of names in your community.

Richard C. Senelick, MD is a physician specializing in both neurology and the subspecialty of neurorehabilitation. He is the Medical Director of HealthSouth RIOSA, The Rehabilitation Institute of San Antonio, and an associate clinical professor in the Department of Neurology at the University of Texas Health Science Center in San Antonio. He has authored several books on stroke, spinal cord injuries, and brain injuries. Dr. Senelick is an expert in the WebMD Stroke Community.

Jane H. Gilbert is President & CEO of The ALS Association, an organization that serves as the leading voice and most trusted source of information about ALS (amyotrophic lateral sclerosis), otherwise known as Lou Gehrig’s Disease.  The Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

It is an understatement to say that ALS makes life challenging for people who live with it. Individuals with this neurodegenerative disease encounter myriad physical changes to their bodies such as the loss of speech, mobility, swallowing and unassisted breathing.  In addition, many people with Lou Gehrig’s Disease often feel overwhelmed about how these changes will affect their relationships with loved ones, friends and co-workers and how the disease will impact their lives in the short and long term.

The ALS Association offers those fighting ALS a variety of resources to manage the disease.  Our nationwide network of Chapters work closely with people battling Lou Gehrig’s Disease and their families to provide them with free, personalized assistance in the communities where they live.  This assistance includes access to patient and caregiver support groups; case managers who assess both current and future physical and emotional needs; and loan closets that supply equipment to improve a person’s quality of life.  Access to often costly wheelchairs, augmentative communication devices and other accessories that allow for easier mobility around the household empower both those with ALS and their caregivers as they cope with the changes that occur in the different stages of the disease.

In addition to providing care that can enhance one’s lifestyle, The ALS Association offers live webinars featuring topics of interest to the ALS community.  These webinars explore subjects like current ALS research and clinical trials, use of assistive technology tools, and federal benefits for veterans with Lou Gehrig’s Disease.  Attendees—often people and their families facing ALS on a daily basis—can submit questions during these events and receive timely advice from knowledgeable experts regarding potential therapies for the disease or possible legislation that could offset the costs of durable medical equipment.

Feedback is important to us; we want to keep people battling ALS updated with the latest news and information about this disease.  Therefore, we invite you, your family, friends and neighbors to connect with our Chapters and us on Facebook, Twitter and other social media.  As the well-known adage goes, knowledge is power, and The ALS Association strives to empower those fighting ALS and retain control over their lives.

To learn more about ALS and The ALS Association, visit The Association’s Website at http://www.alsa.org.

Hugh Parry is the president and chief executive officer of Prevent Blindness America, the oldest voluntary health agency nationally engaged in the prevention of blindness through comprehensive programs of community service, public and professional education and research. Parry joined Prevent Blindness America in April 2002, after 20 years in not-for-profit management.

Tackling a crossword puzzle or reading a good book.  Watching the ball game on TV or driving to pick up the kids.  Taking a trip down memory lane while looking at old photos.  Seeing your new grandbaby for the first time.

These are just a few of life’s simple pleasures.  Yet, for some, these are almost impossible due to vision loss or blindness.

When I meet new people, I often ask them if they think they could go blind one day.  Invariably, the answer is always “no.”  Of course, we all believe it can’t happen to us!  We’re too young, healthy, active.  Then I ask a follow-up question: Do any of your relatives have diabetes?

Then the answer hits home.

More than 25 million Americans have diabetes.  And, those who have a relative with the disease are at a higher risk for developing the disease.  In addition to being the leading cause of kidney failure and non-traumatic lower limb amputations, diabetes is the leading cause of new cases of blindness in those ages 20 and over.

In addition to diabetic retinopathy, people with diabetes are also twice as likely to develop other eye diseases such as cataract and glaucoma. Yet, many aren’t aware of the damage that diabetes can have on the eyes.

As of today, there is no cure for diabetic eye disease or diabetes, for that matter.  So, what can we do to help save our vision and our overall health from diabetes?

Studies have shown that maintaining a healthy lifestyle can help prevent the onset of Type 2 diabetes. For those who have already been diagnosed, it can also help prevent vision loss.

Eating a healthy diet, exercising, monitoring blood pressure and blood sugar levels, and quitting smoking can significantly increase your chance of protecting your vision.

But another important factor in maintaining healthy vision is regular eye care.  For those who have diabetes or pre-diabetes, visiting your eye doctor once a year is essential.  Your eye doctor can help monitor your vision through a dilated eye exam and provide recommendations and treatment plans to help protect your eyes.  Early detection and treatment are crucial to the success of preventing vision loss from all forms of eye disease.

As you may know, November is National Diabetes Awareness Month.  We hope that this will encourage everyone to take a moment to find out more about this disease that has already reached epidemic proportions, with no end in sight.

As part of this observance, Prevent Blindness America is launching our Live Right, Save Sight! program which offers those who have diabetes, or are at risk for developing the disease, steps they can take today to save vision in the future.  Visit our website to take an online risk factor quiz as well as learn about how diabetes damages the eye, treatment options and other facts.

Our vision is something that we tend to take for granted until we start to lose it.  Then all of the wonderful things that life has to offer start to become even more precious.  I hope you won’t let that happen to you and that you’ll take the time today to think about how your life could change without being able to see clearly. And, that you will decide to take the necessary steps to make your health and your vision a priority today for a brighter future.