A Different Normal

By Sona Mehring

When you’re at the height of receiving medical care, or feeling run down or exhausted from everything life throws at you, do you ever wonder – Where is everyone? Why isn’t anyone helping me?

I think we’ve all experienced this from time to time, whether it be during a health journey or other critical moment in our lives. What I’ve learned during my time raising three sons, caring for ill family members, and building my career is that when you need help, you have to ask.

There are people who care and want to be there to support you. But they either don’t know that you need help, don’t know what they can do, or aren’t sure how to offer their assistance.

In this blog post, my colleague, Katherine Johnson, writes about stepping up and offering support to those around you. And I fully agree with her. But I also think that when you need help, you shouldn’t be afraid to ask for it.

That’s why we created the SupportPlanner at CaringBridge. You can create your own online calendar and list tasks that you need help with like a ride to the doctor or mowing the lawn. Then the people you invite to view it can sign up for a task. This removes any awkward conversations or the dreaded “let me know how I can help” that you never really feel like you can follow up on.

What other services do you use in order to get the support you need? Is there anything you wish was available but haven’t found yet?

Sona Mehring is the founder and CEO of CaringBridge, a nonprofit offering many ways for people to care for each other during any type of health event. CaringBridge offers personal Sites, a SupportPlanner and an online volunteer community, the Amplifier Hub. Follow Sona on Twitter – @gogosona.

By Karin Gelschus

So many things are ripped away from us when we’re diagnosed with a chronic illness, and often times they’re taken from us long before the disease is identified. When symptoms crowd in, it’s natural to wander into a dark cave of detrimental thoughts. I was no different as I found myself trapped in a state of serious depression. It took me months to find my way out. With a LOT of effort, practice, and support from those closest to me, I was slowly able to transform my thoughts.

One of the hardest things was to see the good that has come from my disease. I’ve been forced to cope with lupus on a daily basis and because of its challenges, I’ve developed into a more mindful person.

Lupus has given me…

1. Empathy. My ability to listen, understand, and sympathize with other people’s struggles has expanded vastly and continues to deepen as I face new challenges.
2. Perseverance. Every single minute can be a struggle some days. Knowing that I have to deal with my illness regardless of my attitude, I’ve grown more determined to accomplish my goals than ever before.
3. The ability to say no, and not feel guilty about it. Our society is accustomed to jam-packed schedules. Between kids, work, and household chores, our to-do lists grow longer and longer. That life isn’t sustainable with a chronic illness, and I’ve learned to only take on what I can and want to handle.
4. A worth greater than myself. I now have a cause to fight. I volunteer and raise funds for lupus research. I blog to help others going through similar challenges. I try to do everything I can to help others like me coping with chronic illnesses.
5. The ability to take care of myself – mind and body. Although I’ve always liked to exercise and eat healthy (most of the time), it was easy to take my body for granted before I got lupus. The luxury of being careless isn’t an option for chronic illness sufferers. Routine due diligence and respect for my body are essential to keeping myself as healthy as I can be.
6. Laughter, because sometimes you just have to make fun of yourself. Chronic fatigue is a common symptom of lupus and because of my extreme tiredness, my short-term memory is pretty much non-existent. When I put the cereal box in the fridge or trip over my own feet, I chuckle to myself. I like to share my silly stories with other people so we can laugh together. My friends love hearing my daily hiccups.
7. Wisdom. I’ve learned more about life in the past several years than I did in the previous 10.
8. Priorities. How I spend my time is a lot different now than before I had lupus. What I used to stress about doesn’t seem to matter all that much anymore.
9. Humbleness. iPhones, Coach purses, Tiffany jewelry, the latest and greatest whatever doesn’t matter to me. The wonderful moments and memories I share with friends and family do.
10. Deeper love and closer connections with those who surround me.

Having recognized each of these qualities, I’ve reached a sense of peace with my illness and the path my life has taken. I wish with all my heart that all chronic illness suffers can reach some sort of peace with their illness. What have you become more mindful about?
Karin Gelschus was diagnosed with lupus at 23. She currently works as an interactive marketing specialist at CaringBridge, a nonprofit providing personal websites that connect people experiencing a health challenge to their family and friends.

For more on this topic, visit the WebMD Lupus Community.

By Frederic H. Fahey, DSc

Frederic H. Fahey, DSc, serves as of Nuclear Medicine Physics and PET at Children’s Hospital Boston and is an associate professor of Radiology at Harvard Medical School. He is currently president of the Society of Nuclear Medicine and Molecular Imaging. Fahey has written 54 journal articles and published 15 book chapters and serves as an expert consultant for the International Atomic Energy Agency.

Parkinson’s disease affects as many as one million people in the United States, yet thousands may not even know they have it. While the most obvious symptoms of the disease are movement-related, including shaking, rigidity, slowness of movement, and difficulty with walking; sometimes Parkinson’s can be very mild or mimic other neurodegenerative disorders, making it hard to diagnose. For those living with these symptoms, it can often be frustrating.

A diagnosis of Parkinson’s disease is usually made based on the patient’s medical history and a neurological examination. The physician conducts an interview specifically looking for principal motor symptoms (movement problems) that would exclude a diagnosis of Parkinson’s disease. Common presentations of the disease are usually easily diagnosed. Diagnosis can be difficult, however, when the symptoms are not fully typical of Parkinson’s disease.

It’s important for those living with neurodegenerative disorders to know with what disease they are dealing so they can proceed with the appropriate treatment. With an accurate diagnosis of Parkinson’s disease, physicians can predict the course of the disease and personalize treatment for each individual patient. Without the correct diagnosis, patients can suffer needlessly or experience harmful side effects of inappropriate therapies.

A new test for Parkinson’s disease now is available that may help these individuals who are in limbo, without a definitive diagnosis. A new diagnostic tool was approved last year by the U.S. Food and Drug Administration that, when used as an adjunct to clinical evaluation, can greatly enhance the diagnostic accuracy for patients with suspected Parkinson’s disease. The agent—iodine-123 Ioflupane—is used with single photon emission computed tomography (SPECT) to image the function of the dopamine transporter in the brain. Loss of function in the dopamine transporter can be indicative of the early stages of Parkinson’s disease. Results from the scan can help physicians differentiate Parkinson’s disease from essential tremor, neuroleptic (psychiatric medication for psychosis)-induced parkinsonism, and psychogenic parkinsonism.

For those living with neurodegenerative disorders, this new non-invasive and painless imaging test is a welcome advance in helping to better determine the cause of the many frustrating symptoms of neurological disorders. Knowing the root of the problem, as well as the severity and progression of the disease, is essential to getting a treatment plan that can make a difference.