A Different Normal

By George Segall, MD

The current process for diagnosing Alzheimer’s disease may include a detailed patient history, physical and neurological exams, laboratory tests, and a lengthy process of eliminating other possible causes of mental decline. For those caring for family members with suspected Alzheimer’s disease, this can be a long and arduous process filled with many questions and concerns. Does my loved one have Alzheimer’s disease? When will we know for sure so we can start treatment?

Researchers are exploring how positron emission tomography can help physicians diagnose Alzheimer’s disease earlier and more accurately and effectively manage symptoms in patients with the disease.

Although there is no cure, some recent advances in nuclear medicine and molecular imaging can help in the diagnosis of Alzheimer’s disease. The U.S. Food and Drug Administration recently approved a new molecular imaging agent that aids in the detection of beta amyloid plaques in the brain. If the test indicates large concentrations of amyloid plaques, then physicians have an additional piece of information to consider in their diagnosis of the patient’s medical/neurological status. If the test shows the absence of plaques, then it makes Alzheimer’s disease less likely.

In addition to helping in the assessment of patients with cognitive impairment, the availability of molecular imaging agents to detect amyloid plaques provides a valuable opportunity for further clinical research and for clinical trials. It is our hope that information garnered from molecular imaging agents will play a pivotal role in the development of new treatments that can help the millions of Americans with Alzheimer’s disease.

George Segall, MD, serves as chief of the Nuclear Medicine Service at the Department of Veterans’ Affairs Palo Alto Health Care System, Palo Alto, Calif., and professor of radiology at Stanford University, Stanford, Calif. He is currently president of the Society of Nuclear Medicine and has published more than 60 peer-reviewed journal articles and authored six book chapters on nuclear and molecular imaging.

By Maya Brown-Zimmerman

A few months ago, I wrote a post about the process of getting diagnosed with an “Invisible Illness” and how it can be difficult to get doctors on board. This month, I decided to look at how our illnesses can affect our relationships with those around us.

I was diagnosed with Marfan syndrome as a child, and it was my mother who pushed for my diagnosis. She recognized that my tall, thin stature and inability to master some gross motor skills — like riding a bike — were not typical of children my age. Thus, when I did receive the diagnosis of Marfan syndrome, she and my father took it very seriously (and were sometimes a little too overprotective!).

Growing up, I’ve received mixed reactions to my diagnosis from others around me. Some friends have been intensely supportive: carrying heavy loads for me, slowing their pace if we were taking a walk, and even participating in Marfan awareness events with me. Other times, I’ve been heckled for having too many doctors’ appointments or not participating in activities, as though I was making everything up. My diagnosis strained some relationships, but by and large, it has reached the point where it’s really not a big deal in terms of my family and friends; they don’t question the validity of my symptoms anymore.

I decided to pose the question on Facebook: “For those of you with an invisible illness, how did your family/friends react during the diagnostic process? Did they believe you? Were they supportive? How about now?”

Although I heard from people with a variety of diagnoses, there were common themes within their responses. They include:

-  Family or friends saying “If you just did _____ then this would go away” and/or “It’s all in your head.”

-  Suspicions or accusations of laziness, hypochondria, and exaggeration in order to get out of work or get attention (even if they accept your diagnosis as valid)

-  People saying/assuming that because you “don’t look sick” you must feel just fine.

Overall, a fair number of people reported that it was difficult for some of their loved ones to understand what was going on with them, especially in cases where a diagnosis was difficult to confirm. Denial was really common among family members and friends, and in some cases that denial has continued for years. A few did share how supportive and proactive their family and friends were, and have continued to be, though they still reported occasional feelings of loneliness and isolation during the diagnostic process.

Also, who else thinks it’s interesting that although no one can see our illnesses on the outside, it is often the diagnosis of such an illness that shows us the truth about our relationships with others oh-so-clearly?

I think that this demonstrates just how important a support network of people who have been in your shoes is, not only during the journey for a diagnosis, but also after. How did your loved ones handle your diagnosis of an invisible illness? If they handled it negatively, how have you coped?

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 Karin Gelschus

The effects of chronic illnesses vary greatly from person to person. For lupus, symptoms can be as minimal as a small rash or as serious as permanent organ damage. If you’re like me and many other chronic illness patients, the symptoms can affect any number of body parts. The different forms the diseases take can make them difficult to diagnose.

During the first several months, I went through countless blood tests, CT scans, MRIs and EKGs. I jokingly told my family that I was going back to school to be pre-med with all my new medical knowledge. However, it was really difficult to keep all the information straight – what tests I had done where, how long I’d had certain symptoms, which medicines I was supposed to take when and how often.

During the first couple of years my parents came to all my appointments, and after every one we had a recap of my doctor’s instructions. It helped to talk through the latest news and next steps together. Sometimes the information is tough to hear, so it’s helpful to have someone else there to listen for the technical information. Other times, the appointments result in small victories, and it’s just as important to have someone there to celebrate the small wins.

Whether or not you can have a friend or family member at your appointments, another helpful tactic is to keep a health journal, either online or on paper. After I was diagnosed, a family friend who also fights lupus gave me one of the best pieces of advice I’ve received – keep a journal.

With so many medications and varying symptoms, my journal helps me see trends in how I’m feeling. It also greatly improved the communication between me and my rheumatologist. He was able to better manage my symptoms when I gave him the most accurate information I could. During one appointment, I had him write down the exact amount of Prednisone I was supposed to take on what days and times because my dosage varied based on the day and time.

There are health journals specifically for this purpose, but a regular pad and paper is perfectly sufficient.

Here are a few items to record:

• Doctor appointments
• Medicine schedule
• Food diary
• Symptoms and rank each one on a scale of 1-10 based on severity
• Exercise regimen

Having this information on hand eased the stress of managing my illness. By writing the info down, I can reference it when I need to, and I don’t have to think about it otherwise. The less I have to think about having a chronic disease, the happier I am.

What helps you manage your health information?

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.