Reaching Out: The importance of human connection in the face of chronic illness.

Neurology Now
May/June 2007
Volume 3(3)
p 5
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Right now, one out of every 300 Americans has Alzheimer's disease. By the year 2030, experts predict that number will triple to over 15 million people. It's a staggering figure, but one that doesn't do justice to the full reach of Alzheimer's, as the friends, family, and caregivers of each of those 15 million people will also be touched by the disease.

In “Raise the Curtain” (page 24), actor David Hyde Pierce discusses the impact that his grandfather's and father's dementia had on their entire extended family. When Pierce's grandfather developed Alzheimer's disease, none of his loved ones knew what it was or where to find help. Like many families, especially in the early years of Alzheimer's awareness, they faced a terrifying illness in relative isolation. But by the time Pierce's father developed the disease years later, the family had found the Alzheimer's Association, and the information and support they received made a terrible ordeal a little easier.

Of course, Alzheimer's isn't unique in its effect on friends, families, and entire communities: All of the conditions we cover in Neurology Now have ripple effects. Thankfully, healthy relationships have ripple effects of their own. Reaching out to give and receive support can be enormously helpful in the face of chronic illness.

In “Sex, Love, and Multiple Sclerosis” (page 34), we investigate the relationship challenges faced by people who have multiple sclerosis (MS). People with MS experience flare-ups of neurological symptoms followed by (sometimes lengthy) periods that are symptom-free. It's an unpredictable and potentially debilitating disease that currently has no cure. What all of this means is that the future health of a person with MS is uncertain—a challenging issue for people in the strongest of relationships, not to mention new and more fragile ones.

So we asked a group of health experts—some of whom have MS—how and when to broach the subject of this diagnosis with new friends and potential romantic partners. Their practical advice can be applied to interpersonal challenges for people with other chronic health conditions as well.

Reaching out means connecting with more than just your immediate friends and family. Sometimes it can be a relief to talk to other people—strangers even—who know what you're going through. All of the advocacy organizations that we list in Resource Central (page 46) are doing great work bringing people together to raise awareness of neurological conditions and help find treatments and cures. We encourage you to get in touch with them to them for information and support.

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Neurology Now is proud to report that the Alzheimer's Association is launching their first large-scale campaign to raise awareness about Alzheimer's disease. Through national efforts and local events, they hope to change the course of Alzheimer's disease for patients and caregivers. The three pillars of this campaign:

▸ Voice your opinion in support of those with Alzheimer's

▸ Open your eyes to the more than 5 million people who live with Alzheimer's

▸ Move toward a cure.

There's so much that can be accomplished when we work together. More details about this important campaign and how you can be involved can be found on their new website at actionalz.org .

Now let us hear from you. If you have a chronic health condition, how does it affect your relationship with your friends and family? How have you brought the subject up with a new friend or someone you had a romantic interest in? We would love to learn more about communication strategies that have worked for you and share them with our readers. There is so much we can learn from each other about developing healthy support systems, whether we have a chronic health condition or not.

Robin L. Brey, M.D. Editor-in-Chief

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