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June 2009 In This Issue . . .   Ask the Doc  Tips on Taking a Staycation      Ask the Doc: Q & A with Edward Kasarskis, MD, PhD  Dr. Kasarskis Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. Q:  Is it normal for people with ALS to experience depression? What can we do about it? Dr. Kasarskis:  Usually there are phases in how people experience the disease. People are initially shell shocked and need time to put their new diagnosis into perspective. Some level of depression is understandable and a normal reaction to a loss. But people don’t usually experience long-term depression. To be sure, they may be depressed for a period of time but most then develop a certain determination to deal effectively with the disease and to get the help and support they need. They typically settle into an emotional coping pattern similar to what they experienced before they developed ALS. Some people with ALS need and benefit from medication and counseling just as do many others in the general population. Most are helped by talking about the issues facing them and formulating a concrete plan for what they should do about each problem or issue that comes up. People want clear direction from their health care professionals about what to expect around the corner, and how to prepare for the future. Patients and their families value this guidance so that they can understand the challenges facing them in the future and set priorities. Caregivers of people with ALS can also experience depression, in addition to physical fatigue. Getting additional help and support is absolutely crucial. The ALS Association and the physicians and staff at ALS Certified Centers of Excellence and Clinics can work with caregivers and help find necessary resources. Research indicates that an ALS patient’s quality of life remains essentially unchanged, even as their physical condition worsens.  I suspect that much of this is due, in part, to the unceasing physical and emotional support of their family.  Interestingly, studies of quality of life in people with ALS and their caregivers have found that an individual’s level of satisfaction with life before diagnosis is usually predictive of how satisfied he or she will be after developing ALS. When it comes to caregivers, satisfaction with life at the point of their loved one’s diagnosis is also important, but individual differences -- such as age and the speed of disease progression -- can have a significant impact. Each issue we feature a leading neurologist specializing in ALS responding to a question. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.  TOP  Have you checked out Twitter? Have you checked out Twitter? The ALS Association is tweeting: @alsassociation. You can also follow comments specifically about ALS by visiting searchtwitter.com. Search for ” #ALS.” You’ll find thoughts about ALS from all over the world. To respond to these “tweeters” or start “tweeting” for yourself, visit twitter.com and sign up. It’s free. Tips on Taking a Staycation If you’re considering taking a regular vacation with some trepidation –perhaps because it sounds like a lot of work, or money, or both – this may be a good time to consider taking a staycation. Coined a few years ago, a staycation is simply a vacation spent at home or in your town but designed to give you the relaxation and respite you need. For some, a staycation is less stressful than a full-blown vacation because it involves fewer challenges (and travel these days can sometimes be difficult) and is typically far less expensive. The goal is to get out of your daily routine, see and experience places you haven’t seen or spots you’ve always loved -- and have some fun without the travel. Some people get a hotel room nearby so they have a change of perspective – and often room service or a whirlpool bathtub. Others stay at home and just plan outings for consecutive days, exploring places they have never taken the time to see. If you’re staying at home or nearby you can invite friends or family to join you on certain day excursions or mini-trips. And if you find you’ve over-booked your staycation, it’s a lot easier to slow the pace a bit or take a day off from your staycation if you’re not far from home. However you take a staycation, here are some tips from travel experts: Plan as if it were a true vacation. Block out the calendar, create an itinerary, get away from the phone, and be sure to avoid any doctor’s appointments, errands, chores or responsibilities. Consider yourself a visitor to your own region and identify places you’ve never been or have wanted to revisit. Talk with the Chamber of Commerce and see what they recommend to visitors. Ask the local AAA (if you’re a member) for the free visitor’s guide to your area. Or get a book from the library or a bookstore that’s designed for people traveling to your area. Look for points of interest within a 25, 50, 75 and 100 mile radius, since such distances will make workable day trips. Tell people you’re going to be away. That helps prevent an accumulation of voicemails and emails that could tie you down and destroy the vacation feeling. If you decide to do a staycation from your home, try to eat out as much as you want to. Avoid chain restaurants – unless you particularly like them – and try some new and interesting places. If you opt to take a hotel room in your area, use frequent-flier miles and credit-card points. With bookings down, the awards are easier to cash in this year. Also be sure to ask for specials, like free breakfast or parking, extra room nights, or other benefits. Call the hotel directly to see if you can get a better rate than the one posted on the website. Take lots of photos!  Just because you’re closer to home than on some vacations, the experiences and the memories are just as valuable. Resources The Great American Staycation: How to Make a Vacation at Home Fun for the Whole Family (and your Wallet), by Matt Wixon, 2009. Five Miles from Home and Other Exotic Travel Destinations, by Drew Jones, October 2008. TOP The ALS Association's mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.  Click here to contact your local chapter, certified center or clinic. Questions or comments? E-mail webmaster@alsa.org or call 800-782-4747.