The ALS Association, Greater Sacramento Chapter November 2012 ...

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How you can help Honor a Loved One in the Fight Against ALS Lou Gehrig’s Disease can change a person’s life in a profound way. It’s up to us to inspire others to join the fight against this unforgiving disease by sharing our own personal stories. You can be source of strength and support for the ALS community by creating a Community of Hope Tribute Fund today. The ALS Community of Hope is made up of people diagnosed with the disease, families who guide their loved ones through the effects, children who face the loss of their parents, caregivers who dedicate themselves to easing pain and neighbors who volunteer to help however they can. Create a Community of Hope Tribute Fund today to bring together friends to share stories, provide updates, listen, give encouragement, pay tribute and raise awareness of ALS. Your Tribute Fund has the potential to bring together spouses, friends, children and neighbors in the battle against ALS. And give HOPE to the honoree and their family. Together we can let people with ALS know they are not facing this disease alone. They are part of a greater community, a Community of Hope. Retiring with Meaning - Helping Your Kids & Fighting ALS Odds are high that some or all of your assets are in one or more Individual Retirement Accounts (IRAs) you own. What’s often overlooked in estate planning is that assets in an IRA pass outside your will. Instead, the distribution is governed by the beneficiary designation form you completed when you set up the account. Here are some important points to keep in mind when thinking about how you would like your IRA assets distributed after your death: 1. Because charities, like The ALS Association, can receive IRA assets tax-free, every penny of your hardearned and saved IRA dollars go to find a cure for this devastating disease. Without proper planning, retirement assets may be subject to both estate and income taxes at your death. By donating your IRA, you will receive an estate tax charitable deduction and you can designate less heavily taxed assets to your heirs. 2. If you have not reviewed your beneficiary designation forms for some time it’s a good idea to check them. Be sure you check not only the forms you have on file but also the forms that are on file at the financial company. Most brokerage and mutual fund firms make it easy for you to change beneficiaries. They can send you a form through the mail and often forms can often be found on their website. 3. Remember that it is not necessary to designate 100% of your IRA assets to a single beneficiary. Even a 5% designation to our Chapter can make a significant difference in our ability to provide compassionate care for people living with ALS. For more information or for assistance in making a legacy gift of IRA assets, please contact our Chapter office. The California Tax Check-Off Campaign has successfully raised $124K for The ALS/Lou Gehrig’s Disease Research Fund since January of 2012. 100% of these funds (less the states 10% administrative fees go directly to finding an effective treatment for ALS. In 2013 we will again launch the “Get the 414 on ALS” campaign. We must raise $250K by June of 2013 in order to maintain our voluntary contribution status on subsequent year’s California tax forms. Help us spread the word to friends, family, colleagues, and most importantly your CPA or tax preparer. Ask them to help us find a cure for Lou Gehrig’s Disease and spread the word about the opportunity to give on line 414 in California! 8
Ask the Doc: Q & A with Edward Kasarskis, MD, PhD Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center 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: What is the best way to support your loved one at an ALS Association Clinic appointment A: This is an important question because the role of the caregiver, usually a spouse, is perhaps the single most important factor in effectively dealing with ALS. Dr. Kasarskis In our clinic, we frequently comment among ourselves that we do not really understand how a caregiver physically can do this day in and day out. While most physicians and other health professionals have never actually experienced giving daily direct care to an ALS patient ourselves, here are a few thoughts "from the outside looking in." Caregiving can be overwhelming and exhausting, meeting the physical and emotional needs of someone you love while also managing the details and stresses of running a household, and possibly fulfilling the role of a parent of a school age child in addition. So, how do they do this Preparation. Before you come to the clinic, be prepared. Bring a list of all the medications your spouse, partner, parent, or family member is taking, with the specific doses and other details. Better yet, bring all your medicines in a zip-lock bag. Also be sure to write down a list of all your questions large and small so you’ll really remember to ask them. It’s just like keeping a running grocery list at home so you don't forget anything important when you go to the store. Having the list really helps. Communication. In addition to the questions you bring with you, be sure to ask about anything you don’t understand as you talk with the ALS neurologist, respiratory therapist, physical therapist, nutritionist, occupational therapist, and nurse. If you don’t understand something or if you are unsure how to execute something they’re suggesting, get more information or even ask for a demonstration. This may be particularly true in the case of PT and OT recommendations. Take a notepad and take notes so you can review them later when you have more time. Bring your iPad to watch a video demonstration about transfer techniques. Some suggestions will sound easy enough at the clinic but when you get home, you may find you have more questions. Much of the journey with ALS is on-the-job training. You keep learning new things as the situation changes. Sometimes when you’re in the clinic you’ll find you’ll be working with the ALS team to solve a problem that is specific to you. The most successful caregivers and patients work together with the ALS team to actively problem solve, communicating what they think is the best approach given their circumstances, and what they do and do not understand. Confidence in going forward. The Clinic Team will outline a general roadmap for the future, indicating the next likely challenge and alerting you to the potential solutions. For example, this might be something like, "On the next visit we will be discussing and probably recommending a gastrostomy tube for nutritional support." Sometimes that may be psychologically difficult to hear. Who wants to face a problem before they have to But knowing you’re ready for what may happen next perhaps having a walker ready, or understanding what communication devices will be available to you should you need them helps reduce the innate resistance to change and problems, and ensure you will have what you need when you need it. Confidence in going forward also comes from taking care of yourself physically and emotionally. I know, that’s easier said than done when you’ve got so much on your shoulders. Remember that your health and wellbeing are critical to the health and wellbeing of your loved one. If you get run-down, you risk personal injury and illness while you are helping your family member with ALS. So if you can, get help from someone to assist you in running your day-to-day activities and managing the chores, errands, and hassles of everyday life. Try to minimize fatigue by building in breaks and doing things just for yourself: taking a walk or seeing friends at the corner coffee shop. Having some personal time is priceless and important. Make sure you can regularly have a little respite from your virtual non-stop responsibilities. 9
Page 1 and 2: NOVEMBER 2012 Dear Friend, The ALS
Page 3 and 4: A Letter From Our PALS - Lauren Spe
Page 5 and 6: 2012 Veterans Day 2012 Veterans Day
Page 7: Information & Resources for Patient
Page 12 and 13: Patient Interview: Cathy Speck on K
Page 14 and 15: October Donations. Making a Differe
Page 16: Thank you to our October Donors. Ka

The ALS Association, Greater Sacramento Chapter November 2012 ...

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