November is National Caregivers Month! 

This month we honor all caregivers, who are on the front lines of the fight against ALS and see the ravages of the disease every single day. The men and women who care for their mother, father, spouse, grandparent, neighbor, friend, or child do so with determination, compassion, and a will from which they must summon enough strength for themselves and for their loved ones. Here is one such story, of a family on Long Island.

Maria Guercia, 47, resides in New Hyde Park on Long Island with her husband Roland, who is living with ALS and will turn 50 later this month. They have two children a daughter Alexa, 17, who is a senior in high school and plays on the varsity field hockey and lacrosse teams, and a son Jake, 12, who is in the 7th grade and plays quarterback for the football team. Maria and Roland have been together 26 years and married for 22 of those years.

In our interview with Maria, she was able to offer some key advice about being a caregiver. First, say everything upfront. Don’t hold back on the love and the hurt and all that you feel. Put it all out there so you can move on with the care and move on with your lives. Roland has accepted ALS, but has not accepted dying. He is living and will continue to do so until he can no longer. Maria also urges those newly diagnosed and their families to “make the call.” Talking to the ALS Association Greater New York Chapter “made a world of difference.”

Life began to change one day when Roland, an extremely good cook according to Maria, was making his famous chili. As someone who was ambidextrous, Roland could maneuver a number of pots and pans with ease, but that day in early 2009 he began to have trouble turning some pots with his left hand. After months of falling, difficulties using the computer, and experiencing problems with his speech, Roland was diagnosed with ALS in September of 2010. Just a year later, confined to either a wheelchair or to bed, Roland developed pneumonia and was hospitalized for nearly three months. He thankfully beat that bout and returned home.

Since then Roland requires around-the-clock care. Home care nurses provide excellent care to Roland while Maria continues to work and provide for the family. The Guercia family has had tremendous support thus far, but not without fighting for it. As a relatively young couple, so many of their needs are supported by what many deem as “elder care,” making it difficult with insurance and service providers to fully comprehend their initial needs. Because of this ordeal, their daughter is now considering a career in nursing.

There are a number of measures that go into caring for a person to keep them well in the face of ALS, but there is even more effort needed to ensure they’re able to live life to its fullest. Maria says that the Hoyer Lift, wheelchairs, and eye gaze assistive communications device, all loaned through the Chapter, at no cost, have been a “godsend.” With the help of a Hoyer Lift, Maria and Roland can still sit on the porch and watch their son shoot hoops, much like his dad did, when he played Division II basketball.

While facing the situation bravely, Maria admits that it’s not easy. She’s happy that their children are better emotionally than she would have thought and love to come home to dad. And despite facing the disease head on day after day, she does not see her husband as “Roland ALS,” but still looks upon him as her loving husband, especially when he flashes his smile.

The hardest part for Maria is the fact that her husband cannot talk to her. The tender whispers, simple hellos, and supportive cheers at a kid’s game will never be heard again and losing that is devastating. Additionally, it is difficult to see others in pain. For those friends and family that visit, seeing the pain on their faces and in their voices is heart breaking. But breaking through that pain and the knowledge that life will never be normal again, is Roland’s smile. He can thankfully still do that and every time he does, even for just a second, Maria sees her soul mate for who he really is.

Please stay tuned to the Greater New York Chapter’s Facebook page -- www.facebook.com/ALSofGNY -- and see other stories throughout the month of November.

Caring for Caregivers

November is National Caregivers Month a time to be thankful for the caregivers in our lives and to remember those that continue to struggle with everyday finances while remaining the strong support in a family affected by ALS. We all know how important caregivers are in the lives of PALS; they are the dedicated force making the life of PALS a bit more comfortable.

Please take this time to show your thanks for the caregivers in your life by making a donation to help another. Your gift, however small, will speak volumes to show our caregivers they are not in this alone.

For information on donating, please contact Loren Domilici, Development Manager at (212) 720-3060 or ldomilici@als-ny.org.

Veterans Day Tribute

The month of November also marks a special time in the life of our nation’s veterans. As we commemorate Veterans Day we reflect on our military heroes who fought valiantly for this country and sacrificed so much in the name of freedom. We in the ALS community are especially mindful of our veterans, as those who serve in the military are twice as likely to develop ALS, regardless of branch of service or combat duty status.

For those veterans living with ALS, there is a wonderful opportunity to talk about your military service and about ALS in your own words. The national office of The ALS Association maintains on their website the Wall of Honor to salute our military heroes living with ALS. We encourage all veterans to visit the site and tell your story.

To all veterans, we salute you.

November Support Groups

All groups will be honoring our wonderful caregivers. Thanks to all of you who give so much. Each one of you is an inspiration!

SADDLE BROOK / NORTHERN NJ
CANCELLED DUE TO HURRICANE SANDY 

NASSAU COUNTY, NY
Sunday, November 4th
2 pm to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road, Plainview (Downstairs)
Contact: Theresa Imperato, RN,
(516) 946-5467 & Jody Wiesel, PhD
(917) 699-9751

SUFFOLK COUNTY, NY
Tuesday, November 6th
6 pm to 8 pm
Stony Brook University
Dept. of Neurology
179 North Belle Meade Rd,
East Setauket
Contact: Theresa Imperato, RN, (516) 946-5467

HUDSON VALLEY, NY
Tuesday, November 6th
6:30 pm to 8:30 pm
Vassar Bros. Medical Mall
Ambulatory Surgery Center
Bldg C, 3rd floor
200 Westage Business Center
Fishkill, NY
Contact: Helen Mayer, RN,
(845) 520-0952

NEW BRUNSWICK / CENTRAL NJ
Saturday, November 17th
1 pm to 3 pm
Robert Wood Johnson University Hospital
Medical Education Bldg,
Room 108A
180 Somerset Street
Follow signs to meeting 
Contact: Debbie Schlossberg, LMSW
and Mary Ann Mertz, RN,
(732) 710-8832

MANHATTAN, NY
Tuesday, Novmber 20th
6 pm to 8 pm
Phillips Ambulatory Care Center (Beth Israel)
10 Union Square East
(b/w 14th & 15th Streets)
Neurology Dept. - 5th Floor Conf. Room
Contact: Jody Wiesel, PhD,
(917) 699-9751

TELEPHONE SUPPORT GROUPS
Caregivers: Fridays - 11am to 12pm
Patients: Fridays - 3pm to 4pm
Contact: Sue Zimmerman at
(212) 720-3050

For more information about our Support Groups go to the Chapter website: www.als-ny.org, Patient Services section or call (212) 619-1400.

In recognition of National Caregivers Month, I dedicate this month’s edition of Ask Ben to caregivers and equipment that makes caring for someone with ALS a little bit easier physically.

This question is from not just one person, but many caregivers out there who simply do not have the physical strength to properly lift their loved one with ALS to where they need to be, be it the bed, wheelchair, shower, or commode. Here are some ideas on the patient lift.

Many people are put off by patient lifts, as it makes their home look too much like a hospital. This is generally not a statement on décor, but rather a state of mind that the disease is progressing further and this next step, though necessary, is a stark everyday reminder of the medical necessities associated with ALS. That is completely understandable, however, one of the main aspects of a patient lift in a medical facility, is to protect staff from injury. The same is true in the home and caregivers must care for themselves, so as to prevent injury and be able to care for their loved one as long as they can.

The process of transferring someone from a bed to a wheelchair is tremendously strenuous on one’s back. Our backs are designed to best lift when upright. And when that is not an option, we often hear ‘bend your legs, not your back.’ Aches and pains (or worse) are common if we do not mind these guidelines.

Getting someone out of bed into a chair, wheelchair, commode, etc. requires bending over them to get a good grip, pulling them up, or shifting their weight. When letting them down gently, our backs again are bending and straining. These efforts are minimized when the person needing assistance can actually help with the sitting up, standing, or lowing oneself into a chair. But as their strength or balance diminishes, as they become more dependent, to get into the right position, the level of effort shifts from them…to you, the caregiver.

A patient lift is not a panacea to solve all the challenges of lifting and transferring, but it does diminish the strain placed on a caregiver’s body. Most lifts are in the form of a sling (a piece of durable cloth attached to a mechanism), which can be securely placed under the person needing assistance. The sling is then connected to a bar, and with a few ‘pumps’, this bar is raised with the person still in the sling. Pumping efforts are minimal. Once the person is lifted off the surface of the bed or chair, the entire apparatus can be rolled, to let the person down gently onto a wheelchair, toilet, bed, etc.

Manual patient lifts are typically available through insurance. There are motorized lifts as well, and we have both types available through our equipment loan program. Ask your physical or occupational therapist or your nurse if you think a patient lift might be beneficial for you. And please feel free to contact me if you have any questions.

- Ben

To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.

Thanksgiving Bounty

By Ilene Kapelner, Registered Dietician, ALSA Center at Beth Israel Medical Center

It’s once again time to plan the Thanksgiving meal. For PALS, it is important to ensure that a meal is not only nutritional and tasty, but also easy to swallow. Besides the favorite roasted turkey recipe, here are some easy to chew, traditional dishes modified to add extra moisture and calories for the whole family to enjoy. One simple way to do so is to add gravy, an essential to any Thanksgiving meal. Also, don’t forget to balance you menu with plenty of autumn fruits and vegetables such as: squash, spinach, and cranberries all high in vitamins A, B, and C, potassium, antioxidants, and fiber. The holiday is all about celebrating with all your family, and friends, so relax, enjoy, and be thankful!

Her are two starters to the meal that are seasonal, easy to swallow, and delicious:

Pumpkin Soup

Ingredients: 3/4 cup water, 1 small onion, chopped, 1 can (8 ounces) pumpkin puree, 1 cup unsalted vegetable broth, 1/2 teaspoon ground cinnamon, 1/4 teaspoon ground nutmeg, 1 cup half and half, 1/8 teaspoon freshly ground black pepper, 1 green onion, green top only, chopped.

Directions: 1) In a large saucepan, heat 1/4 cup of the water over medium heat. Add the onion and cook until tender, about 3 minutes. Don't let the onion dry out. 2) Add the remaining water, pumpkin, broth, cinnamon and nutmeg. Bring to a boil, reduce heat and simmer for 5 minutes. Stir in the milk and cook until hot. Don't boil. 3) Ladle into warmed individual bowls and garnish with black pepper and green onion tops. Serve immediately.

Pumpkin Pie Smoothie

Ingredients: 1 can (15 Ounce) Pumpkin Pie Filling, 3 cups half and half (more If Needed), 1/2 cup Vanilla Yogurt (up To 1 Cup), A Few Dashes Of Cinnamon, 2 tablespoons brown sugar, Cinnamon Graham Crackers, Crushed.

Directions: 1) Well ahead of time, place pumpkin pie filling into a freezer-safe container. Freeze for a few hours or until frozen solid. 2) To make the smoothie, add half and half, yogurt, and brown sugar into a blender. Drop in the frozen pumpkin pie filling and blend until the frozen filling is completely pulverized. Add more half and half or yogurt as needed to get it the consistency you'd like. 3) Pour into individual glasses and sprinkle the tops with graham cracker crumbs. Serve immediately! *Can also sprinkle with cinnamon and/or nutmeg instead of graham cracker crumbs.

For other takes on traditional Thanksgiving recipes, such as Sweet Potato/Marshmallow Casserole and Apple Crisp Cheesecake along with a print out of the recipes above click here (PDF).

On Your Mark, Get Set…GO TEAM ALS!

Sunday, November 4th marks the 43rd annual ING New York City Marathon. The marathon is the ultimate pinnacle of personal perseverance, determination, endurance, and will. As in previous years, the 2012 marathon will include runners with extra spirit and heart, as they run to raise funds and awareness for ALS. Known as Team ALS: Running 4 A Cure, over a dozen runners seek to raise a combined total of $100,000 to benefit patient services and to fund cutting-edge research to find a cure.

Among those participating is Dorothy Halsey. Dorothy ran the marathon last year in honor of her family friend Mark Kravitz. This year, she runs in his memory, as he died on September 30th. He was her Dad's college roommate and her brother's godfather, as well as a U.S. District Court Judge and was 62- years-old. Dorothy has trained all summer and has raised over $13,000. Her goal for this year is $15,000.

And for the third year in a row, Craig Williams is running in the marathon in memory of his brother Paul, who lost his battle with ALS in June 2010, just 13 months following his diagnosis at the age of 44. Originally from Australia, Craig now lives in Mountainside, New Jersey.

To meet other Team ALS members and hear their stories, check out the Chapter's Facebook page in the week leading up to the marathon. Click here for more information on Team ALS.

Strong Walk Season Finale in the Hudson Valley 

The Hudson Valley Walk to Defeat ALS on October 21st was the final Walk of the 2012 season and with record-breaking attendance and fundraising, it was a truly spectacular day! Approximately 1,400 Walkers attended this year’s event at the very scenic Walkway Over the Hudson, and in just four years is one of the highest growth Walks in the country. A total of 90 Teams helped to raise over $170,000 to support patient services and programs in the Hudson Valley area, nearly double the amount raised in 2011! Families, friends and loved ones joined together for a day filled with great music, food, fall foliage, and fun for everyone, all while raising awareness and funds to help defeat ALS!

National ALS Registry

It's been two years since the National ALS Registry opened through the Centers for Disease Control & Prevention. The federal government continues to make major strides in the Registry, updating questions on the various surveys and informing those with ALS about the tremendous usefulness of this tool. As the third year unfolds, we should begin to see some of the preliminary results from the Registry and get one step closer to finding the causes of the disease and therein ways to treat it and stop it all together.

If you are living with ALS and have not yet enrolled, please do so today. If you have enrolled, but have not completed the full array of surveys, it is important that you do so and provide as much information as possible. Please visit www.cdc.gov/als.

For more information about the registry go to www.als-ny.org or call the Chapter office at (212) 720-3044 and ask for Chris Dunn.

In Need of Help?

If you are a patient, caregiver, or family member and need a little help to lighten your work load please contact us and we will request a volunteer for you. Volunteers can help in many ways - from walking your dog, shopping, or just reading aloud.

If you live in New York please contact Christine Dunn at (212) 720- 3044 or dunn@als-ny.org. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or schlossberg@als-ny.org.

The Greater New York Chapter website now has information on ALS and Chapter services in Spanish.  If you know someone with ALS who may need information in Spanish, please refer them to www.als-ny.org/espanol.

We need volunteers to help our patients and their families. Some PALS may need help with daily tasks; families and caregivers of our PALS may need help as well to lighten their work load a bit. There are so many ways to help - from watching a video together or reading, or even helping with some household chores.

If you are looking for a way to get involved please call Christine Dunn at (212) 720-3044 or email: dunn@als-ny.org for New York, or Debbie Schlossberg at (732) 710-8832 or email: schlossberg@als-ny.org for New Jersey.

Make a generous gift to find a cure and fund life saving research and to provide much needed equipment and services. To make a donation online, please click here. Call Loren Domilici, Development Manager, at (212) 720-3060 or email ldomilici@als-ny.org. To mail a donation, please address to: The ALS Association Greater New York Chapter, 42 Broadway, Suite 1724, New York, NY 10004. Thank you for your generous support.

The Greater New York Chapter continues to be on the front lines of policy debates that shape the lives of people with ALS. From healthcare to research to veterans affairs, The ALS Association Greater New York Chapter is at the table on the federal, state and local levels of government making the concerns of ALS patients and their families and caregivers known. If you're interested in joining our advocacy efforts, please contact Daryl Cochrane at dcochrane@als-ny.org or (212) 720-3051.

The YPG generates awareness of the fight against ALS (Lou Gehrig’s disease) by developing fun, sophisticated and meaningful opportunities for their peers to get involved in the cause.

Stay tuned for details on the next YPG event.

For information about the ALS Association's Young Professionals Group and upcoming meetings, please click here.

Find out instantly about the latest in ALS research, advocacy efforts, special events, and patient services. Additionally, if you or a loved one have a blog about living with ALS, please let us know.  Stay connected.

You can find our chapter on many social media websites: Facebook | Twitter | ALS Blog | YouTube | LinkedIn. Find our Walk to Defeat ALS department on social media too: Walk Facebook Page | Walk Twitter.