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.
To ask Ben a question, simply email him at firstname.lastname@example.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.
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:
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
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.
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 email@example.com. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or firstname.lastname@example.org.
Información en Español
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.
MAKE A DIFFERENCE
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: email@example.com for New York, or Debbie Schlossberg at (732) 710-8832 or email: firstname.lastname@example.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 email@example.com. 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 firstname.lastname@example.org or (212) 720-3051.
Join our Young Professionals Group
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.
To unsubscribe to this newsletter change your email preferences: click here.