December 2014 Monthly Update | The ALS Association Greater New York Chapter

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Easy to Eat Holiday Recipes For PALS

by Ilene Kapelner, Registered Dietician, ALSA Certified Center at Mt. Sinai/Beth Israel Medical Center.

It's once again time to plan the holiday meal. For PALS, it’s important to ensure that a meal is not only nutritional and tasty, but also easy to swallow. Here are some easy to chew dishes modified to add extra moisture and calories.

Another simple way to add moisture and calories is to use gravy, an essential to any Thanksgiving meal. Also, don't forget to balance your 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.

Print out these easy to follow holiday recipes that are seasonal, easy to swallow, and delicious. For more recipes visit our website.

 

Pumpkin Soup

• 3/4 cup water
• 1 small onion, chopped
• 1 can (8 ounces) pumpkin puree
• 1 cup unsalted vegetable broth
• 1/2 tsp ground cinnamon

• 1/4 tsp ground nutmeg
• 1 cup half and half
• 1/8 tsp freshly ground black pepper
• 1 green onion, green top only, chopped

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.

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.

Ladle into warmed individual bowls and garnish with black pepper and green onion tops. Serve immediately.

Cornbread Dressing

• 4 slices white bread
• 5 chicken bouillon cubes
• 1 qt. + 3-1/2 cups water
• 1 cup celery, diced med.
• 1 cup onions
• 5 cups crumbled cornbread
• 3 large eggs, beaten

• 3 large eggs, hard cooked, diced
• 1/4 tsp. salt
• 3/4 tsp. poultry seasoning
• 1/8 tsp. Accent
• 1/8 tsp. black pepper
• 1/2 cup butter, melted

Soak white bread in cold water and drain well. Dissolve chicken bouillon cubes in water. Add celery and onions, cook until tender.

Pour broth mixture over cornbread and let soak until bread is soft. Add drained white bread and beaten eggs. Add diced hard cooked eggs, salt, poultry seasoning, Accent, and pepper. Mix well.

Pour dressing into baking dish and spread margarine evenly over top. Bake at 350 degrees for approximately one hour.

Turkey Loaf

• 1-1/2 lbs. ground turkey
• 1/2 tsp. salt
• 1 cup medium cracker crumbs
• Dash thyme
• 2 eggs, beaten
• Dash marjoram

• 1/2 cup onions, chopped
• 2 tbsps. horseradish
• 2 tbsps. green pepper, chopped
• 4 tsps. Worcestershire sauce
• Chili sauce, as needed

Combine all ingredients, except chili sauce. Mix well and shape this mixture into a loaf in a baking dish.

Score the loaf by pressing top with wooden handle of spoon. Fill the score marks with chili sauce.

Stick a bay leaf in the meat loaf and bake in 350 degrees oven for 1 hour.

Pumpkin Custard

• 1 1/2 cups cooked pumpkin
(see note below)
• 2 large eggs
• 1 1/2 cups evaporated milk
• 1/4 cup flour
(or whole wheat flour)
• 1/2 cup sugar

• 1/2 tsp. ginger
• 1/2 tsp. cinnamon
• 1/2 tsp. nutmeg
• 1/4 tsp. cloves
• 1/4 tsp. salt
• 1/2 tsp. vanilla

(For pumpkin, you may substitute an equal amount of hubbard squash or pured carrots. The squash makes a sweeter pie and sweetening may need to be adjusted to taste for different ingredients.)

Add well-beaten eggs to pumpkin; mix well. Stir in milk. Combine dry ingredients; add to mixture. Add vanilla.

Spray custard cups with nonstick coating, pour in custard. Place cups in pan of hot water and bake at 350 degrees for about 1 hour.

Test with knife blade; cool on rack and do not serve until cooled to lukewarm.


Upcoming Events

Tuesday, Dec. 2 - #GivingTuesday. To kick off the holiday season, the Tuesday after Thanksgiving has been designated as a national day of giving. Make a donation to the ALS Association Greater NY Chapter by going to www.als-ny.org. Then post and tweet using the hashtag #GivingTuesday to tell everyone about the importance of giving!

Thursday, Dec. 4th - Saturday, Dec. 6th - Champions for Charity Holiday Shopping Event. During shopping center hours, 25% of purchases will be donated to our chapter when shopping at Americana Manhasset and select Wheatley Plaza stores. Info: Kristen Cocoman at cocoman@als-ny.org or (212) 720-3048.

Friday, Dec. 5 - Young Professionals Group Fire and Ice Gala. For more info and tickets contact Ally Davis at (212) 720-3049 or adavis@als-ny.org.

Sunday, Dec. 14 - Children and Teens Day (for kids 8 to 18 years of age) Art-oriented program during which kids can make snow globes and collages. By working with an art form, kids may get more in touch with feelings or thoughts they are having about living with someone with ALS. Call Sue Zimmerman, Patient Services Coordinator, at (212) 720-3050.

December
Support Groups

SUFFOLK COUNTY, NY
Tuesday, December 2nd
6 to 8 pm
Stony Brook University
Department of Neurology
179 N. Belle Meade Road
East Setauket, NY
Contact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767
Topic: Holiday Party
Next month’s support group meets: January 6th.

HUDSON VALLEY/FISHKILL, NY
Tuesday, December 2nd
6:30 to 8:30 pm
Ambulatory Surgery Center
Building C, 3rd Floor
200 Westage Business Center Fishkill, NY
Contact: Helen Mayer, RN,
(845) 520-0952
Topic: Open Discussion & Introduction to Patient Service Coordinator, Nancy Brenner, LCSW.
Next month’s support group meets: January 6th

NORTHERN NJ/SADDLE BROOK
Thursday, December 4th
7 to 8:30 pm
Kessler Institute for Rehabilitation
300 Market St., Saddle Brook, NJ
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN, (732) 710-8832
Topic: Holiday Celebration
Next month’s support group meets: January 8th.

NASSAU COUNTY, NY
Sunday, December 7th
2 to 4 pm
North Shore LIJ - Plainview Hospital
888 Old Country Road
Plainview - Downstairs
Contact: Theresa Imperato, RN, (516) 946-5467 & Cindy Keyser-Posner, LMSW, (631) 416-2767
Topic: Holiday Party
Please note: January meeting is cancelled. Support group will resume on Sunday, February 1st.

WESTCHESTER, NY/
WHITE PLAINS

Tuesday, December 9th
6 to 8 pm
Burke Rehabilitation Center
785 Mamaroneck Avenue
Building 7 (Patient Dining Room)
White Plains, NY
Contact: Helen Mayer, RN, (845) 520-0952
Topic: Open Discussion & Introduction to Patient Service Coordinator, Nancy Brenner, LCSW.
Next month’s support group meets: January 13th.

MANHATTAN, NY
Tuesday, December 16th
6 to 8 pm
Phillips Ambulatory Care Center
(Mt. Sinai Beth Israel)
10 Union Square East
(b/w 14th & 15th Sts.)
Neurology Dept., 5th Floor
Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Guest speaker: Jani Nayer from SATH (Society for Accessible Travel & Hospitality)
Topic: Travel is accessible for everyone.
Next month’s support group meets: January 20th.

CENTRAL NJ/NEW BRUNSWICK
Saturday, December 20th
1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Ctr., Level 2
Community Education Room
100 Kirkpatrick Street
New Brunswick, NJ
Park in the Fitness & Wellness parking deck.
Contact: Debbie Schlossberg, LMSW and Mary Ann Mertz, RN (732) 710-8832
Topic: Holiday Celebration
Next month’s support group meets: January 17th.

TELEPHONE SUPPORT GROUPS

Patient group – Meets weekly every Friday from 2:30 to 3:30 pm – alternates between a “talk” group and “mindfulness based stress reduction exercises” (meditation & guided imagery).

Caregivers group – Every Friday from 4 to 5 pm.

If you are interested in either group (patient or caregivers) please call Sue Zimmerman, LCSW at (212) 720-3050.


What is #GivingTuesday?


#GivingTuesday refers to the Tuesday after Thanksgiving, which was created as a national day of giving to kick off the giving season. #GivingTuesday started in 2012 as a response to commercialization and consumerism in the post-Thanksgiving season.

Join us Tuesday, December 2, 2014, as charities, families, businesses, community centers, and students around the world come together for one common purpose: to celebrate generosity and the spirit of giving. It’s simple! Click here and donate to The ALS Association Greater New York Chapter and then post and tweet using #GivingTuesday and tell everyone about the importance of giving! Remember to tag us on Facebook and Twitter when you do!


Ask Ben: How To Widen A Bathroom
Door For Wheelchair Access?


Our bathroom door is too narrow for my mother to get in with her wheelchair. I heard you speak at a support group, where you mentioned something that widens a doorway. What was it?

- Joanna, Westchester, NY

An offset hinge. This is a simple solution, that can add 2" to the width of a doorway (it doesn't have to be the bathroom). When a doorway is built, you get a matching door to fit. A 26" door fits in a 26" wide doorway (adding a 1/4" for spacing). So a 25" wide wheelchair will fit through this 26" wide doorway, right? Wrong. The measurement you really are looking for is not the width of the doorway, but the doorway clearance. The unblocked space of the doorway. When you open a door, the edge of the door, right along the hinge, is blocking part of the doorway. A door edge can take up 2". So in the example provided, a 24" wide wheelchair might just scrape through, but a 25" wide wheelchair will not make it.

An offset hinge replaces the existing hinge. Same holes, same location, same purpose, swinging the door in and out of the doorframe but the unique design of an offset hinge is that it opens the door past the doorframe, not inside the doorframe. You gain 2" of clearance, and have access to the entire width of the doorway.

There are only two conditions that need to be taken into account when considering an offset hinge. First, there needs to be 2-3" from the existing hinge to the next wall. If the existing doorway is right up against the wall, there is no room to place the offset hinge. Second, an offset hinged door will swing 2" further into the room. If there is open space in the room, the larger door swing is unimpeded. But if the current door swings very close to a sink or other fixed position item in the room (less than 2"), using an offset hinge will cause the door to bump into that object, and not open the doorway fully. It may still open the doorway more than a standard hinge, but you would have to measure this out in advance.

Offset hinges may be found in some hardware stores, though many will not know what you are referring to. Large warehouse chain stores have them on-line, as do several on-line hardware websites. Search for offset hinge or swing clear hinge.

- Ben

Ben Lieman, ATP, MSW is the Assistive Technology Specialist with the Greater New York Chapter, advising patients and caregivers about medical equipment, home accessibility, and augmentative communications devices. 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.


Advances in ALS and FTD Genetics Workshop:
Report from the Society for Neuroscience Meeting

The ALS Association booth at this year’s Society for Neuroscience conference in Washington, D.C.

Data, and lots of it, is increasingly seen as critical to finding new treatments for ALS. Data from genes, from tissue samples, and from clinic visits—all of it may hold important clues to what causes amyotrophic lateral sclerosis (ALS), how it progresses, and what determines the onset and development of the disease.

Understanding how best to use and share the emerging mountain of ALS data was the theme of The ALS Association-sponsored Advances in ALS and FTD (frontotemporal dementia) Genetics Workshop, held recently in Washington, DC, in conjunction with the annual meeting of the Society for Neuroscience, the largest gathering of neuroscientists in the world. The meeting was co-sponsored by the National Institute of Neurological Disorders and Stroke, and the Association for Frontotemporal Degeneration.

A key goal of the meeting was to develop partnerships and collaborations to increase data sharing. Data sharing has become even more important with the discovery of the C9orf72 gene, which can cause both ALS and FTD. Researchers who specialize in ALS have a lot to learn from those who specialize in FTD and vice versa.

Data sharing is especially important in the hunt for new genes that cause ALS. Combing the genome for genes that contribute to ALS risk depends on having thousands of samples, so that a weak but important genetic “signal” can rise above the background “noise.” Much of the day’s discussion was devoted to discussing how groups currently seeking new ALS genes can work together, and how clinicians can speed their efforts, through careful documentation at each clinic visit of important patient variables such as strength and respiratory function. When such data from hundreds or thousands of people with ALS is combined, it can help researchers better understand how specific genes contribute to disease progression or protection.

The ALS Association is supporting multiple gene discovery networks and encouraging the sharing of data among them, efforts that have begun to bear fruit in the discovery of new ALS risk genes. Further work will be needed to make even bigger strides in understanding ALS. That work is being carried out by national and international consortia, including Project MinE, the 1,000 Exomes Project, the Biogen Idec Genetics Consortium, the European Early-Onset Dementia Consortium, the NIA-European Collaboration, the Genetic FTD Initiative, and the Mayo Clinic.

“Our goal from this workshop was to maximize data sharing and collaboration,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D., M.B.A. “It was especially important to hear from the scientists on what they need most to make those collaborations productive. We did that and will now continue to accelerate this effort both through our funding and our ability to bring different groups together.”

There's more... To read the full article, please click here.


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.

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.

For information about the next general meeting of the Young Professionals Group please email alsypg@gmail.com.

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

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

Advocate

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 John Nolan at (212) 720-3051 or jnolan@als-ny.org.

Volunteer

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 click here to learn how you can help people with ALS. You can also call Christine Dunn at (212) 720-3044 or email: dunn@als-ny.org.

Donate

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 or contact John Nolan at (212) 720-3051 or jnolan@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.

Connect

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.

Learn more:  Research | Blog | How to Help 


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