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

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November is National Caregivers Month Self-Care Tips Every Caregiver Should Know

by Sue Zimmerman, LCSW and Lindsay Levine, SWI

Caregivers month is quickly approaching. The National Alliance for Caregiving estimated during the past year, 65.7 million Americans served as family caregivers for an ill or disabled relative. With numbers that high, it is important to recognize that you are not alone. Caregiving is demanding, a task best done with support and self-care. With caregivers often times feeling overwhelmed and underappreciated, it is important to recognize the importance of caring for one’s self while caring for a loved one. Here are some self-care suggestions from The ALS Association Greater New York Chapter.

3 Self-Care Tips Every Caregiver Should Know:

Communication is vital for caregivers. When caregivers can express how they are feeling, they are able to better manage their stress and feel better. It allows an emotional release for many. Try to find one or two confidants with whom you feel comfortable sharing your thoughts and feelings. Caregiver support groups, as well as seeking individual professional supportive counseling can be extremely beneficial.

Value yourself. Take time to note the selfless work you are doing. Recognize it is okay to take a break from your loved one to do something you are passionate about. Did you have a weekly or monthly activity that you used to do prior to becoming a caregiver? Did you meet friends for a movie? Attend a book club? Have a cup of coffee at your local favorite café? Give yourself the time to continue your activities. Caring for yourself will allow you to better care for your loved one.

Ask for help. Sometimes even the strongest superheroes need support. Do not be afraid to ask a friend or member of the community for help. Make a list of people you can call when you are in need. Often, religious institutions have a list of people who are willing to volunteer their time. The ALS Association Greater New York Chapter has a volunteer home visit program. This program provides social and functional assistance to both the patient and the caregiver(s) to help improve and enrich their daily lives and meet their needs without additional expenses. For more information about this program, please contact Chris Dunn, Patient Program Coordinator at (212) 720-3044. Many volunteers are grateful to have the opportunity to help another person in need.

For more information on self-care, contact Lindsay Levine, SWI (212) 720-3045 or Sue Zimmerman, LCSW (212) 720-3050 in the Patient Services Department at The ALS Association Greater New York Chapter.



Upcoming Events

Sunday, Nov. 2 - New York City Marathon Join our cheering section at 85th and 1st (SW corner by the Starbucks).

Tuesday, Nov. 4 - 20th Annual Lou Gehrig Sports Award Benefit. Contact Kristen at cocoman@als-ny.org or (212) 720-3048 for information.

Saturday, Nov. 15 - Holiday Boutique Fundraiser supporting The ALS Association and Walk team, Jack's Pack. Contact Sarah at (212) 720-3042 or spattison@als-ny.org for information.

Friday, Dec. 5 - Young Professionals Group Fire and Ice Gala at the Waldorf Astoria. Click here to purchase tickets. For more information: Call (212) 720-3049 or adavis@als-ny.org.

November
Support Groups

This month all Support Group topics will be about Caregivers. Caregivers meet the needs of others with tenderness, care, & dedication. You truly make a difference in your loved one’s life – Thank you for all you do!

NASSAU COUNTY, NY
Sunday, Nov. 2nd - 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
Next support group: Dec. 7th

SUFFOLK COUNTY, NY
Please note change in date
for this month

Tuesday, Nov. 11th - 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
Next support group: Dec. 2nd

HUDSON VALLEY/FISHKILL, NY
No meeting in November.
Next support group: Dec. 2nd

WESTCHESTER, NY/
WHITE PLAINS

Tuesday, Nov. 11th - 6 to 8 pm
Burke Rehabilitation Center785 Mamaroneck Avenue
Building 7 (Patient Dining Room)
White Plains, NY
Contact: Helen Mayer, RN
(845) 520-0952
Next support group: Dec. 9th

NORTHERN NJ/SADDLE BROOK
No meeting in November.
Please accept this invitation to attend the group in New Brunswick on November 15th
(See information in next listing.)
Next support group: Dec. 4th

CENTRAL NJ/NEW BRUNSWICK
Please note new time and location.
Sat., Nov. 15th - 1:30 to 3:30 pm
Robert Wood Johnson
Fitness & Wellness Center
Level 2, Community Education Rm
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
Next support group: Dec. 20th

MANHATTAN, NY
Tuesday, Nov. 18th - 6 to 8 pm
Phillips Ambulatory Care Center
(Mt. Sinai Beth Israel)
10 Union Square East
(b/w 14th & 15th Sts.)
Neurology Department
5th Floor Conference Room
Contact: Jody Wiesel, PhD,
(917) 699-9751
Next support group: Dec. 16th

TELEPHONE SUPPORT GROUPS

Patient group – meets weekly every Friday from 3 PM to 4 PM – alternates between a “talk” group and “mindfulness based stress reduction exercises” (meditation & creative imagery)

Caregivers group – Will start Friday, November 7th – meets every week from 4 PM to 5 PM.

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


Walk to Defeat ALS Has Record-Breaking Year


The Greater New York Chapter’s Walk to Defeat ALS program had another record-breaking year in 2014! Due to the overwhelming attendance of over 15,000 walkers and the incredible fundraising efforts of our 850 teams, our seven Walks have raised a combined total of $2.4 million to date. Click here to read more.


Ask Ben: What Is The Proper
Placement For Shower Bars?


My husband is beginning to be nervous about standing in the shower. He had Bulbar ALS, but it is now affecting his walking. We have a walk-in shower, and he can still step in himself. But since he has fallen outside the house a couple of times, we want grab bars to keep him steady in the shower. Where do you recommend we place them?

– Iris, Nassau County, NY

Iris, your question focuses on grab bar placement, but it also is about safety. There are specifications for grab bars: 1.5-inch in diameter, 1.5-inch away from the wall and any other object (so your fingers don’t get squeezed), 33-36-inches above the floor as a starting point, but the height of a grab bar really depends on the person’s height and arm length, and of course needs to be properly secured to the wall. I would suggest a textured finish to provide a better grasp. A vertical grab bar can be placed at the entry point to the shower, and another one placed horizontally along the wall opposite the shower door.

While grab bars can certainly add a degree of confidence and stability, they do not replace balance. A couple of falls is an indicator to start thinking of sitting when showering. Grab bars transfer the body’s ability to stay standing, from the legs to the arms. The potential for a fall is still present. Sitting reduces the potential for an accident. Folding bath seats may be attached to the wall, or a portable bath seat can usually be placed, inside a shower area.

Another circumstance to consider with walk-in showers is the lip to step over. Should it be difficult to step over the lip, and the entry way is wide enough, you can remove the glass shower door and replace it with a shower curtain. This will allow a tub transfer bench to straddle the shower lip. You can then sit on this bench outside the shower, and slide over the lip while still sitting. Raising your legs while sitting is easier than stepping over the lip and holding onto a grab bar. You’ll have to be creative to place and cut the shower curtain to minimize water spraying out of the shower area.

Grab bars do provide some stability, but a seat reduces the risk of falling.

- 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.


Flu Season: What You Need To Know

As we welcome a change of season, we also anticipate an unwelcome visitor, the influenza (flu) virus. The flu is a contagious disease, and according to the Centers for Disease Control and Prevention (CDC), it is spread through sneezing, coughing and close contact.

Symptoms of the flu are a sudden onset of fever, muscle aches and pains, fatigue and headache. Complications of the flu may include dehydration, sinus infection or bacterial pneumonia. This unwanted visitor will definitely overstay its welcome!

According to the CDC, it is important to get the flu shot every year because the influenza virus mutates over time, and every year the flu vaccine is designed to protect against three to four viruses that are believed to cause disease that year. It can take up to two weeks for your body to build up antibodies to fight the flu after receiving the vaccine. You are at higher risk of contracting the flu if you are not vaccinated.

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

This article was written by Nicole Yarab for The ALS Association.


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 Kim Peters at (212) 720-3054 or kpeters@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 for New York, or Debbie Schlossberg at (732) 710-8832 or email: schlossberg@als-ny.org for New Jersey.

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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