Greater New York Chapter Expands Patients Services with the Introduction of 2 New Support Groups

The Greater New York Chapter is proud to announce the addition of support group services in the Bronx and Queens.

The newly formed support Group in the Bronx will be held at the VA Hospital. Both Veterans and non-veterans, family, and friends are all welcome. The group will be lead by a member of the VA staff and a member of the Greater New York Chapter and will take place on the second Wednesday, monthly from 1-3 PM at the James J. Peters Medical Center at 130 W. Kingsbridge Rd, Bronx, NY 10468.

The Greater New York Chapter will also be holding the first Queens Support Group on June 21st from 6-8 PM at  SilverCrest Center for Nursing and Rehabilitation 144-45 87th Ave., Briarwood, NY 11435. Friends, family and PALS are all welcome to attend. This support group will be held every third Wednesday of the month from 6-8 PM.

Five Boroughs NYC Map with new ALS Support Groups highlighted in Bronx and Queens

“The addition of these two support groups provides a needed service that allows both PALS and family to access support in their borough, and closer to home. This will help fill a gap especially for our families in Queens. Travel is not easy for many of our PALS and their caretakers and families. We want everyone in our area to have access to the support and care they deserve,” Michelle McKenzie, Patient Services Coordinator said.

For questions regarding the new support groups you can contact Michelle McKenzie at MMcKenzie@als-ny.org or 212.720.3045.

Hospital for Special Surgery Program Expanding from Half to Full Day Clinic

The ALS Association Greater New York Chapter and the Hospital for Special Surgery are proud to announce additional clinic sessions at the Association’s Certified Treatment Center. The expansion of services will ensure that more ALS patients in our region have access to comprehensive care.

“We are excited to expand our multidisciplinary care ALS clinic to an additional day. Our clinics strive to provide high quality care, support and information for those living with ALS and their caregivers with the support of the Greater NY Chapter,” Dr. Dale Lange said.

One clinic will be reserved for new patients, the other for established patients. The current clinic is held on Wednesday afternoons. The additional HSS clinic will be held on Tuesdays at 12:30PM. For more information and/or to schedule an appointment you can call 646.797.8917 or 212.774.2361.

For PALS, Communication is Key When Teaching About Patient Needs

IMG_5336Social Worker Lois Lipper was recently invited to join Helen Mayer, RN, and Nancy Brenner, LCSW, Greater New York Chapter Patient Services Coordinators in conducting an in-service training for the staff of Victoria Home, a nursing home in Hudson Valley, NY. The goal was for Lois, who was diagnosed with ALS in 2012, to help those health care professionals caring for people with ALS to understand first-hand what it’s like to live with Lou Gehrig’s Disease.

Victoria Home nursing home is a private home-like environment built over 100 years ago. Through a grant from the New York State Department of Health, the facility was able to take on the challenge of building a special unit to provide care for people with neurodegenerative diseases such as ALS and Huntington’s Disease.

Once committed, the staff was determined to learn everything they could about caring for ALS patients and contacted The ALS Association Greater New York Chapter for assistance. In-service training is a service provided to health care facilities at no cost as part of the Chapter’s patient service programs.

Victoria Home Assistant Administrator Biljana Stojadinovic, MSPT, LNHA, said it was a valuable experience to have Lois present to them. “It’s one thing to talk about ALS patients but it’s different to have an ALS patient in front of you telling you what it’s like,” she said. As a health care professional herself, Lois wanted to ensure people who care for PALS understand them physically and psychologically. “I wanted them to know the internal experience of the disease and the things that they never have thought about before,” she said.

Victoria Home hopes to provide care for as many as 25 people with ALS. That comes with a different set of skills that they are developing with the help of the Greater New York Chapter through in-services on several topics including equipment, speech, swallowing, and nutrition. “They’re a very devoted group who want to do their best in implementing what they have learned,” said Nancy.

The biggest impact was having an ALS patient speak with them. “It gave our staff a different perspective,” Biljana said. “The care level for an ALS patient is going to be different than what we are dealing with now.”

Lois said one of the most important things about working with ALS patients is the value of communication. “It’s not just that you can’t move; it’s not being able to be understood and how disconnected that makes you feel,” she said. Lois is committed to education. She finds it gratifying to teach those who will care for PALS. “I think the more we reach out and are understood the more support we’ll have from the community.”

Would she do it again? “Absolutely,” Lois said. “I think it’s important. It felt good to know I was helping ALS patients to be understood in some small way.”

If you would like more information about our in-service program or would like to request an in-service training, please click here or call the Patient Services Department at (212) 619-1400.