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.

NEW ALS Support Group: Westchester County, NY

The ALS Association Greater New York Chapter is proud to announce its newest monthly support group – in Westchester County. With the addition of this group, the Chapter now holds seven support groups each month throughout New York and New Jersey. Our support groups allow patients, caregivers and other loved ones to share their thoughts and feelings in a safe and confidential environment with other people impacted by ALS. Each month we enlist experts in various disciplines and allow for frank, open discussion, which can provide emotional and practical support.
Our first Westchester support group will meet on Tuesday, June 11th from 6:00pm-8:00pm at the Burke Rehabilitation Center located at 785 Mamaroneck Avenue; Main Hospital, Building 7, First Floor, Conference Room G-41 in White Plains, New York. We will continue to meet at this time and place on the second Tuesday of each month. For more information, call Patient Services Coordinator Helen Mayer, RN at (845) 520-0952.
We look forward to seeing you on June 11th in Westchester or at one of our other 6 monthly groups!

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Special Support Group Meeting for Newly Diagnosed PALS at Robert Wood Johnson.

October’s support group meeting at Robert Wood Johnson University Hospital will be designed especially for PALS and families who have been diagnosed within the past 10 months. The goal of the special meeting will be to provide basic information and share resources which are of particular relevance to individuals at the beginning of the ALS journey. Information will be available on The ALS Association and its services as well as facts about ALS, basic home care, information of interest to Veterans, caregiving, and advocacy. If you have questions about clinical trials, the multi-disciplinary approach of ALS clinics, commonly used equipment and devices, and coping, this will be a safe place to get your questions answered by others who share your experiences and the professionals who partner with them.

NEW BRUNSWICK, NJ
October 17, 2009 1:00-3:00 PM
Support Group for the newly diagnosed.
Robert Wood Johnson University Hospital
Medical Education Building, Rm 108A
180 Somerset Street, Follow signs to meeting.

For more information, contact Debbie Schlossberg, Patient Services coordinator at schlossberg@als-ny.org.

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Why Go To A Support Group?

by Fern Cohen


When I used to tell people I attend 2 monthly support groups for ALS, and log onto a few support group lists online [including ALSA’s “Aspire” and Yahoo’s “Living With ALS” online group] I met with very disturbing responses, such as “Isn’t that too depressing?”, “I would never do that!”, or “Do you share sob stories, and is there a lot of crying?”. One friend battling cancer, gave me the most thought-provoking comment of all: “I want to forget I have cancer, so I don’t want to talk about it or hear about it any more than I have to. As a matter of fact, I want to go places where nobody knows that I have cancer”. I thought about all those responses — especially the last one — and came up with some valid reasons why patients with ALS [PALS], caregivers [CALS], and family and friends of PALS and CALS are different, and why support groups are a positive move in the ALS community.

I attend two meetings a month — one sponsored by the ALS Association of Greater New York [ALSA of GNY], and one by the ALS division of a major organization for neuromuscular diseases, and following are the reasons why:

PALS don’t have the option of going anywhere to hide their ALS. My friend was lucky because he was already bald, so hair loss wasn’t an issue, but many cancer patients can’t hide their disease either, especially women, or patients who lose a lot of weight. PALS, however, always look different from the way they looked before ALS, no matter what stage of the disease they are in, or which onset they have — limb or bulbar. ALS is out there, never in the closet. So you might as well meet other people who can’t hide it either, and share stories of how it is to be different, and to be treated, suddenly, totally differently than before. Soon, you will find you are not so different; there are people out there just like you. If you are a CALS, your issues are different from your friends who cared for elderly parents, or relatives with other diseases. There are other people out there who share your unique issues.

ALS is relatively rare. Most people will go through life never meeting a PALS or a CALS, but try to find anyone whose life has not been touched by cancer, diabetes, or heart disease, either directly or through a friend or relative. And almost everyone knows someone touched by MS, Parkinson’s, AIDS, or diabetes. Nobody can understand what you are going through with ALS, like a person going through it himself. Sometimes, the only place you will find this, is in an ALS-specific support group. When I try to talk about ALS with friends outside the ALS community, I hear all kinds of meaningless platitudes. They don’t understand, and they can’t be expected to. Without my own ALS community of PALS, CALS, and supporters of friends with ALS, I would be frustrated and alone.

Sometimes we learn more from peers than from doctors and other health-care professionals. “Is this normal?”, “Should I worry/be concerned about ______?”, or “Has anybody else experienced ____________?”, are common questions asked at my support groups. Problems, issues, side-effects, remedies, frustrations, or even joys of PALS or CALS, dealing with aides, bi-paps, medicines, spasms, breathing, family, friends, the community, or anything or anybody affecting our ALS lives, can often be more beneficial coming from the people who deal with ALS every day. And, often, doctors and health-care professionals get their information from PALS and CALS anyway.

And, lastly, there’s more happening at a support group than crying, whining, and complaining Most support groups have guest speakers from time to time. They might be healthcare professionals speaking about respiration, nutrition, research, or other ALS-specific issues. Speakers also may come from organizations that service PALS, provide advocacy, or raise money. Speakers may be eldercare attorneys, suppliers of assistive technology, or practitioners of alternative therapies or spirituality. Whatever the topic, there is something to learn, or new developments you will want to know about.

Is there crying, whining, and complaining at support groups? Yes, there is some of that, because support groups are safe places for these emotions. Sometimes, it’s the only place for PALS or CALS to find others who can relate in a non-judgmental way. But there is camaraderie, inspiration, useful information, and even humor. If you can’t travel to a support group, join an online group. You will be amazed at how good it will feel, to have a place to express your concerns, and even help others with theirs. Being part of the ALS community will relieve you, empower you, and un-isolate you.

Fern Cohen is a former teacher and a writer with ALS. She frequently writes guest posts for The ALS Association Greater New York Chapter’s blog. Read Fern’s blog, “Forced to Sit Still and Shut Up — Life Before, and During ALS” at http://xr.com/fern. You can also follow Fern on Twitter at http://twitter.com/fec139.

To visit the ALS Association Homepage and learn more about ALS, click here.

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What Do I Do? What Do I Say?

By Fern Cohen


In 1976, my mom was diagnosed with breast cancer. I remember that, back then, any kind of cancer scared people. In my house we never said the “C” word, as if its very utterance could spontaneously sprout malignancies to anyone in the room at the time. Cancer is not contagious; I think most people would say “duh” at that statement. But back when my mom got it, it might as well have been infectious. Many of the people who were present in my parents’ lives, stopped coming around or even calling. And, if they did come to visit, I could sense the awkwardness, the whispering, the looks. But one thing stuck in my brain: a long-time friend called my mom and said “I hope you’ll understand if we don’t come to see you, but we just don’t know what to say.” I was 21 at the time, and I remember thinking “huh?” I was raised to go to funerals, make condolence calls, visit the sick when appropriate. But it occurred to me that in some families, these matters weren’t addressed. In a generation, awareness of cancer has come a long way. With ALS, we still have a long way to go.

When I was diagnosed with ALS in 2004, I received a myriad of responses. As my disease has progressed, the loss of speech and confinement to a wheelchair has presented me, and people around me, with new challenges. At my support groups, I learn that I am not alone. Every time I attend support groups, I wonder how many PALS [People with ALS] I never meet at ALS functions. How many PALS don’t like to leave the house, don’t get visitors, don’t have meaningful interactions with people other than caregivers and their health care professionals? But the bigger question is: How many people could visit them, take them out, or help them out, if not for the feeling of “I don’t know what to do. I don’t know what to say”. Or, what can we PALS do to answer that question ourselves, when someone says [as my mother’s friend did], “I haven’t come to visit because I don’t know what to do or say”.

I am going to share some of what I learned, often painfully, in more than five years with ALS. I have wonderful people around me, some unexpected surprises, and some disappointments. First and foremost, know that others’ reactions to your condition are a statement of their ability to cope, and not about anything you’re doing or not doing. For a long time, I felt it was my responsibility to make other people comfortable around me and ALS. I learned that I couldn’t control this, and finally I learned that it didn’t matter what I did. Each person comes with a history of how they handle illness — theirs and others’.

I also learned that some people are there from the beginning, and some appear later on. Some are always around, some will never be, and some come in and out of our lives. This is no different from healthy periods in your life; you are just more sensitive to it when you have something like ALS. Also, forgive those you assumed would be around you, but can’t. Sometimes those closest to you are the most sensitive to seeing someone they love with an illness, and don’t handle it as well as you thought they would, or think they should. And, often, people you have not been close to “show up” for you unexpectedly. Some people are natural carers and helpers, and they will pitch in when others can’t. People who have already had experience with a friend or family member with a serious illness may find it easier to deal with ALS.

The very nature of ALS affects the way people look at PALS. First of all, it’s rare. You’d be hard-pressed to find anyone who doesn’t know several people who have had cancer, stroke, Alzheimer’s, even AIDS or MS. The media is full of those stories. Most people will go through life without knowing anybody with ALS. In most cases, you will be the first PALS they have ever met. It’s a fact that people are afraid of the unknown. Also, everything they read states that ALS is incurable and fatal; these are scary concepts. They may not want to look at their own mortality, or they may even be dealing with the fear of losing you. Once again, it is more about them than about you.

There are things we can do, strategies that I have learned to cope with periods of loneliness. First, if you have a computer and the internet, you are not alone. There are lots of support groups online, including ALSA’s Advocacy Support Community at or Yahoo’s “Living with ALS” online community. If you are able to travel, you should go to one of ALSA’s monthly support groups in person. The only people you can expect to know what you are going through are those who are going through it themselves. I’ve had well-meaning folks say “I know what you’re going through”, but they don’t. Perhaps family and friends are afraid you will be angry or depressed, and bring them down. If you get to know PALS and caregivers through support groups, you can open up to them, and they will understand. Then you will be less likely to unload on loved ones.

When people want to help, embrace them. Let them assist with small tasks that are appropriate to them. Don’t overwork them, and don’t ask them to perform personal hygiene tasks, unless of course they want to and you are comfortable with that arrangement. Understand that it takes time for people who knew you when you were healthy, to get used to a wheelchair, an assistive communication device, and a house full of strange equipment. I have tried to find the humor in certain situations, like people thinking I am deaf and speaking to me loudly and slowly, or others who ask my caregiver questions about me. I write on my board “Don’t shout. My hearing is perfect”, or I go ahead and write the answer to the question they asked my caregiver. This type of ignorance is across the board for all disabilities. It wasn’t that long ago that someone who could not talk was referred to as “dumb”. In general, I have found that seniors, who lived through the pre-politically-correct era are the ones I have to have more patience with.

Lastly, become familiar with the Americans with Disabilities Act [ADA] and the rights it affords people with disabilities [PWDs]. Don’t sit in the house unless you can’t get out. Investigate resources for PWDs in your area. Go to http://www.mta.info/mta/ada/ and check out accessible transportation. Have your friends accompany you to movies, the theater, museums. You are still the same person you always were inside, and they will realize this. It may just take a little time to adjust.

Fern Cohen is a former teacher and a writer with ALS. She frequently writes guest posts for The ALS Association Greater New York Chapter’s blog. Read Fern’s blog, “Forced to Sit Still and Shut Up — Life Before, and During ALS” at http://xr.com/fern. You can also follow Fern on Twitter at http://twitter.com/fec139.

To visit the ALS Association Homepage and learn more about ALS, click here.

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