My husband has ALS. He used to love to ride his bike. But he can no longer do many things he used to do. Is there something he can be involved with, that allows him to be a little active, even though it is not at the same level it was before.
- Joan, Nassau County, NY
Joan, you capture an experience of many people. As ALS progress, muscles are not doing what they used to, and it’s a difficult adjustment to ‘give up’ activities one is so used to doing. From hard exercise to light walking in the neighborhood, change becomes a constant. The loss of muscle function is difficult, but there are alternative ways to stay active.
One outdoor activity as an alternative to bicycling is hand-cycling. These are basically low to the ground tricycles for adults that operate by hand. When on the hand-cycle, your legs are stretched out in front, while your hands are doing the pedaling. Upper body capability is certainly needed, but there is no ‘balancing’ required like on a bicycle, as the two wheels in back and one in the front keep you firmly on the ground.
If you're in New York City, the International Achilles Club has several hand-cycles available to try it out. They can be found in Central Park on Saturday mornings from 8:00am to 11:00am at 90th Street and 5th Avenue and it’s free. There are other organizations too, devoted to providing hand-cycle opportunities for little or no cost. If you are looking to get away for a weekend this fall, Simsbury, Connecticut (2hours from the Throgs Neck Bridge) is a small bicycle friendly town with a rail trail. Several locations loan standard bikes, and CT Adaptive Cycling is dedicated to get people with disabilities on a hand-cycle.
It is important to speak with your medical professionals to determine how much exercise is right for you.
- 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.
National Respiratory Care Week
Later this month we recognize National Respiratory Care Week (October 20-26). For people living with ALS, respiratory care is a key component in ones day-to-day life. To honor this week, we'll hear from the respiratory therapist at the ALS Association Certified Center of Excellence at Beth Israel Medical Center, Betsy Thomason.
Focus on Effective Breathing
By Betsy Thomason, BA, RRT
Breathing is everybody's most important activity of daily living! In our 21st century world, most of us are breathing too fast and too shallow. We've lost the understanding that breathing provides energy and promotes relaxation. Whether you are a person with ALS (PALS) or a caregiver, effective breathing is essential for your well-being.
A respiratory evaluation is part of the care given at any ALS Assocation Clinic in the region. There are two parts: the subjective viewpoint of the PALS and caregiver and objective information provided by four measures of pulmonary function. Both aspects are important—one corroborates the other. Patient subjective information includes sleep habits, daytime energy levels, presence of headaches or nightmares, shortness of breath, cough-ability, water intake, and secretion management. The four objective tests are pulse oximetry (SpO2) for blood oxygen level; end tidal carbon dioxide (ETCO2), an indicator of exhale-ability; negative inspiratory force (NIF) which measures the strength of the diaphragm; and forced vital capacity (FVC) which identifies the amount of air you can get into your lungs.
The role of the respiratory therapist is to use this information to provide recommendations about home respiratory equipment and choices to facilitate patient decision making. This includes the use of a cough assist device for chest wall expansion and secretion management, mechanical ventilation non-invasively for sleep and as needed during the day, and a suction machine. Oxygen is not part of the protocol because most PALS have healthy lung tissue.
In my practice for the past 12 years as the respiratory therapist at the Beth Israel's ALS Association Clinic, I emphasize the importance of relaxation and stress management for PALS and their caregivers. Effective breathing, that is the focus on the active outbreath and passive inbreath, promotes relaxation of the autonomic nervous system and thus the entire body. Whether you purse your lips and gently blow out long and slow, or hum or grunt, you can influence your body's response to stimuli and thus save energy.
For more information about effective breathing, go to www.btbreathingtraining.com. For free excerpts from Betsy's soon-to-be published book, Just Breathe Out—Developing a User-Friendly Body, featuring the BreatheOutDynamic system, email her at betsy@btbreathingtraining.com.
AMP UP YOUR GIVING: Technology Edition
Through the generosity of numerous donors, our Chapter is able to provide our PALS with a wide array of equipment to help them maintain their independence, sustain mobility, and have the ability to communicate throughout the progression of the disease. Your gift, no matter the amount, can go a long way in helping us continue this important work for our region's PALS. Here is some of what your gift can provide:
$50 - Switches can give patients who have lost their ability to press on various communication devices access to an entire communication screen with one easy motion.
$150 - Communication Device Batteries allows our patients to be mobile and still maintain their communication. Communication systems can work while plugged in, but they become portable with the use of these batteries, fostering independence for patients and greater ease for caregivers.
$250 - A Voice Amplifier increases the volume of a patient with weakened or softened speech, so listeners can remain in a typical conversation space instead of staying extremely close to hear the speaker.
$350 - Wheelchair Batteries last about two years and provide one of the key components for a device that is critical to the movement of PALS. A power wheelchair cannot be used without a working battery, so this basic part of the wheelchair is one that is greatly needed for the Chapter.
Donate today to ensure we can continue to provide the highest quality of care to all our PALS and continue to provide the state-of-the-art equipment at no cost!
To donate or for more information, contact Loren Domilici, Development Manager at (212) 720-3060 or ldomilici@als-ny.org.
Team ALS - in the home stretch!
The ING New York City Marathon is just around the corner and Team ALS is in the home stretch for their training and fundraising! If you would like to make a donation to one of this year’s Team ALS Marathon participants, click here to visit our Team page.
Show your support by joining us on Marathon Day to cheer on the Team! The Team ALS Cheering Squad will be stationed at the corner of 85th and First Avenue (S.E. corner) on the Upper East Side in front of the Starbucks. Don’t forget to wear red in support of the Team. If you would like to purchase a Team ALS t-shirt, please visit our online store.
For more information on Team ALS, email Kristen Cocoman.
YPG Fall Fundraiser
The ALS Association’s Young Professional Group is hosting their annual fundraiser on October 25th from 8pm to 11pm at Maxwell’s Bar & Grill in TriBeCa. This event will be a fun way to get to know current members as well as raise money and awareness for ALS, and support research and Chapter services. Tickets include open bar, passed hors d’oeuvres and a silent auction! Tickets are on sale for $85 until 10/15 and then $100 after and at the door. For further information, please contact Loren Domilici at (212) 720-3060 or ldomilici@als-ny.org.
The YPG has also unveiled their new logo! Check it out below and be on the lookout for it at all future YPG events and in correspondence.
Fighting ALS from your Desk
Through employee giving programs, you can dedicate pre-tax money to our Chapter to help support research and people living with ALS in our community. To designate our Chapter, use the following codes:
Combined Federal Campaign (CFC): 56276
State Employees Federated Appeal (SEFA): 99900019
Combined Municipal Campaign (CMC): 1741
United Way: The ALS Association Greater New York Chapter
Serving Patients, Families and Caregivers Throughout Greater New York and New Jersey
Region 1: New York City.
The Bronx, Brooklyn, Manhattan, Queens, & Staten Island.
Region 2: Long Island.
Nassau & Suffolk Counties.
Region 3: Westchester and Hudson Valley.
Dutchess, Orange, Putnam, Rockland, Sullivan, Ulster, & Westchester Counties.
Region 4: Northern & Central New Jersey.
Bergen, Essex, Hudson, Hunterdon, Middlesex, Monmouth, Morris, Passaic, Somerset, Sussex, Union, & Warren Counties.
To find the Patient Care Services representative in your area, call (212) 619-1400 or toll free at (800) 672-8857.
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.
The next general meeting is Thursday, October 10th at 717 5th Avenue on the 7th Floor, NYC. Newcomers welcome. For more info please email alsypg@gmail.com.
For information about the ALS Association's Young Professionals Group, please click here or contact Loren Domilici at ldomilici@als-ny.org or (212) 720-3060.
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 Daryl Cochrane at dcochrane@als-ny.org or (212) 720-3051.
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 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. Call Loren Domilici, Development Manager, at
(212) 720-3060 or email ldomilici@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.
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