Does it help to have a bidet when caring for an ALS patient?
- Michael W., Manhattan, NY
A bidet is not a common piece of bathroom equipment in the U.S., compared to Europe or Asia, but it does have benefits for persons with ALS and their caregivers. A bidet is an upward water spray used to clean the body after one uses the toilet. Traditional bidets were a separate fixture next to the toilet, though today it can be added to an existing commode, simply by purchasing a customized seat. Attachments generally are $100-$500 and require some installation.
The benefit of a bidet is personal hygiene for the patient, and assistance to caregivers. With an attachment feature, a patient can use the toilet and remain seated while the upward spray of water does the cleaning. Some attachments have an air blowing feature for drying. The necessity for toilet paper is removed. This enables someone to continue to use the bathroom independently and significantly reduces the effort of caregivers by eliminating the need for wiping and additional lifting. Activating the water stream does require the press of a button, and depending on placement, this may be difficult for someone with limited hand or arm movement. Some units have a wireless remote that can be flexibly placed to best accommodate one’s capabilities. If necessary, a caregiver can operate the bidet controls. You can find bidets and bidet attachments online or in home or surgical supply stores.
What is a Lift Chair?
- JF, Long Island
For many people with ALS, standing up from a sitting position is more difficult than walking. Lack of balance, along with leg or arm weakness, and upper body control, can make 'getting up' harder than ‘being up’. From a 90 ̊sitting angle at your knees, those first few inches up from a seat, are the most difficult. Lift Chairs are basically reclining chairs with a motorized lift mechanism built in. The entire chair rises up, and tilts forward slightly, in order to get the seated individual closer toward a standing position.
A similar process works in the reverse. If standing up is difficult, it is likely that getting into a seated position is just as difficult. Gravity and a soft landing on a chair might hide this, but you want to avoid simply dropping into the chair. A lift chair in the raised position allows you to lean comfortably into the seat. Then, by activating the down button on the chair, you are already sitting in the chair, as it slowly brings you down.
Some lift chairs have multiple reclining positions. Since they are the size of reclining chairs, they can take up significant space in the home. Lift chairs can be found online and at medical supply stores. Speak to your Occupational Therapist or Physical Therapist to determine if this is the right choice for you, and what height off the floor, or functions would be best.
To ask Ben a question, simply email him at firstname.lastname@example.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.
Father’s Day Gift Idea
Pinstripe Empire: The New York Yankees from Before the Babe to After the Boss by Marty Appel.
Author and journalist Marty Appel recently published a fantastic book entitled Pinstripe Empire: The New York Yankees from Before the Babe to After the Boss. This gripping look at the most successful Major League Baseball franchise in history, chronicles the Yankees through many storied years. The book showcases the biggest moments in baseball history and sheds light on some of the more obscure moments that bring to life the players and managers who wore the pinstripes. This makes the perfect Father’s Day gift! For just $35 (plus shipping & handling), you can order a signed copy of this piece of Yankees history with proceeds benefiting ALS research and patient services. Call today to place your order in time for Father’s Day at (212) 619-1400 or email email@example.com.
Advocacy Day Success!
Advocates on Capitol Hill with U.S. Rep. Peter King.
Just last month over 30 phenomenal ALS advocates from the Greater New York Chapter descended on Capitol Hill for 2012 National ALS Advocacy Day. With families from every region of our Chapter, we met with 23 Members of Congress and 4 U.S. Senators to get more funding for ALS research, to maintain the National ALS Registry, and to garner co-sponsors for the recently introduced MODDERN Cures Act, which will positively impact research and propel it forward.
Within just two days following Advocacy Day, we learned that our efforts were fruitful, as Congress appears headed to increase funding for ALS research within the Department of Defense (note: final Congressional approval is still pending at time of publication). Special kudos to our long-time advocates, as well as to the first-time advocates, and especially the four PALS who attended.
Advocacy Day is but one day a year, however there is something that can be done every day to raise awareness for ALS and inform our representatives in federal, state, and local government about this disease. Sign up as an advocate today and get information year-round on the latest in public policy and ways you can help. Call Daryl Cochrane at (212) 720-3052 or email: firstname.lastname@example.org.
ALS Awareness Month Re-Cap
May 31st marked the last day of ALS Awareness Month for 2012. Thank you all for your tremendous efforts at Walks, on Capitol Hill, and everywhere on social media raising awareness about ALS, telling your story, and letting people know what needs done to find a cure for this disease. We had some amazing moments Walking to Defeat ALS in New York City and in Long Branch, New Jersey; at Advocacy Day in Washington, DC; and ringing the Closing Bell at the New York Stock Exchange. But those moments that were most meaningful were simply you telling your story about ALS and how it has impacted you and your loved ones.
Raising awareness will not end now that May has come to a close. This is a year-round effort that we all play a part in. Thank you for all you’ve done and what you’ll continue to do.
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 email@example.com. If you live in New Jersey contact Debbie Schlossberg at (732) 710-8832 or firstname.lastname@example.org.
National ALS Registry
In late 2010, the National ALS Registry first began collecting data. In that initial year people living with ALS throughout the country have registered and in doing so provided
invaluable information on the effects of the disease as well as figures and statistics which will hopefully pinpoint a cause of ALS, that will lead to an effective treatment or cure. As we move into a New Year, and hopefully a year full of new discoveries in ALS research, every bit of data collected will directly and positively impact that research.
In addition to gathering key demographic information, the National ALS Registry recently added several new features, including components that will help people enroll in clinical trials and locate much needed services in their communities. A biorepository that collects DNA and
tissue samples also may be added, and more surveys to explore potential
risk factors for ALS are in the works.
The Registry is a powerful tool that has the potential to help find the cause and treatment for ALS. If you want to learn more about the Registry, including how to enroll, click on the image of Lou Gehrig above or go to the ALS Registry website at www.cdc.gov/als.
For more information about the registry go to: www.als-ny.org or call the Chapter office at (212) 619-1400.
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
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: email@example.com for New York, or Debbie Schlossberg at (732) 710-8832 or email: firstname.lastname@example.org for New Jersey.
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 Regina Ackley, Senior Director of Operations, at (212) 720-3047 or email email@example.com. To mail a donation
to: The ALS Association Greater
New York Chapter, 42 Broadway, Suite 1724, New York, NY 10004.
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 firstname.lastname@example.org or (212) 720-3051.
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 ALS Association's Young Professionals Group and upcoming meetings, please click here.
ALS Association Greater New York Chapter in Social Media
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.