Ask Ben: Wheelchairs For Head And Neck Support
My father has ALS and is having difficulty holding his head up. His neck muscles are weakening and his chin is often on his chest. Is there anything we can get for the wheelchair to hold his head up?
- Sarah, Dutchess County
Standard wheelchairs or transport wheelchairs depend on our ability to keep our back, neck, and head at 90 degrees. They have a low back and offer no head support. The neck muscles do the work to keep our head balanced. As those muscles lose strength, the head begins to lean down. Seat belts should always be worn, and other side and back supports should be considered, as upper body control diminishes. A headrest can only provide support on one side, leaving the head to lean the other way.
There are however, special wheelchairs with high backs and head rests, that lean back. When a person sitting in this type of wheelchair leans back, their head is supported, diminishing the dependence on neck muscles.
As the name implies, in reclining high back wheelchairs, the back of the chair recline back, while the seat remains in a horizontal position. This also allows for stretching out the muscles in the back, legs and pelvis area, but can create a slight “sliding forward” sensation so you need to be careful of pressure sores.
In a tilting wheelchair, both the back and seat of the chair lean back in unison, maintaining a 90-degree angle. A person is “nestled” in the chair, as it tilts back. This reduces downward pressure. The pressure from sitting is divided between the buttocks and the back.
Tilting and reclining capabilities are found in both manual and powered wheelchairs.
You should speak with your Occupational Therapist or Physical Therapist to discuss issues of keeping your head up. Ask them if they think that a tilting or reclining wheelchair might help. We occasionally have these types of chairs in our loan closet.
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 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.
Importance of Oral Care For PALS
By Kim H. Paticoff-Wolf, D.D.S.
While the progressive symptoms of ALS may make oral care challenging, there are products available for ALS patients that can ease mouth care and lessen the chance of developing oral health problems. How does ALS impact oral care? Physical changes that occur with ALS can make it difficult to keep the mouth clean. These physical changes may include the functioning of the hands, arms, mouth, lips, cheeks, tongue, and swallowing muscles, and alterations in mobility and breathing.
For example, if you are not swallowing your saliva, it tends to pool and accumulate in the mouth. When saliva pools in the mouth, plaque, a sticky film on the teeth, builds up and bacteria grows. This buildup of plaque causes dental caries (cavities), gum disease, and bad breath. Another potential complication from ALS is dry mouth due to mouth breathing, BIPAP use, and/or certain medications.
Daily dental hygiene must not be ignored. Brushing, with a soft-bristled toothbrush and fluoride toothpaste should be done at least twice per day (once in the morning after waking up) and once in the evening before bed. This is done to prevent plaque from accumulating and to remove bacteria.
Replace your toothbrush every three to four months or after a cold. Floss between the teeth once a day to remove food and plaque that the toothbrush cannot reach. Rinse the mouth with an anti-bacterial rinse or add moisture to the mouth with a swab. If wearing dentures, take them out and soak them overnight. If weight loss has occurred, they may not fit as snug and instead cause gum or cheek irritations. Get regular checkups at the dentist (every six months) for examinations and cleanings.
There are numerous readily available products that can aid an ALS patient in maintaining proper oral care. For example, there are moisturizing agents such as Biotene moisture drops, Biotene anti-bacterial rinse, Biotene toothpaste, and a toothette (small sponge on a plastic stick for moisture relief).
Other products that may be useful are tongue scrapers/cleaners (to remove buildup of bacteria on the tongue), and modified grips on toothbrushes such as a racquet ball or tennis ball which fits over the end of the brush handle or Styrofoam tubing which fits over the handle of regular toothbrushes or floss threaders. There are also toothpaste dispensers (so you don’t have to squeeze paste from the tube), floss holders (“Y” & “F” shaped), electric toothbrushes which eliminate the need for extensive arm action and have large handles for easier gripping, a Proxabrush (for cleaning open spaces between the teeth or under fixed appliances such as bridges), an oral irrigator such as a Waterpik, and suction toothbrushes such as Plaq-Vak toothbrushes (helpful if swallowing cannot be done because water and toothpaste may be removed from the teeth while brushing).
To read the rest of this article, please click here.
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. Contact Christine Dunn at (212) 720- 3044 or email@example.com.
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 firstname.lastname@example.org.
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
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 John Nolan at (212) 720-3051 or email@example.com.
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: firstname.lastname@example.org.
Make a generous donation to find a cure, fund life saving research or to provide much needed equipment and services. To make a donation online, please click here or contact John Nolan at (212) 720-3051 or email@example.com. 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.
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