ALS Assistive Collars

Persons with ALS often end up needing a collar as their neck muscles become weaker. Unfortunately, finding a satisfactory collar is often difficult. Persons with ALS often find wearing a collar to be very claustrophobic associated with having difficulty breathing.

Collars can be obtained from numerous sources, including medical supply vendors and orthotists (professionals specializing in making and fitting braces). Your occupational or physical therapist can help you figure out what your options are.

There is some Alberta funding available for collars if they are obtained through an orthotist. AADL will cost-share collars for clients under the age of 65. Blue Cross will assist with funding collars for seniors.

Headmaster Collar

This is a popular collar with persons with ALS as it is very open around the neck while providing some support. It is available through some medical supply vendors and orthotists, or it can be ordered directly from the manufacturer. This model comes in various sizes so it is important to do the required measurements before ordering it.

For more information see www.symmetric-designs.com.

Aspen Collar

This is probably the collar that orthotists most often provide to persons with ALS. It is made of semi-rigid plastic with foam inserts to provide comfort. Velcro straps are used to adjust the fit.

For more information go to www.aspencollar.com.

Foam Collar

This is probably the most readily available collar, and the least expensive one, however it is also the least satisfactory collar for most persons with ALS. Although these are off-the shelf items available in drug stores and medical supply shops, they seldom fit properly unless cut down to fit the user. They are also quite constrictive and therefore claustrophobic.

Some persons with ALS find a foam collar meets their needs for a while. For instance, if a collar is only needed during transfers or toileting or while in a vehicle, a foam collar might be adequate.

If a person with ALS does choose a foam collar, it is best if the top front edge of the collar is cut down so that the collar fits snugly under the entire chin rather than allowing the chin to ride up over the lower chin. Once the collar is fit to the user, then stockinette (or a tube sock with its toe cut off and hemmed) can be rolled over the cut portion of the collar.

Custom Collar

These are available from orthotists (or occupational and physical therapists with a specialty in collars and splints) and are an option for clients who have not been able to find any off-the-shelf or semi-fitted collars that worked.

Custom collars vary greatly depending on the need of the user. One person with ALS had a collar consisting of a back piece molded to fit him from his waist to the top of his head with a head band around his forehead. This meant that his neck had nothing around it, yet his head and neck were held in a good position.

Alternatives to Collars

Some persons with ALS find ingenious solutions other than collars to keep their head ina comfortable position. If a person with ALS is always in a tilted position (e.g. in a tilt wheelchair or an easy lift chair) then gravity will help keep the head in a comfortable position and a collar is needed less often. A tilt commode reduces the need to use a collar when toileting.

Some persons with ALS find it useful to attach a headband to their wheelchair headrest to keep their head in a comfortable position. This can work well as long as the headband is positioned in such a way that the client's head cannot slip underneath it.

Need More Information?

These are just some of the ideas available to persons with ALS who need some neck support. Please talk to your occupational or physical therapist for more information, or contact an orthotist in your area. Your family doctor or neurologist may also refer you to a physiatrist (a doctor specializing in rehabilitation medicine).

This information has been prepared for the ALS Society of Alberta by Anne Chapman-Heinemeyer, OT. For more information on the ALS Society of Alberta's Equipment Program, please call Lauren Milburn at (403) 228-3857 or e-mail at lauren@alsab.ca. Phone toll free in Alberta at 1 (888) 309-1111.