The holiday season is a time for celebration, joy and togetherness, but for those living with ALS — amyotrophic lateral sclerosis — attending social gatherings can be challenging.
ALS is a progressive neurodegenerative disease that affects motor neurons causing problems with speech, swallowing, movement and breathing. As such, holiday parties can pose both physical and emotional challenges for those patients living with ALS and their families who provide care for them. With thoughtful planning, however, you can make your gatherings more inclusive and comfortable for everyone, including those living with ALS.
One of the first steps to ensuring your holiday party is ALS-friendly is modifying the home or venue to accommodate the specific needs of the patient.
1. Accessible entryways and pathways. Make sure that entryways, hallways and doorways are wide enough to accommodate walkers, wheelchairs or any other mobility aids. Remove any unwanted objects like rugs or clutter that might serve as a trip hazard. If the venue is a home, you may need a ramp in place of stairs to ensure that all accessible areas are on the same floor. Many patients who require ramps for their mobility equipment have portable ramps that they may be able to provide.
2. Seating arrangements. For those who have limited mobility, seating should be accommodating to their needs, allowing space for wheelchairs or seated walkers to sit at a table. You may want to consider limited mobility of the person’s head and sit them in a place that will allow them to participate in conversations without straining their neck or body.
3. Accessible restrooms. If your gathering is at a venue or a large home, make sure the bathrooms are accessible. Ensure there are grab bars for easier transfers and that the toilet height is appropriate for those who may be transferring from a wheelchair. If the gathering is in a private home and the bathroom is not conducive, consider asking the person if a separate private space might be suitable for toileting (using a urinal, changing disposable underwear) and offer this option.
4. Dietary needs/restrictions. Holiday gatherings are certain to include many tasty treats, but many people living with ALS face chewing and swallowing difficulties. Be sure to include this person when planning your menu to accommodate any special needs he/she may have.
The festive atmosphere of holiday parties, while enjoyable, can become overwhelming for someone with ALS. The disease can cause physical and mental exhaustion and emotional stress, so having a safe space where the person can rest is essential.
1. Designate a quiet room. Provide a quiet area away from the party noise, music and activity. This space should have soft lighting, a peaceful atmosphere and room to accommodate any mobility equipment where the person can take a break whenever needed.
2. Regular breaks. Recognize the importance of regular breaks. Encourage the person to rest if they are feeling fatigued and offer the quiet space. This can be quite helpful for those persons experiencing respiratory challenges as they become easily fatigued. Give the person control over the environment of the quiet room (like lighting and temperature) to ensure they are comfortable.
3. Flexibility. Understand that the person with ALS might not be able to stay for the entire gathering. Please help make them feel comfortable to leave whenever they feel the time is necessary.
Communication also can be challenging for ALS patients, especially as the disease progresses. Many patients use alternative devices (texting, writing on communication boards or high-tech augmentative communication devices) to communicate when they no longer have a voice.
1. Ensure communication tools are available. Consider having a tablet or communication board available if the person can still write. If they use a speech-generating device, ensure there is space for the device wherever they will be sitting so they are able to converse with others. These devices can be mounted on power wheelchairs or on individual stands.
2. Offer help without overstepping. It’s essential to offer help respectfully. Instead of assuming what the person might need, ask directly and allow them the dignity to decide for themselves. For instance, rather than automatically offering to feed them, ask if they would like assistance or if they prefer to manage on their own.
3. Be mindful of eating and drinking needs. Many ALS patients experience difficulty with eating and drinking, so foods and fluids may need to be modified to allow for ease of swallowing. Offer soft foods or even pureed options, and be prepared to adjust portions. It may also be helpful to offer drinks with a thickening agent or accommodate a drink with a straw if the person has difficulty raising a glass.
4. Have an understanding support system. Surround the person with family members, friends and caregivers who are attuned to their needs and can provide assistance as needed. Make sure the person has someone they are familiar and comfortable with to rely on if things get busy in the social setting.
The holidays should be a time of joy, connection and celebration. With some thoughtful planning and modifications, you can create a festive environment that is welcoming to everyone, especially those living with ALS. By ensuring physical accessibility, a quiet place to rest and providing a supportive atmosphere, you can help make the holiday season an enjoyable and meaningful time for ALS patients.
Editor’s note: Janie Dalrymple is director of education and family resources at Phoenix-based ALS Arizona. Reader reactions, pro or con, are welcomed at AzOpinions@iniusa.org.
