Each month, a member of the Chapter’s experienced care team answers three questions about ALS and their role in supporting ALS families.
How do you work directly with our patients and families and how has your role as a social worker evolved over the years?
As a social worker for over 24 years, my main goal is to be a good listener and to meet clients where they are. I work with both patients and families in person, as well as over the phone, email and Zoom. Relationships develop over time. Initial contact is made after a referral to the Chapter, usually by an ALS Treatment Center that they attend. As these relationships grow, it allows us to assist families with care planning, entitlement counseling, support, and providing the best assistance as we become better listeners along the way. Developing an open and trusting relationship has always been the key to a successful relationship and letting families and patients know they are not alone on this journey.
Summer is a big time for family vacations, what kind of advice or suggestions do you have for our ALS patients as they plan their trips?
I am all about creating and making memories. As the weather becomes warmer, most of us are more motivated to get outdoors. If you are planning to explore local parks or other outside venues, try to call ahead to see if they are wheelchair accessible and bathroom accessible (contact your local parks and recreations). Some communities offer outside concerts and activities. Local beaches are another fun place to visit either for a day trip or rental. Some beaches offer wheelchairs that are constructed to go on the beaches/sand, and they can be reserved by calling your local Chamber of Commerce.
If you are traveling by plane, you can plan ahead with the airlines or contact the local ALS Chapter you are visiting. ALS Chapters can connect you with local medical supply companies if you need to rent any equipment in advance or for any medical issues you may develop when you are away. I also suggest you connect with your local ALS Treatment Center to notify them of your travels and any advice they may have for your unique needs. I am a true believer in making memories. You do not need to travel abroad to create positive memories, just plan ahead of time. Visit our website at www.alsphiladelphia.org for webinars and tips on traveling or join the Facebook Group: Traveling with ALS.
People may have family or friends with ALS visit them during the summer. How can someone best prepare their home to be accommodating for someone with ALS?
Home set-up may be a number one obstacle when trying to visit friends and family. If you are in a wheelchair or mobility is impaired, how will you access the home if they have steps? Where is the bathroom and is it wheelchair accessible?
Local medical supply companies can deliver equipment on a rental basis to assist in making the home more accessible when visiting. This includes rental commodes, shower chairs, hospital beds, and more.
In addition to accessibility needs, it is important to find out if the patient has any dietary restrictions, so you know in advance how to prepare meals. Sometimes it may be easier to visit a loved one with ALS in their own home since they have the set up and are more comfortable in their own setting. If that is the case, ask families if you can prepare a meal and what are the dietary restrictions. Keep the visit upbeat and be mindful of how long you stay as patients and caregivers can be exhausted. Offer to assist with any odd jobs that may need assistance in the home during your stay, such as sitting with the patient so the caregiver can take a nap or get to the market. Creating memories and re-connecting with friends and family can be very positive but be mindful and attentive to the needs of the patient and caregiver.