Each month, a member of the Chapter’s experienced care team answers three questions about ALS and their role in supporting ALS families.
September is National Preparedness Month. What tips would you suggest to help ALS families be prepared in case of an emergency such as a hurricane or other natural event?
First, please keep an eye on weather. There are many apps for this. Please keep track of your location.
As far as electronic devices such as a power wheelchair, communication device, respiratory equipment, phone, stair glide, platform lifts, etc., check to make sure your batteries are fully charged and know your back up battery life.
You may want to consider investing in a small or large generator, that can be fuel or non-fuel based.
Always have a “Go Bag,” which is an emergency bag, placed by your door and contains all your vital information if you have to evacuate your home.
Check out our educational video on emergency preparedness at https://youtu.be/jBU18euZm70.
If you have any questions, our team of nurses and social workers is always ready to assist you.
What programs do you discuss with patients at their first visits to clinic and what topics do you recommend that people address early in their diagnosis?
This varies for each individual person depending on what symptoms they are experiencing and how it affects their daily life. We really try to meet each person where they are, build a relationship with them and educate them on how we can support them and their family. We encourage families to attend our Newly Diagnosed support group. We explain the process at an ALS Treatment Center and the role of clinic team members in supporting them. We help guide and connect them to resources based on their immediate needs (such as equipment, home modifications, home care, insurance, etc). We talk about how to share the diagnosis with family and friends. We assure them that we are here to help them through this as it can be very overwhelming.
The first clinic visits can cover a lot, but what are the most important things you look to discuss at follow up visits with patients?
At follow-up visits we are continually assessing how patients are managing and coping in daily life.
If someone is still working, we encourage them to educate themselves on their benefits such as short- and long-term disability. We also educate them on Social Security Disability and Medicare benefits.
We encourage them to think about long-term planning such as home modifications, finances, etc. We encourage our families to have their Advance Directives in order and educate them on how to do this.
We encourage our families to participate in the many support groups that we offer to connect with other families living with ALS. Click here to learn more about our Resource Groups.
We support them where they are in the disease process and connect them to resources to help support them.