Each month, a member of the Chapter’s experienced care team answers three questions about ALS and their role in supporting ALS families.
August is the anniversary of the Ice Bucket Challenge. What advances have you seen for ALS care since the ice bucket challenge in 2014?
August is also my anniversary date with the Chapter and without the funds raised with the Ice Bucket Challenge, I may not have gotten this wonderful job. The Ice Bucket Challenge was one year before I started working at the ALS Treatment Center at Penn State Hershey Medical Center. At the time, I was working in Hospice and knew very little about ALS. I had only ever met one person with the disease, but I knew that it was a devastating terminal illness for which there were few treatments and no cure.
The Ice Bucket Challenge brought increased awareness and raised a lot of money as we already know. That money allowed the chapter to fund a much-needed additional Registered Nurse for the Hershey ALS Treatment Center and I was blessed to be that person. There were only two nurses providing care at the time for the increasing number of ALS patients coming to the clinic. Adding a third nurse ensured that the clinic could continue to provide the high standard of care set by those two nurses. In addition to providing more care staff, the challenge enabled increased research that has led to new drugs and the identification of several genes that cause ALS, as well as advances in technology that aids patients in communication and increases quality of life. It is an exciting time as we witness these advances, and it gives us hope that this disease can be cured. It is what we all hope and pray for.
You see patients at clinic visits, but also follow up between visits. Are there any common questions that people have when they reach out to you between visits?
Patients, family members and caregivers reach out for all kinds of things in between visits because that is what we encourage them to do. Common things are the need for medication refills, forms to be completed, equipment needs, etc. We are there to help in any way we can, to provide direction, support, counseling and to answer any questions that they have. Common questions often regard new treatments that they heard about, or what to expect next and how to manage that, and the big question “how long do I have”? The ALS nurses along with the neurologists and the entire clinic team strive to provide the support and education that is crucial to navigating this disease process. We make sure that they know that they are not alone in this.
How have you seen ALS patients and caregivers benefit from the many Chapter support groups? How can people become involved with them?
The support groups are great! We can answer most questions, but who knows better than those who are actually living with ALS?! Other patients and their caregivers are the best resources and have the best ideas about how to handle things and can talk about what works and what doesn’t work. The support groups give them a chance to meet others who can fully understand what they are going through as well as the opportunity to exchange ideas, equipment, caregiver hacks, etc. These groups are free of charge and information about them can be found on the Chapter website. Patients and caregivers can also reach out to any staff member for help with getting connected with a group.