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ALS in the Spotlight

Kevin J. Felice, DO, chief of Neuromuscular Medicine, talks with Susan, a patient with ALS, outside the Hospital for Special Care in New Britain, Conn.
The Ice Bucket Challenge for ALS has become the social media sensation of the summer of 2014. The premise is simple: pour a bucket of ice water over your head (bonus points for creative dumping), post your video on social media, and then challenge others to follow suit. Most importantly, don't forget to donate! By August 29, 2014, the ALS Association had received a whopping $100.9 million in donations compared with $2.8 million during the same time period (July 29-August 29) in 2013.

"These funds will be used to fund cutting-edge research as well as care and support to people living with the disease," said Barbara Newhouse, president and CEO of the ALS Association. "Now and in the coming weeks, we will be able to enhance our strategic plan, reformulating and recasting strategies with input from stakeholders, including our donors, our chapters, and most importantly, people living with ALS and their families. We want to move quickly but decisively as our ultimate goal is to use this incredible generosity in a way that has the biggest impact on fighting this disease."

Often referred to as Lou Gehrig's disease, amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. There is no known cause for this fatal disease and researchers are still far from discovering a cure.

After the proverbial ice settles, there will still be 30,000 people living with ALS in the United States. ADVANCE spoke with a handful of healthcare professionals about the awareness ignited by the Ice Bucket Challenge and what we all can learn from it. Please read our Q&A with the following healthcare professionals who care for and support patients with ALS:

·         Merisa Palovcak Allen, MS, CCC-SLP/L, ALS Association, Greater Philadelphia Chapter, and Penn Medicine's Pennsylvania Hospital ALS Center

·         Wendy Barnes, LSW, social worker, ALS Association, Greater Philadelphia Chapter

·         Kevin J. Felice, DO, chief of the Neuromuscular Center and director of the ALS Clinic at Hospital for Special Care in New Britain, Conn.

·         Zahira Paul, MS-OTR/L, staff level II therapist, ALS Association, Greater Philadelphia Chapter,  ALS Center at Penn State Hershey Medical Center

·         Gretchen Relva, PT, neuromuscular PT, Neuromuscular Center at Hospital for Special Care

·         Lynn Ricci, senior VP and chief operating officer of Hospital for Special Care

·         Katie Seaver, MS, CCC-SLP, The Leonard Florence Center, Boston, MA

·         Kamille Sprenkle, PT, DPT, ACCI, ALS Association, Greater Philadelphia Chapter, and ALS Center at Lehigh Valley Health Network in Allentown, Penn.

·         Susan Walsh, RN, MSN, ACNS-BC, regional nurse coordinator for the Greater Philadelphia Chapter of the ALS Association and program coordinator at Penn State Hershey Medical Center's ALS Clinic

ADVANCE: In what ways has the recent spotlight on ALS improved awareness of the disease?
Barnes: The excitement shared by patients with ALS and their families at my most recent support group was unbelievable. They are thrilled that, for once, ALS is in the spotlight. Not only are people being educated on ALS but they know the donations are going to help fund research, services to patients and advocacy efforts. Seeing their smiles and a greater sense of HOPE is priceless.

Seaver: I think that anything that shines a spotlight on disability awareness is fantastic. It has allowed people to ask questions, seek information, and then donate some money. Not only that, but it was a fun, family oriented and entertaining task. Win, win, win! It is an opportunity for people who have more information to speak up and share their knowledge. If there is ever a time to have more speaking engagements, more articles, more public events of any form to share knowledge about what is needed to help people with ALS, now is the time. People are listening!

Walsh: The Ice Bucket Challenge has given people living with ALS a voice and an opportunity to share their stories and experiences. In many ways, that is more valuable than any donation that's been collected to date.

Felice: ALS is a rare and terrible disease and until we have a cure, we need to support ALS patients and family members to the best of our abilities. There are more than 200 people afflicted with the disease each year in Connecticut alone. The Ice Bucket Challenge has been a refreshing time for us because it's raised money locally and nationally as well as awareness across the country. It has helped raise awareness of a rare disease that people need to know about. Please support your local ALS centers.

Ricci: It's a devastating disease so it's not cocktail party or dinner table talk. The challenge has made it OK to talk about ALS. The impact has been incredible and far reaching.

Relva: I'm excited about the recent fundraising windfall because it may mean more funding for research. The general public is more aware now, and as a result, the support system will improve emotionally and physically. My patients and families feel supported by the spotlight. I hope there will be more resources available as a result and that people will continue to donate and maybe even donate equipment.

Allen: It's amazing to see what the Ice Bucket Challenge has accomplished. We want to eradicate this disease-but we are very far away, we don't even know what causes it. We need to start there. Once we know what causes it, then we can figure out how to stop it or even lengthen the lives of people with ALS. I hope one day it can be treated with medications that help patients live longer, fuller lives.

ADVANCE: What have you learned as a clinician working with this special patient population?
Walsh: Even though it is a rare disease, it can strike anyone, at any age. I've learned by working with these patients that quality of life is not dependent on physical function. It's an extremely challenging diagnosis but it doesn't dampen my patient's spirits. From working with these patients, I have learned how important it is for everyone to live life to the fullest.

Allen: A lot of patients are overwhelmed by an ALS diagnosis, especially the new patients. They want to know how we can help them since there isn't a cure for the disease. I have been working in the ALS Clinic for nearly 10 years to make the disease as manageable as possible for them and improve their circumstances. I am very passionate about my work.

Paul: It's a difficult but rewarding population to work with. It's incredible to see what they can do with what they have and how they shine through their disability. I feel honored to provide these people with what I can to improve their lives and make it easier.

Sprenkle: We care deeply for these patients. We attend their graduations, book signings and birthday parties. And, then we attend their funerals to support the families. We learn from each patient and are able to share what we have learned from each patient. People with ALS are regular people with the same needs as any of us have-they want to experience life to the fullest. But, they often become isolated because others don't know how to help.

ADVANCE: What do you hope will change with the increased awareness and funding for ALS?
Sprenkle: You can help by offering support. Go to their homes and offer to do the food shopping, laundry, etc., so they can focus on doing the things they want to do that will fulfill their lives and dreams. They don't have the energy to clean the bathroom, but you do. This can also give the caregiver a much needed break from the day-to-day chores.

Relva: In the big picture, these patients need a better support system, particularly those who are still working and need to arrange for transportation, for example. Anything that people can do to help patients continue to function with less burden on their families is always appreciated.

Paul: I wish there was more awareness of ALS in the therapy community. Our patients reach from CT to DE, so it's impossible for us to go out in the community to educate the therapists our patients see on a regular basis. We try to be available for those therapists to answer any questions about how to care for patients with ALS. They can call any ALS Association certified clinic to ask questions anytime.

Relva: I'd love to see Medicare reform so these patients can get more access to the equipment that is out there and not have to be sicker to qualify. The criterion for equipment needs to change. A patient needs to have bed sores to quality for better seating and beds but these patients are too well cared for to qualify. These patients have positioning and breathing issues that would benefit from the functionality of high quality beds.

Seaver: There are many ways people can help, but especially by fighting healthcare policy reform. In April, Medicare announced its intention to deny payment for communication devices used by patients with ALS and a host of other diseases and impairments, when they enter a skilled nursing home or hospice. Please join me in reversing this decision.

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