When a progressively debilitating disease like multiple sclerosis (MS) causes a patient to feel physically “wiped out” after a simple daily activity, such as a shower, it is of utmost importance for these individuals and the people in their support system to understand how they can maintain independence for as long as possible.
MS is estimated to affect more than 2.3 million people worldwide. Recognizing how important it is for MS patients to be able to maintain an independent life, Roche, in partnership with the European Academy of Neurology (EAN), hosted a live webinar with patients giving their unique insights on how they maintain their independence and overcome specific barriers.
The webinar was held June 18, in association with the EAN 2018 meeting June 16-19 in Lisbon, Portugal.
Titled “Maintaining Independence in Progressive Multiple Sclerosis,” the webinar focused on progressive forms of MS, and was moderated by Jane Symons, a media consultant and former health editor of London publication The Sun.
Panelists included Amanda Montague, vice president of education and healthcare relations for the MS Association of America; Tony Cardis, a patient living with primary progressive MS, diagnosed six years ago, and a volunteer with a community MS group in York, U.K.; and Alexandre Silva, living with relapsing MS, diagnosed nine years ago, and vice president of the Portuguese MS Society.
The webinar explored the impact of progressive MS on the health and well-being of those living with the disease and their support systems, focusing on how patients can maintain independence, as well as the life-changing impact such independence can have on their relationships, work, and quality of life.
Opening remarks were made by Montague, who gave a brief overview of progressive MS and discussed how the disease looks very different for every patient. She noted that the goal is to delay progression for as long as possible, the good news being that it can be done through treatments and lifestyle changes, “but progression is such an individual path, as MS is such an individual disease, that it really looks very different for each individual with MS.”
The main themes explored during the hourlong webinar were the barriers patients face, including misdiagnosis causing delays in treatment; changes to family dynamics after diagnosis; employment challenges; the importance of openness and proactive communication with support systems; the need to seek out available resources in the community; and how to be of service to those in the community facing the same obstacles.
For both Cardis and Silva, there was a delay in diagnosis, and it wasn’t until each had a full MRI scan that their healthcare providers detected the disease.
A delay in diagnosis prevents early treatment, which is essential for a disease like MS.
Silva underscored the significance of this delay and misdiagnosis, especially among young people because, due to the active lifestyle most of them have, it can be difficult to “link the cause to the effect,” and the early signs of the disease might be missed.
Silva was a sportsman, and according to him, this partially contributed to the delay in his diagnosis because he believed that some of his symptoms were due to sports-related lesions and not really caused by a neurological issue.
When asked about the most troublesome disease symptoms they had to face, fatigue and loss of mobility were mentioned by both Cardis and Silva as a significant impact on their lives.
Montague discussed the statistics of unemployment after diagnosis, and how this speaks to the importance and impact of MS to the whole family.
The panel agreed that with the MS diagnosis comes the need for hard discussions with family members and support partners on the potential financial impact it might have.
For Cardis, he went from being “the main wage earner and then, all of a sudden, the whole dynamic of the family changed,” he said, adding that it is necessary and vital to be proactive and tackle these topics early.
The current trend of opportunities for remote working was discussed because it allows for an increasing number of MS patients to have accessible work and greater freedom and independence. For many MS patients, avoiding early retirement is critical, both for their psychological and financial health.
With an MS diagnosis, the barriers to employment are not just obstacles for patients, but to their support system as well. The panel discussed the impact on caregivers and the difficulty in finding employers who understand the need for support and flexibility not only of patients but also of those who care for others.
The panel also emphasized the need to educate employers about disease symptoms and adaptations needed by MS patients and caregivers.
Cardis and Silva also highlighted the importance of having a support system with friends and family, and the key role that caregivers have in helping manage the disease. They also discussed the fact that not everyone understands what MS patients go through.
Cardis in particular made poignant remarks about it. “Not everybody will get it, whether it be your family or your friends. They will not understand MS, they will not understand fatigue,” but according to him, “you are not there to satisfy them; if they can’t understand it, then it’s their problem. Stay with those that do understand and can help you. … You find your true friends will be there for you.”
The last five minutes of the webinar was a Q&A session that included relevant questions.
The first question dealt with how to tell an employer once an individual has been diagnosed with MS.
Montague suggested that the person should “reach out to a patient advocacy organization in their country,” as “different countries have different laws.” She emphasized that it is important to understand the laws before having the conversation with the employer.
The second question was: How can the community help people with MS live a more independent life?
For Cardis, the answer was that the community needed to advertise more what is available locally for patients, and be more active with MS advocacy organizations. According to him, there are several resources and tools available; “you just have to ask.” He encourages people to be more proactive.
Silva agreed with Cardis, saying, “Normally, we don’t know what the community can give to us, unless we ask. … Be curious, ask questions.”
The webinar provides an understanding of the current realities patients and their support systems face after a diagnosis, but there was also an optimistic tone throughout the conversation.
Montague, in particular, at one point emphasized that these are very hopeful times for the MS community “because there is so much great research going on; there are so many new things that are happening in MS that are very … hopeful and exciting.”