Exposing the impact of progression in multiple sclerosis
Multiple sclerosis (MS) is a progressive condition. Some people are initially diagnosed with a purely progressive form of the disease, but regardless of which form of MS a person is diagnosed with, progression is there from the start and can have an impact on the independence of those with MS as well as their loved ones.
March 28 marks Progressive MS Day, a day dedicated to the MS community coming together to share stories, show support, and call for more research to advance care and reduce disability for those living with the most debilitating forms of the disease.
This year’s theme is ‘Embrace Your Community’, encouraging people living with MS to share the areas of their life that are impacted by the worsening of the disease, some of which can often be overlooked. Conversations around this with loved ones and healthcare professionals may feel overwhelming, but speaking out about symptoms may help people with MS to continue to engage fully in life.
It is indeed difficult to talk about it. For me, as for him. Also, because if you want to think about his feelings but at the same time, you don't want to give too much worries to the people around you.”
In collaboration with the MS community, we created a virtual reality experience to bring to life how the symptoms of MS can manifest in a person’s body – in this case, in the arms and hands. It features a state-of-the-art glove that restricts upper hand movement and simulates MS symptoms such as tremor, stiffness, and cognitive dissonance – some symptoms that could go unnoticed until a person’s MS has progressed. Through this technology, Gabriella van Galen – Pieter van Galen’s wife, who does not have MS – is able to feel how a seemingly simple task, such as potting a plant, can become much more difficult with symptoms of MS in play.
We hope that the technology will facilitate open discussions in the MS community about the experiences of people with MS so that the worsening of the condition can be monitored and symptoms controlled so that people can live independently for longer.
Want to be your own advocate and help your community understand how MS impacts you by getting involved in Progressive MS Day?
Share stories of challenges, perseverance and hope by uploading photos, videos, artwork and more on social media using the official hashtag, #ProgressiveMSDay. Link to helpful resources and services for those living with a progressive form of MS online or just follow along with the conversation using #ProgressiveMSDay.
And finally, update your Facebook profile image with a Progressive MS Day Facebook frame here, or by selecting “Update Profile Picture,” selecting “Add Frame” and searching for “Progressive MS Day.”