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.
For those living with MS, there can often be symptoms that can have a tremendous impact on everyday activities due to worsening of the disease, which may not always be obvious to those around them. 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.
Understanding disability progression and the importance of supporting people to live their best lives.