The role of MS symptoms on people’s ability to make meaningful connections with others

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By Jodi Haartsen, Executive Manager, Client Engagement and Wellbeing

At MSL’s World MS Day livestream, I spoke with Associate Professor Tomas Kalincik about the challenges to connection experienced by people living with MS and the ways in which neurologists and researchers are supporting people to overcome them. Here are the key takeaways from our discussion

Living with MS symptoms can be very challenging. The nervous system is complex, and MS is a complex disease. This can mean that establishing the exact cause and treatment of symptoms often requires extensive research, and there are many symptoms that can impact connections.

Tomas and I discussed how fatigue is one of the most common symptoms for people living with MS, often further complicated by its overlap with cognitive symptoms including brain fog, memory and attention loss. Reduced energy means that there may not be a lot left over to give to nurturing and building relationships. Communication can also be hampered by the struggle to pay attention and keep on track with a conversation and information.

Neuropathic pain is another complex symptom that can have a negative impact on a person’s quality of life and their ability to connect with others. While there are some treatments that work well for some people, pain is often challenging to manage and to live with.

MS is an evolving condition, and symptoms such as pain can also change, so treatments may work for a while, then they can stop being effective after a couple of years. This has an enormous impact on people’s mood and relationships, as experiencing chronic pain can take a heavy emotional toll.

That’s why it’s so important for people to keep talking to their treatment team about how their symptoms impact them and their loved ones. This gives the treatment team the opportunity to do all they can to ensure patients have ongoing support to help keep on top of their symptom management and explore other options if a treatment stops working.

Despite the challenges, significant progress has been made in improving management of some MS symptoms

One such example is the treatment of spasticity. In MS, spasticity occurs when the motor pathways become damaged and the neurons in the spinal cord become disinhibited and start firing randomly. The end result is that the muscles can spasm, which can be very painful and restrict movement.

While there are medications that can alleviate spasticity, neurologists have become far more aware of the value of physiotherapy and occupational therapy as a routine part of management.

Tomas highlighted the value of the NDIS (National Disability Insurance Scheme) in giving people access to ongoing services to reduce symptoms such as spasticity, as well as in supporting a more comprehensive approach to symptom management. For those without NDIS access, a greater effort is being made by healthcare teams to access other services and approach the problem more holistically.

Moving towards a patient-driven model of care in managing MS symptoms

Tomas shared that while he’s often frustrated by the limited options available to support people in managing MS symptoms, he’s observed that neurologists are increasingly more willing to talk with people about the impact these symptoms are having on their lives, even when the solutions aren’t clear. This willingness to open up difficult conversations reflects the changing practice of many doctors to a patient-driven model, where symptoms are discussed and validated even when a plan isn’t always clear and easy.

One of the ways in which Tomas and his team are trying to improve on what’s offered is to keep researching and conducting clinical trials. He used the example of high dose food supplements or vitamins which may reduce the impact of some MS symptoms such as pain. He’s hopeful that through research, he and his team can start to better understand symptoms and how they can be managed through many different avenues.

While MS disease modifying therapies (DMTs) are a part of the solution, they also come with their own barriers to making connections

The inconvenience of having infusions or having to self-inject can be restrictive, posing another barrier to a person’s ability to be part of the community on their own terms. Collaborating with their healthcare team when considering different treatments is important for a person’s understanding of the barriers and implications of DMTs on everyday living.

Also, while DMTs provide an opportunity for many people living with MS to treat their condition, they do come with safety risks. DMTs can tamper with the immune system, and it’s not fully understood what this means for people with MS. Fortunately, there’s a great deal of research being done to understand these risks and reduce their impact. Staying in touch with their healthcare team is one of the ways in which people can stay up to date with new information and many MS clinics such as Tomas’ are developing ways of communicating changes.

The future of MS care

Tomas believes that the future of MS care can be significantly improved by the implementation of dedicated spaces and resources for specialised MS clinics. This means MS clinics could run every day, with healthcare specialists co-located, so there’s one central place from which all care is organised. This could then become a healthcare community where people can access services when and where they need them, and the activity is centred around the person with MS and their family.

Key areas in MS research

Tomas highlighted that while a lot has been learnt about MS over the past 25 years, the challenge is getting the information from the ‘bench or the lab to everyday care and clinical practice.’

Tomas outlined some research collaborations that use the sharing of resources to learn more about MS and treatment, including:

• targeting a specific treatment to a specific person or a group of people with similar symptoms: studies such as the MSBase Study are helping neurologists move beyond the current model of decisionmaking based on their own experience, to evidence-based decision-making

• developing biomarkers: biomarkers are signals that may be found in the blood or brain and spinal fluid of people with MS. They can help better understand aspects of MS such as MS activity and how someone may respond to one type of treatment in the future

• capturing MS data and information – research into the use of personal self-monitoring devices and apps by people with MS is an exciting area of research that’s helping understand the everyday impact of MS and how MS changes over time.

While there was not enough time to discuss them all, for Tomas there are many other exciting areas of research – such a remyelination – that may help researchers find answers and in turn, make it easier for people with MS to live their best lives and make connections with others on their own terms.
 
Associate Professor Tomas Kalincik is a Neurologist, Statistician and Head of the MS Centre at the Royal Melbourne Hospital. He also heads up the Clinical Outcomes Research Unit at the University of Melbourne. Tomas is passionate about translating research outcomes to advance changes in care and medical treatment for people living with MS.

To watch the livestream, visit https://www.ms.org.au/ neurologist.

This article originally appeared in the Winter 2021 edition of Intouch Magazine
 



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