MS Carers: Spotting signs of progression

Primary caregivers have a big impact on the lives of their loved ones with Multiple Sclerosis (MS), but they are not the only ones. Along the winding road of someone’s MS journey they will come into contact with lots of different people who will play a role in their care, from their friends and family, to their neighbours and workmates. Every one of these people can help them on their journey and be their carer1.
 
A big part of the role of caring for someone with MS is the physical and emotional care that you provide - but it doesn’t stop there! It extends into helping with symptom tracking too. As a carer you can spot the signs of symptom changes that your loved one may miss or may not want to acknowledge. You can encourage them to discuss symptoms with their doctor and get ahead of MS progression. 

The importance of tracking symptoms

Changes in symptoms can be indicators of MS transitioning from the RRMS (Relapse-Remitting MS) phase to the SPMS (Secondary Progressive MS) phase. In the RRMS phase, distinct relapses where symptoms intensify and then decrease are seen, while in the worsening of SPMS, symptoms become more consistent and persistent. It’s therefore important for you and your loved one to keep an eye out for any changes and keep track of them. These can then be shared with their doctor so that they can identify whether the changes signify a change in MS phase and if so, they can work with you to find the right management method to help slow progression.

Spot changes your loved one can’t

The change from one phase to the next can be gradual and symptom changes can be subtle, so it’s not always easy for people with MS themselves to keep track. Some changes may not be as noticeable to them as they may be to those around them. That’s why the people who care for someone with MS are vital for helping to track symptoms – you may spot differences that they hadn’t noticed. 

Know what to look out for

The main signs of progression from RRMS to SPMS is a decrease in relapses and a general worsening of symptoms. This includes changes in cognitive symptoms, such as increased memory problems, and perhaps a worsening of fatigue. Signs to look out for include:2,3

Cognitive changes:
⦁    They lose concentration when reading a book or find it more difficult to focus on work
⦁    They are more forgetful, for example forgetting an anniversary or someone’s name
⦁    Their mood is noticeably different 2

Physical changes:
⦁    They find physical activities such as walking the dog or playing with grandchildren more difficult than in the past
⦁    Tasks that involve using their hands such as texting or washing up are more challenging for them – they may seem to drop objects more
⦁    They need to visit the toilet more often due to bladder issues2

Energy changes:
⦁    They miss out on fun activities or special events because they don’t have energy or feel able to attend
⦁    You have taken on things, such as chores, that they used to do themselves
⦁    Naps or rests become more frequent as they are more fatigued and get tired more easily2

Talking to a doctor

It’s sometimes hard for someone living with MS to think about the possibility of progressing so, as someone close to them, it’s important that you help them through what can be a difficult time and you can help them get ahead of MS progression. It’s a good idea to have an open conversation with them and discuss the possibility of visiting a doctor to discuss symptom changes.

Keeping track of these changes, whether it’s through a diary, app or tracking tool, can also help you and/or your loved one when it comes to talking to a doctor, neurologist or another healthcare professional. It can also be helpful, before a doctor’s visit, to take time to think specifically about your loved one’s symptoms in comparison to six months or a year ago and note down any changes you’ve noticed over that time period2.

Getting the right treatment

Different phases of MS require different treatments, so the earlier symptom changes are shared with a doctor, the sooner action can be taken to identify whether MS is progressing, and a management plan can be discussed.
By helping your loved one to track symptom changes and speak to a doctor, you could help your loved one get ahead of MS progression.

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