Managing symptoms – Who can help?
Not everyone with MSA has all the possible symptoms, but different people are available to support someone with MSA. We have listed some of these people below.
Therapists
There are a core group of Therapists who should be available to anyone with MSA. They all have a crucial role to play in making life as good as possible for as long as possible.
Physiotherapist – the ‘Physio’ as they tend to get called, can help the person with MSA to keep walking safely for longer. Their role is to keep limbs, muscles and joints all working the best they can. Physios can also help people with better deeper breathing and more effective coughing techniques.
Occupational Therapist (OT) – these Therapists are experts at seeing the difficulties people are having in their every day lives and helping find other ways to do those things. For example they may provide a special cup to help the person drink more easily or a ramp to get into the house with their wheelchair.
Speech and language therapist (SaLT or SLT) – these are the experts at helping people find ways to communicate when their speech is difficult. They can help someone make themselves understood through speech exercises, techniques, and communication aids that suit the person. The SaLT also monitors how someone swallows and can advise on ways to do manage this safely if things are going down the wrong way.
Other professionals who may help and be involved
GP (Doctor) – Their role is crucial to help get a diagnosis of MSA. Theyact as a first point of contact when the person with MSA is otherwise unwell. They can also adjust medications and ensure referrals are made to all the other necessary professionals who can help in different ways with specific symptoms.
Neurologist or Movement Disorder Specialist – These doctors are able to make the diagnosis of MSA and guide the GP about medications that may help. It is important that someone with MSA is seen regularly by the specialist. They are amongst the few professionals that will be familiar with MSA and able to ensure symptoms are picked up on and addressed.
Parkinson’s Disease Nurse – About 60% of people who have a diagnosis of MSA were thought to have Parkinson’s Disease at first and will have started Parkinson’s medication. The Parkinson’s Nurse will have been involved at this point. Most Parkinson’s Nurses are familiar with MSA and will continue to support people after the MSA diagnosis has been made. The other 40% of people with MSA may not have a Parkinson’s Nurse but it is worth asking if there is one in their area they could be referred to as they are a huge source of support and knowledge of helpful local services.
Bladder and Bowel Advisors – The people in this team can help find the best way to manage any toilet problems, providing any aids and supplies that may be needed.
Dietitian – Sometimes chewing and swallowing certain foods can be difficult but it is important to still get a good balanced diet. The Dietitian can work with the person who has MSA so they can still enjoy flavours and foods they like and keep a healthy weight.
District Nurse or Community Matron – These Nurses will visit people at home to check on symptoms and any changes in someone’s condition. They can refer to other professionals to provide help as needed and they do things like dressing wounds, giving flu jabs and changing bladder catheters.
Palliative Care Team – their role is to help the person with MSA have as good a quality of life as possible. The team may provide carers to visit people at home, advise the GP and District nurse about ways to manage tricky symptoms, and talk about how someone’s situation is changing and the care and support options they have.
MSA Trust – this is the charity supporting people with MSA, their family, friends and professionals that are involved who may not be familiar with MSA.