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«With best wishes, Fergus Logan Chief Executive Please note: the term PSP is used throughout to refer to both PSP and CBD. Acknowledgements Thanks go ...»

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Carer’s Information Pack

Introduction

Welcome to The PSP Association. This pack is designed to help you

manage PSP or CBD, particularly if you are caring for someone with

either condition.

We hope that the pack answers many of the questions you may

have, be it about arranging financial support or managing the

symptoms, as and if they arise.

We’re also here to help.

Several of us at The PSP Association have cared for our own family

members with PSP or similar conditions. All of our Specialist Nurses have valuable and relevant professional experience.

We’ve split the pack into four manageable sections to make it easier for you to find the information you need.

Remember that we’re here to support you on your journey. We also remain focused on finding treatments and an eventual cure for these diseases, as well as encouraging the health and welfare services to provide the best possible support for you.

Do let us know if we can be of service in any way.

With best wishes, Fergus Logan Chief Executive Please note: the term PSP is used throughout to refer to both PSP and CBD.

Acknowledgements Thanks go to the specialists who have contributed to the

development of this information, including:

Sheila Wight, Specialist Speech and Language Therapist, Newcastle General Hospital Fiona Lindop, Specialist Physiotherapist, Derbyshire Royal Infirmary Rosemarie Cuskeran, Oral Health Coordinator, Community Dental Services, Western Health and Social Care Trust, Northern Ireland, and Sonia Montgomery, Team Lead Life Skills, Health Improvement Department, Northern Ireland PSP Nurse Specialists: Jill Lyons, Kat Haines, Samantha Pavey, Katie Rigg Contents 1 About PSP and CBD What is PSP What is CBD Living with the conditions 2 Symptoms Mobility Sight Speech (including alphabet board) Swallowing Saliva Oral health Bowel and Bladder Behavioural changes 3 Help & Support Going into Hospital Advice for Ward Staff Communications advice Getting About Transport Work, Finance and Benefits Benefits - Further information Support for Carers Complementary Therapies Holidays 4 Later in Life Continuing Care Choosing Care Brain Donation Legal Issues PEG Feeding About PSP and CBD PSP and CBD About What is PSP?

Progressive Supranuclear Palsy (PSP) and Cortico Basal Degeneration (CBD) are closely related neuro-degenerative diseases. They are caused by the progressive death of nerve cells in the brain, leading to difficulty with balance, movement, vision, speech and swallowing.

Progressive Supranuclear Palsy (PSP)

The condition is so called because it is:

• Progressive - it gets steadily worse over time • Supranuclear – it damages parts of the brain above the peasized ‘nuclei’ that control eye movements • a Palsy – it causes weakness The main symptoms Early symptoms may include loss of balance and unexpected falls (usually backwards), stiffness and eye problems. These can include difficulties in looking up or down, focusing, double or tunnel vision and dislike of bright lights.

Some people can experience behavioural and cognitive changes - depression, apathy, clumsiness, or tiny, cramped handwriting. Early on, symptoms may resemble those of other neuro-degenerative diseases such as Parkinson’s disease, Alzheimer’s disease, Motor Neurone disease or Multiple System Atrophy. As a result many people are initially misdiagnosed.

As PSP progresses, symptoms increase. There may be problems with swallowing, slurred speech, recurrent falls, irritability and apathy, slowness of response and severe difficulties walking.

Sometimes the eyelids close involuntarily and it becomes increasingly difficult to look up or down. Emotional lability, such as laughing or crying inappropriately, may be another feature and there can be incontinence.

The average life expectancy is around seven years from onset.

However, every case is different – there is considerable variation in the symptoms and rate of progression in individuals.

–  –  –

Is it inherited?

There is no evidence to suggest that PSP is inherited but research has indicated there may be some genetic susceptibility that makes some individuals more at risk of developing PSP than others.

How common is it?

Research into the prevalence of the disease suggests that in the UK there are around 4000 people living with PSP. This research is now over 10 years old and some neurologists believe the number could be higher.

It is often initially diagnosed as Parkinson’s disease, a stroke or a brain tumour due to the slowness of movement and balance problems, or as Alzheimer’s because of changes in mood, intellect and personality. PSP often goes undiagnosed in the elderly, especially those in residential care homes. Data held by The PSP Association indicates that 3 out of every 4 people with PSP are initially misdiagnosed and often repeatedly misdiagnosed with other medical conditions.

How is PSP diagnosed?

There are no simple tests to diagnose PSP. Brain scans can help neurologists with diagnosis by excluding other conditions. Diagnosis relies on a characteristic mix of symptoms but can only be confirmed by post mortem examination of brain tissue.

What treatment is available?





There are no effective treatments for PSP. However there are many therapies to help manage symptoms and people with PSP should regularly see a neurologist and palliative care team. In the future, we hope that research will lead to new treatments to stop or slow down the progression of the condition.

2 About PSP and CBD Cortico Basal Degeneration (CBD) CBD is another degenerative brain disease, affecting people from the age of 40 onwards. Although there are biological similarities to PSP, with similar nerve cell damage and build up of tau protein in the brain, the classical clinical picture is quite different.

• Cortico - affecting the brain cortex • Basal - also affecting other parts of the brain such as the basal ganglia • Degeneration - death of nerve cells in the brain The main symptoms CBD often starts with progressive numbness and loss of use of one hand. There can also be jerking of the fingers, slowness and awkwardness and an ‘alien limb’ – with complex unintentional movements of one limb causing problems with normal motor tasks.

Gradually the arm and/or leg on one side is affected and then the arm and/or leg on the other. People with CBD often have trouble controlling one hand when doing everyday things such as writing or tying shoelaces – tasks that involve individual muscle movements we take for granted. There can also be disturbance of the eye movements but these are normally less debilitating than in PSP.

How common is it?

As yet, there has been no research into the prevalence of CBD but we do know that it is much less common than PSP. Again, people are often initially misdiagnosed as having Parkinson’s disease or a stroke.

Is there any treatment?

At the moment there is no treatment to stop or slow the progression of CBD. However, many symptoms can be treated and are usually managed in a similar way to those for PSP.

–  –  –

4 About PSP and CBD Living with PSP The way PSP affects people in the early stages varies from person to person. The changes may be subtle and symptoms may be similar to those found in other conditions, making diagnosis difficult. There is no definitive test, diagnosis is made by clinical observation considering the diagnostic criteria. It may therefore take some time to obtain a correct diagnosis.

Many people present with a movement disorder, are referred to a clinic specialising in Parkinson’s disease and are treated accordingly.

After Diagnosis When PSP is suggested, families will probably never have heard of it. They are likely to experience a mixture of relief at being given an identifiable name, and distress at receiving this diagnosis.

Understandably, people find it hard to absorb the information straight away.

These feelings are perfectly natural and in the following days and weeks, families may experience a mixture of denial, anger, panic or grief.

Most families find that these feelings subside as support becomes available and they have time to come to terms with the diagnosis.

Individual family circumstances and the response of your local health and social care services will have a bearing on the length of time this process takes.

Daily Living PSP has a wide range of symptoms and the severity and progression varies widely between individuals, so don’t believe that everything you hear will happen in your case.

If and when you need advice on the management of a particular symptom, contact your neurologist, GP or other relevant local health professional.

–  –  –

6 About PSP and CBD • The health and welfare services • Many voluntary and charity organisations, including The PSP Association.

In particular, people with PSP and carers need to support each other to ensure that their needs are met.

Sometimes families can feel isolated, but there are many people who can help. They won’t be needed at once but can be introduced as the need arises or when suggested by your Neurologist, GP or Nurse Specialist.

Your location will have an impact on how much you have to do yourself to ensure you receive the help you’ll need. Some areas allocate case managers from either the NHS or Local Authority. They’ll work on your behalf to coordinate any health, welfare and financial support you need.

In other areas, you may have to take on more of this task yourself, but there are many voluntary organisations that can assist. Many of those organisations are mentioned elsewhere in this guide.

Communication Many problems occur with the health and welfare services because people don’t understand the implications of PSP. This means that you as carer, and the person with PSP must be honest and open with each other on what their needs are.

Sometimes, the challenge is to ensure that the health and welfare services understand what is needed.

Since PSP is a comparatively rare illness and often misdiagnosed, most health and welfare workers will not have seen a case before. You may know more about it than they do. In order to help them give you as much support as is available within local resources, we suggest that

you:

• Press your case politely, but firmly. Health and welfare resources in many areas are stretched, and it is a sad fact that those who press their case tend to get noticed.

• Prepare for meetings or visits to assess your needs. What do you want to get from the visit, and what information would help the

health or social worker? Prepare a short summary as follows:

–  –  –

8 About PSP and CBD Summary There are no hard and fast rules and sadly no easy answers when living

with PSP, but the golden rules are:

• Help is available, do not be afraid to ask for it • Sometimes a problem shared is a problem halved. Our nurses are on the end of the phone when you feel you need to talk, or are just having a bad day and feel you want to offload some of your worries.

• You are not alone in your struggle.

• You can only do your best, none of us is perfect.

• Try to find something, however small, in each day to enjoy.

• Plan for the future (e.g. adaptations to the home, obtaining specialist equipment).

• Live for today.

–  –  –

10 About PSP and CBD Symptoms Symptoms Mobility PSP damages neurons in the brain, especially the regions associated with movement and balance control. This can lead to slowness in movement, impulsiveness (particularly in sitting and standing up), muscle rigidity and deterioration in posture, gait and stamina.

Difficulties with movement and balance are a common feature of PSP. It’s important to minimise the resulting number of falls.

These are often backwards, without warning and can result in serious injury.

After diagnosis, you should be referred to a physiotherapist (PT) and occupational therapist (OT). You can do this through your GP or refer the person yourself at the local hospital or community health centre. There are also many independent therapists who run clinics and make home visits (see useful addresses).

Many shops offer a wide range of aids to help with daily living and getting around the home safely. However, if the aid is complex or expensive, it’s best to get the opinion of an OT or PT first. A good source of independent advice is available from Assist UK who are funded by the NHS. They operate over 50 showrooms that have a wide range of aids, as well as a bulletin board for second-hand items. Visiting is usually by appointment, to ensure that an OT is available to discuss your needs. You can find out where your nearest showroom is at www.assist-uk.org or by calling 0870 770 2866.

Physiotherapy

The physio will do an assessment and can advise on:

• Stretches for stiff muscles and joints to prevent or relieve rigidity.

• How to improve or maintain muscle strength with general or specific exercises or provide an exercise programme for the person to follow at hospital or at home.

–  –  –

Walking Frames and Balance PTs, sometimes in conjunction with OTs, provide and advise on walking aids such as wheeled frames and wheelchairs (see below).

Walking frames should be solid and weighted to avoid backward falls.

Lightweight aluminium Zimmer frames are not appropriate for use by people with PSP. A “U-Step” frame1 may be beneficial, without the laser beam function. (The physio will know what this is). A few people with U-Step is a brand name, developed for people with Parkinson’s Disease. They can include a laser beam function, which is expensive and generally not needed for people with PSP 2 Symptoms PSP find that wearing built up shoes helps shift their weight forwards, reducing the tendency to fall backwards.

Occupational Therapy An OT should provide an assessment of the home environment and advise on equipment and strategies to maximise safety and wellbeing. Funding may be necessary to provide adaptations to a home and Social Services can advise.



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