The role of the physiotherapist in the management of the late

effects of PolioAnne GlynnClinical Specialist PhysiotherapistMSc MCSPNeurorehabilitation TeamColchester General HospitalEssex

Anne GlynnBritish Polio Fellowship Roadshow 2014

Plan•Why me?•The Colchester Service - Team•Experience of working with people with Polio•PPS – my understanding

▫Management of PPS •The role of the physiotherapist

▫Neurophysiotherapist▫Who is the right physiotherapist for you?▫What do we do?

•SummaryAnne GlynnBritish Polio Fellowship Roadshow 2014

Why me?•Interest

▫Orthotist▫British polio fellowship

•Evening meeting•Background

▫Neurology over 20 years▫MSc Health Sciences 2005▫Non-medical Prescribing 2007▫Specialist interests –vestibular rehabilitation,

PD, spasticity management, MND and now Polio!Anne Glynn British Polio Fellowship Roadshow 2014

The Colchester Neurorehab Team•Established 1994•“The Neuro-Rehabilitation Team works

with individuals suffering from neurological impairment to facilitate their achievement of optimal levels of functioning and quality of life”.

•Work with family, carers and voluntary organisations

•ReferralsAnne Glynn British Polio Fellowship Roadshow 2014

Area covered by the team

Anne Glynn British Polio Fellowship Roadshow 2014

Patient Numbers(recorded 24/3/2014)

MS 386PD 372Stroke 127TBI 53Vertigo 135MNDHD

3230

OtherPolio

288(17)

• Some on a course of current treatment

• Others on a review system i.e. 6 month contact

• All patients have direct access to team and encouraged to contact us with concerns

Total 1423Anne Glynn British Polio Fellowship Roadshow 2014

The Neurorehab Team• Consultant

Neurologists• Clinical

Psychologist• Nurse

Specialists– Parkinson’s

Disease– Multiple

Sclerosis– Traumatic

Brain Injury• Secretaries

•Physiotherapists▫Clinical Specialist▫2 Specialists▫1 rotational▫Rehab assistant

•Occupational Therapists▫2 Specialist OTs▫1 rotational OT▫Technical

Instructor▫Rehab assistant

Anne GlynnBritish Polio Fellowship Roadshow 2014

Other services • Orthotics• Wheelchair services• Speech and language

therapy• Dieticians• Respiratory Consultants• Musculo-skeletal out-

patient physiotherapists• Hydrotherapy

Anne Glynn British Polio Fellowship Roadshow 2014

Patient Pathway

•Referrals - discussed at a weekly Tuesday team meeting ▫Average 80 / month + 15 VR

•Allocation of initial assessment •Single Assessment with team

feedback•Joint appointments•Referral to appropriate services•Review/open contact

Anne Glynn British Polio Fellowship Roadshow 2014

Experience of working with people with Polio

•Stories•Questionnaire•Its complicated!

•Support group•Compare to other neurological patients I

see?▫Lack of progression – then progression▫SCI, Stroke, TBI – MS, PD, MND

Anne Glynn British Polio Fellowship Roadshow 2014

Stories

Anne Glynn British Polio Fellowship Roadshow 2014

Its complicated!

Lived your life

Success

Fulfilled

Individual musclesSkeletalIsolation

MemoriesRehab experience

Dreams?

Support?

Medical?

Social?

New difficulties

Acute phase

Coping?

Other health issues

Other life traumas?

Fear?

Distanced from the voices of our bodies Dr Lauro Halstead

Denial?

Anne Glynn British Polio Fellowship Roadshow 2014

What was my role in working with people with polio?• It has been good to build up a relationship with

Anne and to have an open appointment to attend for physio with someone who understands my symptoms

• Better than any previous service that I have received

• You helped me get my orthotics for my shoes• All around encouragement and treatment – both

physical and emotional well-being.• You got me the help I needed

Anne Glynn British Polio Fellowship Roadshow 2014

What was my role in working with people with polio?

• I felt I was being listened to and was given advice and help with my walking as well as given exercises to do

• I found your clinic a more personal programme for my needs – others in the past have been more general

•Very helpful suggestions for exercises•Good luck with the road shows!

Anne Glynn British Polio Fellowship Roadshow 2014

How did other members of the team help?Occupational therapy

•They helped to find funding for a mobility scooter and a stair lift

• I have had a number of adaptations done around my home e.g. banister rails, a step and rails at the door.

•They came to my home to assess my needs

Anne Glynn British Polio Fellowship Roadshow 2014

How did other members of the team help?Hydrotherapy

• In my individual case it has proved very beneficial

•Beneficial while in the pool but did not make a difference out of the pool

• It had a bad affect on my BP over the following days

Anne Glynn British Polio Fellowship Roadshow 2014

Was there a benefit in attending a joint orthotic clinic?

•Nice to have Anne there to support me• I have not been, but I am sure if it is

needed the team will advise me•Yes I found it helpful; Anne came up with

some good ideas• I was introduced by neuro team as I had

not seen an orthotist before

Anne GlynnBritish Polio Fellowship Roadshow 2014

Would you recommend the team to other people with Polio?

•Definitely x2•Yes• I don’t know anyone else with Polio•Yes, I have often told people about how

they have helped me•Most certainly, as Polio is a forgotten

disease

Anne GlynnBritish Polio Fellowship Roadshow 2014

What could we do better?• I would like to meet up with others with

the same diagnosis• I would be interested in attending any

local meetings•Not sure – everything was good•Nothing, you’re doing very well• I feel post polio syndrome needs to be

talked about more. When I have spoken to my GP about PPS she looked rather vague and had never heard of it

Anne Glynn British Polio Fellowship Roadshow 2014

PPS – My understanding• Development of new weakness, fatigue, pain and

decreased function in people previously affected by polio

• Diagnosis (Definition Halstead 1991) Polio Recovery and plateaux Progressive weakness (gradual or abrupt) Exclude other causes

Neurological, orthopaedic, anaemia, diabetes Respiratory, depression

• Treatment and rehabilitation management in PPS is not yet established – Cochrane Review 2010

Anne GlynnBritish Polio Fellowship Roadshow 2014

What happens?•The construction worker analogy

Julie Silver 2001(Post-Polio Syndrome – A Guide for polio survivors and their families)

Anne Glynn British Polio Fellowship Roadshow 2014

Management of PPS•Thorough assessment of symptoms •Other conditions – cure! /management 1. Weakness 2. Fatigue3. Pain

▫Joint▫Muscle

• Falls – each year 35% of over 65 year olds fall (45% in over 80s)

Anne Glynn British Polio Fellowship Roadshow 2014

Management of other conditions•Exclude in diagnosis of PPS•Cardiovascular risk•Diabetes•Mood•Respiratory conditions•Osteoporosis•Medication

▫Side effects

Anne Glynn British Polio Fellowship Roadshow 2014

1 Management of weakness •Avoid over use – preserve to conserve•Exercise

▫Endurance . Aerobic – cardiovascular conditioning – vary and enjoy!

▫Stretch – flexible muscles and joints (care!)▫Strengthen

When possible – disuse, unaffected and moderately affected

Not intensive . No painAnne Glynn British Polio Fellowship Roadshow 2014

2 Management of fatigue“My muscle power and endurance are as coins in

my purse: I have only so many and they will only buy so much. I must live within my means, and to do this I have to economise: what do I want to buy and how can I buy it for the least cost?”

“Growing old with polio is a matter of economics: cost/ benefit analysis. How much expenditure of limited energy for how much satisfaction. Minimise the exertion; maximise the pleasure”

Hugh Gallagher 1995

Anne Glynn British Polio Fellowship Roadshow 2014

Management of fatigueEnergy conservation•Prioritise - Lifestyle changes•Plan - Regular rests•Pace -learning to recognise your own

baseline of activity and rest (Leaflet)•Physical fitness•Sleep•Avoid excessive fatigue (Borg scale)

Anne Glynn British Polio Fellowship Roadshow 2014

3 Management of Pain Joint pain Muscle pain

• Modification of activity• Gentle paced exercises• Postural alignment• Orthoses

▫Brace unstable joints▫Rest overused

muscles• Equipment –wheelchair,

walking stick• Medication• Electrotherapy

• Activity reduction• Pacing• Lifestyle modification• Equipment• Diary

Anne Glynn British Polio Fellowship Roadshow 2014

Physiotherapy in the management of PPS•Education and support• Aim – Keep you as independent as possible and

able to maintain your optimum quality of life.• Educate the need to:

• Learn to listen to your body (subjective)• Learn to pace

• Encourage optimum general health – weight, diet.

• Learn to accept limits – adapt to changes – accept support

• Long term follow up. Anne GlynnBritish Polio Fellowship Roadshow 2014

Physiotherapy in the management of PPS•Reduce symptoms of PPS•Prevent worsening PPS•Exercise

▫“Lower intensity, short duration, intermittent activity or exercise performed within subjects limits of fatigue, weakness and pain – without adverse responses” E Dean, M Dallimore 2004

•Principle based approach – not standardised treatment regime

Anne Glynn British Polio Fellowship Roadshow 2014

Neurophysiotherapy vs the others!•What is a neurophysiotherapist?•Who is best for you?

▫Team▫Shoulder pain? Neck pain?

•Your need /their skills•You may be the 1st person with Polio and

symptoms of the late effects of Polio they see▫Get them interested▫Give them the information!Anne Glynn

British Polio Fellowship Roadshow 2014

Physiotherapy AssessmentSubjective• History. What are your concerns?

▫Pain? Where? When? Anything help? Aggravate? Management

so far?▫Function?

Stairs? Outdoor mobility? Dressing? ▫Respiratory issues? Falls?▫Medication

• What is your understanding of symptoms? Belief ?• Psychological• Social• GOALS

Anne GlynnBritish Polio Fellowship Roadshow 2014

Physiotherapy AssessmentObjectiveClinical examination• Observation

▫ Posture – lying, sitting, standing, walking▫ Previous operations – fusion

• Movement▫ Range, quality▫ Muscle power (0- 5 ). Affected or not? Disuse or overuse

• Function▫ On off bed.

• Gait . Walking aids• Palpation

▫ Joint – pain, swelling, stabilityAnne Glynn British Polio Fellowship Roadshow 2014

Benefits of exerciseIt's medically proven that people who do regular physical activity have:• up to a 35% lower risk of coronary heart disease and stroke • up to a 50% lower risk of type 2 diabetes • up to a 50% lower risk of colon cancer • up to a 20% lower risk of breast cancer • a 30% lower risk of early death • up to an 83% lower risk of osteoarthritis • up to a 68% lower risk of hip fracture • a 30% lower risk of falls (among older adults) • up to a 30% lower risk of depression • up to a 30% lower risk of dementia What counts?Moderate-intensity aerobic activity means you're working hard enough to

raise your heart rate and break a sweat. One way to tell if you're working at a moderate intensity is if you can still talk but you can't sing the words to a song.

Dr Nick Cavill www.nhs.uk/Livewell/fitnessAnne Glynn British Polio Fellowship Roadshow 2014

Individual home exercise programme

Risk Benefits

Reduce risk1.Avoid over-

doing it.2. Pace3. Rest

Anne Glynn British Polio Fellowship Roadshow 2014

Link with team• Gateway to help

▫Accept physiotherapy• Occupational therapy• Refer to specialist physiotherapy colleagues

▫Hydrotherapy▫Musculo-skeletal, spinal▫Pain management

• “Patient satisfaction with therapists is associated with degree of emotional support and understanding received”. P Ley 1988

Anne GlynnBritish Polio Fellowship Roadshow 2014

You can change some of it

Lived your life

Success

Fulfilled Individual musclesIsolation

Memories

Rehab experienceDreams?

Support?

Medical?

Social?

New difficulties

Acute phase

Coping?

Other health issues

Other life traumas?

Fear?

TalkJoin a groupSet up a group!

Let go of unrealistic expectations

RelaxationExerciseKeep healthy

Ask for help

LifestylePacing

Let go of unrealistic expectations

Denial?

Anne Glynn British Polio Fellowship Roadshow 2014

Resources• British Polio Fellowship• Lincolnshire Post-Polio network• Post Polio Syndrome – Management and

Treatment in Primary Care (PP Support Group Ireland 2007)

• Postpolio Syndrome J Silver, A Gawne (2004)• Post-Polio Syndrome – A Guide for Polio Survivors

and Their Families J Silver (2001)• Post-polio syndrome – advice on the management

of your symptoms. Information from the Lane Fox Unit

Anne Glynn British Polio Fellowship Roadshow 2014

References• R S Howard (2005) Poliomyelitis and the

postpolio syndrome. BMJ 330: 1314-1319• E Farbu (2005) Post-Polio Syndrome – Diagnosis

and Management. JACNR 5: 10-11• R Bridgens, S Sturman, C Davidson (2010)

Clinical Medicine 10: 213-214• E Farbu et al(2006) EFNS guideline on diagnosis

and management of post-polio syndrome. European Journal of Neurology 13:795-801

• Treatment of Postpolio Syndrome - Cochrane Review 2010

•Anne Glynn British Polio Fellowship Roadshow 2014

Summary“Find someone who will work with you and

is willing to learn and help” Roller and Maynard 2002

•You are the experts – be our teachers•Thank you for the invite – I have learnt in

the process•Now we all need to spread our knowledge

and experience

Anne Glynn British Polio Fellowship Roadshow 2014

And finally!•Thank you – my teachers /patients •The future?•My goal

▫Support development of local support group

▫Gain greater expertise in managing people with PPS

▫Offer study afternoon to ACPIN East

Anne Glynn British Polio Fellowship Roadshow 2014

Anne GlynnBritish Polio Fellowship Roadshow 2014