Caring for the person with advanced MS

A workshop for carers in residential or nursing homes

byMiranda Olding RGN MSCN

Clinical Nurse Specialist in MS

Summary MS summary

Invisible disabilities

Symptom management in advanced MS

Palliative care & end of life issues

Beds & Northants MS Therapy Centre

Multiple Sclerosis The most common cause of neurological disability

in the under 65s

100,000 in UK

1 in 625

3:1 Female to male

Symptoms and severity very variable

Causes of MS? Unknown. Genetic predisposition, familial risk, interacts with

environmental factors to trigger autoimmune response.

Environmental factors: Sunlight, latitude, vitamin D Epstein Barre virus (glandular fever) Female hormones 3:1 female-male ratio Prognosis also affected by smoking & diet

Physiology Blood-brain barrier is

breached Immune cells enter central

nervous system Target myelin Demyelination –

destruction of the fatty sheath that coats the nerve.

Remyelination – repair of the damage does occur – especially in the early years

Varied disease patternsTypes of MS

BA C

Adapted from Lublin FD Reingold SC. Neurology 1996;46: 907-11

Relapsing Remitting MS

Relapses Remissions

Can be lots of invisible symptoms/disabilities

These may be, or can progress over time to become permanent problems

Which we will explore more in the next section.

Lottie:32yrs, works in admin. Recently married. Invisible symptoms:

Lottie:32yrs, works in admin. Recently married. memory problems, anxiety re work vertigo, dizziness, relapses TrigeminalOptic neuritis, diploplia neuralgia Central motor fatigue Muscle weakness

Tremor, Ataxia Constipation, and faecal urgencyUrinary urgency, residual, UTIs Numbness, tingling, loss dexterity sexual problems related to fatigue & altered sensation muscle stiffness & spasm, spasticity

Altered sensation & Pain Drop foot

Fatigue

Fatigue

© MS Society ‘Multiple Sclerosis – the quick guide’

Emily 63 years old Married 3 children Part time volunteer work Does the books for husband

Emily’s worst problem at the moment:

Can’t get tickets for Take That’s next gig

Caring for the person with advanced MS

Common symptoms in advanced MS

Mobility problems Ataxia, tremor Spasticity Pain Neurogenic Bowel dysfunction Neurogenic Bladder dysfunction Cognitive and/or emotional problems Dysphagia – swallowing problems Dysphasia, dysarthria, dysphonia – talking

problems

Spasticity

Spasticity

List 5 problems that spasticity causes:

…………………………………………….. ……………………………………………… …………………………………………….. ………………………………………………. ………………………………………………

5 steps of Spasticity management

What are trigger factors?

…………………………………………… …………………………………………… …………………………………………... …………………………………………… …………………………………………… ………………………………………….... …………………………………………....

Trigger factors Urine infection – dipstick for leucocytes or nitrites & treat. Infection – cough, cold, flu Constipation Sore skin, pressure areas, ingrown toenails Clothing/splint/shoes that are chafing Posture & seating Periods of increased stress

Physical Interventions Remove trigger factors

Physiotherapy Assessment – Is the spasticity needed for

transfers etc? If needed – prevent contracture & over-use If not, re-educate movement patterns Maximise use of weakened muscles Maintain & improve soft tissue length

Non-pharmaceutical approaches

Splinting, Seating, Positioning & posture Standing, Stretches, passive movement Movement exercise, strengthening Sleeping position, pillows for slightly bent Knees, etc T rollsNon-pharmaceuticals: magnesium, B vitamins Cannabis, cannabinoil

Pharmacological management Baclofen Gabapentin / Pregabalin Tizanidine Dantrolene Diazepam at night Clonazepam 0.5mg Start low, go slow. Increase til therapeutic dose Add another If no effect, refer to physio, MS Nurse and if

necessary specialised spasticity services

Side effects of muscle relaxants Sedation Weakness Constipation Weight gain Possible liver problems ( tizanidine, dantrolene

esp)

And others Balance effects of drug with problem Titrate up & down

Sativex

2nd line Spasticity interventions

• Botox

Intrathecal Baclofen (ITB™)

© Meditronics

neurosurgeryneurosurgery

Who can help? Nurse, GP ( meds) Physiotherapist OT ( splinting/ orthotics) Rehab consultant? Wheelchair services Neurologist – botox Referral to specialist spasticity clinic – locally we use

The National Hospital for neurology & neurosurgery ‘Queen’s Square’

Specialist seating referral – Oxford centre for rehab & re-enablement

Stages of pressure sore development

Considerations for pressure care

Waterlow Scale likely to be extremely high

Loss of sensation Memory problems Spasticity/high tone Shoes, splints,

clothes, catheters

Seating – work with wheelchair services,eg tilt in space? Footplates

Mattress Use pillows to keep

knees separated Involve District

Nurse Tissue Viability Nurse Prevention best

Altered Sensation Numbness Tingling ‘Electrical’ feelings Pins & Needles ‘crawling’ sensations “ like ants” Electric shocks L’hermittes sign (electric shock down spine when bends head Banding /’MS Hug’ Treated if necessary, as pain

Pain

Pain ‘an unpleasant sensory and emotional experience

associated with actual or potential tissue damage, or described in terms of such damage’

-International Association for the Study of Pain 1979

‘Pain is whatever the experiencing person says it is, existing whenever the person says it does’

-McCaffery 1968

Types of pain‘normal’ – nociceptive ‘nerve pain’ - neuropathic

Pain in MS

Common muscle spasm – ‘cramp’, or tone/spasticity –

‘tight’ Neuropathic pain – burning, pins & needles,

electric shocks, stabbing & shooting Musculo-skeletal, back/joint pain due to posture,

mobility & gait problems Pain of fatigue “ Like I’ve run a marathon” Trigeminal neuralgia L’hermittes sign Optic neuritis

List 5 effects of pain ………………………………. ………………………………. ………………………………. ………………………………. ……………………………….

Effect of pain on pwMS Mood – irritable, anxious, depressed………….. Sleep………………………………………………. Ability to do things/function, work, socialise…… Increase fatigue………………………………….. Affect relationships……………………………….

What can you do?

© MS Society ‘Multiple Sclerosis – the quick guide’

Pain gate theory

What opens the Gate? Physical factors: Extent of injury Inappropriate activity level Emotional factors: Fear, stress, anxiety, depression Mental factors: Concentrating on the pain Boredom

Gate is opened, increasing perception of pain

When the Gate is Open protect painful areas by not using them – muscles

de-condition, causing weakness and loss of stamina

This means eventually a usually non-painful sensation such as stretching, can be perceived as painful

Persistent pain cycle

What can Close the Gate?

Positive emotions – happiness, interest, excitement

Concentrating on something else / distraction

Analgesics / treatments

Relaxation techniques

Counter stimulation – eg heat, massage, TENS

Activity/exercise/stretching

Neuropathic pain meds Gabapentin Pregabalin Amitriptyline Duloxetine Capsaicin cream

Side effects Amitriplyline family: Common: Dry mouth, constipation,

dizziness, blurred vision, urinary retention, drowsiness, palpitations,

Also: cognitive problems, confusion, gait disturbance, falls, dementia

Gabapentin family: Common: somnolence, weight gain, dizziness, peripheral oedema, headache, dry mouth, blurred vision, diploplia, dysarthria, abnormal co-ordination, parasthesia

Also:  sexual dysfunction, constipation, vomiting, flatulence, memory impairment, vertigo, increased creatine kinase level, memory impairment, increased risk of depression & suicidal thoughts and behaviours.

Non pharmaceutical options Physical therapies: Complementary therapies; massage, bodywork,

acupuncture, reflexology, acupressure, osteopathy etc Electrotherapies eg TENS Mental/emotional Hypnosis/self-hypnosis, NLP Cognitive behavioural therapy, Mindfulness Self management Exercise, yoga, tai chi, massage balls, supplements,

acupressure/reflexology points, stretching, cannabis/cannabinoil

Dynamic movement orthoses

Action Potential Simulation ( APS Therapy)

Developments

Who can help? Nurse & GP MS Specialist nurse Pain clinic

Bowel problems Normal function requires:

Sensory and motor nerve messages; bowel-spine- brain –bowel Having sensation Muscular action Muscular control Reflexes Intestinal motility

All of these functions are often affected in MS.

List other factors that contribute to bowel problems in MS

…………………………………. …………………………………. …………………………………. …………………………………. …………………………………. …………………………………. …………………………………. …………………………………. ………………………………….

Other factors that contribute to bowel problems in MS

Reduced ability to exercise Inability to get into a good position Reducing fluid intake because of urinary urgency Eating a diet low in fibre Missing meals, especially breakfast Difficulty getting to toilet, or reliance on carers Medication e.g. anti-cholinergics and anti-depressants Also drugs used for pain in MS, like Amitryptilline,

tegretol Preferring constipation to faecal incontinence Inability to raise intra-abdominal pressure ( bear down)

Correct position for elimination

Common bowel problems in MS Constipation

Fecal urgency / incontinence

“Fecal incontinence is one of the most psychologically and socially debilitating conditions….. It can lead to social isolation, loss of self-esteem and self-confidence, and depression. 

What can you do? Assess for constipation – Bristol Stool Chart,

frequency Incontinence – could it be overflow? Understanding, Kindness & Patience Ensure healthy diet Ensure adequate fluids – not all caffeinated Request medication review Try to establish a routine – ½ hr after breakfast

often good Comfortable & supported on toilet -? OT / physio? Ensure taking bowel medication If ongoing problems, refer to continence service

‘managed bowel’ Suppositaries Glycerin ( softens and digital stimulation) Bisacodyl ( stimulant laxative)

Enemas Microlax /Fleet

Irrigation systems

Peristeen, Qufora, Irypump Unmanageable constipation Unmanageable fecal urgency/incontinence Mixed pattern

Qufora bed system

Bladder Most people in care homes will be catheterised DN/nursing staff lead the care plan

Blocking Bypassing Infection

Refer to continence/urology if ongoing problems Be aware of alternative products

For example….

Cognitive problems Cognition refers to memory and thinking. ‘Cognitive problems’ • Understanding and using language • Recognition • Learning, remembering and recalling

information • Concentrating • Thinking, reasoning and problem solving • Organising, planning, carrying out,

reviewing,evaluating 65% of PWMS at some point Not always permanent

Brain atrophy in advanced MS

What can you do? Understand; pwms may not remember self-care Write everything down Give person time and understanding, reassurance Acute worsening? Check for infection, esp UTI Check with relatives/ carers – is this new? Talk to the person about the difficulties – are there any

tips or strategies they use? Using routines and familiarity helps Don’t mistake dysarthria/speech problems for cognitive In some cases, severity can equal dementia Consider carer support, Alzheimers society, MS society

Emotional effects Common Depression more common in MS But many with advanced MS not depressed Possible to have happy life even with advanced disability MS has an effect on whole family Less common Emotional lability – laughing & crying ‘drop of hat’ Explain to family – does not mean depressed necessarily Inhibition – rare but possible Lack of insight – can be seen as demanding- see below Lack of motivation/withdrawal – could be due to cognitive

changes rather than depression. Explain to family.

What can you do?

Sort practical problems Time to talk Socialise Activity Exercise Herbal anti-depressants if safe with drugs Counselling/ CBT if capable/want it Refer to GP for anti-depressants

Speech problems Dysarthria – muscle weakness, slurring Dysphonia – inability to make sounds, loss of

breath

Speech & Language Therapy Communication assistance – picture boards Microphones Use of devices – tablets, smart phones, kindle

with reading aloud function, computers with eye movement control.

Re-breathe bags/ breath stacking with respiratory physio

Eating & drinking problems Use of hands -

Swallowing problems Speech & language therapy Thickened fluids When choking regularly/losing weight Aspiration pneumonia PEG feeding

End of Life Issues MS not a ‘terminal’ diagnosis Earlier death usually due to infections Swallowing problems, PEG feeding, majority of

time lying down = vulnerable to chest infections Catheterised = vulnerable to UTIs

Most people would choose not to die in hospital

Advanced Care Planning

Advanced Care Planning – ‘ A process of discussion between an individual and their care providers irrespective of discipline’

About wishes if person deteriorates in future and cannot decide of communicate their wishes

Wishes & concerns, values & goals Should be documented, Reviewed Communicated Can include family if person wishes.

Statement of wishes & preferences

Document stating wishes, as per advanced care planning

Can be medical or non-medical Not legally binding

Advanced decision Is legally binding Is refusal of specific medical

procedures/treatments In specific circumstances Comes into play when individual has lost capacity Involve solicitor to formalise

Lasting power of Attorney Person with capacity may choose a person to act

as their attorney for if they in future should lose capacity, to take decisions on their behalf.

A ‘good death’ What makes ‘a good death’?

Symptom control – no suffering Clear decision making Preparation for death= no panic, no loss of dignity, where they want to be Value of advanced planning Contribution to others Completion Affirmation of the whole person

Web resources for MS http://www.nhs.uk/Conditions/Multiple-sclerosis/Pages/Int

roduction.aspx NHS overview

http://www.mssociety.org.uk/ clear, reliable info on MS, symptoms, etc

http://www.mstrust.org.uk/ for health professionals & people with MS

http://shift.ms/ social networking site for younger people with MS

http://www.overcomingmultiplesclerosis.org/charity re lifestyle factors

http://www.ncpc.org.uk/sites/default/files/AdvanceCarePlanning.pdf end of life guidance

http://www.nhs.uk/Planners/end-of-life-care/Pages/why-plan-ahead.aspx end of life guidance

www.mirandasmsblog.com Miranda’s blog

Thankyou & contactsMiranda Olding  RGN MSCN MCMA

www.painfreepotential.co.uk www.mirandasmsblog.com

01908 799870

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miranda@painfreepotential.co.uk