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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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