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Coping with Advanced MULTIPLE SCLEROSIS Carol Freeman MSN, RN, CNRN, MSCN 2/6/2008 Disease Courses in MS Types of MS Relapsing-Remitting Disability Relapsing-Remitting Followed by Secondary-Progressive Primary-Progressive Progressive-Relapsing Time Lublin et al. Neurology. 1996;46:907-911. Symptom Management Types of Symptoms • Primary Caused by actual demyelination within the CNS • Secondary Caused by failure to manage the primary • Contractures, UTIs, decubiti, fractures, muscle atrophy • Tertiary Psychological, social, marital, vocational, personal Fatigue • • • • • Reduce fatigue-producing medications Evaluate for medical condition Treat depression Treat asymptomatic UTIs Medications Symmetrel® (amantadine) Provigil® (modafinil) Cylert® (pemoline) Prozac® (fluoxetine) • Energy conservation counseling Types of Pain in MS • Acute Brief paroxysmal attacks Results from abnormal axon conduction- electrical discharges spread or jump to adjacent fibers, if sensory pathway may result in a painful sensation • i.e.: Trigeminal neuralgia Types of Pain in MS • Subacute Lasts for days or weeks Caused by demyelination (optic neuritis) Secondary source- painful bladder spasm associated with neurogenic bladder Types of Pain in MS • Chronic Neuropathic or dysesthetic pain occurs in approximately onethird of MS patients Related to demyelination of sensory pathways- spinothalamic tracts, posterior columns Constipation • Contributing factors include: medications, muscle weakness, decreased activity, diet and reduced fluid intake • Establish an elimination schedule, 15-30 minutes • Drink a cup of warm liquid – this may facilitate the process Bowel Incontinence and Diarrhea • Bulk formers should be taken once a day and should not be followed by any extra fluid • Medications that slow the bowel muscles, Kaopectate®, Imodium®, or Lomotil® Medications • • • • Bulk forming agents - Metamucil®, FiberCon® Stool softeners- Colace®, Surfak® Laxatives - Pericolace®, Peridum®, Milk of Magnesia® Suppositories – Glycerin, Dulcolax® Dietary Management • Drink 8-12 cups of fluid a day • High fiber diet • Regular meal times – gastrocolic reflex occurs 20-30 minutes after a meal Bladder Dysfunction • Definition of terms: frequency, urgency, hesitancy, incontinence, and nocturia • Types: flaccid, spastic and dyssynergic Flaccid Bladder – failure to empty • • • • Incidence – 19 – 40% Symptoms – frequency, urgency, hesitancy, and incontinence Little voluntary or reflex control of voiding Bladder overfills with large amounts of urine Spastic Bladder – failure to store • Most common type incidence ranging from 26-50% • Symptoms – increased frequency, urgency, and incontinence • Small amounts of urine causing spontaneous contractions Dyssynergic Bladder – conflicting or combination • • • • Incidence – 24 – 46% Symptoms – urgency followed by hesitation or incontinence Bladder wall contracts when the sphincter is closed –OR Bladder wall relaxes when sphincter is open Treatment of Bladder Dysfunction • Small, hypertonic, failure to store Pharmacologic—oxybutynin (Ditropan®), tolterodine (Detrol®) • Large, hypotonic, failure to empty Mechanical—intermittent self-catheterization, Foley catheter • Dyssynergic Alpha adrenergic agonists—dibenzyline, terazosin (Hytrin®) Intermittent self-catheterization • Nocturia Desmopressin Management of Bladder Dysfunction • Develop a drinking and voiding schedule • Caffeine, Aspartame, Alcohol, Infection, Constipation may create symptoms • Modification of home/office to improve access • Intermittent catheterization • Indwelling catheter Lifestyle Changes • • • • Sexual activity Employment Social activities Complications – skin breakdown, infections Spasticity Medication Lioresal® (baclofen); oral and intrathecal Zanaflex® (tizanidine) Klonopin® (clonazepam) Neurontin® (gabapentin) Dantrium® (dantrolene) Valium® (diazepam) Exercise and MS • Four elements in prescription - Type of exercise: aerobic, strengthening, balance, stretching - Duration - Frequency - Intensity Appropriate Exercise • Stretching and toning: maintains range of motion, combats weakness by reducing stiffness • Balancing: helpful in ambulation by increasing the amount of stimulation received by centers in the brainstem • Relaxation: helpful to reduce stress which can increase weakness and fatigue Major Concepts • Tailor an exercise program for individual – one type of program does not work for all • Choose type: moderate (rowing, bicycling, treadmill) • Do not raise core body temperature • Rigorous exercise to the point of pain can cause fatigue and weakness • Slow but steady increase in exercise should increase endurance Nutrition & MS • Important to have well-balanced diet • Over-the-counter multivitamins can be used to supplement dietary requirements • Weight loss diets • Swallowing difficulties Complementary and Alternative Therapies • Common reason for use is to improve health • Nutritional therapies include: vitamins, megavitamins, macrobiotics, dietary modifications • Information can be found through the internet- NIH and patient support agencies Points to Consider • • • • Consider possible side effects and drug interactions No regulation of content of supplements Fat soluble vitamins (DAKE) are stored in the body’s fat stores Notify healthcare providers about all supplements and vitamins Stress & MS • • • • • Assess concurrent stressors Identify support systems Use stress reduction techniques- yoga, tai chi, meditation Exercise- walking, stretching and toning Adequate sleep/rest Cognitive Dysfunction • Over 50% of MS patients • Evaluate current medications • Evaluate psychological factors: anxiety/depression • Attentional fatigue – longer to process information Levels of Care • • • • Newly diagnosed Functional with adaptations Functional with assistance from others Functionally dependent upon caregivers Assistance Available • Community Services Center for Independent Living Area Agency on Aging • Volunteer Organizations • NMSS Direct Financial Assistance