Disclosures. This speaker has indicated there are no relevant financial relationships to be disclosed.

Transcription

1 Disclosures This speaker has indicated there are no relevant financial relationships to be disclosed.

2 Parkinson s Disease, Huntington s Disease and ALS: A brief overview of three diagnoses Leo G. Rafail, BSW Community Liaison, Harbor Light Hospice President, Thomas Cellini Huntington s Foundation Board Trustee, Rock Steady Boxing Former Care Services Program Manager, The ALS Association Indiana Thomas Cellini Huntington s Foundation

3 What does a neurological disease look like?

4 Common aspects of PD, HD, ALS Degenerative Neurological conditions Progression comes in spurts Misdiagnoses Fatigue Symptoms vary from person to person Each day can be different for each person Impaired judgment and decision making Hard to put your finger on symptoms Marital / relationship stress Changes in social relationships Not a part of life s plan

5 Parkinson s 60 Years Old Years Slower in younger patients Clinical Diagnosis Firefighters Teachers Lawyers Scientists Metal Workers Vietnam Vets About 1:1,000 Huntington s 38 Years Old Years Faster in Juvenile Onset Genetic Test Clinical Diagnosis Men & Women Have a parent who has the gene About 1:10,000 ALS 58 Years Old A few months-many years Mean is 2-5 years Clinical Diagnosis 1:800 Men 1:1,200 Women Military veteran twice as likely About 1:10,000** ** just a snapshot

6 Parkinson s Disease

7 What people see as Parkinson disease

8 PD has a long, variable course -20 Years -10 Years +10 Years +20 Years

9 Huntington s Disease

10 Unaffected Person with HD Huntington s Disease: What is it? Inherited -Autosomal dominant inheritance Progressive Results in the emotional problems, loss of physical control and some mental capability In the early stages, some intellectual, motor, and emotional impairments Not fatal; The effects can have fatal consequences The person remains in there throughout Caudate Putamen

11 Huntington s Disease Cognitive or Thinking Disorder Mood or Emotional Disorder Movement Disorder Behavior Disorder

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13 ALS Amyotrophic Lateral Sclerosis Lou Gehrig s Disease

14 Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease" Jean-Martin Charcot 1 st described ALS in France in 1869 Lou Gehrig A-myo-trophic comes from the Greek language "A" = no or negative "Myo" refers to muscle "Trophic" = nourishment "No muscle nourishment "Lateral" identifies the areas in the spinal cord where portions of the nerve cells that signal and control the muscles are located As motor neurons degenerate, scarring or hardening ("sclerosis ) occurs

15 ALS: Early Symptoms: Muscle weakness: -hands, arms, legs or the muscles of speech, swallowing or breathing Twitching (fasciculation) and cramping, especially those in the hands and feet Decreased use of the arms and legs Thick (or slurred) speech" and difficulty in projecting the voice Leg stiffness Shortness of breath (rare) Unexplained weight loss Two presentations Limb Onset 85-90% Generally starts in the arms, hands or legs and feet. Often fingers don t work properly or they experience foot drop. Bulbar Onset 5-10% This happens in the swallowing, speaking area of the body. Often, but not always this is a faster version of ALS. Most patients regardless of their onset will end up paralyzed, unable to speak, to swallow and eventually to breathe without assistance

16 Progression of ALS More advanced stages, shortness of breath (dyspnea) Difficulty in swallowing (dyspahgia) Loss of speech (anarthria) Paralysis of all four limbs

17 Parkinson s Very few have feeding tube Laser Cane Rolling walkers U-Step walker Power Scooters Exercise for strength The more rigorous, the better (if safe) Improves balance, mood About half of patients eventually move to nursing home Medications can be very effective in treatment of symptoms Deep brain stimulation surgery can be effective Huntington s Almost none opt for feeding tube Assistive technology often not appropriate Broda, Carefoam, Bentley Chairs Almost all patients move to nursing home Medications to treat mood problems can be very effective No good treatment for balance issues No good treatment for cognitive issues ALS Augmentative Communication Devices Feeding tube is common Bi-pap / Vent Cough Assist Machines Assistive technology Rolling Walkers Manual Wheelchairs Power Wheelchair Specialty Power Chairs Physical Therapy for range of motion Most patients will not move to nursing home

18 Health Management Team Symptom Management & Quality of Life Physical Therapist, Occupational Therapist Respiratory Therapist Neurologist Nurse Dietician, Nutritionist PWP PHD PALS Social Worker Speech-language Pathologist Assistive Technology Pastoral Care Disease-specific Agency Orthotist Family and Friends as Caregivers Hospice NeuroPsychologist

19 Critical Periods for Patient and Family Stress Learning gene status (Huntington s Disease) Receiving a diagnosis Early signs of disability Need for occupational changes Losing ability to drive safely Feeding tube, breathing assistance (ALS) Emergence of severe health problems Considering home health When out-of-home placement is being considered Considering palliative care and hospice

20 CARE GIVER PRAYER As I stumble through this life, help me to create more laughter than tears, dispense more happiness than gloom, spread more cheer than despair. Never let me become so indifferent that I will fail to see the wonder in the eyes of a child or the twinkle in the eyes of the aged. Never let me forget that my total effort is to cheer people, make them happy and forget at least for a moment all unpleasant things in their lives. And, in my final moment, may I hear you whisper: When you made My people smile, you made Me smile.

21 Thank you for your interest in learning more about these diagnoses. Leo G. Rafail, BSW (317)