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Public Policy in ALS/MND Care: An International Perspective Robert H. Blank full chapter instant download
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Public Policy
in ALS/MND Care
An International Perspective
Edited by
Robert H. Blank · Jerome E. Kurent · David Oliver
Public Policy in ALS/MND Care
Robert H. Blank
Jerome E. Kurent • David Oliver
Editors
Public Policy in
ALS/MND Care
An International Perspective
Editors
Robert H. Blank Jerome E. Kurent
University of Canterbury, Medical University of South Carolina
Christchurch, New Zealand Charleston, SC, USA
David Oliver
University of Kent
Canterbury, UK
© The Editor(s) (if applicable) and The Author(s), under exclusive licence to Springer
Nature Singapore Pte Ltd. 2021
This work is subject to copyright. All rights are solely and exclusively licensed by the
Publisher, whether the whole or part of the material is concerned, specifically the rights of
translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on
microfilms or in any other physical way, and transmission or information storage and retrieval,
electronic adaptation, computer software, or by similar or dissimilar methodology now
known or hereafter developed.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this
publication does not imply, even in the absence of a specific statement, that such names are
exempt from the relevant protective laws and regulations and therefore free for general use.
The publisher, the authors and the editors are safe to assume that the advice and information
in this book are believed to be true and accurate at the date of publication. Neither the
publisher nor the authors or the editors give a warranty, expressed or implied, with respect to
the material contained herein or for any errors or omissions that may have been made. The
publisher remains neutral with regard to jurisdictional claims in published maps and
institutional affiliations.
This Palgrave Macmillan imprint is published by the registered company Springer Nature
Singapore Pte Ltd.
The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore
189721, Singapore
Foreword
v
vi FOREWORD
References
Mitsumoto, H., M. Bromberg, W. Johnston, R. Tandan et al. (2005). Promoting
excellence in end-of-life care in ALS. Amyotrophic Lateral Sclerosis and
Frontotemporal Degeneration 6 (3): 145–54.
Sherman, A.V., A.K. Gubitz, A. Al-Chalabi, R. Bedlack et al. (2013). Infrastructure
resources for clinical research in amyotrophic lateral sclerosis. Amyotrophic
Lateral Sclerosis and Frontotemporal Degeneration 14 (Suppl 1): 53–61.
Chad, D.A., S. Bidichandani, L. Bruijn, J.D. Capra et al. (2013). Funding agencies
and disease organizations: Resources and recommendations to facilitate ALS
clinical research. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
14 (Suppl 1): 62–66.
Preface
ix
x PREFACE
xi
xii CONTENTS
xv
xvi NOTES ON CONTRIBUTORS
decisions for care and quality of life. Her teaching work is in convening
and delivering healthcare safety and quality and research units for the
Master of Health Service Management, and supervision of PhD students.
Wendy S. Johnston is Professor Medicine in the Division of Neurology
at the Faculty of Medicine and Dentistry at the University of Alberta,
Edmonton, Canada. As Medical Director of the University of Alberta
Amyotrophic Lateral Sclerosis Programme she leads a multidisciplinary
team dedicated to the care of patients with ALS and other motor neuron
diseases. Her research encompasses both qualitative research in ALS as
well as an active investigational drug trial programme. She serves on the
Board of ALS Canada and is past-Chair of the Canadian ALS Clinical
Research network.
Imen Kacem is the director of the ALS center in Department of
Neurology at Razi University Hospital. She is member in the ALS research
project and related syndromes in tropical zone (TROPALS). She won the
International Scholarship Award of the American Academy of
Neurology in 2017. She authored and co-authored many papers and
book chapters about ALS and CMT, such as Epidemiology of ALS and
Clinical Features of ALS in Africa.
Aqdas Kazi MBBS, MRCP, CCST (Palliative Medicine), is a consultant
in Palliative Medicine at Shifa International Hospital, Islamabad. After
MRCP and completion of four years of Specialized Registrar train-
ing, she received the Certificate of Completion of Specialized Training
in Palliative Medicine from the Royal College of the Physicians of the
UK. After working at Singapore General Hospital with the hospital
based palliative care team, she established the Palliative Care Unit at
Shifa and is the lead for Home Based Palliative care. She teaches
medical staff and has been an active advocate for Palliative Care at the
national level.
Satish Khadilkar is one of the first few Indian neurologists to pursue the
subspecialty of neuromuscular disorders, nationally and internationally.
He has been involved with a new clinical sign, sarcoglycanopathies and
dysferlinopathies and the gene in calpainopahties. He has over 130 publi-
cations to his credit and has written six and edited one book on neurology.
He has been trustee and secretary of the Muscular Dystrophy Society and
National Vice President of Multiple Sclerosis Society of India. He was the
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"The thought of it made Mother so happy!" said Robin,
with animation. "Perhaps our going makes her all the
happier now, for Mother may be watching us still. I do not
like to think how much trouble I gave her, little
unmanageable cub that I was!"
"Oh! You need not fire up, Master Robin; you were not
always so very fond. I've heard that one day when you
found the idiot praying to a plaster-of-Paris figure, you
kicked him as you would have kicked a dog."
"I see that Robin has lost none of his pepper and
mustard," observed Miss Petty in a testy manner; "he never
knew how to treat a lady."
CHAPTER II.
CONTRASTS.
"I shall try to sit next to her at table," said Robin; "one
could fancy Mary of Nazareth like our fellow-passenger,
allowing for the difference of costume, and the veil over the
dark braided hair, and the simple drapery of her dress,
makes even that difference less striking. The lady looks like
one chastened by deep sorrow—sorrow borne in calm faith;
one who has trod a thorny path, but with heaven's
brightness upon it."
CHAPTER III.
BALKING THE BEAR.
"A soldier must have his weapons and the workman his
tools," observed Harold.
"Well, my boy, you said just now that you did not mean
to give the voyage to idleness; what are you going to learn?
You have already caught up a good deal of nautical
knowledge during visits to the coast, but may not be quite
qualified to manage a steamer."
"I did not mean that sort of thing," replied Robin. "I am
not going to apprentice myself to Captain Gump. I intend to
do something in the way of learning by heart. I might
commit to memory the First Epistle of St. John."
"But I think—"
"'Thou shalt not take the name of the Lord thy God in
vain,'" said Harold, sternly.
"Did you ever hear the story of the 'cute captain who
made his Jack-tars obey him without so much us a touch of the
cat?"
cried Robin.
Gump looked as if he were going to spring at the man
who had dared to rebuke him on his own deck, and in the
presence of others, for the swearer's loud voice had drawn
some listeners to the spot. Robin saw the storm brewing,
and with his quick wit managed to act as a lightning-
conductor ere the fierce captain's fury had time to burst.
"Did you ever hear the story of the 'cute captain who
over-reached his Jack-tars, and made them obey his will
without so much as a touch of the cat?" cried Robin.
"The captain was new to the ship, and the crew were a
rough lot, a very rough lot, you see. So the captain got
them together, and made a kind of short speech; perhaps
you did so to your salts, though not such a very odd speech
as was made by that very eccentric captain."
"Jack of all trades, yes, that's what folk call me; and
here is one of my tricks!" And with the agility of a cat, the
youth sprang at one of the ropes of the ship, clambered up,
and was looking laughingly down from the shrouds before
Gump had sufficiently recovered from his surprise at the
sudden feat to be able to utter a word.
CHAPTER IV.
A BATTLE, AND ITS RESULT.