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Inside This Update
Editor's Page 2
5
6
My Experience 9
WPD 2008 - Glimpses 10
Catching Up 11
12
Outing to Khandala 14
The contents of movement aim to
provide the maximum possible facts
/information but since some
information involves areas of
pe r sona l j udgement , the i r
publication does not mean that the
PDMDS necessarily endorses them.
All contributions are welcome.
Essays should be restricted to 750
words, and letters to 200. Your
questions too are welcome.
Contributions must include your
name, address, phone no. and
occupation. All materials submitted
become the property of PDMDS.
movementThe Ed i to r (G . S . Koh l i ) ,
F l a t D -510 , M i l t on Ap t s .,
Juhu Azad Rd., Juhu Koliwada,
Santacruz (W), Mumbai- 400 049.
Phone : 65761242
Creating Awareness
Current Research in
Parkinson’s Disease
A Psycho- Educational
approach to Parkinson's
Disease
movement
movement
w w w . p a r k i n s o n s s o c i e t y i n d i a . c o m
News Journal ofParkinson's Disease and Movement Disorder Society (PDMDS)
News Journal ofParkinson's Disease and Movement Disorder Society (PDMDS)
Issue 08 | October 2008Issue 08 | October 2008
movementmovement
H o s p i t a l , M u m b a i w i t h
Dr.B.S.Singhal, founder member of
the PDMDS welcoming the gathering
and thanking the guests of honor Ms
Priya Dutt (Member of Parliament),
Ms Ritika Sahani (Singer and
Disability activist) and Dr.P.C.Shastri
( e m i n e n t p sy c h i a t r i s t ) . T h e
t ra d i t i o n a l
lighting of the
lamp and a
w a r m
w e l c o m e
s o n g b y
members of
the Borivili
S u p p o r t
G r o u p
followed with
M s . D utt signing the Global
Declaration and pledging her
allegiance to the global movement
towards improving the life of those
with Parkinson's.
Dr. S.M.Katrak evoked a sense of
hope and drive to meet each
“Yes, I may have Parkinson's but
Parkinson's will not have me!” a
message reinforced throughout
World PD Day celebrations.
11 April, globally commemorated as
Parkinson's day, is celebrated each
year by The Parkinson's Disease and
M o ve m e nt D i s o rd e r S o c i e t y
( P D M D S ) ,
with people
w i t h
Parkinson's,
t h e i r
c a r e g i v e r s
a n d t h e
m e d i c a l
fraternity. It
reflects the
d i v e r s e
group involved in Parkinson's
everyday and is an occasion for them
to come together and share their
experiences of working towards
improving quality of life.
This year, the celebrations were held
at the S.P.Jain, Auditorium, Bombay
WORLD PARKINSONS DAY 2008
Lighting the Traditional Lamp
Visit our new website from November 2008
PresidentMr. B. K. ParekhMumbai
Past PresidentDr. S. M. KatrakMumbai
Vice-PresidentsMr. Divakar V. DeoCochinDr. J. S. KathpalIndoreDr. Shilpa ChitnisU.S.A
Governing CouncilDr. Madhuri BehariDelhi
Dr. K. BhattacharyaKolkata
Dr. Rupam BorgohainHyderabad
Dr. S. M. KatrakMumbai
Dr. S. V. KhadilkarMumbai
Dr. Uday MuthaneBangalore
Dr. S. PrabhakarChandigarh
Dr. Charu SankhlaMumbai
Dr. A. B. ShahMumbai
Dr. K. K. SinhaRanchi
Dr. N. SuryaMumbai
Hon. SecretaryDr. B. S. SinghalMumbai
Hon. TreasurerDr. J. A. LalkakaMumbai
EditorsMr. G. S. KohliDr. J. A. Lalkaka
CoordinatorDr. Maria BarrettoMumbai
A Global multidirectional search is on
for a cure for Parkinson's disease or
atleast better management of its
symptoms. This includes therapeutic
options, stem cell & surgical
intervention. As mentioned earlier, I
dedicate 'Research News' to ALL in
waiting.
UNDERSTANDING STEM CELLSStem cells are non-specialized cells
with a remarkable potential for both
self-renewal and differentiation into
cell types with a specialized function,
such as muscle, blood or brain cells.
Stem cells may be sourced from fetal
or embryonic tissue or from adult
tissue reservoirs such as bone
marrow. Use of embryonic stem cells,
has become the center of significant
ethical and moral debate. In contrast,
use of adult stem cells does not face
the same moral or legal controversy.
Stem cell therapy aims to "cure"
disease by replacing the 'diseased'
cells with 'healthy' cells derived from
stem cells. This approach has the
potential to revolutionize medicine
and, if successful, the implied
opportunities are great. Currently,
Fear always springs from ignorance
From the editor's deskFrom the editor's desk
2
both embryonic
stem cells (ESC)
and adult stem
cells (ASC) are
being explored.
I would like to
express a word of
caution at this juncture. As of now,
stem cells have not been approved for
use in PD either abroad or in India.
There are many claims of stem cell
“cures” put forward by several
agencies. These are all false and PD
patients and their well wishers should
be careful. As and when stem cells
emerge, yours truly will be the first to
let you know.
PREDICTING PDIn most cases, there is no way to
predict or prevent sporadic PD.
However, researchers are looking for
a b iomarker a b iochemica l
abnormality that all patients with PD
might share that could be picked up
by screening techniques or by a
simple chemical test given to people
who do not have any parkinsonian
symptoms. This could help doctors
Contd. on next page
identify people at risk of the
disease. It also might allow them
to find treatments that will stop the
disease process in the early stages.
Positron emission tomography
(PET) scanning may lead to
important advances in our
knowledge about PD. PET scans of
the brain produce pictures of
chemical changes as they occur.
Using PET, research scientists can
study the brain's dopamine
receptors (the sites on nerve cells
that bind with dopamine) to
determine if the loss of dopamine
activity follows or precedes
degeneration of the neurons that
m a ke t h i s c h e m i c a l . T h i s
information could help scientists
better understand the disease
process and may potentially lead to
improved treatments.
In rare cases, where people have a
clearly inherited form of PD,
researchers can test for known
gene mutations as a way of
determining an individual's risk of
the disease. However, this genetic
testing can have far-reaching
implications and people should
carefully consider whether they
want to know the results of such
tests. Genetic testing is currently
available only as a part of research
studies.
POTENTIAL PD TREATMENTS
A number of potential Parkinson's
treatments in research laboratories
now show much promise. They
include:
! Neurotrophic proteins--These
appear to protect nerve cells from
the premature death that prompts
Parkinson's. One hurdle is getting
the proteins past the blood-brain
barrier.
! Neuroprotect ive agents- -
Researchers are examining
naturally occurring enzymes that
appear to deactivate "free
rad i c a l s , " c h e m i ca l s s o m e
scientists think may be linked to the
damage done to nerve cells in
Parkinson's and other neurological
disorders.
! Neural tissue transplants--
Researchers are studying ways to
implant neural tissues from fetal
pigs into the brain to restore the
degenerate area. In a clinical trial
conducted in part at Boston
University School of Medicine,
three patients out of 12 implanted
with the pig tissues showed
significant reduction in symptoms.
! Genetic engineering--Scientists
are modifying the genetic code of
i n d i v i d u a l c e l l s t o c re a t e
dopamine-producing cells from
other cells, such as those from the
skin.
P a r k i n s o n ' s D i s e a s e a n d
Movement Disorder Society
(PDMDS), a 'charity society' brings
you this Update as one of its
commitments, to bring about
awareness & information on
movement disorders, with the
objective of helping the patient, his
caregiver, the social worker and, of-
course the medical community to
collectively improve the quality of
life of those afflicted. All those
interested in knowing more or
helping promote the cause may call
me on phone 65761242, or e-mail
at : [email protected]
Remember, you're never alone.
The Life given us by nature is short, but the memory of a well spent life is eternal3
challenge of Parkinson's every step
of the way in his message and Dr.
Barretto (coordinator-PDMDS)
briefly presented the work and
services of the PDMDS. Support
group activities were particularly
appreciated while future ventures
of reaching out to people with
ad va n c ed a n d ea r l y o n s e t
Parkinson's provided yet another
ray of hope.
Ms. Dutt, remembering her father,
the late Mr. Sunil Dutt and his
gallant struggle to recover from a
stroke, spoke of faith, hope, love
and support as being the chief
factors behind his recovery. She
highlighted the inspiration she felt
by the 'hope' she experienced
amongst people with Parkinson's
and caregiver's and expressed a
desire to be associated with the
cause and participate in its
activities in whatever manner
possible.
“Stepping Up, A
g u i d e f o r
p e rs o n s w i t h
Parkinson's” an
i n f o r m a t i o n
book developed
by the PDMDS
especially for the
occas ion was
presented by Dr.
K a t r a k a n d
Ms.Dutt. A skit,
written by Ms. Ila
Mehta and essayed by people with
Parkinson's and
caregivers from
the Borivili and
South Mumbai
support groups,
began a program
that displayed a
f i n e b a l a n c e
b e t w e e n
c r e a t i n g
a w a r e n e s s ,
disseminating information and
entertainment. The underlying
message of the skit beautifully
conveyed “Yes, I may have
Parkinson's but Parkinson's will not
have me!” and reflected the
solidarity and spirit that people
with Parkinson's and their
caregivers display when coping
every day, without relenting or
letting it bog them down.
Dr. Shastri spoke about depression
in Parkinson's, a topic received
with great interest as evidenced by
the audiences' feedback and
interaction. Ms. Ritika Sahni, who
enthralled the audiences with
songs, was visibly moved and
stimulated the crowd to have faith,
to gain strength from each other
and whole-heartedly participate in
life.
D r. R a j v i
Mehta, from the Iyengar Yogashray
presented on the importance of
WORLD PARKINSONS DAY 2008 contd from page 1
Ms Priya Dutt (MP)-Signing the Global Declaration
They conquer who believe they can4
Welcoming the audience
Experience is the child of thought, and thought is the child of action.5
the application of yoga in
Parkinson's emphasizing how it
has helped innumerable people
and how it continues to
improve everyday functioning.
Dr. B. S. Singhal moderated a
question and answer session
i n v o l v i n g a p a n e l o f
Drs C. Sankla, N. Surya,
P. S h a s t r i , P. D o s h i a n d
J. Lalkaka on different aspects of PD
ranging from treatment options to
depression to eating habits. The
interaction helped the audience
understand the condition better,
The audience celebrates
while the panel gained a better
insight into the difficulties
experienced by the patient
group.These group interactions
reiterated the underlying
thread between all the days'
p r e s e n t a t i o n s a n d
p e r fo r m a n c es - t h at o f
unrelenting strength, hope,
faith and solidarity in coping with
Parkinson's and the PDMDS
continues its endeavors in this
direction.
CREATING AWARENESS ….The Mumbai Marathon
CREATING AWARENESS ….The Mumbai Marathon
Our very own..DREAM team!
On 19.01.2008, the city of Mumbai
once again experienced its Spirits
come alive! The Standard Chartered
- Mumbai Marathon saw
enormous participation of
Mumbai i tes coming from
various parts of the city. Each
one for a different reason. Some
to experience the frenzy, some
to be a part of the thrill and some
to raise funds! PDMDS like the
previous year was part of this
mega event. This year's event
was as thrilling and exciting as
last years, and the PDMDS saw a
greater participation from its
members and supporters in various
categories. Dr.B.S.Singhal, founder
member of the PDMDS along with
caregiver, Mrs.Baker and Mr.Lulla
(Supporter) participated in the
Senior Citizen walk. Mr. Pierre
D'souza our last year's Dream
Runner, ran the half marathon (21
kms) and continued in his effort to
raise funds for PDMDS. Members
and supporters from various walks
of life also raised awareness by
taking part in the Dream Run.
We would like to take this
opportunity to thank each one
of you for your support, in not
only participating in this
charitable event, but also for
your generous contribution in
raising funds through pledges
from your associates, friends
and family. The 2009 Mumbai
Marathon is scheduled for the 18th
of January and once again we will
participate and we look forward to
your continued support.
Current Research in Parkinson's DiseaseCurrent Research in Parkinson's Disease
Parkinson's disease (PD) is one of
the most baffling and complex
neurodegenerative disorders. It
has evolved from being simply a
s ing le d i sease ent i ty to a
Parkinson's syndrome with major
focus on other neurotransmitter
s y s t e m s i n v o l v e d b e s i d e s
dopamine which may account for
some of the non-motor symptoms
such as cognitive disorders, sleep
disorders and neurobehavioral
disorders like depression, anxiety
and apathy amongst others. The
cause of the disease still remains
unknown but research in this area
is very active with new and
intriguing findings being reported
constantly. Hence the focus of this
article is to review some of the
current research in the Parkinson's
arena.
Scientists are looking for the cause
of Parkinson's disease and focusing
o n s e a r c h f o r p o s s i b l e
environmental factors (toxins) that
may trigger onset of the disease,
along with genetic factors to
determine if defective genes may
play a role. In the United States
Shilpa Chitnis MD, Ph.D.Assistant Professor of Neurology
UT Southwestern Medical Center, Dallas, Texas (USA)
Shilpa Chitnis MD, Ph.D.Assistant Professor of Neurology
UT Southwestern Medical Center, Dallas, Texas (USA)
there is now an Athena Parkinson's
diagnostic panel which tests for
three genes, namely LRRK-2, Parkin
and DJ1 which are implicated in
certain forms of Parkinsonism.
Some researchers suspect that
mitochondria, the power house of
the cell may be the final common
p a t h w a y f o r o n s e t o f
neurodegeneration in PD and
hence the role of mitochondrial
abnormalities leading to oxidative
stress is being studied.
The Michael J. Fox Foundation is
funding research into development
of early biomarkers for PD. A blood
test that can differentiate patients
with very early PD from healthy
patients would revolutionize
diagnosis and treatment of the
disease. This would also have
implications for early intervention
in patients with Parkinson's disease
and for clinical trials of potential
neuroprotective therapies.
The NIH funded NET-PD initiative is
a large multi-faceted effort to find
drugs to slow the progression of
Parkinson's disease. The LS1 study
is testing creatine, a nutritional
supplement to determine if it slows
the clinical decline seen in patients
with PD. In this study, 1720
patients with early PD will receive
creatine or matching placebo (an
inact ive substance) . Each
participant will have a 50% chance
of receiving the active drug or
placebo. Creatine is a dietary
supplement that is thought to
improve exercise performance. In
animal models, it has been shown
to protect brain cells and is also
well tolerated in human studies.
Teva pharmaceuticals recently
announced the completion of
ADAGIO, the phase III study
designed to demonstrate that
Rasagiline (Azilect) 1 mg tablet can
slow down the progression of
Parkinson's disease. The data are
currently unavailable but in a
market report the company
announced that rasagiline 1 mg
tablet met all three primary
endpoints as well as secondary and
addit ional end points with
statistical significance in addition to
confirming safety and tolerability.
Happiness depends on what you can give, not what you can get6
Based on these results, Teva
intends to submit the results to
regulatory authorities in the US and
Europe and rasagiline could
become the first Parkinson's
disease treatment to receive a label
f o r d i s e a s e m o d i f i c a t i o n .
Rasagiline belongs to a class of
drugs called MAO-B inhibitors.
MAO-B in an enzyme involved in
the metabolic breakdown of
dopamine and hence extends its
effects in the body. However the
potential disease modifying effects
of this medication could be
separate from its MAO-B inhibition.
Deep brain stimulation (DBS) is one
of the most effective surgical
treatments for PD patients
suffering from Levodopa related
motor fluctuations. The relatively
low incidence of permanent
adverse effects and alteration of
the natural course of PD suggests a
highly favorable benefit to risk
ratio. Since neuroprotection is best
applied early in the course of the
disease when there are more
surviving neurons, the investigators
of this study believe that further
investigation of this procedure is
warranted. A pilot study is
underway to provide data to help
design a full scale multicenter trial
to investigate the hypothesis that
bilateral DBS in the subthalamic
nucleus is a safe and effective
treatment to slow the progression
of PD.
Spheramine is a treatment derived
from cells in the back of the eye
called human retinal pigment
epithelial cells. These cells have
the ability to produce dopamine,
the chemical substance that is lost
in the brains of patients with PD. To
create Spheramine, researchers
b o u n d r e t i n a l c e l l s o n t o
microscopic gelatin beads and
surgically implant these beads in
the putamen, a part of the brain
involved in PD. Spheramine is a
symptomatic therapy that cannot
replace the lost dopamine
producing neurons but acts as a
microscopic Levodopa producing
Nothing great was achieved without enthusiasm7
factory in the brain. Earlier the
c o m p a n y m a n u f a c t u r i n g
Spheramine had reported positive
five-year data from its phase I open
label trial, however it recently
announced that it would halt the
phase II trial in wake of results
showing that the experimental
drug had failed to meet clinical
endpoints for the study.
CERE-120 is composed of an adeno-
associated virus (AAV) vector
carrying the gene for neurturin
(NTN), a naturally occurring protein
known to repair damaged and
d y i n g d o pa m i n e - p ro d u c i n g
neurons, keeping them alive and
functioning normally It has been
shown to benefit the dopamine
neurons that degenerate in
Parkinson's disease and are
responsible for the major motor
impairments . CERE-120 is
delivered by stereotactic injection
to the affected area of the brain,
providing long-lasting expression of
NTN in a highly targeted fashion. A
phase II trial of CERE-120 is
currently underway
New and promising drug therapies
continue to be studied for
symptomatic control of Parkinson's
disease. Recently US FDA
Keep your fears to yourself but share your courage8
announced the approval of Requip
XL (ropinirole extended release
tablets) for the treatment of signs
and symptoms of Parkinson's
disease. Requip XL is the first and
only oral once per day dopamine
agonist indicated for Parkinson's
disease. Patients with PD may
experience what is commonly
known as “off” time when their
medication wears off and their
symptoms return. Results from a
pivotal study showed that adding
Requip XL to patient's existing
Levodopa therapy reduced the
amount of “off” time experienced
by patients with PD by 2.1 hours per
day compared to baseline.
US FDA recently approved a higher
strength of the medication Stalevo.
In addition to Carbidopa and
Levodopa (the active ingredients in
Sinemet), Stalevo contains an
ingredient called entacapone
(comtan) which enhances the
benefits of Levodopa and help with
wearing off symptoms. Currently
available formulations of Stalevo
contain 50, 100, 15 and now 200 mg
of Levodopa in addit ion to
C a r b i d o p a a n d 2 0 0 m g o f
entacapone.
Neupro is a transdermal delivery
system that provides Rotigotine, a
dopamine agonist continuously
over a 24 hour period. It was
approved in 2007 for treatment of
early Parkinson's disease. In April
2008, Neupro was withdrawn from
the US market due to formation of
crystals in the patches which could
potentially affect the ability of the
patch to deliver medication to the
skin. These are still available in
Europe with the recommendation
of refrigerating the patches in order
to prevent crystal formation.
A pilot study of ND0601, the first
transdermal patch for continuous
del ivery for Levodopa was
announced in 2007. This drug is
primarily used in oral form at this
time. PD patients often suffer from
wearing “off” and involuntary
movements (dyskinesia) that result
from fluctuations in Levodopa
blood concentrations inherent
with oral administration of this
medication. ND0601 is based on a
proprietary formulation containing
Levodopa ester as a prodrug that
enables the continuous delivery of
Levodopa through the skin,
thereby overcoming the limitations
of its short half life.
Trancranial magnetic stimulation
(TMS) is being studied for its
potential to reduce the symptoms
of PD. In TMS an insulated coil of
wire on the scalp is used to
generate a transient electrical
current which in turn produces a
magnetic field. This method
indicates some promise in partially
alleviating some of the symptoms
of PD, although it is not able to
change the course of progression of
the disease.
The use of stem cells to regenerate
damaged neural tissues in an area
o f i n t e n s e i n t e r e s t a n d
experimental studies have been
conducted with varying degrees of
success , depending on the
particular type of stem cells that
were employed. This needs to be
extensively studied before it can
translate into meaningful therapy
for patients with Parkinson's
disease. Parkinson's research has
made leaps and bounds in our
understanding of the disease. The
findings have helped patients
across the world manage the
disease. Although no cure has been
yet found, Parkinson's disease
research continues to make
headway.
Making a debut
Charms strike the sight but merit wins the soul9
Discovering New Skills
On 14th April world Parkinson day
was celebrated at Bombay Hospital.
Most of the Parkinson's Patients as
well as care givers, doctors,
physiotherapist and many other
medical faculty
m e m b e r s
attended the
function.
The chief guest
being Ms.Priya
Dutt (MP), it
w a s a
c h a l l e n g i n g
programme.
Members from
the Bor iva l i
and South Mumbai support group
performed a skit, which was an eye
opener for many people, especially
to those who were unaware of
Park inson's d isease and i ts
manifestations.
The skit was informative for both
patients and caregivers. It threw
light upon the various factors related
t o P a r k i n s o n ' s ; i t b e i n g a
degenerative cell disease leading to
overall slowness in activity. It proved
useful in providing knowledge on
how one could take care and control
the disease by taking the prescribed
drugs on time.
The skit bought forth the idea of
how one can put MIND over
M AT T E R , b y
being positive,
keeping active and occupied;
making the patient and the
caregiver feel good and happy. The
entire concept of the play was very
enlightening. I was more than eager
to be a part of this play. In addition
to introducing me to my acting skills,
the rehearsals lead to frequent
interactions with other members
from the Borivali Support group.
This gave us an opportunity to make
new friends and share information.
It was indeed a nice experience
being a part of it. I do hope through
this play we have been effective in
passing on the right message.
Mrs Baker,South Mumbai Support Group
Fighting Fit
Ihad an opportunity to be associated
as a participant in a short term yoga
course organized by the Parkinson's
Disease and Movement Disorder
Society, Mumbai. It was a very well
conducted course. It helped me to
keep my body in a fit condition.
Besides a short term lecture course
was arranged by the Society. It was
an excellent course. The lecturer
Miss. Jyoti seemed to have taken a
lot of responsibility. She was just
superb. The information gained
through the two courses helped me
a lot. These two courses added cheer
to everybody's life. We look forward
to participating in many such
activities.
Dr. Mandke VikasHinduja Hospital Support Group
My ExperienceMy Experience
Master your patience & you will be master of everything10
Reflections
I am proud to be associated with the
B o r i v a l i S u p p o r t G r o u p . I
a c c o m p a n i e d m y m o t h e r
Mrs.Anjana Shah for the support
group few months back with a lot of
doubts, queries, fears etc. But today
attending the meetings, gathering
information and making new friends
with similar issues has certainly
helped not only me, but also my
mother in dealing with our queries
effectively. Meeting other members
who have overcome s imi lar
questions faced by her has
motivated her to bui ld her
confidence. The support groups
have provided us with a lot of useful
information which has certainly
given us alternative methods in
overcoming our difficulties. Today
the various activities organized by
PDMDS have created a bonding
amongst all of us, emerging as a
strong family. In addition to help us
deal with various problems the
bonding of Borivali group mates has
played a great role in introducing us
to unnoticed talents.
This year PDMDS had planned a skit
to be performed for the WPD 2008.
At first when I was asked if I would
p l a y a r o l e I w a s a l i t t l e
apprehensive, but as I saw the
enthusiasm of the rest of the
members to be a part of it, I was
more than keen to be a part of it.
Since none of us have had an
experience of acting, it was an
elaborate task coordinating with
each other and getting all the
dialogues right. It was more of a
joint affair with members who were
not a part of the play helping us,
giving cues so that we could get the
dialogues right. It was amazing how
if someone forgot or got confused
with his/her dialogues, someone
else would take over by making up
dialogues just to help remind that
person of his forgotten lines. The
practice sessions were entertaining
as we would have these bouts of
laughter when someone would say
something incorrect. The play
content was an eye opener for the
audience with a strong message of
“Mind over Matter”. I am glad I got
an opportunity to be a part of this
play, in playing a pivotal role in
passing relevant information about
Parkinson's Disease and i ts
misconceptions.
As a group we always have some
new activity which we try and
implement. For example recently
we have decided to celebrate
birthday of members, falling in that
respective month of the meeting,
which I can assure on behalf of the
group has been appreciated
tremendously.
Activities like this and the two day
picnic organized by the group has
helped each one of us to gain a lot of
confidence and a hope to deal with
the loneliness. I would like to take
this opportunity as a caregiver and
on behalf of the rest of the members
of the Borivali Support Group, to
thank PDMDS, for making this group
blossom into a wonderful family,
helping us in coming forth with ways
of overcoming our limitations with a
collaborative effort.
Ms. Kavita Shah Borivali Support Group
Mom & I
Knowledge of what is possible is the beginning of happiness
CATCHING UPSUPPORT GROUP MEETINGS
CATCHING UPSUPPORT GROUP MEETINGS
11
Saifee HospitalOn 22nd November 2007, a
support group meeting was
organized at Saifee Hospital,
Mumbai. Dr. J immy Lalkaka
addressed the meeting. Dr. Lalkaka
and Dr. Nirmal Surya spoke on PD
and answered few queries asked by
the participants. Dr, Maria Barretto
discussed the activities carried out
by PDMDS. Ms. Jyoti Ghanshani,
Clinical Psychologist spoke on
cognitive functions influenced by
P D . S h e d i s c u s s e d i s s u e s
concerning memory and provided
alternate strategies to cope with
them. Dr. Rangwalla and his team of
physiotherapist from Saifee
h o s p i t a l p r e s e n t e d a n d
demonstrated a few exercises. This
w a s fo l l o wed b y a n o p e n
discussion.
Nanavati HospitalA support group meeting was
organized at Nanavati Hospital,
Mumbai on 9th February 2008. The
event was addressed by Dr. Mehta
(Neurologist). Dr. Maria Barretto,
gave a brief on the activities and
various programs conducted by
PDMDS. Dr. P. C. Shastri one of the
leading psychiatrist and professor,
gave a small presentation on
depression and sleep disorders
related to PD. He also had a open
discussion to answer various
questions raised by the audience.
Dr. Priya Satpute, Physiotherapist,
Nanavati Hospital, presented and
discussed physiotherapy for PD
patients. She also demonstrated
some exercises which the patients
can practice at home.
Hinduja HospitalOn 26th February 2008, a support
group meeting was organized at
H induja Hosp i ta l , Mumbai .
Dr.Maria Barretto updated the
group on the various activities
organized by the society. This was
followed by a presentation that
highlighted the importance of
belonging to a Support Group. Dr.
Rajvi Mehta, presented and
discussed the recent study on Yoga
and its significant influence on
Parkinson's. Ms. Jyoti Ghanshani
(Psychologist) discussed the role of
cognition in PD and conducted a
cognitive activity related to
memory skills. This was followed by
a presentation on physiotherapy by
Dr.Harris (Physiotherapist-Hinduja
Hospital). The meeting ended with
a question and answer session with
Dr. Charu Sankhla.
SUPPORT GROUP MEETINGS
……….Do join us, Good news, for
people residing in the suburbs!
A new support group has started in
Santacruz at Wi Wurry, Linking
Road, behind Standard Chartered
Bank, Santacruz (W). (1st Saturday
every month, 4pm)
Regular support group meetings
are being conducted at these
centers in Mumbai.
Borivali- Abhigyan Industrial Estate,
S.V road, Borivali (W). Landmark:
Lane adjoining Vijay Sales. (1st Sat.
of every month, 10am)
South Mumbai- Jasvile, 1st Floor,
New Marine lines, Mumbai-12.
Landmark: Opp. Liberty Cinema,
above Kamats. ( 4th Sat. of every
month)
Participants who are interested in
information about support groups
in your area and attending the
meeting please contact : Ms.
A Psycho- Educational approach to Parkinson's DiseaseJyoti Ghanshani
Clinical Psychologist
A Psycho- Educational approach to Parkinson's DiseaseJyoti Ghanshani
Clinical Psychologist
Energy and persistence conquer all things12
Shibani on 996 777 4944 / 91-22-
22068787 / 22064747 or you can
also write to us at : Parkinson's
Disease and Movement Disorder
Society, Dr. B. S. Singhal, Room
131,Bombay Hospital, 12 Marine
Lines, Mumbai-400020 or Email us
YOGAA Yoga program was conducted at
the Iyengar Institute (Lower Parel)
from the 7th- 18th January & 15th-
26th September, 2008. The
duration of the program was 10
days with an hour and a half session
per day. Those interested in
participating in these programs
should contact the Iyengar institute
and register their names. This will
enable them to contact you when
the next program is organized.
Address - Iyengar Yogashraya, 126
Senapati Bapat Marg, (opp Kamla
and Empire Mills) Lower Parel,
Mumbai 400 013.
Tel Rohini - 24948416. (10.00 a.m.
to 4.00 p.m)
PDMDS introduced the 'Quality of
Life Enhancement' program in
September 2007. taking the
psycho-educational approach, the
program was aimed at increasing
the patients knowledge and
understanding of the many facets
of Parkinson's disease, and also
i n c r e a s i n g t h e i r r o l e a n d
involvement in their care. This, we
believed, would impact their
Quality of life (QoL); allowing them
greater avenues for participation in
everyday activities, improved
familial & social relationships and
more pleasurable interactions.
The execution of the program
commenced in October and
concluded in February. The
program comprised of 8 sessions,
conducted once every 15 days.
Each session was topical; focusing
on specific areas of concern in Pd
such as the motor difficulties, the
non-motor difficulties, speech
difficulties etc. Moreover, each
session was carefully structured. It
i n c o r p o r a t e d i n f o r m a t i o n
dissemination as well as learning its
practical implications through
Perseverance is failing nineteen times and succeeding the twentieth13
of some of my own strengths. I
have to say that I am very thankful
for having worked with such a
responsive group. While at the
outset, the natural leaders in each
group took the initiative we were
soon able to create an environment
of mutual respect and comfortable
exchange. Gradually even the more
reluctant members of the group
were seen to become involved.
As I weaved myself a place in the
group, I was able to gain a position
of accessibility and reassurance. A
position that I quite cherish.
Currently, we are in the process of
formalizing our analyses of what
we have learnt from the program.
We then hope to refine the
material and chalk out i ts
specifications to develop a re-
creatable model that maybe
applied in our other chapters.
activities. The sessions were
conducted for groups ranging from
8 to about 20 participants with 2
moderators. Consequently, the
dynamics within each group were
vital in the execution of the
program. Localized in different
areas around Mumbai, the program
had a total of 28 participants. We
also studied the impact of the
program on QoL through measures
Session 1 -
Introduction PD
Session 2 -
Motor Symptoms in PD
Session 3 -
Non Motor Symptoms in PD
Session 4 -
Speech Difficulties in PD
Session 5 -
Dietary considerations for patients of PD
Session 6 -
Cognitive Difficulties experienced in PD
Session 7 -
Mood Difficulties i.e Deppression and Anxiety in PD
Session 8 -
The importance of support and the role of Caregiver.
In developing the program we
drew greatly from the Cognitive
Behavioral Therapy (CBT).
CBT is a school of thought in
Psychotherapy that emphasizes
the relationship between thought
and behavior; 'As we think so we
do' Therefore, the way to creating
lasting change is two-pronged,
such that it addresses thoughts as
well as behavior or actions.
Accordingly then we focused not
only on educating the group
through providing information but
also emphasized the activity in
each session. Moreover every
session had a 'take-home' activity.
In addition to creating a pseudo-
classroom feel in the program, the
'homework' also worked towards
intensifying the grasp of the
information and its impact.
When speaking of my experience, I
must say that I enjoyed my role as
the developer as much as my role
as the facilitator. The process of
developing the program was
exciting for all the learning it
allowed me. While in the process of
facilitation I grew in my realization
Borivali. While, Dr. Pankaj joined us
on en route. The journey to the
destination was completely fun-
filled, with all of us singing songs,
playing games, enjoying
the snacks etc. barely
able to contain the
e x c i t e m e n t a n d
anticipation, a few of our
friends who couldn't
leave with us, drove
down and joined us later
at Khandala.
H a v i n g r e a c h e d
Khandala, freshened up
and recharged with gusto we
headed for the first thing on our
agenda- some Delicious LUNCH!!
Later in the day, we visited the Tiger
point, where we all enjoyed the cool
breeze and helped ourselves to fresh
'buttas'. Here, in the picturesque
outdoors Mr.D'l ima and Mr.
Issardas, members of the
support group, taught us
s o m e e x e r c i s e s o f
laughter therapy. This
was followed by an
interesting discussion
and Qn'A with Dr.Pankaj,
where we exchanged
We are FAMILY!
Our greatest glory is not in never falling, but in rising every time we fall14
OUTING TO KHANDALAOUTING TO KHANDALA
On 29th March 2008, the Borivali
Support Group organized a two day
picnic to Khandala. The excitement
of the outing was very obvious, with
a l l o f u s
preparing for it days in advance,
meeting regularly to plan the
itinerary to every possible detail.
Mr.Mundra a caregiver from the
group played a leading role in
coordinating the arrangements and
making this trip successful. With his
help we were able to organize the
stay and the conveyance for the
entire trip.
Armed with a variety of mouth
watering snacks, games and brilliant
and innovative ways to spend our
time, we all piled into the bus for
Khandala early in the morning from
information on PD and he answered
our many queries and doubts about
the same.
While at the bungalow we spent our
time enjoying a game of cards,
singing or just chatting about just
about everything and nothing at all
in particular. Some of us also got
together and practiced the song we
performed on the World Parkinson's
Day celebration.
Adding some spice to our leisure was
Mrs.Gajam, a caregiver from the
group, who whipped up some
mouth-watering Poha. That snack
and some piping hot tea- now thats
what we call 'a Day Replete'!
Time flew that day and it had already
rolled into next morning, where
M s . S u n i t a N a i k , a f r i e n d
accompanying us on this trip, taught
us some Yoga exercises. Refreshed
Early Morning Start !!
Contributed by Borivali Support GroupContributed by Borivali Support Group
In the confrontation between the stream and the rock, the stream always wins - not through strength, but through persistence15
Laughter... the BEST medicine
and inspired from this great early
morning start, we eagerly
packed in some sight-seeing,
this being our last day there.
We visited the Kaveri temple
and also went for a boat ride.
Here we all gave in to the
te m p t i n g co l o u rs a n d
flavours and decided to have
'ice golas'.
N a t u r a l l y w e u n a n i m o u s l y
proclaimed it was the perfect way to
beat the heat. Soon after however,
we headed off for our return
journey.
On the whole, it was a great
experience for the group to go out
together. So far we've been meeting
just during the support group
meetings, but this outing has
brought us closer as One Big Family!
With great hope to organize another
one soon, we invite members from
the other support groups to join us
as well…hope to see u then!
A different journey awaits each one, but our destination is the
same.
As the PDMDS moves further forward in this journey, our
destination has been to reach out to you. For some of us the
journey is through bringing you information, for others it is
through answering your doubts, for still others it has been
through bringing each of you closer to each other.
Similarly, your destination has been to deal with the disease,
but the journey through it has been different for each of you.
We at PDMDS are extremely keen on knowing what your
experiences have been. In a similar vein we would also like to
know what you have taken from – your comments
and criticisms; what you would like to see in –
your suggestions and questions. So please write to us.
Besides , localized support groups, seminars,
national and international representation have helped
PDMDS move closer towards its goal to “Make the PD World
Smaller.” To make it still smaller we invite non-member
patients to become a part of our society. Moreover, none of
our existing patient-members should have to miss out on
being a part of the activities or receiving an update of
movement because of a change in residence. Therefore keep
us informed of any change in address or telephone numbers.We further invite any organizations or support groups
associated with PD & movement disorders, anywhere in the
world, to get yourselves enrolled in our mailing list, and we
request enrollment into your mailing list.
PDMDS’ consistent goal, being a ‘Charity Society’, has been to
make the healthcare system accessible, to spread awareness
of tried but dormant ways, and discover new ways of making a
difference in the lives of patients and caregivers. It goes
without saying that funding is required for these purposes,
and therefore we request those well-wishers interested in
making donations to our efforts and cause, to contact us.
If you wish to correspond with us for any of the above, or
require any information regarding the same, the contact
details are given as follows:
Address all correspondence to:THE PARKINSON’S DISEASE & MOVEMENT DISORDER
SOCIETY,Dr. B. S. SinghalBombay Hospital,12 Marine Lines, Mumbai 400 020Tel: (91 22) 2206 8787, 2206 4747E-mail: [email protected] / [email protected]
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movementmovement Issue 08 | October 2007Issue 08 | October 2007
