the parkinson’s disease & movement disorder society
TRANSCRIPT
Inside This Update
Facts About
Stem Cell Therapies 1
Editorial 3
One Day Symposium on
Parkinson’s Disease 4
Support Group Initiatives 5
Marathon 2011 7
Advocacy Helping
Yourself and Others 8
My Experiences on the
Wheelchair at the Airport 9
Jhalak of LADAKH 15
Art Therapy 17
My experience as a
caretaker & as a patient 18
Support Groups
in Mumbai 19
The contents of movement aim to
provide the maximum possible
facts /information but since some
information involves areas of
personal judgement, their
publication does not mean that
the PDMDS necessarily endorses
them.
All contributions are welcome.
movementThe Editor (G. S. Kohli),
Flat D-510, Mi lton Apts.,
Juhu Azad Rd., Juhu Koliwada,
Santacruz (W), Mumbai- 400 049.
Phone : 65761242
movement
movement
News Journal ofParkinson's Disease and Movement Disorder Society (PDMDS)
News Journal ofParkinson's Disease and Movement Disorder Society (PDMDS)
Issue 12 | March 2011Issue 12 | March 2011
movementmovement
excluding travel & accommodations
for patients and caregivers. Stem cell
clinics are becoming a lucrative part
of medical tourism. These clinics offer
to treat a wide range of medical
conditions including Alzheimer
disease, Parkinson disease, spinal
cord injury, blindness and heart
disease. The web sites often down
play the experimental nature of the
treatments and make little mention
of side effects. This type of
overhyped marketing directly to the
patients puts them at risk of financial
exploitation and physical danger
from insufficiently studied and risky
therapies. The purpose of this article
is to educate regarding various types
of stem cells, review facts about stem
cell therapies and understand how
medical safe guards have evolved
over time to protect individuals from
potentially harmful therapies.
WHAT ARE STEM CELLS AND WHAT
IS THEIR IMPORTANCE
Stem cells carry remarkable potential
to develop into many different cell
On March 9, 2009, President Barack
Obama issued an executive order
entitled, “removing barriers to
responsible scientific research
involving human stem cells”. This
states that the secretary of Health
and Human Services, through the
director of NIH, may conduct and
support responsible, scientifically
worthy human stem cell research,
including human embryonic stem cell
research to the extent permitted by
law. Clinics around the world are
of fer ing unproven stem ce l l
treatments to desperate patients
suffering from incurable diseases
such as Parkinson disease, multiple
sclerosis (MS) and ALS (Lou Gehrig’s
disease). A study published in the
journal Cell Stem Cell examined the
direct-to-consumer advertising that
these shady clinics use to attract
customers. They looked at 19 web
sites that advertised stem cell
treatments in several countries
including Mexico, China and Russia
and found that the average cost of a
course of therapy was about $ 21,500
Facts About Stem Cell TherapiesFacts About Stem Cell TherapiesDr. Shilpa ChitnisDr. Shilpa Chitnis
Address all correspondence to:THE PARKINSON’S DISEASE & MOVEMENT DISORDER SOCIETY
Dr. B. S. Singhal, Bombay Hospital, 12 Marine Lines, Mumbai 400 020Tel: (91 22) 2206 8787, 2206 4747 | E-mail: [email protected] | Website : www.parkinsonssocietyindia.com
Published by Neurology Foundation
OFFICE BEARERSPresidentMr.B.K.ParekhMumbai
Past PresidentDr.S.M.KatrakMumbai
Vice-PresidentsDr. J.S.KathpalIndoreDr. Shilpa ChitnisU.S.A
Governing CouncilDr. Madhuri BehariDelhiDr. K.BhattacharyaKolkataDr. Rupam BorgohainHyderabadDr. S. M. KatrakMumbaiDr. S.V. KhadilkarMumbaiDr. Uday MuthaneBangaloreDr. S. PrabhakarChandigarhDr. Charu SankhlaMumbaiDr. A. B. ShahMumbaiDr. N. SuryaMumbaiDr. P. WadiaMumbaiDr. P. PalBangaloreMs. K. VaniaMumbai
Hon. SecretaryDr. B. S. SinghalMumbai
Hon. TreasurerDr. J. A. LalkakaMumbai
EditorsMr. G. S. KohliDr. J. A. Lalkaka
CEODr. Maria BarettoMumbai
It is assuring to note that support groups
are being established at a rapid pace in the
suburbs – the latest ones at Chembur and
Vashi. It is even more assuring that
helpless patients are being spotted by the
Society (PDMDS) and rehabilitated, as
published in the Mumbai Mirror dated 5th
February, 2011. The care-givers, the
patients as also the individuals connected
with PD and its cause had an opportunity
to enhance/update their information at a
symposium organized for their benefit.
As in previous years, this time too doctors,
patients and care-givers ran the Marathon
led by Dr. B.S.Singhal.
The proverbial stem cell raises its head
again. In one of the best compilations I
have read on the subject, this one gives us
reason to be happy, but also sounds alarm
bells if taken too simplistically.
And in my ‘Round Up’, Surgical Techniques
have been used to treat Parkinson’s since
the 1930s. The early procedures were risky
and were largely abandoned. The drug
Levodopa became an established
treatment for the condition in the late
1960s.
In recent years, there has been renewed
interest in surgery because the drug,
although very effective, does not work for
everyone. There have also been advances
in surgical techniques and developments
in neuro- imag ing and computer
technology that have enabled surgeons to
pinpoint target sites in the brain more
accurately. Surgery does not provide a cure
or a slow down progression in Parkinson,
but in some people, it can provide good
symptom control. Because of the risks
If you want to be happy and sucessful in life, never stop learning
From the editor's deskFrom the editor's desk
2
involved, surgery is
mainly used to treat
people who have had
PD for several years,
whose symptoms are
resident to drugs or
people who are finding
that the drugs no
longer control their system. Those who
have conditions such as high blood
pressure, cardiovascular d isease,
depression, dementia, will not be suitable
candidates for surgery.
Physiotherapists are trained health
professionals who use physical treatments
to help treat people of any age who have
physical problems because of illness, aging,
or injury.
Physiotherapists will be particularly
interested in assessing and treating the
effects that Parkinson’s can have on
mobility, gait, posture balance, activities
involving transfers (such as getting in and
out of bed) and dexterity. They may also be
involved in managing non- motor
symptoms, such as pain & sleep related
problems.
In the early stages of the condition,
maintaining your functional ability through
exercise and relaxation will be a
phys iotherapist ’s main focus . As
Parkinson’s progresses and the symptoms
tend to be more profound they may also
advise you on ways of managing particular
difficulties you are experiencing, such as
freezing, balance problems, falls and
immobility.
For more information contact me or the
Society website.
Remember you are never alone.
One Day Symposium on Parkinson’s DiseaseOne Day Symposium on Parkinson’s Disease
To see happiness in action, Smile and star a chain reaction3
On the 25th of November 2010 the
PDMDS, along with Jupiter Hospital
and the Indian Medical Association
(Thane Chapter) organized a one
day Symposium on Parkinson’s
Disease for medical and allied
health professionals. The session
was chaired by Dr. Pravina Shah and
Dr. Yogesh Thakkar. Dr. Shilpa
Chitnis and Dr. Pettarusp Wadia
were the speakers for the day.
Dr. Maria Barretto, Co-ordinator of
the PDMDS opened the session
with a video presentation of the
various activities of the Society.
Dr. Pravina Shah introduced
Dr. Shilpa Chitnis and invited her to
take the podium. Dr. Chitnis led the
audience through a very detailed
and highly informative talk
e n t i t l e d “A n O v e r v i e w o f
Parkinson's disease, Medical and
Surgical Management”. She began
with a brief historical overview of
the disease, before moving onto
the modern theories, including
b i o l o g i c a l t h e o r i e s a n d
environmental factors. Following
this, she explored the various
symptoms of Parkinson’s disease;
the easily recognizable motor
symptoms, as well as the lesser
known Non Motor Symptoms. She
a l s o t o u c h e d o n o t h e r
Parkinsonian conditions such as
PSP, MSA, etc. To round up the
session, Dr. Chitnis spoke about the
various treatment options from the
drug treatments available to the
surgical options.
Dr. Yogesh Thakkar then introduced
Dr. Pettarusp Wadia, the second
speaker for the day. Dr. Wadia’s talk
consisted of illustrative case
presentations, through video clips.
Dr. Chitnis also showed a few video
clips of patients with Parkinson’s
and Parkinson’s related conditions.
The talks were followed by a brief
Question and Answer session. The
Symposium concluded with a vote
of thanks, during which the
speakers were presented with
b o u q u e t s a s t o k e n s o f
appreciation.
Support Group InitiativesSupport Group Initiatives
Learn from yesterday, live for today, hope for tomorrow4
CHEMBUR SUPPORT GROUP
On the 17th of July 2010, we
inaugurated our new Chembur
support group. The group was
initiated by Mr K. Kamdar of our
D a d a r s u p p o r t g ro u p w h o
networked with the Dignity
foundation for the use of their
premises. It was heartwarming to
see this event so enthusiastically
a t t e n d e d b y p a t i e n t s a n d
caregivers.
Mr. Srinivasan, representative of the
Dignity Foundation welcomed us to
the premises and proceeded to give
us an int roduct ion on the
Foundation. He emphasized how
glad he was to be working with the
PDMDS and to be able to reach out
to so many people.
Dr. Maria Barretto then gave a short
talk on the Society and its activities.
She gave a brief overview of
Parkinson’s disease and the role the
society played in assisting the
patients and caregivers. This was
followed by a question and answer
session, where patients came
forward with their concerns and the
various problems they faced with
Parkinson’s.
An interactive physiotherapy
session was conducted. The
physiotherapist guided the group
through a series of basic exercises
that they could practice at home.
Though the venue for conducting
the meeting was good, access to the
venue posed a problem to some of
our patients. We therefore had to
relocate. Our Lady of Perpetual
Succor (OLPS) church in Chembur
offered us a venue at their Seva
Daan Special School. The group
meets here on the third Saturday of
every month at 10:00 am.
ADDRESS
Seva Daan Special School, Opposite
OLPS Church, Near Diamond
Garden, St. Anthony’s Road,
Chembur (W), Mumbai – 400 071
VASHI SUPPORT GROUP
October marked the inauguration of
our support group in Vashi. In
collaboration with the Specialty
Physiotherapy Department of MGM
Hospital, the first meeting was held
on the 26th of October, 2010.
The meeting was well attended with
patients along with their caregivers
and family as well as the faculty of
the physiotherapy department.
Dr. Maria Barretto opened the
meeting with a presentation on the
PDMDS and its role in the lives of
people affected by Parkinson’s
disease. Dr. Kalyani Sen, the medical
Learning the basics of exercising- Chembur Support Group
In all things it is better to hope than to despair5
Superintendent said a few words
g iv ing her support to th i s
undertaking.
Dr. Sh i lpa and Dr. Merula ,
physiotherapists at MGM hospital
gave a brief presentation on
Parkinson’s disease, speaking about
the causes, symptoms and the
management of the disease.
The group was then rearranged into
a circle and the physiotherapy
session began. The highlight of this
session was the involvement of the
entire physiotherapy department
with each patient receiving
individual attention and being
assisted throughout the
session.
The evening was rounded off
with refreshments provided
by the Hospital. A special
mention must be made of Dr.
Brinda Shah of MGM Hospital
who was instrumental in co-
ordinating this Support group
f r o m i n c e p t i o n t o
actualization.
The Vashi Support Group meets
every last Tuesday of the month, at
3:00 pm.
ADDRESS : Specialty Physiotherapy
Dept., MGM Hospital, Sector–3,
Vashi, Navi Mumbai – 400 703
Lets exercise togetherPhysiotherapy at Vashi Support Group
Positive anything is better than negative nothing6
Marathon 2011Marathon 2011
P D M D S h a s
been creating
awareness by
r e g u l a r l y
participating in
the Mumbai
Marathon. This
y e a r w a s a
record of sorts
a s w e h a d
participants in
every category . Dr. B.S Singhal -
Founder Member of PDMDS) and
Mr. T. K. Roy ( Vice-President, Sun
Pharma) led the team of 36
supporters, from various walks of
life in the category of Dream Run.
Mr. Pierre Dsouza who initated the
participation of the PDMDS as our
dream runner at the 2007
Marathon this year ran the Full
Marathon. Mr. R Mahimtura,
(South Mumbai support group
member), made his mark in
the wheelchair category while
Mr.Shreyas Malkhan (Borivli
Support group member)
c o m p l e t e d t h e H a l f
Marathon.! We also saw
p a r t i c i p a t i o n o f o u r
supporters Mr. Ghanshani and
his friends in the Senior citizen
run. The t-shirts donned by
the participants and the
PDMDS banners carried by
each group drew the attention
of many who approached us
to gather knowledge on
Parkinson’s disease and the
work of the society. We would
like to take this
opportunity to
thank each one
of you for your
s u p p o r t , i n
participating in
this charitable
event, and also
f o r y o u r
g e n e r o u s
contribution in
ra is ing funds. The Mumbai
Marathon has always provided us
with a platform to create awareness
and we look forward to greater
participation from our supporters
in the coming year.
Team PDMDS 2011 with youngest participant Master Karan Sankhla (Age 12 yrs)Team PDMDS 2011 with youngest participant Master Karan Sankhla (Age 12 yrs)
Helping us createawareness: Mrs Baker-(Caregiver)Helping us createawareness: Mrs Baker-(Caregiver) Dr. Lalkaka & Dr. Wadia for PDMDSDr. Lalkaka & Dr. Wadia for PDMDS
Advocacy Helping Yourself and OthersAdvocacy Helping Yourself and OthersMr. Ronald RodriguesMr. Ronald Rodrigues
When you have love in your heart ypu can see beauty in everything7
Glimpses of Marathon 2011Glimpses of Marathon 2011
Mr. Shreyas Malkhan completing the
Half Marathon !!!
Mr. Shreyas Malkhan completing the
Half Marathon !!!Spreading Awareness - Mr. Ghanshani & FriendsSpreading Awareness - Mr. Ghanshani & Friends
Woody Allen said, ”People can be
divided into three groups: those who
make things happen, those who
watch things happen and those who
wonder what happened, showing
up is 80% of life.”
You had no choice about the
entrance of Parkinson’s disease into
to your life, but you do have a choice
in how you will live your life and what
your future will be. You may be
thinking, “what can one person do to
make a difference or effect the
future?” The answer is plenty.
Become an Advocate for Parkinson
disease
Advocates make things happen.
Advocating for Parkinson’s disease
takes as little or much commitment
as you decide to put towards the
cause. Advocacy can take many
forms. Here are some ways you can
make a difference:
Walk out your door and let others
see you with your symptoms. In this
way you will be educating others
about what PD is – and is not.
Attend PD support group meetings.
This is one of the best ways to learn
about PD, get support from others
who are experiencing issues similar
to yours, find resources, or share
your own knowledge about PD with
others. Over time as you get to know
the members of the group it
becomes more comfortable to be
with people at various stages of the
disease.
It feels good. The satisfaction and
pride you feel when helping others
are important reasons to volunteer,
when you commit your time and
effort to an organization or cause you
care about. The fulfilment can lift
spirits and feel empowering. As
caregiver, you also become a role
model for making the world a better
place.
Whatever you choose to do,
volunteering and community service
can benefit you, your family and the
community.
Close bonding: Myself (right) andmy friend Mr. Ubhaikar
Mr. Pierre D'souzaat the Marathon
Mr. Pierre D'souzaat the Marathon
One might wonder as to what is so
unusual for a person to use a
wheelchair at any airport; often
these are people who are sick, old
or unable to walk due to fractures
or disability. For me it was scary,
c h a l l e n g i n g a n d f u l l o f
apprehension. That’s because I
have been a patient of Parkinson
disease for the last ten to twelve
years. Parkinson’s disease is a
neurological disorder caused by
degeneration of brain cells and is a
progressive disease which leads to
chronic disabilities of movements
like slowness, tremors, drooping
rigidity called Bradyskinesia and
Dyskinesia which cause involuntary
movements etc.
To come to the subject, my
Parkinsonism had progressed and I
often had dyskinesia, so by the
time I had reached the airport I had
started having symptoms of the
same. Previously I had to ask for an
escort when travelling alone. The
escort usually absconded not
thinking that I needed any help. As
previously planned, my brother
had come to see me off, was to
escort me till the security area. But
unfortunately, he was not allowed
to in spite of his having a Defence
ID pass, as he is the Project
Director, NAG missiles. This
happens only in India.
So seeing him worried and anxious,
I told him not to worry and that I
will ask for a wheelchair and
manage. I also realized that due to
my dyskinesia I may fall and hurt
myself or the clumsiness may make
things awkward for me. So at the
ticket counter, I requested for the
obvious. But when the escort with
the wheelchair arrived and asked
me to sit; reality stuck me; that I
had reached the stage when
perforce I would require this
vehicle not only at the airport, but
at many other places too. Lots of
thoughts invaded my mind and for
few seconds I was oblivious to
where I was until the escort had
asked me again to sit. I recovered
and sat on it so clumsily that one
had to see it to believe it and at the
same time I realized that people
w e r e l o o k i n g a t m e w i t h
puzzlement , curiosity as they must
have thought as to why this lady
who was walking normally had to
resort to a wheelchair. You see till
that time I was not shaking and
fumbling in other words my
involuntary movements due to
dyskinesia had not become too
obvious.
Well, I got a grip on my thoughts
and said to myself, what the heck;
this had to happen one day. Why
should I feel awkward and pity for
myself? What is there is there; I am
not a freak. Once in control of my
confidence things became easier to
handle. At one time; when I
realized my escort trying to peep
There are always flowers for those who want to see them8
My Experiences on the Wheelchair at the AirportMy Experiences on the Wheelchair at the AirportMrs. Shail PandeyMrs. Shail Pandey
Either you run the day or the day runs you9
inside my purse; I looked up and
just glared at him- giving the
message loud and clear –Look
young man, I may look disabled and
demented ; don’t try to act smart
and get a false impression.
The fellow got the message and
then onwards it was a smooth ride.
I quite enjoyed and felt privileged
as I did not have to stand in the
queue. Along came
another fe l low
t rave ler in h i s
c h a r i o t i . e . a
w h e e l c h a i r . I
i m m e d i a t e l y
started conversing
w i t h h i m . W e
exc h a n ged t h e
c a u s e o f o u r
i n d i v i d u a l
problems. By this
t i m e m y
involuntary movements did
increase and the same people who
looked with puzzlement when I had
stepped into the wheelchair,
glanced at me with sympathy and
pity. I could well read their thoughts
“how sad poor thing... she is not
normal and it looks as if she has lost
it in her head.” In other words, I did
look demented. But by this time, I
did not care and even looked at
them and smiled. It even crossed
my mind to wink at some but
controlled myself.
In the aircraft, things went off well.
By the time I reached Bangalore,
my dykinesic movements had
decreased and I told the air-hostess
to give the wheelchair to my co-
passengers who needed it more.
My only request was to provide me
an escort to help me with my
luggage etc. My son had come to
pick me up. By the way I should
mention here that there was new
puzzlement on the faces of my co-
passengers. Surely they wondered,
“What’s with this lady, first she
resorts to wheelchair and looks
demented and then now she walks
quite normally and does look
normal.
Well my dear friend this is what
happens to a P.D. patient. If they
could understand how difficult
things become and
it is even more
a g o n i z i n g a n d
traumatic it is to
deal with them. It
was also not an
easy experience for
me, but I am glad
that God gave me
the strength to
bear it like a fighter.
To say the least, I
patted myself for
my courage in handling this
wheelchair experience without
much self pity and fear. I always
believe in the motto that “God
helps these who help themselves” I
narrated my whole ordeal to my
son on the way home. I am sure he
also must have felt proud of me.
Mrs Pandey assisting friends at Support Groups
Action expresses priorities10
types in the body during early life
and growth. In many tissues they
serve as an internal repair system,
dividing without limit to replenish
other cells. When a stem cell
divides, each new cell has the
potential to either remain a stem
cell or become another type of cell
with a more specialized function
such as a red blood cell or brain cell
or muscle cell etc. Stem cells can
be distinguished from other cell
t y p e s b y t w o i m p o r t a n t
characterist ics: 1. they are
unspecialized cells capable of
renewing themselves through cell
division. 2. they can be induced to
become tissue or organ specific
cells with special functions.
Types of Stem Cells
1. Embryonic stem cells: As the
name suggests, these are derived
from embryos. The embryos from
which these cells are derived are
typically four or five days old and
are a microscopic ball of cells called
the blastocyst. Theoretically these
cells can give rise to all cell types in
the body. Growing cells in the
laboratory is called cell culture. To
be used in ce l l t ransplant
treatments the cells will need to be
directed into a more mature cell
type to be therapeutically effective
with minimal risks. However
coaxing these cells to become a
particular cell types isn’t easy.
Embryonic stem cells carry the risk
of transforming into cancerous
tissue after transplantation. If
scientists can reliably direct the
differentiation of embryonic stem
cells into specific cell types, they
may be able to use the resulting,
differentiated cells to treat certain
diseases in the future; however
there are currently no treatments
available using embryonic stem
cells.
2. Adult stem cells: This is thought
to be an undifferentiated cell found
amongst differentiated cells in a
tissue or organ that can renew itself
and can differentiate to yield some
or all of the major specialized cell
types of the tissue or organ. The
primary role of adult stem cells is to
maintain and repair the tissue in
which they are found. There are a
few stem cell therapies that are
widely accepted and these use
tissue-specific stem cells such as
bone marrow or cord blood stem
cells to treat diseases of the blood
or to restore the blood system after
treatment for specific cancers.
Types of adult stem cell are
mesenchymal stem cells (found in
tissues such as the bone marrow
and is able to produce bone,
cartilage and fat), hematopoietic
stem cells (give rise to all types of
blood cells), neural stem cells (in
the brain give rise to neurons,
astrocytes and oligodendrocytes)
and epithelial and skin stem cells.
3. Cord blood stem cells: At birth
the blood in umbilical cord is rich in
blood-forming stem cells. These
are used similarly to adult stem
cells to treat blood disorders or
restore the blood system after
treatment for certain cancers.
4. Fetal stem cells: These are taken
from the fetus; most tissues in a
fetus contain stem cells that drive
the rapid growth and development
of organs. Like adult stem cells,
these are generally tissue-specific
and generate mature cell types
within the particular tissue or
organ in which they are found.
5. Induced pluripotent stem cells:
These are adult cells that have been
genetically reprogrammed to an
embryonic stem cell-like state by
being forced to express genes and
factors important for maintaining
the def in ing propert ies of
embryonic stem cells.
6. Somatic cell nuclear transfer
(SCNT): This is a laboratory
technique for creating a clonal
embryo, using an ovum with a
donor nucleus; it can be used in
embryonic stem cell research or in
regenerative medicine where it is
s o m e t i m es r e fe r r e d t o a s
therapeutic cloning. In SCNT, the
nucleus which contains the
Facts About Stem Cell Therapies - Continued from page 1
Be the change that you want to see in the world11
organism’s DNA, of a somatic cell is
removed and the rest of the cell
discarded. At the same time, the
nucleus of an egg cell is also
removed. The nucleus of the
somatic cell is then inserted into
the enucleated egg cell and the
s o m a t i c c e l l n u c l e u s i s
reprogrammed by the host cell.
The egg now containing the
nucleus of the somatic cell is
stimulated with a shock and will
begin to divide. After many
divisions in culture, this single cell
forms a blastocyst with almost
identical DNA to the organism.
HOW DO CLINICAL TRIALS WORK
A clinical trial usually has an
experimental treatment group
which consists of patients receiving
the drug under study while another
group serves as a control group.
The results of these trials are
a n a l y z e d u s i n g s t a t i s t i c a l
methodologies to determine
whether any difference between
the two groups i s due to
coincidence or placebo effect or is a
real statistically significant and
meaningful therapeutic response.
There are four stages of testing in a
clinical trial. In Phase I, small group
of people are studied with the goal
to determine safety and dosage
range and identify any side effects.
Therapeutic benefit is not the
primary goal of this initial phase
although this may be at times be
addressed. Phase II trials involve a
larger group of patients based on
findings of the phase I trial and
effectiveness is studied along with
ongoing monitoring for side
effects. In a phase III trial, a larger
group of patients are treated to
confirm effectiveness compared to
standard therapies. Last but not
the least, phase IV trial happens
after a medication has been
approved and is sometimes called
post-marketing surveillance study.
Rare but serious side effects are at
times only detected during large
phase IV trials.
WHY AND HOW MEDICAL
SAFEGUARDS HAVE EVOLVED
There have been circumstances in
the past where the rights of
patients were not respected which
resulted in tremendous harm. One
of them called The Nuremberg
Code was formed in direct
r e s p o n s e t o e x p e r i m e n t s
conducted in Germany on
prisoners during the Nazi rule and
war. This code dictates that
research must involve voluntary
informed consent of the persons
being experimented on after
discussion regarding safety and
potential side effects of the
treatment. The Belmont Report
outlines ethical guidelines for three
main principles to be followed in
experimentation on humans;
respect for persons, beneficence or
promoting well being of others and
justice. This report resulted after
review of the Tuskegee Syphilis
S t u d y w h i c h fo l l o wed t h e
progression of Syphilis in nearly
400 african-american men over a
period of 40 years without
informing them that there was an
effective treatment available. As a
result of this many died from the
disease and their wives and
children were infected as well.
Another important cornerstone of
ethical human experimentation is
the Helsinki Declaration which calls
for approval of a research ethics
committee and scientific evidence
suggesting that the experimental
treatment can be expected to be
beneficial. If these safeguards are
not followed, then disastrous
complications can result such as
cancerous growth of the implanted
stem cells and its sequalae and the
infamous Thalidomide Tragedy
where children of women treated
with this sedative medication were
born with a rare birth defect called
Phocomelia, in which legs or arms
are severely malformed or missing.
WHAT SHOULD YOU KNOW
ABOUT STEM CELL TREATMENTS
1. There are different types of stem
cells each with their own purpose:
this is addressed above.
Peace comes from within12
2. A single stem cell treatment will
not work on different unrelated
diseases: each type of stem cell
fulfills a specific function in the
body and cannot be expected to
make cell types from other tissues.
It is critical that the cell type used as
a treatment be appropriate to the
specific disease. One of main
warning signs that a clinic may not
be credible is when they offer
treatment for a wide variety of
condition and rely on only a single
cell type.
3. There are very few widely
accepted stem cell therapies
available currently: as addressed
a b o v e , b l o o d s t e m c e l l
transplantation is one of the better
defined modalities. In addition
some skin disorders and corneal
diseases may be treated with
grafting that depend on stem cells
from these specific organs only.
4. Beware of anecdotal patient
testimonials stating they got
better: there are multiple reasons
why patients say that they feel
better after a stem cell treatment.
Firstly the intense desire or belief
that a treatment will work can
cause a patient to have a positive
physical and mental change, this
phenomenon is called the placebo
effect. Secondly other adjunct
therapies offered along with the
stem cell treatment such as dietary
modifications, physical therapy,
relaxation techniques and other
medications may make the patient
feel better in a manner that is
unrelated to the stem cell
treatment.
5. Why it takes time to develop
new therapies: new ideas are
initially tested in a laboratory
setting and many a times these
experiments do not work. Even
when the basic science is well
addressed in cell and tissue culture
models, they may fail as a therapy
in animal models and lastly
something that works in an animal
model cannot be extrapolated to
human patients without extensive
study. A new therapy takes decades
to transition from the laboratory
bench into an approved treatment
modality. If a treatment has not
extensively studied in a well
designed and executed clinical trial
and gone through the mandatory
preclinical and clinical testing
including addressing important
safety issues, it is unlikely to be
approved as a therapy by the
regulating organizations.
6. Although stem cells came from
your own body, it doesn’t mean
that they are safe: while it is
mostly unlikely to have an immune
response to your own cells, the
procedures that are required to
obtain these cells from the body,
grown in cel l cultures and
eventually delivered back are not
without their risks. These cells
after leaving a patient’s body are
subject to extensive manipulations
t h a t c o u l d c h a n g e t h e
characteristics of the cells; they
may be contaminated with
bacter ia , v i ruses or other
pathogens which could cause
disease.
7. What do you lose by trying out
an unproven treatment: some of
the conditions that stem cells offer
a cure for are considered incurable
and patients feel like they have
nothing else to lose by trying these
radical treatments. However there
is real risk of complications, both
immediate and long term without
any clinical benefit. Participating in
an unproven therapy may at times
make a patient ineligible to
participate in a meaningful,
regulated clinical study. Lastly not
to forget the tremendous financial
burden to the patient and family
with long term implications for the
future.
8. An experimental treatment is
not the same as a clinical trial: the
fact that a procedure is touted as
new and experimental doesn’t
make it part of a carefully designed
clinical study. Before starting a
clinical trial, there has to be
preclinical data demonstrating
Happiness comes from your own actions13
safety and eff icacy of the
treatment. There is also oversight
from the institutional review board
(IRB) or medical ethics committee
and in Europe and USA, the trial is
assessed and approved by the
governing agencies such as
European Medicines Agency
(EMEA) and Food and Drug
Administration (FDA). The cost of
such a clinical trial is usually
covered by the pharmaceutical or
biological company trying to
develop the new therapy and there
is no cost to the patient. There is a
well defined protocol with a
p r o c e d u r e w h i c h i n v o l v e s
identifying inclusion and exclusion
criteria and a detailed and frank
discussion of expectations, side
effects and the need to sign an
informed consent by the patient
prior to participation.
WHAT TO ASK A STEM CELL CLINIC
1. Is this treatment part of an
approved formal clinical trial? (the
discussion should really end here if
the answer is NO)!
2. Show me some published
scientific evidence that this therapy
has worked in smaller groups of
patients and safety issues have
been adequately addressed.
3. Show me the credential,
qualifications and experience of
your staff with this therapy.
4. What is the cost of this therapy
and will my insurance cover this (if
it is not an approved therapy the
likelihood of insurance covering
this is zero).
5. How does this compare to
existing alternate treatment
options for my condition?
6. What is the source of the stem
cells, how are they being isolated,
grown and differentiated into
specialized populations before
inplantation?
7. If these cells aren’t taken from
my own body, then what will be
done to prevent my immune
system from reacting to these
transplanted cells?
8. What are the risks of the
procedure, possible short term and
long term side effects of the
therapy?
9. Is your clinic adequately
e q u i p p e d t o a d d r e s s a n y
emergencies such as a severe
allergic reaction or any other side
effects of the therapy?
10. What compensation am I
ent i t led to as a resul t of
participating in this study (most
clinical trials come with some
compensation for the patient in
the form of cash payment to cover
travel expenses and all visits, lab
tests, imaging studies as part of the
study are covered with no
additional expense to the patient).
THE FUTURE OF STEM CELL
SCIENCE
Having said everything, stem cell
s c i e n c e i s e x t r a o r d i n a r i l y
promising. There have been
tremendous advances in treating
diseases of the blood forming
system, replacing cells lost to side
effects of aggressive chemotherapy
for cancers and corneal grafts.
There are clinical trials being
approved to conduct neural stem
cell treatment for stroke and
embryonic stem cell-based therapy
is being reviewed for acute spinal
cord injury and may translate into a
clinical trial in the near future.
There is hope that stem cell
therapies will be available some
day to treat a wide range of
incurable diseases. Until this
happens, we should approach the
claims of stem cell clinics with
trepidation and intense skepticism
to avoid physical, mental and
financial loss.
REFERENCES AND ADDITIONAL READING
1. Stem Cell Information, The National Institutes of
Health Resource for Stem Cel l Research
(http://stemcells.nih.gov)
2. International Society for Stem Cell Research
(ISSCR), www.isscr.org
3. Darren Lau, Ubaka Ogbogu, Benjamin Taylor et al.
“Stem Cell Clinics Online: The Direct-to-Consumer
Portrayal of Stem Cell Medicine”. Cell Stem Cell,
Volume 3, Issue 6, 591-594, 4 December 2008
4.http://www.nature.com/stemcells/2008/0806/080
626/full/stemcells.2008.98.html
5.http://cellmedicinesociety.org/component/conte
nt/category/49?layout=blog
Be faithful in small things because it is in them that your strength lies14
When Sudhir, a friend of mine who
organizes eco-tours in the
Himalayas, mentioned how difficult
it was to find replacements for last
minute drop outs from his trek in
Ladakh – particularly when the
group would be away from the
usual ‘tourist’ trail, almost instantly
I made up my mind to
sign up.
With Sudhir, I have
been to the foothills of
Himalayas, climbed
u p t o Tu n g N a t h &
Nagtibba, trekked ‘Har
Ki Dhun’, this was in the
pre-PD days. Now with
the onset of PD, it was a
flat refusal from Sudhir
as well as my wife.
“Why?”, I argued. PD is not a
‘lifestyle aliment’, I look at it as
tough draw of luck. Should it dictate
my life, “No”, I said.
Its nearly 5 years ago, that a routine
annual health check up lead to visit
to neurologist. “Early onset” he
declared. It was a crushing blow for
myself as well as my wife. Is it like a
cancer or heart attack or worse ?
Doubts swarmed our minds. At 43,
there was so much to do, to dream
and have fun trying follow this
dream together. Have I lost
everything ? What about my
family? Am I on borrowed time ?
As we read more about Parkinson, I
realized that Parkinson or similar
neurological disorders are not
uncommon in our society. Though,
we do not know factors that lead to
it and unfortunately today there is
no cure, I am sure that with rapid
advances in science its not long
before this becomes common.
What surprised me most was that
Jhalak of LADAKHJhalak of LADAKHMr. Milind Phadke (Khar Support Group)Mr. Milind Phadke (Khar Support Group)
there were Parkinson affected
elders in families of some of my
close friends and aquaintances.
Unfortunately branded as ‘Elders
Disease’, they were confined to
home, it was almost as if they had
resigned to this fate.
Having a positive outlook and
l e a d i n g a n o r m a l
healthy life was key to
overcome this setback.
With a strong support
f r o m m y w i f e , I
continued with work &
hectic travel, started on
hobby that I had been
putting off. “Love life,
Live life” became my
motto.
For the trek in Ladakh,
my wife soon supported on
condition of getting a clean chit
from the doctors. As if to rein in my
enthusiasm my family decided to
join in this adventure. Fortunately,
neurologist as wel l the as
cardiologist advised that going to
ladakh, while taking due care,
would not be difficult.
Majestic Black Necked Crane of Ladakh
This was followed by days of
frenzied preparation. We started
on longer walks and exercise. We
did a dry run of Rajgad trek. To my
relief, I could manage this without
much difficulty. Since the group
bookings were already done, we
scrambled for flights and decided
to join everybody a day late to give
us time to acclamatise ourselves to
the altitude. Sudhir chalked out a
schedule and trail considering our
limitations, while I
conceded to have a
guide and help to
accompany us. We
got ready for the
challenge and to
e x p e r i e n c e t h e
humbling beauty of
nature.
The journey from
Shrinagar to Leh,
gradually took us
through the long, steep winding
roads of Zanskar range. While this
tools us across the Himalayas to the
Indus platau. The contrasting
landscape was interesting to note.
After overnight halt at Kargil, we
reached Leh.
A small welcoming party, Sudhir
and rest of group, quickly helped us
settle down and filled us in on
camp details and the part of the
trail we were joining. While
everyone was bubbling with
exc i te m e nt , I was g et t i n g
apprehensive about what I had
planned to do. Rest of the day was
spent discovering Leh and markets.
We started early next morning and
headed to the camp site in Hemis
National Park. This was to be our
base for next few days, while we
would trek the trails in search of
the illusive crane and blue sheep.
Tents allocated, Sponge sheets &
sleeping bags distributed, we
started on the first leg. Soon the
younger team disappeared, in
pretext of photographing birds and
natural beauty I brought up the
rear. This set up tone for rest of the
four days. We went up to altitudes
exceeding 17000 ft. Managed to
spot Bharal. Got a glimpse of the
golden eagle and majestic black
necked crane.
Parkinson’s is not a disorder any of
us wants. Now I would say it has
opened new doors for me, given a
perspective to live everyday to its
fu l lest . My f i rst
thoughts were that
my work was done
in, my family was
done in. Then I
realized that the
problem was my
focus was on things
d o n e . B e i n g
d i a g n o s e d w i t h
Parkinson, made me
rea l i ze o f many
things that I would
like to do. I wasn’t going to waste
the best years ahead of me.
Trek in Ladakh, gave us positive
attitude and with my wife we made
our motto – “Yes, we can” together
we are going to overcome
insurmountable obstacles along
the way.
Great people usually dont feel important; they make others feel important15
Mezmerizing Ladakh
The Life given us by nature is short, but the memory of a well spent life is eternal16
When we had the first "Art Session"
with the patients, afflicted with
Parkinson's disease, I did not know
what to expect from them and
myself. What happened in that
session was most encouraging for
me as well as (I think) for the
participants. I became confident
that art is going to help them
therapeutically for improved motor
movements,
c o - o r d i n a t i o n a n d m o s t
importantly divert their mind from
dwelling on the existing problems.
When asked to draw from nature or
a person, or an event or anything
that makes them happy, everyone
came up with really beautiful
Art TherapyArt TherapyMrs. Chitra SenMrs. Chitra Sen
drawings. Beautiful because they
expressed straight from the heart
with amazing enthusiasm. Some
have had long
c a r e e r s i n
p ro fes s i o n s
close to art
forms and one
could see that
in their work.
T h e y
promised to
go back to
s k e t c h i n g .
Some have been drawing pictures
w i t h t h e i r c h i l d r e n a n d
grandchildren and have now
discovered that they
are enjoying doing this
on their own too.
O t h e rs w h o we re
exposed to this for the
first time, found it fun
enough to regret not
h a v i n g d o n e t h i s
b e f o r e . A n o t h e r
sess ion had them
creatively overlap basic forms to
make designs or whatever they
imagined they could see in the
r e s u l t a n t p a t t e r n s . O u r
experiments with brush and paint
h a d s o m e m a k i n g s t r o n g
statements on social health issues
like - "Stop Smoking"! These
sessions have encouraged and
inspired some to work on their art
skills at home and one of them is
actually compiling her sketches in a
book form. Drawing, painting, lines
and colours have always had very
healing effects on the mind. The
enthusiasm the group has shown to
embrace this in their lives has given
the support group members and
me, a hope of putting up an
exhibition of their works and
expressions sometime in the
future.
Art Therapy at Dadar Support groupArt Therapy at Dadar Support group
Drawing our thoughtsDrawing our thoughts
Love changes everything it touches17
My mother was living with
Parkinson’s from 1981-2001. Infact
you would be surprised to know
that in her 20 years of living with
Parkinsons she never stopped
living. She made the most of time
and even went touring India with
fa m i l y. S h e l i v e d a f a i r l y
comfortable life until her last 4
years.
In 1997 I started experiencing a
problem in my writing. My speed
reduced and the writing became
smaller in size. I also started
developing pain in my hands.
Helping my mother in dealing with
Parkinson’s I was already aware of
t h e sy m p to m s , a n d h e n c e
immediately approached the
neurologist. When I was diagnosed
with Parkinson’s I went into
My experience as a caretaker & as a patientMy experience as a caretaker & as a patientMahindra Sanghvi- Borivli Support GroupMahindra Sanghvi- Borivli Support Group
A different journey awaits each one, but
our destination is the same.
Besides , localized support
groups, seminars , nat ional 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, please do contact us.
movement
depression. Along with it I lost
sleep, appetite and within a few
weeks lost around 5 kgs. I had to
soon depend on sleeping pills and
antidepressants.
With time I decided to work on my
other symptoms. I implemented
yoga, walking, physiotherapy and
praying in my daily regime.
Including these activities helped
me tremendously. The time I
would take just to carry out my
activities of daily living reduced
rapidly. Im proud to say that its
been 6 years that I have been off
sleeping pills and anti depressants.
It has developed a more positive
approach in living with Parkinsons.
I attend the support group
regularly and also try to socialize.
As and when time permits I also try
to catch up with my friends for a
game of badminton. I have also
been travelling across the globe
discovering new places along with
my family and caregiver. By putting
into practice some changes in my
daily lifestyle has given me a
different outlook, and Im sure it
will, to all of you’ll too!
PDMDS Groups in MumbaiPDMDS Groups in Mumbai
Keep your fears to yourself but share your courage18
SUPPORT GROUPS in Mumbai
Borivali (W): Saraswati foundation, First Saturday of every month, 10 amE-15, Bharat Baug, 1st floor, Lane next to Vijay Sales,Near Chandorkar Hospital, Behind Shiv Temple,S.V. Road, Borivli (W), Mumbai- 92
Dadar (W): Our Lady of Salvation Church, Second Saturday of every month 3:30 pm(Formerly known as Portuguese Church) Gokhale Rd South, Dadar (W), Mumbai 400 028.
Chembur: Seva Daan Special School, St. Anthony’s Rd, Third Saturday of every month 10:00 amNear OLPS Church, Chembur, Mumbai 400 071
Khar – Santacruz: Wi Wurry, Society of the Sacred Heart Third Saturday of every month, 4pm69 Provincial House, Sardar Vallabhai Patel Road,Behind Standard Chartered Bank, Off Linking Road (Lane between Standard Chartered and Tommy Hilfiger Showroom).Santacruz (W), Mumbai-54
Vashi: Specialty Physiotherapy Department, Fourth Tuesday of every month 3:30 pmMGM Hospital, Sector – 3, Vashi, Navi Mumbai – 400 705
New Marine Lines: MRC Bldg, Bombay Hospital Last Saturday of every month 12:30pmClassroom,2nd floor, 12 New Marine Lines, Mumbai- 20
Physiotherapy Support Groups in Mumbai
Wadala : Rotary Centre, Every Thursday 3:30- 5pmKarve Park, Behind Bharat Motor Training School,D. S. Barato Marg (Wadala Station Road)
Borivali (W): Saraswati foundation, Every Tuesday 10am-12 noonE-15, Bharat Baug, 1st floor, Lane next to Vijay Sales, Near Chandorkar Hospital, Behind Shiv Temple,S.V. Road, Borivli (W), Mumbai- 92
For further information about support groups in your area and attending the meeting please contact:Ms.Shibani on 91-22-22068787/22064747 /9967774944 | Poorva – 9920756750 | Debbie - 9867400480
You can also write to us at : Parkinson’s Disease and Movement Disorder Society,C/o Dr.B.S.Singhal, Rm 131, Bombay Hospital, 12 Marine Lines, Mumbai - 400 020
Email: [email protected]
If u
nd
eliv
ered
, ple
ase
ret
urn
to
:TH
E PA
RK
INSO
N’S
DIS
EASE
&M
OV
EMEN
T D
ISO
RD
ER S
OC
IETY
,6
, Jas
ville
, 1st
Flo
or,
Op
p. L
iber
ty C
inem
a,M
arin
e Li
nes
, Mu
mb
ai –
40
002
0.
Bo
ok-
Po
stFO
R P
RIV
ATE
CIR
CU
LATI
ON
ON
LY
movementmovement Issue 12 | March 2011Issue 12 | March 2011
KKLLEERRTT