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: pdmds.india@gmail.com | 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: pdmds.india@gmail.com

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movementmovement Issue 12 | March 2011Issue 12 | March 2011

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