slide 1€¦ · ppt file · web view · 2017-02-20bismillah. cultivating hope. masnoon dua....

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Bismillah

CULTIVATING HOPE3Masnoon dua

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INCIDENCE OF PARKINSON’S DISEASE

Parkinson’s disease affects about 1 of 250 people older than 401 out 100 people older than 651 of 10 older than 80.

It commonly begins between ages of 50 and 79.

Rarely occurs in children or adolescents

Source: www.merck.com

Parkinson’s cases expected to double worldwide by 2030

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The bulk of this growth in the next 15 years will not be in the US and Europe but in other places namely China and the subcontinent

The challenge is …..This growth will occur in societies where there is limited infrastructure in place to diagnose individuals, much less address their medical needs or the societal impact

Parkinson’s in Pakistan

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No research available on incidence of disease in Pakistan

*Figures estimated based on incidence in India

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In a study conducted covering most populous countries of the world, estimated PD cases in Pakistan are around 450,000* and there are possibly another 500,000 who have never consulted a doctor

4Years of

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PPS Board [ for details see the web site ]

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Society’s Progress

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Web site – www.parkinsons.org.pk to provide a forum for learning and dialogue and sharing of best practices Close cooperation with European Parkinson’s Disease Association (EPDA) Parkinson's Disease Society UK and Parkinson's Disease Foundation USinfo@parkinsons.org.pk functionalDeveloped a Multilingual Brochure titled ‘Cultivating Hope’

aimed at creating increased awarenessBrochure on “Exercises for PD patients” developed and distributed free amongst patients and GP clinics.Registered under societies actAuditor appointed

Creating awareness

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On World Parkinsons Day 2009-10-11,PPS Directors participated in a special

program on Parkinson’s developed and aired by channal’ TV one”

Widespread press coverageSpeaking at public forumsSponsored six talk shows on Heath TV

with specially developed program ‘a day in a life’

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Support Groups sessions held at AKUH <Jinnah and South City Hospitals covering coping strategies and share each others experience on tips and tricks.

Seminars held over 2008 -09// ‘Keep Moving’ - Aga Khan University Hospital ‘Speaking Effectively’ - Aga Khan University Hospital ‘Mood Management' - South City Hospital Seminar on Deep Brain Simulation - AKUH Parkinson’s Management Clinic - Aga Khan University Well…ness Seminar 1 at JPMC Well…ness Seminars 2 at South City Hospital Wellness seminar 4 on music therapy Nov 09 at Jinnah

hospital auditorium Addressed Rotary Metropolitan club on what is Parkinson's

Our Progress Coping Strategies

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Seminars held ; ]up north]

•Lahore TIPS AND TRICKSof managing Pd on World Parkinsons Day April 2010-2011.

• These seminars were largely attended by PD patients and addressed by eminent neurologists.

•Seminar held in collaboration with Shifa International Hospital Islamabad in December 2011•Held PD Unity walk to create awareness, and promote healthy life style•At AKUH (ongoing)

Activities on camera

Parkinson’s Unity Walk

World Parkinsons Day seminar - April 2008

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Seminar on Effective Speaking Techniques -

Issues in Pakistan

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Limited number of neurologistsGP as first point of contact have little knowledge of

diseaseMovement disorder clinics missingDoctors have limited info / timePatient not fully briefed on importance of self

managementAwareness limited - no research on incidence,

estimated 4,50,000 afflictedNursing specialists ?Lack of support groups Career dilema/ support systemDeep brain stimulation ? - Cost US$40k / India

US$10k

Road Map -

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Work with leading hospitals to develop specialized Parkinson’s/movement disorder centers in order to help give PwP a multidisciplinary PD management facility

Work with teaching hospitals to develop short one day courses for GP’s who for a developing country with limited Neurologist resources are first line of diagnosis and treatment

Seek support of media and Pharma / philanthropic individuals to support projects/initiatives.

Reach out to Pak doctors abroad for their help and assistance. Increase awareness of the disease in Pakistan and help PwP and

caregivers better manage the condition going forward. Produce PD disease management info booklets in Urdu under Take

charge theme” Continue support group activity Develop physical therapy awareness and facilities Partner with leading hospitals in creating centres of exce

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For a PD patient climbing steps is like climbing the Mount Everest

You are not alone