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Cultivating Hope: Parkinson's Disease Awareness and Support in Pakistan

This project aims to raise awareness about Parkinson's disease in Pakistan, where there is limited infrastructure for diagnosis and treatment. It provides support through support groups, seminars, and educational materials.

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Cultivating Hope: Parkinson's Disease Awareness and Support in Pakistan

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  1. 4 Years of Cultivating Hope 2oo8-2o12

  2. Bismillah CULTIVATING HOPE Masnoon dua

  3. INCIDENCE OF PARKINSON’S DISEASE • Parkinson’s disease affects about • 1 of 250 people older than 40 • 1 out 100 people older than 65 • 1 of 10 older than 80. • It commonly begins between ages of 50 and 79. • Rarely occurs in children or adolescents CULTIVATING HOPE Source: www.merck.com

  4. Parkinson’s cases expected to double worldwide by 2030 • 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 CULTIVATING HOPE

  5. Parkinson’s in Pakistan \\\ • 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 • No research available on incidence of disease in Pakistan CULTIVATING HOPE *Figures estimated based on incidence in India

  6. 4 Years of Cultivating Hope 2oo8-2o12

  7. PPS Board [ for details see the web site ] CULTIVATING HOPE

  8. Society’s Progress • 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 US • info@parkinsons.org.pk functional • Developed a Multilingual Brochure titled ‘Cultivating Hope’ aimed at creating increased awareness • Brochure on “Exercises for PD patients” developed and distributed free amongst patients and GP clinics. • Registered under societies act • Auditor appointed CULTIVATING HOPE

  9. Creating awareness • 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 coverage • Speaking at public forums • Sponsored six talk shows on Heath TV with specially developed program ‘a day in a life’ CULTIVATING HOPE

  10. Our Progress Coping Strategies • 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 CULTIVATING HOPE

  11. 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) CULTIVATING HOPE

  12. Activities on camera

  13. Parkinson’s Unity Walk

  14. World Parkinsons Day seminar - April 2008 CULTIVATING HOPE

  15. Seminar on Effective Speaking Techniques - CULTIVATING HOPE

  16. Issues in Pakistan • Limitednumber of neurologists • GP as firstpoint of contacthavelittleknowledge of disease • Movementdisorderclinicsmissing • Doctorshavelimitedinfo / time • Patientnotfullybriefedonimportance of selfmanagement • Awarenesslimited - no researchonincidence, estimated 4,50,000 afflicted • Nursingspecialists ? • Lack of supportgroups • Career dilema/ supportsystem • Deepbrainstimulation ? - Cost US$40k / India US$10k CULTIVATING HOPE

  17. Road Map - • 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 CULTIVATING HOPE

  18. For a PD patient climbing steps is like climbing the Mount Everest CULTIVATING HOPE

  19. You are not alone

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