Conquering Challenges

Reefaya Noortaj speaks about the challenges faced by a Parkinson’s disease patients and how King’s College Hospital is changing the outlook to treat it

One may ask 'why me?' when dealing with an overwhelming disease, often feeling alone and shut out from society due to stigma. I have been a witness and a caregiver of my grandfather, who has been a Parkinson’s patient for the last 15 years. I have seen the intense suffering my grandfather endured before proper diagnosis. It was heart-wrenching and emotionally depressing to witness a loved one suffer to the brink of loss until I came across the Walk for Parkinson’s at the EXPO 2020 Dubai in association with King’s College Hospital London, Dubai.

As a caregiver, I understand that seeking medical guidance can be daunting. But why must patients suffer, especially our close family members?

Huzaifa Ibrahim, founder of UAE Parkinson’s Foundation; Professor Ray Chaudhuri , Parkinson’s specialist, Dr Vinod Metta, gastroenterologist; Dr Guy Chung-Faye, and the entire KCH medical team are changing every Parkinson’s patient and carer’s life with proper treatment, guidance, and most importantly honesty.

Ibrahim who himself is a Parkinson’s patient explained: “We have one plan, one goal, and one mission, and that is to stand united against Parkinson’s. Here in the UAE, we believe in empowering and aiding people of different generations that includes empowering people of determination.”

Professor Chaudhuri explained: “Parkinson’s is a treatable condition with the proper treatment. It may not be curable but the right specialists will make patients 50 per cent better within the first two weeks. We provide holistic treatments because Parkinson’s is a mixture of diseases so we aim to make medicine personalised according to patients’ current issues.”

Jeffrey, a 73-year-old Australian patient, advised: “I truly commend King’s College Hospital as a patient who has been greatly cared for. I felt hopeless until I met Dr. Metta, Professor Chaudhuri, Dr. Chung Faye, and the entire KCH medical team in London.” Amal Lari, an Emirati carer, added: “Parkinson’s affected my mother from all ends. My mother was suffering terribly due to suspended movement but thanks to Dr. Metta, the right treatment subsided her condition to the minimum. My message to all Parkinson’s, potential ones too, patients are to have hope, exercise, share your thoughts, and stay patient,” added Lari.

Mohammed Al Mehri’s, director of Dubai Medical Tourism and Dubai Health Authority, late father was a Parkinson’s patient as well, his entire family faced the same situation as all the other mentioned patients and carers. “My father was mistreated as well and that was before me being the Director of Dubai Medical Tourism and Dubai Health Authority. He was a patient who got the disease at a very early age so I lived watching him with this disease. It’s such a hard thing for patients to live their lives normally with this disease,” said Al Mehri.

Ibrahim stressed that: “Parkinson’s is a disease that requires multidisciplinary care and not just one. It requires a whole team. Time has gone when doctors just prescribed medicine ready at a local pharmacy. That’s not what we aim for. We need more. I want the suffering to stop, I don’t want anyone else to suffer.”

Parkinson’s Disease Nurse Specialists (PDNS), play a vital element to aiding Parkinson’s patients and their families. These special nurses are widely available across Western or developed countries where Parkinson’s treatment is at its best. PD nurses generally follow the UK (NICE), Scottish (SIGN) and USA (MDS) guidelines to treat and aid Parkinson’s patients and support their family members daily. Kislyn Rodriguez, PD Nurse Specialist from KCH Dubai, added: “As a PD Nurse, we provide expert care. Our role is to support and educate our patients and carers to adapt to different types of treatments personalised for them such as oral medications or advanced devices aided therapies. We are involved with our patient’s care from the start of their diagnosis throughout their journey with Parkinson’s disease.”

Having a dedicated PD Nurse helps improve the health outcome and quality of life of Parkinson’s patients as they are closely monitored and taken care of. Aside from keeping track of patients’ medication, Kislyn mentioned that PD Nurses ensure continuity of care and emotional support are provided to their patients and carers, whether they are in the hospital or at home. “We collaborate and coordinate with the multidisciplinary team to provide care and other health services at any time.”

The most distinguishing factor about KCH and their entire medical team is its academic and practical research. “Care and research are integrally linked together. Hospitals that show research and care are proven to have better patient results” said Professor Chaudhuri.

Anil Dawan, professor of Pediatrics at King’s College London Hospital, further said: “We don’t believe in competition because competition brings boundaries. Excellence does not do that. We believe in innovation to bring new things at the right time but well tested when it’s safe. Multidisciplinary care given to patients is done right by the teams at KCH. Our dream was to bring the medical model that we enjoy in the United Kingdom to the rest of the world.”

Currently, Dr Metta and Professor Chaudhuri are working on a research paper to discover if there is genetic reasoning that links the common occurrence of Parkinson’s disease amongst Emiratis or generally within this part of the world. Additionally, KCH Dubai is setting up an innovative project that focuses on Bio Banking, where biological specimens, especially blood, are stored for studying different diseases. “Information allows biomedical scientists to analyse genetic origins of diseases. For example, the unique population of the UAE and establishing a biobank will allow us to come up with solutions for genetic origins of diseases of different ethnic groups,” said Tom Loney, epidemiologist.

The Dubai Police, Dubai Ambulance, and Dubai Municipality are all equally involved in providing endless support for the same. I strongly believe in our Rulers and their vision and mission to empower people of different ages, generations, and people of determination who will aid the needy.