A caregiver takes us through her personal journey from despair to hope
One may ask ‘why me?’ when dealing with an overwhelming disease, often feeling alone and shut out from society due to stigma. I’ve been a witness and a caregiver of my grandfather, who has been a Parkinson’s patient for the past 15 years. I’ve seen the intense suffering my grandfather endured before proper diagnosis, slowly deteriorating and coming to a stage where my family and I no longer had the right support and lost hope. It was heart-wrenching and emotionally depressing to witness a loved one suffer until I came across the Walk for Parkinson’s at Expo 2020 in association with King’s College Hospital (KCH) London, Dubai.
As a caregiver of a Parkinson’s patient I felt alone and sidelined in the process of finding the right medical institution and trustworthy specialists. Hopelessness was the right emotion to describe my situation at the time. On top of that, Parkinson’s patients and immediate family members, whether young or old, face immense social pressure and stigma for being diagnosed with a disease. Ultimately, patients and caregivers pay the price, often influencing them to stay in the dark rather than seeking medical help to treat patients. As a caregiver I understand that the step to seek medical guidance can be daunting but why must patients suffer, especially our close family members?
I met a very diverse group of patients of all ages, stages and races as well as caregivers at the Walk for Parkinson’s Expo 2020 event. I met a young Emirati gentleman who was diagnosed with Parkinson’s at the age of 30. There was a 70-year-old patient, who flew from Australia to contribute to the Parkinson’s Expo 2020 convention. All of the discoveries I’ve made at the event stirs my curiosity even more. Parkinson’s disease was commonly thought to affect elderly individuals but that’s not the case – it can affect anyone regardless of age. The patients’ views, experiences, and information encouraged me to investigate if Parkinson’s disease is a common condition? Why is Parkinson’s not age- and race-biased?
The founder of UAE Parkinson’s Foundation, Huzaifa Ibrahim and highly skilled Parkinson’s specialists Prof. K. Ray Chaudhuri and Dr Vinod Metta, gastroenterologist Dr Guy Chung-Faye, and the entire KCH medical team are changing Parkinson’s patients’ and carers’ lives with proper treatment, guidance and, most importantly, honesty.
All of these patients, caregivers, Parkinson’s specialists, and founders were united at the Walk for Parkinson’s event for one cause, which is to support Parkinson’s patients and raise awareness to better combat this disease. The people leading this movement makes me want to make a difference in lives like my grandfather’s and want to explore more about this disabling disease.
“We have one plan, one goal, and one mission, and that is to be united against Parkinson’s,” said Ibrahim who leads the foundation and is a Parkinson’s patient himself. “Here in the UAE, we believe in empowering people of different generations and that includes empowering people of determination.”
The missing element to finding the right medical facilities and institutions that specialise in treating Parkinson’s patients is the lack of awareness in the region, he added. It is not only the affected individual dealing with the disease on an emotional and mental level but also the entire family. I connected with his situation when my family and I too were left desperate to find the right medical institution. My grandfather had to deal with different opinions from various doctors and a huge delay in diagnosis and treatment, just the way Ibrahim and other patients who were present at the event suffered. As we are a middle-class family, we do not have abundant facilities to turn to immediately.
Five things came to my mind once I spoke to Ibrahim – why is there no diagnosis on time? Why aren’t advanced treatments available for hardworking families in the UAE? Are we on the right track like other developed countries successfully treating Parkinson’s disease? Or is it available but there’s no awareness? And what can I do as a caregiver to bring awareness to my fellow UAE Parkinson’s caregivers and patients?
Firstly, I interviewed a few patients, caregivers and specialists to learn more. It was a privilege to meet specialists from King’s College Hospital, both the Dubai and London teams, as well as Parkinson’s specialists from Mohammed Bin Rashid University, and of course Ibrahim.
For anyone unsure about Parkinson’s disease, its classic motor symptoms range from noticeable physical tremors, stiffness, slowing of movement, or the face may show little or no expression.
Parkinson’s disease may seem like the end of the road for patients but Prof. Chaudhuri explains: “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.”
Two of Dr Metta’s patients shared their journey to recovery with KCH at Walk for Parkinson’s. Jeffrey, a 73-year-old Australian patient, advised other Parkinson’s patients and carers to not give up hope. “I truly commend King’s College Hospital as a patient who has been greatly cared for. I felt hopeless until I met Dr Metta, Prof. Chaudhuri, Dr Chung Faye, and the entire KCH medical team in London.”
Amal Lari, an Emirati carer, shared her concerns and the joy her whole family found once her mother was taken under KCH’s wings. “My mother was suffering terribly due to suspended movement but thanks to Dr Metta, the right treatment subsided her condition to the minimum,” she said. “My message to all Parkinson’s patients, potential ones too, is to have hope, exercise, share your thoughts, and stay patient.”
At another Parkinson’s monthly event in the UAE, Parkinson’s Patient Majlis, that I attended recently to my surprise there were more carers asking questions on behalf of their loved ones inflicted with Parkinson’s. Barrad talked about his grandmother who has been a Parkinson’s patient for the past 20 years and had suffered due to wrong medication. Director of Dubai Medical Tourism and Dubai Health Authority Mohammed Al Mehri’s late father was a Parkinson’s patient. “My father was misdiagnosed and mistreated as well and that was before I became the Director of Dubai Medical Tourism and Dubai Health Authority,” he said. “He got Parkinson’s at a very early age, so I watched him live with this disease. It’s such a hard thing for patients to normally live their lives with this disease.”
There’s a common pattern in the families caring for members with Parkinson’s disease –unawareness of the treatment available in the region, rejection, misdiagnosis or mistreatment, and loneliness. However, strong medical institutions like KCH and Parkinson’s Foundation UAE are actively lending a hand to those suffering in this situation.
“Parkinson’s is a disease that requires multidisciplinary care and not just one,” stresses Ibrahim. “It requires a whole team, which specialises in Parkinson’s. Time has gone when doctors just prescribed medicine that are available at a local pharmacy and then go home. That’s not what we aim for. We need more. I want the suffering to stop.”
Highly skilled Parkinson’s specialists and medical facilities are available now with government support, but there is another vital element to aiding Parkinson’s patients and their families, which are Parkinson’s Disease Nurse Specialists (PDNS). 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. I had the opportunity to speak to PDNS from KCH Dubai, Kislyn Rodriguez, and her thoughts on why PDNS are a necessity for all Parkinson’s patients and carers.
“As a PDNS, we provide expert care and 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 and advanced devices-aided therapies,” says Kislyn. “We are involved with our patient’s care from the start of their diagnosis throughout their journey with Parkinson’s disease.” Support for patients and carers in a clinical setting or at home is available via the telephone support line that they have access to 24/7. Having a dedicated PDNS 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 mentions that PDNS ensures continuity of care and emotional support to 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 needed by our patients at any time,” explains Kislyn.
The most distinguishing thing about KCH and its medical team is its academic and practical research. “Care and research are integrally linked together,” says Prof. Chaudhuri. “Hospitals that do research and provide care are proven to have better patient results.”
Anil Dhawan, Professor of Paediatric Hepatology at King’s College London Hospital, highlights the institute’s road to excellence globally. “We don’t believe in competition because competition brings boundaries,” he says. “We believe in innovation and bringing safe and well-tested treatments to patients. Teams at KCH provide multidisciplinary care to patients in the right way. Our dream was to bring the same safe and high quality of healthcare as in the UK to the rest of the world.”
The KCH doctors are positive about the medication and diagnosis they provide as they’ve seen their patients become active, working and carrying on with their daily lives.
Dr Metta and Prof. Chaudhuri are working on a research paper to discover if there is a genetic reason for the occurrence of Parkinson’s disease among Emiratis or in this part of the world.
Additionally, KCH Dubai will set up an innovative project that focuses on bio banking, reimagined to be a medical library where biological specimens, especially blood, are stored for studying different diseases. “Information allows biomedical scientists to analyse genetic origins of diseases,” says Tom Loney, Epidemiologist. “Establishing a biobank will allow us to come up with solutions for genetic origins of diseases in different ethnic groups.”
I am inspired by patients’ and caregivers’ stories shared at these events and their joy in finding life-changing treatment. All of this is possible with Ibrahim’s vision. “The UAE is a country where impossible is nothing,” he says. “The wise leadership of the UAE has taught us that we do not need to settle for anything less than number one. If others can, then why can’t we?”
The Dubai Police, Dubai Ambulance and Dubai Municipality are all equally involved in providing support by helping KCH and Parkinson’s Foundation UAE collect data for the first-of-its-kind study in the UAE. I strongly believe in the rulers’ vision and mission of empowering people of different ages, generations, and people of determination.
As Dr Metta points out, “Hospitals and doctors need to step up and spread awareness. They should show commitment to discuss issues concerning Parkinson’s patients and involve more people.”
I hope every hospital across the UAE will recognise and bring awareness to implement novel therapies, which will help patients face the condition with a smile.
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