An interview with Tincy Binu: A health professional strives to make a difference for Parkinson’s community and Parkinson’s UK on February 3, 2024 by George Ackerman, Ph.D, J.D.
Biography
I am 45 years old, Nurse, mum of two boys (16 and 12 years old), and I live in Cambridgeshire (with my husband and boys) in the UK. Originally, I am from South India (Kerala). I came over to England in 2008 to achieve my dream to be part of the world’s largest health provider, the NHS. I accomplished my dream in 2014 and joined the NHS as a Staff Nurse. Prior to that I was working in a Nursing Home. I graduated in 2000 (J K college of Nursing, Coimbatore, India) and worked in India for seven years (Bethany Medical Centre, Anaikatty, Coimbatore, India) prior to moving to England. Tincy is currently working as a Junior Sister in my favorite Acute Medical Unit of The Queen Elizabeth Hospital, King’s Lynn, UK which is like a second home for me.
Please tell me a little about your diagnosis.
I have been diagnosed with Moderate Early onset Parkinson’s Disease at the age of 41 on 25th September 2019, the day my concept about life has been changed. The initial symptom noticed by me was dragging my right foot. When I went to the doctors, I never thought I was going to receive a diagnosis which would put my life into uncertainty. Being a healthy person, working actively, I never thought about becoming a patient and taking medication. But I finally have to put up with my least favorite area Neurology which is my most favorite area now.
Can you tell me more about how you reacted to your Diagnosis?
Being a Nurse over 20 years, dealt and handled several difficult situations I realized receiving a non-curable chronic Diagnosis is not very easy to handle. I burst out in tears but with support of family, colleagues and friends I managed to move forward. Positivity and optimism are my keys to moving forward. It took me one and a half years to be open about my diagnosis.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is Nursing, I love nursing and I love my job. Now I am very keen to raise awareness about Parkinson’s disease. I am a person from ethnic minority background, a woman with Parkinson’s, a health professional with Parkinson’s i.e., early onset Parkinson’s. There are lots of myths and stigma about Parkinson’s even in this 21st century, even among the health professionals. I wanted to make a difference.
Towards the end of March 2021, I looked through the Parkinson’s UK website to know what their plan for World Parkinson’s Day. Whilst scrolling around I came across the “Get it on Time” campaign and the 2019 report. That opened my eyes! I have realized being a nurse with Parkinson’s I have a calling and duty towards the Parkinson’s community, a real purpose behind my diagnosis. So, at that moment I decided to come out of my hibernation.
How are you involved in Raising awareness about Parkinsons?
I have shared my story in The Parkinson Magazine of Parkinson’s UK. I am a Registered Volunteer and Campaigner of Parkinson’s UK. I am also a member of Parkinson’s UK Research Involvement Steering Group and Race Equality in Research steering Group. I took part in the Patient Participation Involvement council as well.
I am also a member of NHS Professionals living and working with Parkinson’s Group, which is an informal group that also plays a vital role in raising awareness about pd and campaigning for Get it on Time: Time critical medications in conjunction with Excellence Next work of Parkinson’s UK.
I have written articles and poems
Takes part in podcasts and interviews
Uses my social media,
As a health professional with Parkinson’s what difference, you want to make?
Delay in administering Parkinson’s medication on time is a huge problem existing in Hospitals, not only in UK, in other countries as well (USA, Canada, Australia etc.). After my diagnosis only I came to know the importance of administering medication on time. Lack of knowledge among health professionals is a big concern. Myself and group mates from NHS professionals with Parkinson’s working hard to raise awareness in collaboration with Parkinson’s UK. Not only Parkinson’s medications but also critical medications for diabetes, Epilepsy etc.
Time Matters: Its Critical
How can someone get in touch?
tincybinu9@gmail.com
What effect can your advocacy have on an individual with Parkinson’s?
I hope that my advocacy and actions can help other early-onset and young onset people especially women from ethnic minority backgrounds to come forward to involve in research etc. I want to spread the message that there is life after diagnosis.
How can others also become advocates for awareness?
Share their stories. Take part in research (there are researches you can take part from home). Be Kind and supportive to people with Parkinson’s and their families.
Raise funds for Parkinson’s Research
Are you involved in Parkinson’s Research?
I have taken part in research and signed up for more. I have been involved in Parkinson’s Research Needs you campaign of Parkinson’s UK. People from ethnic minority backgrounds are jigsaw pieces in Parkinson’s research. Over 200 years of research proves how complex is this disease.
I have been taken part in walk for Parkinson’s UK challenge to raise funds for Parkinson’s research.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Walking, exercise bike
Being positive
Why should people who don’t have Parkinson’s care about this?
Parkinson’s disease is the fastest growing Neurological condition in the world. It is a non-curable condition even after 207 years of research.
Have you had any family members or relatives affected by Parkinson’s disease?
NOT KNOWINGLY
If you had one song that would tell us more about you or represent your life, which song would it be?
One day at time sweet Jesus
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
To live well with Parkinson’s, you have to be PARKINSON:
Be Positive, Active, Resilient, Kind to yourself, Insightful, Nurturing, Self-confident, Optimistic and Noble