The best way to not feel hopeless is to get up and do something. Don’t wait for good things to happen to you. If you go out and make some good things happen, you will fill the world with hope. You will fill yourself with hope just share your responsibilities sincerely.
Parkinson’s is a name which is somewhat new in Nepal. Till a couple of years ago, it was identified by just trembling, that too in the Capital Kathmandu. With initiations of some YOPD awareness, it has now been known in Kathmandu and a few other towns. The hilly and remote areas have not been fortunate of the awareness. The exact number of Parkinson’s disease patients are not known, but the Hospital does show an estimate of 2000 in Kathmandu.
The Capital itself is not fully equipped for Parkinson’s disease patients. There are no Hospitals or Doctors specialized for treating Parkinson’s disease patients. They have to be content with local Neurologists who have their appointment book cramped for up to 2-3 months. When we are living in the capital face such problems, one can imagine the plight of the hilly and remote region patients. Hence, their faith in ‘Shamans’ to get rid of the ‘trembling disease’ is the only alternative. Till the Neurologists are all in the Capital, such treatment by the ‘Shamans’, though irrational and inconclusive will live long.
Meeting the Neurologist is not the last of our problem. They prescribe four drugs (seems like that is the code) Syndopa, Rasalect, Pramipexole and Amantrel, according to the condition of the patient. Of these Syndopa has the monopoly as it is prescribed to all the patients.
Undermining the gravity of this ‘silent killer preceded by uncomfortable infirmity’, our Medical Fraternity has yet to impart due attention and concern towards this ailment. Parkinson’s apparent symptoms are very misleading and social interaction are not aptly conclusive. The slow slurry style of speaking, unbalanced body and trembling of limbs are the initiator of social awkwardness and misinterpretation, resulting to the uneasiness for the patients. Many receive an accusing/astonished/questioning glare or even a reprimand. From long waits for appointments to non-availability of drugs to social stigma, it’s a difficult existence for Parkinson’s disease patients. At the time we yearn for the “positive discrimination” imparted to the born “differently able” as even a fraction of it would be a deserving delight to us who face the sickness that makes us different.
Some senior Neuro Surgeons have begun the practice of Deep Brain Surgery in the Capitaland have had some success. But again that too for only those who can afford it and have no other grave medical issues. There is no DBS facility for economically under privileged but needy as it is a costly affair.
I am Munal Subedi, assistance professor, age 38 years and Parkinson was diagnosed five years back. In my present condition, the effect of the medicine wears off in 2 hours, and I suffer acute stiffness in the right hand and uncontrollable tremor in the right leg. It has made daily life very difficult for me, but I still pull up myself mentally and ride a scooter to teach at the University. To top it all of it is very difficult for me to write because of my stiff right hand.
I am a motivational speaker, I have learned about this disease very closely, so I have interacted with all most all of our members, encourage them telling not to think about future because future is unpredictable. One day a medicine might be discovered from one corner of the world. The thing we need is perseverance with exercise because exercise is indispensable for PD patients.
It helps to make slow down the progress of the disease.
To support PD patients and create awareness. Our organization – Nepalese Parkinson Disease Association, was formed by some doctors, patients, and caregivers to help and alleviate the quality of living. Though just established we are proud members of World Parkinson Coalition.
Bearing all this in mind, I with other Parkinson’s disease established organization Nepalese Parkinson Disease Association, NePDA (which is just a year and a half old) has organized eight different programs focusing on bringing awareness into the Parkinson’s family. Undeterred by the setbacks we are receiving the good response and massive success in bringing about awareness which is significantly visible in Parkinson’s community in Nepal. NePDA with the help and contributions from within, friends and generous donors have setup a Fitness Centre for patients in Kathmandu. This has brought about tremendous relief to the patients as a place to be fit and a meeting place to interact among themselves. But this is just the tip of an iceberg there is so much to do to bring about the knowledge of Parkinson’s into the public, starting with the statistical information and the existing state of the patients. But alas having a vision is something but realizing the vision, logistic support and resources are the paramount obstacles.
We have made personal requests to the Neurologists to take an initiative of availing the required drugs. There are persons for e.g. Andy Butler, Parkinson’s adviser UK we have been in touch with to assist in getting supplies of drugs for Parkinson’s people which is in the pipeline.
We are all individuals and have our own individual voices, but by working together as a team towards the same goal, we can make a tremendous voice which we could make on our own. Sometimes we need to co-work together to achieve our goals. We all contribute in different ways, but everyone has something important to contribute. Medical science has not succeeded coming up with a cure for PD, as such strong motivation and support for a better living is highly important for PD patients. We have hope and hope is such a thing thatcan move even a mountain.
No one is going to rescue you no one is going to pave a way for you, you need to determine what happens to you, so many people are miserable where they are because they are waiting to be aided in their quest. No one is coming, get up and go for what you want.
Young Onset Parkinson’s Patient
Nepalese Parkinson Disease Association
(Note: The story of Munal Subedi in his word. Let’s support Munal Subedi)