The face of the moon was in shadow
Not many of us know about this brain disorder - or are aware of what it is. But that’s not to say this condition isn’t common. According to reports by Global News Canada, Parkinson’s has doubled in Canada in the past 25 years. And it is all set again to double in number by the end of 2040.
Though we might have very little awareness of it, did you know it is the fastest-growing neurological brain disorder in the world?
Data by Parkinson.org says that in Canada alone, more than 100,000 people live with this condition. Yes, getting detected with this condition might be life-altering for a patient and the patient's caregivers. But, there is still hope to live a healthy and respectable life if we come together to raise awareness about it.
Without proper awareness, it leads to patients suffering from further mental health issues and aggravates their conditions, and makes everyday living even worse. Coming together as a community and helping people talk more openly is the best way forward.
Though Parkison’s awareness month lies in April, we cannot bind ourselves to a month of awareness when people spend a lifetime with this condition. We have to make it an everyday thing to help others with our awareness, compassion, and empathy. Read our piece to find everything there is to know about this brain disorder and how you can do your part in helping fellow Canadians suffering from Parkinson’s.
Understanding Parkinson’s
The reason for the sudden growth and rising cases of this condition is still unknown. But this brain disorder shows visible signs of change in the human body, which can lead to judgment and biases in society and be hard for people to live with. When one is diagnosed with Parkinson’s, they become aware, but that is not enough. We need to become aware as a community to help each other.
What is Parkinson’s?
Parkinson’s brain disorder is caused by a sudden or slow loss in some nerve cells in the brain, in a part of the brain called the substantia nigra. This part of the brain and its nerve cells are responsible for producing a vital chemical called dopamine.
This chemical functions as a carrier and stimulator of human body movements. When these nerve cells are damaged, the dopamine secretion reduces and hampers the locomotive functions of the human body. Regular body movements start to take a backseat and can become a real issue to go on with your daily life once affected by this brain disorder.
What are the symptoms?
So how do you be aware of it? Understand the symptoms but do not let the symptoms let you crowd your judgment to create biases against patients. You need to understand them and become more empathetic towards anybody you see who is showing these symptoms.
Tremors usually start with the hands and legs
Slower body movement
Rigidity in general mobility of the body
General loss of control over body posture
Beyond the physical symptoms, the shame and stigma associated with it can lead to many mental health issues in patients. Detection of this brain disorder can be a very sudden change for a regular and active human. Imagine how they feel when the world suddenly starts seeing them as patients and forgets to treat them like humans? This can lead to them suffering from severe depression and anxiety issues, worsening their quality of life.
What are its treatments?
Though research has been on for decades, sadly, like many other neurological disorders and diseases, Parkinson’s does not have any complete cure. This brain condition has an official onset, and symptoms start showing when more than 80% of the nerve cells in the substantia nigra are already damaged. This makes finding a cure or researching a cure even harder.
But everything is not so grim; there are many symptomatic treatments and drugs to help patients deal with the tremors and mobility issues. Without these regular medications, your loved ones' functioning might completely stop. So you need to update yourself about it and talk to doctors, do your own research and get them the best aid and medicines possible to minimize the symptoms.
This is the best and only way to give them a life of dignity and respect. Patients should also start therapy and join support groups to deal with the sudden mental burden of this condition. This will help them deal and live with it better and make them feel like a part of a community rather than dealing with it all alone.
The Stigma around the Progressive Nervous System Disorder
Imagine this, you go out to do your typical daily jobs, and your hands start shaking, and you become conscious of your movements. This is the everyday life of a Parkinson’s patient.
The added stigma of this is that the world thinks when your hands and legs tremor, your intellectual side also suffers. Battling societal stigma is difficult too.
Spread the word
Like World Health Organization (WHO) is hosting an event to launch their webinar and Parkinson’s awareness program in Canada this 14th of June. It is titled “Parkinson Disease: a public health approach,” and it hopes to raise awareness about handling this condition and its lack of prevention, how to prevent it, its treatment and strengthening people to live with it. They also want these webinars and meetings to strengthen countries in handling this fastest-growing neurological disorder which is hugely impacting the healthcare systems. The organizers believe that only interdisciplinary care can help in solving this global crisis and lead us closer to care. Reading up about Parkinson’s is important, but bringing this topic into the general conversation is also equally vital, and such talks and discussions can help pave the way.
Even people who are not affected by this condition directly or indirectly need to know about it to make patients feel normal and comfortable in their skin. Their lives are already pretty hard; why not do your bit to make it a little less challenging?
Canada’s guidelines on Parkinson’s
There are many technical guidelines for Parkinson’s by the WHO; you can check them out for a holistic understanding of the condition. But there are also some detailed Canadian guidelines on the same. What are they?
Open communication
It is essential that patients are given the freedom to choose their care, and they are allowed to talk about the practical and everyday problems they face. Do not try to help patients solely based on your online research; talk to them directly to get a better picture.
Official diagnosis
According to Canadian rules, you should not suspect everybody with tremors as a Parkinson’s patient. Everybody needs an official medical diagnosis to reach this conclusion.
Treatment and care
Patients need treatment and compassionate care to lead their lives typically and not feel added pressure from society. Beyond that, exercises are a must to help better their ordinary motor skills and slow down the progress of this nervous system disorder.
Caring for someone with Parkinson’s
When one family member is affected by Parkinson’s, the whole family lives with it. Caregiving is a daily task and can take a toll on the caregivers as well. Seeing your loved ones slowly deteriorate and struggling with life's basics when they were fit and refined a few months back can be a real challenge.
There is no shame in accepting that caregiving can be overwhelming; you can simplify it by hiring a professional caregiver who is trained to handle Parkinson’s patients. If you plan to do it yourself, you can look for a support group for caregivers to help your own mental health and not succumb to this pressure.
Raising awareness with positivity
Opening a dialogue about Parkinson’s is vital; it is equally vital to look at people living with it and people doing their part in raising general awareness about it. It will help motivate you to a path of positivity despite all the dark and intense aspects of the condition. Here’s a closer look.
54-year-old Mark Hogben becomes a TikTok star and lives in his own wood cabin in Quebec. He has millions of followers who have taken inspiration from his way of life and his zeal to make the most of life even when he is affected by Parkinson’s. Unlike regular TikTok stars, he does not make viral dance videos; he makes mundane everyday work videos to inspire fellow Parkinson’s patients.
In Waterloo, Dejero has started this campaign where they will support three cyclists in a cross-Canada journey to raise awareness about Parkinson’s and raise money for patients. They are all set to raise at least $200,000 CAD and help patients in need and provide for their aids. They will live-stream the event on their YouTube channel with GoPro cameras attached to their bikes while they go on this adventurous journey. They will cycle for over 93 miles, 6 days a week and raise the money to help Parkinson’s disease.
Parkinson Canada is holding a SuperWalk event in September to raise more than $1,500,000 CAD. You can choose to participate in this event from any location and donate as much or as little as you can. Every penny you donate will be invested towards the cause of Parkinson’s and to help patients and their aid at every stage of it. This money will also sponsor research to advance the cure for Parkinson’s and increase the advocacy about this disease that is affecting so many Canadian lives.
Such inspiring stories and big brands joining hands with people to make a positive change is an excellent start to beating this condition and getting closer to finding a cure. Finding such stories and making patients interact with them is a necessary change to help them live everyday life.
Parting Thoughts
Is your loved one who has Parkinson’s? Do you have sleepless nights over their worsening conditions? We have a ray of hope for you. Right here in Toronto, they have started the first clinical trial of Parkinson’s treatment.
Though it is still in the early stages, a lot of hope is attached to it. It is time you hold your hearts and wait for the breakthrough. Until then, provide the patients with the utmost compassion and empathy and raise your own awareness with books, articles, podcasts, and such to take better care of them.
Here’s to a better tomorrow!