It’s one of our worst nightmares- being diagnosed with a chronic, disabling condition. We wonder what to tell someone who is suffering from one and what best we can do for that person. Millions of people in India and worldwide suffer from this condition which severely affects the quality of life of patients and caregivers. The ratio of the number of patients and caregivers who need our attention is much lesser than the number of healthcare professionals dedicated to serving patients with these special needs. Here’s how you can help us:
You know exactly how it is to deal with a diagnosis, how difficult it is to do your routine tasks, how able you are to communicate to others and how frustrating it is when people stigmatize you. There is no one better to break this communication barrier. Parkinson’s is a lesser known condition than Alzheimer’s, diabetes, stroke or heart conditions. One reason is because we who suffer shy away from talking about it and add to the stigma associated with the condition. Here are some ways in which you can make a difference:
- Many of us find it difficult to pronounce the word Parkinson’s. Let us break the word so that we can say it clearly- “Par” (rhymes with ‘car’), “kin” (rhymes with ‘in’) and “son” (rhymes with ‘sun’). Make sure that the person you are talking to is able to pronounce it like you. It is important that you say this word clearly so that the other person registers it. This is the name of the person who founded the disease. It is important to remember this because often when the information spreads it gets altered and our goal is to make the name of the disease known and common.
- When you talk to someone about your Parkinson’s, try not to mention the word ‘disease.’ It has a negative connotation in India and people consider it to be something that is very serious and unmanageable. Just like we say ‘high blood pressure/ hypertension’, ‘cancer’, and ‘diabetes’, only say the name PARKINSON’S loudly and clearly.
- When someone asks us about our difficulties, sometimes we don’t know where to begin. We can usually start by saying, “This is called PARKINSON’S. He/she has difficulty with simple activities like walking, having a bath, writing, balance, speaking and doing daily things like wearing his clothes, buttoning etc. This is a brain related problem related to movement. It is quite common in older people and I know many people with this problem. A neurologist, (specialist in disorders of the brain) can help in identifying this problem.”
- Other people need to know that it affects your daily activities and movement, that it is common and that a specialist called a neurologist will help.
- If you are unable to communicate this due to your own difficulties, you can have a small card or a sheet with this information in a language of your preference.
- If there is any further conversation and if they need additional guidance, they can be directed to visit their general physician or to our team member. You could contact us at our helpline 022-4944477 or write to us firstname.lastname@example.org.
- You may get an opportunity to tell people in this manner at social functions, doctor visits, while travelling and when with your family and friends.
The emotional suffering and difficulties you face in daily life need to be communicated to lay people. Normalizing the Parkinson’s is your job!
If you tell one person every day, wherever you meet them, its 30 people in a month and 365 people in a year!
Early diagnosis and care can improve their quality of life significantly.
Many PwPs have children abroad or living away from them and some have children living with them. They play a crucial role in care-giving and have many difficulties of their own. Here are some ways in which they could help:
- Working adults can spread a word about Parkinson’s to their colleagues. Send an e-card to them with our PDMDS logo on it, a sticker, an article about Parkinson’s they read, share our newsletter or just write about your experiences.
- If you use social networking sites, share our Parkinson’s society’s page so that others can see.
- If someone asks them or mentions that they know some patient, you can be the point of contact. You could contact us at our helpline 022-4944477 or write to us at email@example.com.
Some of the caregivers handle many household chores and often go out to buy household items. Use this opportunity to tell the shopkeeper about Parkinson’s.
- You can tell the people in the building, your neighbors and people you see at the park! Remember that many of these people may have seen the patient, but they may not know what exactly the problem is! Sometimes, we feel hesitant to begin a conversation about Parkinson’s because it is a very personal problem and it may be embarrassing. However, if each of us step back each time, we will be missing an important opportunity!
- If some of you are socially active, you’ll can also organize a meeting for your colony members, put up posters and talk to them about how many people you know have this problem and what it exactly is!
There are many more ways in which we can build awareness- through newspaper, radio, short films, music, art, dance etc. Since we all have our many duties to do also, we should make this process simple. We can do so like this:
- Organize yourselves into small groups that may be interested in doing a specific type of awareness like putting up a small talk/ function etc. Tell at least one person everyday!
- Communicate that it is common, manageable/ treatable and that there are specialists in Mumbai and in other places in the country.
- Remember that one of the reasons you feel it is embarrassing is because people don’t know exactly what it is and they have many misconceptions. When more people know, more people will support and understand us!