GOING through any disease is tough, more so when you are older. For those with Parkinson’s Disease (PD), having the right attitude and support can make a big difference.
Sara Lew, president of the Malaysian Parkinson’s Disease Association (MPDA), shares some tips on how to help family members diagnosed with PD.
Lew says it is very important for PD patients to accept the disease so that he or she can start taking charge of their self-care to improve their quality of life.
“Once you accept your condition, you are more likely to accept things around you, because then you would take steps to better yourself or do things. Patients who don’t accept it often would rather stay home and not meet people as they don’t want anyone to see them.
“We have members who accept they have Parkinson’s and because they have accepted it they will go anywhere, and if you want to know about their disease, they will tell you about it. They also have proper management of their disease once they accept it,” says Lew, explaining that in some cases the patient accepts it, but the family doesn’t.
In such instances, the care and support from the family would not be in tandem with the patient’s needs.
Understand the disease
After acceptance, comes understanding. People with PD and their families should read up more about it.
“It’s equally important for the caregivers to understand the condition. In understanding it, you will be able to provide better care to the patient. This is not just important for the family members, but also the community. That’s why awareness is important and that’s where we come in to give talks to youth, universities and the community,” says Lew.
According to her, people with PD have a mask-like expression, which is very easily misinterpreted. “If you don’t understand the disease, you might think the patient is angry or proud. If you understand the disease, then you won’t be easily offended,” she says.
Family support is very important because it lets the PD patient know they are not alone.
“Care, as well as emotional and physical support are very important. Family support is important in addition to overall support. It is important for the family to provide information and to take the patient out,” says Lew.
She explains that because of their postural instability, people with PD tend to fall, so you would need to fit in grab bars in the bathroom in the home and to get a walking frame when they need assistance walking, so that they don’t fall.
According to her, in Malaysia where filial piety is a priority, most families take care of their family member with PD. It is only at the later stage when the PD patient needs more nursing care that he or she would be placed in a nursing home.
“No matter how much you love your family member, sometimes you just can’t take care of them, especially if you are working and the patient’s spouse is elderly and not capable,” says Lew.
Joining a support group is very important because it will remind you that you are not alone and when families and patients come together they can share experiences.
“Sharing experiences is also empowering because you know you are helping others,” says Lew.
PD patients and their family can join MPDA, which has activities, events and outings.
Take the patient out
It’s very important to take PD patients out. In fact, it is important for all senior citizens, whether they are healthy or have any disease or illness, to go out. This gives them a chance to see the world and distract them from their own problems and loneliness. In fact, being cooped up at home can even lead to depression.
Lew adds that because PD is a movement disease, patients tend to shy away from the public as some of them are very conscious of how they move. It can take a PD patient a long time to walk just a few metres.
“Taking them out is very important because they can see the world instead of isolating themselves. That’s one of the reasons why we have a support group – they get to come out of their house and meet people and go on outings. It will also help them avoid depression because spending time with others will distract them from their condition. If you sit down alone and you’re not doing anything, you tend to look inwards,” explains Lew.
According to her, usually in the early stage, many people with PD go through depression, especially if they are in denial or have not yet accepted the disease. She saw it firsthand with her own father.
“With my father, he was depressed in the first few years. Then, one day, he realised that PD was something he had to live with for the rest of his life, so he took steps to join the association to learn more and he started to exercise to delay the onslaught of the condition.
“Some patients think it’s better for them to die. However, when they accept the condition and mix with other people, you can see the change in them,” says Lew, stressing the role played by the community to help PD patients feel welcome.
People with PD eventually might lose their voice, as they have voice problems. “A lot of people think it’s only mobility that is very disabling but communication is equally important. When you can communicate with another person, you are able to convey your fears and wishes or your thoughts, so it’s very important to communicate with them,” says Lew.
Although you can’t be positive all the time because of setbacks, Lew advises carers and family members to try their best.
“Being positive is very important for the PD patient, carer and the family. When you have a positive attitude, you are more inclined to do things. When you start to be negative, you will be down and everybody can sense it.
“If the caregivers are negative, it’s not encouraging to the patient’s wellbeing as the patient can sense it, too,” says Lew.
She informs that the goal for most family members is to manage the condition well and to prevent the patient from rapidly deteriorating and to take the necessary measures for rehabilitation.
“I think, at the end of the day, the family wants the patient to have a good quality of life, to be happy, to have good care and good medication. A good quality of life and good management of the condition is important so that the patient doesn’t suffer so much,” says Lew.
According to her, carers also need a break. If a carer is happy and not too stressed they will take better care of the PD patient.
* Formed in 1994, MPDA offers support through functions and events where the patients and families can meet up. Families and those with PD, can communicate through MPDA’s Facebook page (https://www.facebook.com/pages/Malaysian-Parkinsons-Disease-Association/207738475948217).