Just Parkinson's

Just Parkinson's
Parkinson's disease patients can't control when they are 'on' (functional) or 'off'. So it's up to us to ensure we're 'on' all the time as caring members of scoiety.

YOU could call dopamine the brain chemical of dance. You also need it to drive and control your dribbling, both on a football pitch and off it. For dopamine's key role is to coordinate smooth muscle movement and balance throughout the body.
It does this by transmitting signals between neurons, or nerve cells, in the brain. In other words, it is a neurotransmitter. When the nerve cells that produce dopamine in the brain degenerate, as occurs in Parkinson's dis- ease (PD), dropping dopamine levels cause neurons and muscles to lose touch with one another.
This lack of communication causes the slow, uncontrolled muscle movement, tremors, rigidity and lack of balance typically seen in People with Parkinson's (PWPs). Other symptoms include fatigue, loss of facial expression, difficulty swallowing, drooling, speech problems, cognitive changes, depression, sleep disturbances, cramping, constipation, urinary problems, and sexual dysfunction. On top of these problems, caring for PWPs is especially challenging as:

  • There is no known cause or cure for PD, only treatment - fortunately, there are many effective options available nationwide.
  • The disease progresses slowly- a PWP may live for between 10 and 20 years following disease onset, and symptoms will worsen with time.
  • PWPs are typically (but not exclusively) elderly - the average age of onset is 60, but onset before age 40 occurs in between five and 10% of patients.

One such early-onset case is that of Pandirajan Subramaniam from Pasir Gudang, Johor, who has had PD since he was 32. Last Saturday, the 43-year-old became the first beneficiary of the Lloyd Tan Trust Fund, receiving RM40,800 to help pay for a Deep Brain Stimulation (DBS) surgical procedure (the cost of surgery begins at RMS0,000 initially with necesary follow-ups every two to three years costing RM60,000 more each time).
DBS surgery involves the implantation of a sort of pacemaker for the brain, where abat- tery pack in the chest supplies electricity to a wire buried "deep" in the brain. This stimulus counteracts abnormal neuron function.
DBS is the last line of treatment for patients with advanced PD like Pandirajan, whose medication is no longer effective due to long- term use and where the chances of regaining prolonged quality of life are high.
For the fortunate Pandirajan, the procedure should alieviate his phsyical symptoms and allow him to function relatively independently. More importantly, it will give his family welcome respite from constant caregiving. The remaining 15,000 to 20,000 PWPs in Malaysia and their caregivers should be so lucky.

Heavy care, heavy cares
As yet, there is no national registry for PD in Malaysia, let alone a comprehensive picture of their caregivers. However, at least in the US, the 1997 US National Family Caregivers Association Caregiver Member Survey pro- vides a snapshot:
* Two out of five caregivers provide round-the-clock care
* Three out of five spend the most time on activities of daily living (feeding, dressing, toi- leting etc)
* Three out of five are over 50
* Four out of five are female
* Four out of five provide care at home (Note: most of the caregivers surveyed provided intensive care for five years or more for patients with any chronic illness or disability, not just PD.)
Shahnaz Abdullah (66) fits this picture perfectly. Her husband, Niamat Ali Raunkee (68) was diagnosed with PD in 1994. Since then, she has been his primary caregiver, and physical and psychological pillar of support.
"When he first knew he had Parkinson's, he took it very badly because he used to be so active and independent. He felt his whole world was crumbling. We had to give him a lot of encouragement, tell him that he is still ok and he can continue doing whatever he likes to do," she says.
One of those things was football. Niamat was at one time Treasurer of the Football Association of Selangor and used to coach the association's youth teams (bringing them to MSSM-Ievel championships). This had to stop when his PD progressed.
Both their children worry constantly about the health of their father, and mother. These days, Shahnaz falls ill more frequently and takes longer to recover due to stress, a lack'of rest and the physical demands of caring for her husband, according to her son, S.
"When they were working, they made a lot of effort tO make sure they looked after us themselves," says S. ,'After they retired, it's not like she could take it easy."
Like most PWPs, Niamat finds it difficult to bend his arms and legs due to muscle stiffness and often requires help getting up from a sitting or sleeping position, getting in and out of cars, and moving while in these positions.
"If the caregiver is female and the Parkinson's patient is male, like with my parents, it's very difficult for her to lift his body," says S. "For me it's ok, I have the strength to lift my dad up. But when I'm not around, my mom has to. She's so tired and so weak doing this but she just takes it in her stride.
"Out of all the people I know, she is the most selfless. She keeps doing it all day -'turn me this side, I'm not comfortable, I cannot breathe'- turning him, left right, up, down."
Mrs Tung, a petite lady like Shahnaz, faces the same daunting physical challenges in caring for her husband, Steven (54).
"At night, he cannot turn his body to the normal sleeping position," she says. "When he lies down on the bed, he cannot lie down just like that. He'll sit on the bed, then I have to lift up his legs. So heavy! Then he sits like a statue. When you push his back, he'll lie down straight, but he can't turn his body left or right, so I have to do the turning for him. So thewhole night l'm doing all this. I need a lot of strength to turn him and I don't have enough sleep. I always have interrupted sleep (and) it's so tiring.
"Sometimes it takes half an hour to one hour just to lie down or get up from the bed. And I'm working you know, so I need to be punctual. Luckily I walk to work, so sometimes I have to walk very fast just in order to punch the card."

Doubly trapped
Many patients with Parkinson's disease (PWPs) feel trapped by their loss of physical control (while they remain mentally alert) and by the cold stares of ignorant passers-by. Their caregivers, too, often feel angry and dis- mayed about the latter.
Shahnaz describes one incident: "Once, he went to pay an electric bill (on his own). When his number came, he couldn't get by himself up. When he asked people to help him, just to lift him up, they all Stared. They thought this man looks healthy, why must we help him? They didn't understand that after you lift him up, he can move slowly by himself."
StarTwo entertainment editor Ann Marie Chandy used to bring her late mother, Sosamah (Susie) Chandy who had a drug- resistant form of PD, for walks at Taman Subang Jaya, Though they struggled often to manoeuvre Susie's wheelchair from the car- park into the park, not one person offered to help in the years they went there.
"If we asked, they would help. Nobody has ever said 'no', but nobody ever offered," she says. "People are generally very afraid to approach anybody who is sick."
Susie happened to be a highly motivated and gregarious PWP, and would insist on braving the rude stares that came her way
when she went out for walks, visited a shop- ping centre, or travelled.
"People would stare and stare and wonder why a person who needs so much help would want to come out, but she did it all," recalls Ann Marie.
On the subject of stares, Niamat's son is vehement: "People look at him like he's a freak, especially in Asia. In the West, they know if people are walking like that, they have some sort of illness and it's rude to stare. But Asians tend to look at you, stare at you. And that makes a patient feel even worse. When I'mwith him, I tell him to just ignore them.
"Like my morn said, sometimes he just needs a pull to get up. One guy said 'I'm sorry, I'm from Sabah, I cannot do that.' What, you're from Sabah, or you're from another race, your culture prohibits you from helping someone else? That, I cannot get. This really happened."

'On' and 'Off'
Part of the reason the public finds it hard to understand PWPs are ill is because they see them when they're "on". That is, when their last dose of medication is still effective and they are functional. Niamat, for example, takes three different PD medications seven times a day and can walk on his own about two hours after each dose. When the medication wears off,.he also goes "off", and requires assistance.
For Steven, the effects are shorter, and he has to take 10 doses a day. When he's "on", he strides around happily. When he's "off", he sits stooped in his wheelchair, unable to move or speak.
"Compared with before, the 'on' periods have become shorter while the 'off periods seem to last longer. In fact, over the past one year, I have been 'off most of the time," he says.
It's a sad truth that PWPs are not be able to control when they go "on" and "off'. But that just means it's up to all the other PWPs out there - People Without Parkinson's - to ensure they're "on" all the time as caring members of society.

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