The ‘tremors’ that come with advancing age
ONE health problem that usually comes with advancing age is Parkinson’s Disease — although it can also strike young people.
Parkinson’s Disease or PD is a condition for which there is no definitive cure – at least for the moment.
It usually affects control of the movements of the limbs, causing rigidity or stiffness to the hands and legs, slowing down bodily movements and impairing balancing and coordination.
Tremors to the face and jaws are not uncommon.
The cause of this disease has yet to be fully understood but what makes it more horrible is that it can only get worse over time.
Although there is no known cure for PD, there are some treatment options such as medication and surgery to manage its symptoms.
Support groups can help the patient (and family) interact with individuals having the same diagnosis.
Although family members, care-givers and even friends can be the patient’s best allies, empathy and understanding from people who know what the sufferer is going through can be especially helpful.
PD patients and their families can learn more about the disease and help one another by joining a support group through which to reassure, encourage and even inspire each another to face their situation with a positive frame of mind and optimism – instead of a defeatist attitude.
Indeed, such is the rationale behind the formation of the Kuching Parkinson’s Disease (PD) Support Group in June 2015 -- with the help of the Neurology Department of Sarawak General Hospital (SGH).
Founded by Mary Lu, a retired SGH nurse, and a PD patient herself, the Support Group aims to provide educational and emotional support services to PD sufferers as well as their caregivers and families so that they come together as a self-help group to share knowledge on how to fight the disease and support one another to live better.
Lu has devoted her time and resources to helping PD patients, including offering her own house as a venue for them to meet once a month with support from volunteer health care providers.
Activities at such a gathering include tai chi, physiotherapy, fall-prevention exercises and lectures on medication.
Sharing her own experience, Lu said she was diagnosed with PD in 2001. Initially, she felt extremely depressed and self-conscious.
She was ashamed of herself and avoided people. She also experienced “unspeakable anxiety and pain” and frequently punished herself with selfimposed isolation. First sign She first noticed something was not quite right when she started having difficulties maintaining her balance while dressing up.
“From my own experience, Parkinson’s Disease is a nightmare I wished I could wake up from. I remember having to struggle with simple tasks like putting on my pants and even getting up from the couch,” she said.
Her understanding of how PD patients feel has driven her to do something to alleviate their suffering.
“Don’t to feel life has come to an end. You can still live a fairly normal life except it takes a bit longer to do things,” she added.
To help sufferers break free from especially the anguish of loneliness and isolation, she advised them to come together and socialise as a group.
“None of you should face the attack of an enemy alone. We can come together to fight the enemy. We must not let ourselves be defeated. There’s a lot we can do together to strengthen ourselves and get on with life.”
Another important consideration that prompted her to form the Support Group was that she did not want to see family members or care-takers of
From my own experience, Parkinson’s Disease is a nightmare I wished I could wake up from. I remember having to struggle with simple tasks like putting on my pants and even getting up from the couch. — Mary Lu, Kuching Parkinson’s Disease (PD) Support Group founder
PD patients dragged deeper into hardships “which are not really unavoidable.”
She believed patients could do a lot to help themselves and lighten the burden of their minders. Holistic approach On the more technical aspects of care requirements, Lu said managing patients with Parkinson’s Disease not only needed optimisation of medical therapy but also a multidisciplinary and holistic approach targetting other non-medical domains.
That’s where Rehab Concept comes into play. It is the name of a rehab centre at Jalan Laksamana Cheng Ho that is providing free group therapy for PD patients once every two months.
The therapy, called PWR! Moves, is a community project to support Lu’s PD support group, and other PD patients out there.
According to senior physiotherapist Easter Sim, a certified practitioner for Parkinson Wellness Recovery (PWR! Moves) Programme, Rehab Concept was incepted in 2010 by Dr Becky Farley, using research-based neuroplasticity principles to implement a PDspecific management regime.
PWR! Moves is designed to improve the lives of people with Parkinson Disease. Based on the Parkinson Wellness Recovery (PWR) and Exercise4BrainChange curricula, the programme focuses on improving physical and brain functionality to help PD patients get better and stay better longer.
The Exercise4BrainChange framework is founded on clinical researches in motor control, motor learning and exercise physiology.
This model integrates multiple research findings and the latest European Physiotherapy Guidelines into a single formulation of how to exercise in order to optimise brain health (neuroprotection), brain change (neuroplasticity), and function.
Sim felt that engaging people with PD via a support group and group therapy was a good platform to not only motivate them but also to learn how the PWR! Moves programme helps them. Different groups She pointed out that a PD patients group was different from other patients groups such as for stroke and cancer where the patients actively go for help and do not mind telling people openly about their condition. Exposure is very importrant. “We find that PD patients keep to themselves … they hide it, they don’t tell people. By the time they come to us, most are already in a well-advanced stage where everybody can see there is something wrong with them.
“The main objectives of our community project are to promote self-management of their condition by patients and their families that is consistent with the best medical advice, and to facilitate the provision of suitable professional help and advice to patients and their families,” Sim explained.
She said it was best when the PWR! Moves programme commenced at diagnosis and continued for life, adding that with early intervention and ongoing programming, patients could get better and stay better.
“Their efforts may trigger positive brain changes (neuroplasticity) that are disease modifying and thereby, contribute to slowing the disease progression.”
She felt that the community project was important because PD patients groups, compared to other patients groups, actually lacked support – consistent and continuous support.
“The community project can, thus, provide a place for them to come to and learn that there are ways to live better.” Positive and patient Sim stressed it was very important for sufferers to be positive and patient and not let depression get in the way.
“The disease may not be treatable but it can be controlled. With the right treatments and by making some adjustments to daily life, people with PD casn lead fulfilled lives.”
She said staying active was important for the body to cope with the disease in the best way, adding that physiotherapists like her could develop a personalised exercise plan to help with body movements and ease stiffness.
“Exercise, physiotherapy and some other supportive treatments play important roles in slowing down the disease and can help patients to be independent.”
According to her, Parkinson’s Disease occurs when dopamine (neurotransmitter in the brain) levels decrease.
It’s a neuro-degenerative disease, causing a person to appear slow in movement, experience tremors at rest and stiffness of body.
It also affects the digestive and urogenital systems, sleep, memory and cognitive function as the disease progresses.
Among the motor symptoms normally present in Parkinson’s patients are tremors, slow movement, imbalance, decreased arm swing when walking, shuffling gait, masked face, stooped posture and rigidity.
She stressed why PD occurred and how the neurons became impaired is not known.
Both Sim and Lu noted there is considerable controversy surrounding the possibility of a genetic or familial cause of Parkinson’s Disease.
But a vast majority of people with the disease do not have family members or relatives with the same condition.
PWR! Moves sessions will be conducted every two months on the second Saturday of the month. The first session is scheduled on Feb 18 from 2pm to 3.30pm.
The other sessions will be held on April 8, June 10, August 12, October 14 and December 9.
Lu’s support group can be reached at 016-895 1877 while Rehab Concept at 082-236 354.
Sim is appealing to potential participants of the free programme to register with Rehab Concept in advance, and to respect the privacy of the PD patients and their family members by not taking any photo during the sessions and sharing them on social media.