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[back] Different facets Dr. Norlinah Mohamed Ibrahim (The Star) - 06 December 2009

Different facets

Sunday December 6, 2009 - The Sunday Star Newspaper

The various issues associated with Parkinson's disease.

MOST of the time, when treating patients with Parkinson's disease, the focus is mainly on the problems related to movement. However, Parkinson's disease is a disease of many impacts and issues.

For sufferers, its effects, like tremors, slowness of movement, and rigidity, and posture instability, as well as non-motor problems like depression, constipation, dementia, anxiety, sleep disturbances and more will have a negative impact on their quality of life unless controlled by medications.

The cost of treatment can be a burden to those living with Parkinson's, and their family members - AFP

The social impact of the disease is significant. For some, they're embarrassed because they're unable to control their own bodies. For others, there's the frustration of not being able to keep up with friends and, as a result, many choose to withdraw themselves from their previous lives.

Then there are other issues like loss of income, the financial impact of having to pay for medication and treatment, the forced changes to lifestyle, and, most importantly, the impact of those who care for the sufferers i.e. parents, spouses, and relatives.

It's because of these existing issues that there is a need for more awareness of the disease. This is where associations such as the Malaysian Parkinson's Disease Association (MPDA) and the Negeri Sembilan Parkinson's Society (NSPS) play an important role in helping provide the support network needed by Parkinson's patients and their families.

The associations can help alleviate the financial burden for patients with Parkinson's and their families/caregivers through various services offered by them. The Parkinson's disease associations can also look into developing community centres to provide day-care services, meals on wheels, and enhancing other existing activities such as seminars and gatherings to encourage members to interact with other Parkinson's patients and share experiences.

On the government's side, they should consider looking into the Orang Kurang Upaya (OKU) status for Parkinson's disease sufferers, especially in the mid to advanced stages of the disease, which will allow them to get treatment and medication at subsidised prices.

The cost of treatment is a "real" issue. The cost for treating Parkinson's disease is very expensive and as much as government hospitals are tasked with treating all sufferers, even they have limited budgets and can't afford to subsidise the cost of treatment for all patients. The cost of medications can be as high as RM500 to RM800 a month as dosages and the number of medications continue to increase with the advancement of the illness.

Another issue is, newer and better drugs to treat Parkinson's disease are not yet available here. The fact is many of these newer medications will cost a lot and will add up to the already growing tab for medications for the patients and their families. As a result, doctors in Malaysia are left with a limited number of medicines that they can prescribe to treat Parkinson's disease.

Why aren't the drugs coming in?

Sometimes it's because of the high cost of the newer drugs and patients are not able to afford the medications. However, it is essential that these new drugs are brought in, as it allows for better options for doctors when treating patients with Parkinson's disease.

Ultimately, the hope is for a breakthrough drug which can potentially reverse or cure Parkinson's disease.

(Assoc. Prof. Dr. Norlinah Mohamed Ibrahim is the Head of the Neurology Unit at the Universiti Kebangsaan Malaysia Medical Centre (PPUKM), Deputy Head of the Department of Medicine, PPUKM and medical adviser of the Malaysian Parkinson's Disease Association)