Do you remember that old Mickey Mouse cartoon where Mickey, Donald, and Goofy end up in a giant’s castle and Goofy falls into the Jello on the dinner table? It was so funny to watch him struggle to get out of the gelatin, moving so slowly and getting very frustrated. Well, that’s what Parkinson feels like to me sometimes… is it really funny? Not so much!
What is Parkinson’s disease?
Parkinson’s disease is a disorder of the brain that usually affects the old age. In this disease, certain brain cells die resulting in a decrease in Dopamine (a chemical in the brain that helps in transmission of information between the cells). The person affected usually has slow movements, dull expressionless face, tremors of hands and stooping posture.
How does it feel to be a Parkinson’s patient?
If you ask the above question to a Parkinson’s patient he may not elicit a response and you end up capturing an emotionless face which doesn’t even change expressions. You probably want to say ”Don’t make faces!! It probably will freeze that way!!” But the fact is his face has already frozen in time and he can’t express the thoughts with much dexterity and worse so, if he tries to answer you back he may not be able to do so and only saliva will dribble from mouth sometimes forming bubbles.
How common is this disease?
According to the Parkinson’s disease Foundation, Parkinson’s disease affects more than 4 million people worldwide. Men develop the disease slightly more often than women. The age of onset is usually over 60, but it is estimated that one in ten patients are diagnosed before the age of 50. It is more common in older people. It is not contagious i.e. it cannot spread from one person to another.
In India, though the overall prevalence is low, but in one of the communities, the prevalence of Parkinson’s disease is around 328 per 100,000 which is quite high. As part of their religion, they burn Aspand seeds to rid their children of the Evil Eye and the fumes are often inhaled. These fumes contain chemicals called harmine and harmaline. These chemicals disturb the metabolism of dopamine and hence may cause the high prevalence of Parkinson’s disease amongst them
How to cope with it?
Managing a patient with Parkinson’s disease in the family is not just physical, but more of an emotional, spiritual and intellectual effort. It is really important to understand that Parkinson’s is a chronic disease and you don’t have a choice of “not being a Parkinson’s patient” but surrounding that nonchoice, you have millions of other choices you can make. So look at the choices you can make, as opposed to the choices that have been taken away from you, because, in those choices, there is a whole world of strength and new ways to look at things.
“For everything this disease has taken, something with greater value has been given–sometimes just a marker that points me in a new direction that I might not otherwise have traveled. So, sure, it may be one step forward and two steps back, but after a time with Parkinson’s, I’ve learned that what is important is making that one step count; always looking up”
The disease allows the patient to move freely in the beginning, who believes that he can live well without much disturbance but as the disease progresses, lot of shaking tend to stir up trouble for those things that have always been so easy for the patient. As with the patient himself, the care taker may think that the patient is completely fine but the truth is far from that.
Massive research efforts are on to find a radical cure or treatment. While medications mask some symptoms for a limited period, generally four to eight years, dose-limiting side-effects do occur after time. But some therapies are proven to be of value in improving the quality of life of Parkinson’s patient like:
Body massage: This helps by relaxing the muscles which in turn help the patient loosen up and feel relaxed. This is all the more useful as old patients feel being taken care of.
Acupuncture /Acupressure: In this therapy, certain specific points in the body are stimulated with the help of needles or by applying pressure on them. This may relieve the pain.
Yoga: This helps in improving the tone and flexibility of muscles and also helps in balancing and maintaining the body posture.
Meditation: As Parkinson’s disease is a stressful condition which severely decreases the quality of life for the patient, meditation can help to cope the stress and also to control the mood swings and behavioral problems.
Music therapy: This helps the patient to relax. In some cases, improvement in speech and movements is also noticed.
With therapies already in hand to control the symptoms of Parkinson’s disease and improving the quality of life of such patients, the focus in recent years has been the search for medications that slow the rate at which the disease progresses. One class of drugs that may be effective in this regard is the MAO-B inhibitors.
Other agents, Coenzyme Q10, and creatine are still in clinical trials. In other reassuring news, scientists found that levodopa — which was long suspected of worsening oxidative stress and possibly hastening the progression of PD — may, in fact, slow it down. The challenge of slowing down the progression of Parkinson’s disease is also being addressed by scientists who are interested in exploring the neuroprotective value of physical exercise.
A number of controlled clinical trials have tested new therapies that control but do not slow down symptoms. In general, researchers found a trade-off between the new treatments and levodopa, the gold standard: that is, the drugs that reduced motor fluctuations and dyskinesias (involuntary twisting and writhing movements) were less powerful than levodopa in alleviating Parkinsonian symptoms. One new medication, Rotigotine, a dopamine is administered by a skin patch which gives a long-term relief from the symptoms.
Also, in the last decade, surgical deep brain stimulation (DBS) has been validated as an effective therapy for reducing dyskinesias and motor fluctuations in people who otherwise respond well to levodopa. However, many questions remain unanswered, including optimal timing of surgery and the long-term outcome (more than five years after surgery) of the procedure. Other surgical approaches to therapy, including gene therapy, are now in clinical trials.
These efforts and advances in the treatment of Parkinson’s disease provide new hope to the Parkinson’s patients. We keep the track of these research advances from all over the globe in our constant effort to improve the lives of our patients and to make available to them the best of treatments irrespective of their geographical and physical limitations.
Caregivers and family can play a major role in helping such patients. They need to relive the experience of managing a child. One has to learn to live with the reality rather than curse the destiny.
To conclude we would like to quote the words from Charles dickens:
“No one is useless in this world who lightens the burdens of another”