Advanced therapy, the dilemmas and the road ahead…

DBS – Prayer is ever Powerful

The most advanced surgery to ease PD symptoms, available for more than 20 years now….

DBS or Deep Brain Stimulation is an advanced therapy for Parkinson’s Disease which mostly helps in better control of Motor Symptoms of PD (mainly tremor, Bradykinesia or slowness, stiffness and rigidity). It also helps controlling the break dance like ‘ involuntary movement’ called Dyskinesia induced by the best PD medicine ‘Levodopa’ . Beneficial impact of DBS on non – motor symptoms are not yet scientifically identified. The list of non -motor symptoms an their explanation will run into pages, so they are better kept aside for separate discussion The Levodopa being the gold standard of PD medication loses its effectiveness over relatively smaller periods of use. Doctors say tat the medicine does not actually loses effect, but as the disease progresses even during the time when Levodopa is in use, the brain’s ability to process levodopa into required Dopamine goes down. That said, in a carefully selected patient, DBS can bring down medication by approx. 70%.

Evaluation for Eligibility

The general rule for a patients’ eligibility to undergo DBS is mainly

• He has PD for at least 5 years

• the disease is levodopa responsive.

• There are debilitating motor symptoms

• there is a limitation on dose increase due to Dyskinesia

• There is a disturbing ‘On/Off’ cycle ( sometime medicine effectiveness lasts (ON period) sometime does not (OFF period)

• to quantify by medicine doses – if a patient requires Levodopa/Carbidopa once every 3 -4 hours

The evaluation starts with what is called a ‘levodopa challenge’ where in the Patient stops taking his regular levodopa 10- 12 hours before the test on that the text can be conducted at the completely off period. I stopped my medicine at 12 noon one day before the test, and by 10.30 PM, I was unable to move, stiff to the core, to save me from further complications I had to take a medicine immediately. Such is the dependence of the body on medicine. The challenge is scored on a scale called UPDRS (Unified Parkinson’s Disease Rating Scale) before the medication and after usually a double dose of Levodopa/Carbidopa. The before and after scores are recorded Evaluation.

My Journey through DBS

When Dr. Shivam first suggested me for DBS, I was ready to meet Dr. Tanmoy (both doctors work at CCAD) for counselling. But at the same time, I was convinced I can pull on with medicines for some more years, and did brush aside the idea of having DBS surgery immediately. I thought I can continue with my current status of being in good health for some more years. Thus during the initial talk with Dr. Tanmoy, i had said I would wait for few more years being going under the knife. But the ‘protein effect’ I had one day, shook all my confidence. One that day, I called Dr. Tanmoy and requested for a surgery at the earliest. My considerations for the surgery were the following.

• To start having a better quality of life when it is required and not defer it.

• As levodopa is working better currently, there is some amount of scientific certainty that DBS too will work.

• Not to consider DBS as the last resort, as if levodopa becomes ineffective later so would be be DBS as well.

• I had complete faith in both Dr. Shivam and Dr. Tanmoy. I knew I was in good hands.

• On the neuropsychology evaluation and based on the UPDRS score I was advised for Higher doses of Stalevo which may help defer DBS, but I mentioned the side effects of Entakapone which had started working on me. We agreed for the DBS.

For those of you readers who are initiated to the concept of DBS, let me explain in layman’s term, what it means : the surgery is usually done in 1 to 3 parts ( Dr. Tanmoy does it in tow stages). It involves placing two electrode leads on both sides of the brain either on the STN (Subthalamic Nucleus) or on the GPi (Globous Pallidus Interna), and connecting the leads with 5mm wires to a IPG which is placed below the patient’s collar bone. Once the IPG is Started (after elaborate programming by the Neurologist – Movement disorder specialist) it sends electric pulses to the electrodes who then stop the rouge signals from the brain- which cause motor symptoms.

I was in Mumbai during April 2022, where I went to meet Sachi, an old friend. I consider that be the turning point. As we discussed about the difficulties I was facing and what positive can be done to come out of it, he mentioned of an organization working on remote healing through prayer. He insisted I enroll with them for the prayer immediately. I did and there was one more condition which to believe and maintain positivity. In such situations, when one is enduring physical pain day in and day out, remaining positive becomes difficult. One tends to become skeptical. We consciously decided to be positive.

Dr. Tanmoy explained us the procedure an also the risks involved. They finally fixed the dates for surgery. Sachi, my friend said he too will pray for me and also many more – friends and well wishers did pray for me.

The surgery was in two phases. 1st surgery, where the left lead was to be placed in the brain was scheduled on 5th July. I was not wee bit worried. No negative thoughts. I was taken to the OT around 7.30 AM. Around 8 AM, when the Anesthetist told me to have good thoughts and that I will go to sleep, I started saying prayers of Lord Jagannath. I woke up in between the surgery for responding to the Neurologist’s tests and again went to sleep. I was out by 4PM, all being well. feeling very normal

The 2nd surgery was planned on the 15th, this time for placement of the right lead and the pacemaker. This time too I was not worried, calm and positive. I came out of the OT by around 4PM.

It is the power of positive energy and the prayers, I strongly believe, helped me to sail through. Being positive is the key. While I do my best to remain and act positive, we must all try to be Positive both in thought an action, Have Faith, believe in the magics of prayer , pray for ourselves and others in need. Be forgiving and ask for forgiveness. Yes Asking for forgiveness, got me my friend back. Every words spoken must have positive connotations.