Handling the condition over the years….
the days as they passed may have been tumultuous, but when I look back… I can not stop without thanking God for what he has given me…. Everyone has his own adversities to handle… I had and have mine…..
The Future it had in store…
Initial days were quite dreadful. though the doctor had said I have very very mild symptoms and a very low amount of pramipexole was working, I still had it in my mind that I have to hide it,, from others. There were be bouts of freezing, anxiety and nervousness. As I was hiding it from others, I used to be hesitant to meet people. Making an eye contact was difficult. If a person gave a good stare at me from head to toe, I would immediately get nervous and start shaking. very difficult days those were. But with the medicine, most of the time in a day, I would be normal. the slowness may or may not come daily. and yes I would have balancing problems at time. Sometimes would take extremely long time to wear my shoes, . The doctor I was seeing was very nice. He would be encouraging and would be routine in his examination and dealings. During every visit a few routine checks and a refill prescription. Over the years, the doses increased. from 0.25 mg thrice a day to 1 mg thrice/four times a day, over a period of years. Later, only when I started reading about PD, the medications, side effects of medicines, I realized the potential side effects of pramipexole. The doctor had never cautioned me of these impending side effects and I was too casual read and collect information. Meanwhile, I went and saw few other doctors in India, they too were OK with the medication and confirmed my condition. With higher doses of medicine I started getting ‘sudden sleep attacks’ , they can be anytime, during a meeting in office or while driving (mostly while driving). Sleep attacks could be fatal.
Around that time I started scouting for another neurologist to go to in India. This was mainly due to lack of meaningful communication with my current doctor and also as my family wanted to be sure if this is something else and I am wastefully directing all my attention to PD. I found Dr. Shivam Mittal’s website who was then working in Bangalore. I tried getting his appointment but somehow was not able to. few months later, to my good fortune, we learned that Dr. Shivam had joined a hospital in Abu Dhabi. I took his appointment at the earlier opportunity. My first appointment with him was on 14th Jan., 2020. I got a lot of reassurance and positivity from him at the first meeting itself. Among other things, he warned me and my wife of the possible devastating side effects of pramipexole and also changed the medication to rotigotine ( a dopamine agonist) patches. I used the patches for 5-6 months, but as I was informed before, the use of rotigotine led to cracking lips and itchy skin. So on my own I was changing medicine between rotigotine and pramipexole. On the next meet, Dr. Shivam suggested I move to Levodopa/ Carbidopa (Sinemet). The doses to be gradually increased and I found even with increased levels of Sinemet, the effect of the medicine was there only for up to 2 hours and I would have a lot of pain in the legs. So without informing the doctor, to get relief I again started using Sifrol (pramipexole), and the side effects of the medicine started to have their way.
I went back to the doctor, this time he changed the medicine to Levodopa+ Carbidopa + Entacapone. The new medicine was effective, but I wasn’t still aware of the many DOs and DONTs which have to be followed while having Levodopa. Sometime around this time we also had initial discussions on the possibility of considering DBS as an option of treatment. But that was just preliminary.
