deep brain stimulation for parkinson's disease: what it feels like

manzil bacchus was diagnosed with parkinson’s disease in 2008. initially, he was told that there was nothing he could do to stop the progression of the progressive nervous system disorder that affects movement. manzil and his wife, sadia, continued to manage the increasingly worrisome symptoms — which included tremors — and the growing amount of medication that he had to take each day.  

after manzil was diagnosed with colitis, a chronic digestive disease that has been linked to parkinson’s, the family began investigating a new surgical option. in deep brain stimulation (dbs), electrodes are inserted in regions of the brain that have been affected by the parkinson’s, with an impulse generator battery also inserted in another area of the body. when turned on, the electrodes send gentle electrical pulses to help improve symptoms like tremors and motor control.  

manzil and sadia sat down with healthing to talk about manzil’s experience having brain surgery during the covid-19 pandemic and the difference that deep brain stimulation has made to his quality of life.  

when was manzil diagnosed with parkinson’s?
manzil: back in 2007, my hands started shaking. i was volunteering at a mosque, helping people to take a pilgrimage in saudi arabia, helping with their application for visas and stuff like that. one of the girls noticed my hand shaking and asked why. i thought i was just tired. after that, i also noticed that my left foot was dragging when i walked.  

sadia: we were going for an evening walk and his left arm was not swinging and his left foot was dragging, which was very concerning to me. we decided to go to a family doctor who thought it was nothing, but we insisted that we should see a neurologist. we saw a neurologist, and it wasn’t a very detailed appointment or anything, [the doctor] just said, ‘it’s parkinson’s.’ and there was no medication— there was no nothing.  

manzil: there’s no actual test for parkinson’s.  

so the first neurologist said there was nothing you could do?
manzil: yeah, [he told us it was an] incurable disease and you only can live with the symptoms and moderate symptoms of the disease with medication.

sadia: as time went by, little things [became difficult], like zipping his coat up himself, tying his shoelace, his balancing. i would always try to have my house in a way where it’s fall-proof, because i’ve read that a lot of parkinson’s patients fall. in 2011, at one of his visits, i noticed a flyer for superwalk canada, [a fundraising walk to raise money and awareness around the disease]. i’ve never heard of this event before, and my thoughts were, ‘i can do this to help my husband find a cure.’

my husband having pd affected me so much. with four children, i had many thoughts going through my mind. i read so much on this disease; it was frightening. we went on the superwalk and we had almost all members of the family and a few friends join us. even then, some families and friends didn’t know manzil had parkinson’s. this is how we connected with parkinson’s canada.  

what goes through your head when you hear there’s no cure?
manzil: the doctor reassured me every time i went back [that], with parkinson’s, you can live with it for a very long time. so, while it’s an incurable disease, it won’t kill you. i took it in stride, i think.

so, i sort of started to avoid social events. anybody who was not close to me would not know that i had parkinson’s disease because the medication worked to an extent and when it didn’t work, i would not go out.

when did you seriously start to consider deep brain stimulation?
manzil: [protein affects how the parkinson’s drug levodopa is absorbed], so i would have to regulate my meals. if i wanted to eat meat, i would take my tablets 20 minutes before i ate. if i took my medication after a meal, it would take a longer time for it to work, or it wouldn’t work at all. so it became a challenge as the disease progressed. it would grow to four tablets or five and went all the way up to 10 tablets a day. plus, with 10 levodopa, came some other tablets called amantadine, which helps with the dyskinesia. but if you don’t take an amantadine when the levodopa starts working, it makes [you move] more as opposed to less. so, you have to regulate when you take it and how.

manzil: it became very stressful. but i managed for 12 years. that led me up to 2000, when my doctor said that maybe we start to think about deep brain stimulation, and then i got scared. now do i have to go have dbs surgery — messing around with my brain? we spoke to some people who had the [surgery] a year before and everyone said they would do it again because it increased the quality of their life. that’s what i was thinking of, a better life. so, i decided i’ll go with dbs.  

how did you prepare for the surgery?
sadia: our kids stepped in and helped us get ready. a surgery like this you don’t know the outcome of it, so we were getting prepared for anything or everything. we had grab bars put into the bathroom. we rearranged things to make sure when manzil comes home from the hospital he would be as comfortable and safe as possible.  

sadia: manzil and i have been married for 44 years. we’re almost always together. this was the hardest thing i’ve had to do. i didn’t sleep at all the night [before] and i was in tears when i called my son to say, can you come get me? he kept saying mama, you okay? mama, you okay? i just felt so alone. i felt so scared. i felt like i didn’t say enough to manzil . i mean, somebody is going into brain surgery, you don’t know…

your mind goes to the worst places, right?
sadia: yeah. and then the security guard was telling me that i couldn’t wait inside the hospital. i kept saying to her, it’s dark outside, i don’t want to be alone.

manzil, w ere you anxious about the surgery?  
manzil: i knew nobody had died from [this] surgery at toronto western hospital. a couple of people had infections afterwards, but no deaths. so that was a reassuring thought. i was a bit apprehensive — a bit scared that somebody was going to be working on my brain. and also, i was supposed to be alert. so they would be working on my brain and i’d be [awake].

what was that like?
manzil: it sounds scary. they would ask me to say something [to check] if my speech was slurred. they wanted to make sure that the electrodes that they placed into my brain were in the right position. and i understood that.

so once manzil was in surgery, sadia, you’re just scared and waiting to hear from the hospital? 
sadia: i anticipated it was going to end at about noon and i had a call at 11 a.m. from [the surgeon]. i was terrified. i said hello, and then i froze because i had already gone through a situation in my life where i had a call from a doctor telling me that my mother had died. and i didn’t know why he was calling me at this time when the surgery was not supposed to be finished.

what was the healing process like?
manzil: i was ok. i came home and a week after that i had to go back to my family doctor to take out the staples on my head. i really thought it was going to be difficult, but it was quite easy.

[the doctors] told me that although they put the stimulator into my chest, it would not be turned on until about february. i was still on all of my medications until february 18, 2020 . at that time, i went to the hospital and they turned on the machine and put it on very, very low. i would go back every wednesday and they would adjust it accordingly. every time i went for a visit, i was doing significantly better.

what did it feel like when they turned it on?
manzil: t he first time that they turned it on, the guy actually turned [the dial] a little bit in different directions. and suddenly, my vision started to be blurred. he adjusted accordingly to make sure that my vision was not blurred, my speech was not slurred and they would test me with the walking, they would test me with my balance. every week that i went, i got a better assessment, a better score.

is this device always on?
manzil: it’s always on. i actually went to los angeles in the end of july and, one time, i went to the bathroom and i realized that i wasn’t able to do the things that i wanted to do. i couldn’t even wash my hands properly. when i looked at my remote simulator, i realized that i inadvertently turned it off. when i put it back on, i felt a rush through my whole body. i can’t explain it; something changed in my body and then i was back to normal. it was a learning experience. i was fooling around with it — i won’t do that again.  

are you still on medication?
manzil: i’m still on one levodopa in the morning, one at night. and i take an amantadine also with it. so, basically that’s it. 

sadia: manzil has his life back and i have my husband back and our kids have their dad back.   the outcome is very good. it really has increased the quality of his life. and that’s what he wanted. we’re very, very grateful for all the help we’ve gotten from everyone.

emma jones is a multimedia editor with healthing. you can reach her at  emjones@postmedia.com or on twitter @jonesyjourn

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deep brain stimulation for parkinson's disease: what it feels like

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