deep brain stimulation for parkinson's disease: what it feels like
12 minute read
manzil and sadia bacchus at the annual superwalk benefit.
stay up to date on this topic
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.
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.
advertisement
manzil: there’s no actual test for parkinson’s.
sadia: i wasn’t too happy about that. we were in denial about parkinson’s. so we went back to our family doctor, after i did some research and found out that toronto western [hospital] had a really great neurological department. so i asked our doctor if he can refer us to someone there.
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.
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.
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.
i was conscious of the fact that sometimes i would miss social events because i didn’t want to go out. it’s not always because i was shaking; sometimes i would have an involuntary movement or dyskinesia, which is a symptom of the of the [medication]: involuntary muscle movements. for instance, if i’m holding a plate, sometimes the plate drops from my hand. so now, if we are at a buffet for a wedding, my wife will hold two plates, and i will tell her what [i want].
advertisement
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: [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.
sadia: when the medications went up to 10 levodopa per day, manzil was losing a lot of weight because you have to [time the medication and] he wasn’t able to eat properly.
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.
sadia: before covid, we would interact with people who have parkinson’s or who are caregivers, and there were quite a few people we met there that actually had dbs and had great, positive results from it. so that was a little reassuring.
advertisement
in 2016, he became very ill, and the doctors [couldn’t tell] what exactly was wrong. i took him to oshawa health centre on a saturday morning, and they were so concerned about him that they called the gastroenterologist who was on-call. the gastroenterologist looked at his previous test results and scheduled him an endoscopy and colonoscopy for monday morning. he was then diagnosed with ulcerative colitis. there is a connection between parkinson’s and colitis.
editor’s note: many patients with parkinson’s develop colitis or other gastrointestinal illnesses.
[our doctor] suggested in early 2019 that manzil would be a great candidate for dbs and he was going to refer him for the surgery. there’s a two-year waiting period, which sounded really long at the time. manzil was pretty bad: when he showered, i had to help him dry his skin. there were a lot of things he couldn’t do for himself. medications weren’t working. some doctors suggested that if we crush the tablet and he takes it with a bit of carbonated drink it would help, but those things weren’t really helping very much.
he finally had the surgery last december.
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: 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.
i had been to all his appointments, even in covid. the day before his surgery when he went for bloodwork and his covid test, i was with him inside the hospital. at all conversations, he kept asking if i can go with him until he goes in for his surgery and it all was always a yes.
we arrived at the hospital at 5:30 a.m. at that time of the morning, it is still quite dark. i was told by security that i couldn’t go with manzil. that made my very patient husband very upset. he went up to the surgery floor and asked, but they told him no. they also told him if you want to have the surgery today, you better get back up here as quickly as possible, otherwise it’ll be canceled. he returned only to give me a quick hug and left. i was in tears. we didn’t say goodbye properly before a major brain surgery. i was in shock and at a loss for words. i called my son who came to get me.
advertisement
manzil: it’s very difficult because everything was so fast. when i went to the office and said that my wife is always coming with me, can she come now? he said no. so i said, oh my god, i have to go down and tell her. and he said to me, you better go quickly, because if you return too late, you might lose your time of surgery. and i didn’t want that. so, i took the elevator down quickly, we hugged each other, and that was it.
i expected to come out of that surgery because they told me that i was a good candidate. i was also 64 at that time and i felt not that old. so basically, i just said okay, going on with it, you know, what can you do? you would love your wife to be there and have that support. but they allowed her in the next day for an hour.
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.
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.
anyways, my son came and got me and my daughter was with him. they were a really great support for me.
manzil, were 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].
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].
advertisement
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.
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.
but prior to that, doing the surgery to numb my skull, oh my god, that was painful. and then they put a frame on your head and they go into an mri on your head. i hate mris, totally, but i had to do it. and then when the surgery started, i couldn’t move my head a centimetre. they tie it up and put it in a box and bolt it to the table so i couldn’t move at all.
after the surgery, i came out and i was okay. and then i had to go for another surgery to implant the stimulator into my chest. for that next one, two days later, i was put under.
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.
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.
but he said the surgery was finished and everything went well. he just wanted to let me know that the surgery went well for him, and everything that manzil did in terms of his surgery was also being used for further research.
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.
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.
advertisement
what did it feel like when they turned it on?
manzil: the 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.
manzil: the 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.
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.
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.
i’m doing much better. i don’t get up in the night as much and i don’t have cramps. i used to have terrible, terrible cramps. dbs has really helped me a lot.
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.
readers interested in learning more about parkinson’s and available support options can check out parkinson’s canada and our previous article what it feels like: young-onset parkinsonism.
what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.
advertisement
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn
thank you for your support. if you liked this story, please send it to a friend. every share counts.
share story
