Just wanted to share my dad's process in case it will help anyone...
He was diagnosed at 54 years old and will be 70 next month.
He is rigidity dominant, experiences freezing of gait (mainly in initiating) and has dyskinesias from his meds (among many other PD symptoms!).
Up until almost two years ago, as far as he shared with me anyway, he was mostly doing ok on his prescription meds: 2.5 tablets of 100/25 Sinemet and the neupro patch. It wasn't always smooth, testing out different meds along the way. His whole journey transitioning to a more natural regime, which has been incredibly helpful, using mostly mucuna, can be found here:
Currently, he takes 5grams of mucuna, 1 dopaboost and half a tablet of 100/25 Sinemet every 2.5 hours, plus uses 6mg of a neupro patch. He also takes a whole schedule of supplements that helps him in different ways. He still has a hard time between doses, freezing here and there, feeling stiffness, especially depending on how much he has eaten or what he has eaten. At bedtime when his meds have worn off and he has to use the bathroom (once or twice a night), it can be a challenge, especially with curled toes, but he manages. He does have a difficult time falling back asleep, feeling a heaviness in his chest. Swallowing and balancing have gotten worse this past year, but he still manages.
He continues to exercise on a stationary bike and plays golf three times a week (in addition to his stretches, his physio exercises and speech therapy exercises... and the minimal QiGong I get him to do with me when we are in the same place!)
We tried getting him FUS in Switzerland (parents were going to remortgage their home!), but he did not qualify. They said mainly because of the FOG, we would be disappointed with the results (we were willing to take our chances). They also said that they would be better able to help him if we lived in Switzerland and they could see him regularly after a treatment (we were willing to figure out how to make this happen). To help manage the freezing, my dad did go through the LSVT Big and LSVT Loud programs, as well as had some psychotherapy sessions. Not sure the exact reasons, but they still did not accept him.
Luckily we live in Canada where DBS is covered by the government, and in Toronto where they have one of the best neurology focused hospitals in the country (Toronto Western Hospital). After being on a wait list for a year (and more because of the pandemic), and after several extensive cognitive and motor tests, my dad's number was finally called. He got to choose between three different neurosurgeons, and after doing some research, we decided as a family that while they all seem great, Dr. Suneil Kalia was our guy. (Aside: when we had our video chat with him after deciding, something about the doc reminded me a little of Adam Sandler).
While there isn't a therapist or counsellor who will speak with my dad to prep him for the upcoming four hour long surgery, through all the appointments (with nurses, a neurologist, the neurosurgeon and the anesthesiologist), we were able to ask our millions of questions. Some can be found here:
The anesthesiologist said that my dad would be awake during the surgery, but that he wouldn't feel anything; that it would be like being at the dentist. They would have his head sort of clamped in place so that he can't move during the four hour procedure. There will be a commode or something in case my dad needs to pee. The anesthesiologist would be there to monitor my dad's vitals, there would be the neurosurgeon, assistants helping and fellows/med students observing. They are not going to give him anything to relax or sedate him, but my dad can write the songs / albums he wants to listen to on a piece of paper, and they would play his requests through spotify for him. (Happy to hear this and am guessing it will be four hours of Beatles for my dad?!)
Yesterday my dad spoke with someone at Boston Scientific and then a nurse at Toronto Western, who both let him know that he would be getting the latest battery model (woo hoo!) It apparently lasts at least 15 years and for most patients, only needs to be charged once a month.
He will need to stay in the hospital for 2-3 days after and he will need to rest for 2 weeks, and it will take 6 to 8 weeks for him to recover. I'm not sure the exact schedule, but he will have to come in a few times for them to adjust the settings of the hardware they implant.
He had a long MRI last week, has a blood test on Monday, and this Tuesday will be his big day.
We are nervous but hopeful. I am imagining the wire implants in my dad's brain to be an internal assistive device, like a cane except cooler... he will become sort of like a cool cyborg, who can hopefully keep enjoy all the things he does, except in a way that will be easier for him.
Will post updates here as things progress!
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Thanks for sharing with such detail. I too am at the toronto western and I will continue to follow your dads journey. He is in great hands and I am sure he will have an amazing outcome. Lots of good luck and please keep posting with updates!
Will say a prayer for good results. Our daughter has had her diagnosis 8 years and is undergoing the cognitive testing for the surgery . .... I’m nervous for her but it’s her decision and the doctors . She has to have a MRI and then discuss the options with her neurologist. Please post an update. Good wishes for ur dad and you and family.🙏🏻❤️
I am excited that your father is getting DBS a surgery. My husband had his surgery in the summer of 2019 in New York City. He had a rocky 2 years, but after all the adjustments, he has a new life. He also has Boston Scientific, but his battery is not rechargeable. Keep us posted!!
Thank you so much for your post. I am thinking positive thoughts for your dad. I am in California and have just finished all of my evaluation appointments and am waiting to hear if I am a good candidate for DBS. I feel very positive. Please let us know who your dad is doing. Take care. ❤️ Karen
Wishing you and your dad xlnt results with the procedure. Great details and very helpful as I find myself similar to your dad in many ways, especially the 4 hours of Beatles! basketball with the 50+ crowd in place of golf, dosing intervals with mucuna & c/l mix and slightly younger-dx'd 48 now 62.
Was wondering why you chose Boston Sci over Medtronic or other device maker and sorry if this is clear in one of the links you provided as I haven't read yet.
All the best and keep posting if you can. Sending good vibes your way....
I was diagnosed in early 2018. A few years into the disease I was sent for a consult with a doctor about DBS. It was premature as the procedure is not generally done when the levodopa is still working ( or, "working" in my case) or the disease is in an early stage. I hope that something better comes along before I reach the point of needing DBS, or at least the procedure becomes available closer than Switzerland.
I’m taking 4g mucuna with 50/12.5mg Sinemet 3 times daily and the levodopa causes balance issues for me, especially after the midday dose. I am also beginning to notice some hesitancy in gait initiation. I am sure that levodopa is the culprit because before my first dose of medication in the morning, though my movements are slower and more stiff, my gait and balance feel fine. So I guess your Dad’s FOG may also be a side-effect of his medication. I hope DBS will significantly reduce his levodopa intake. All the very best!
DBS, Levodopa., Mucuna Pruriens... Everything is gonna be all right once they decide (labs) to take into account the forgotten medical fact that dopaminergic and noradrenergic neurons must NOT be activated/modulated 24 hours a day but alternately according to circadian rhythms set by the secretions of the pineal gland.
That's FUS, for Focalized Ultra Sound, Ultra sounds emitted by transducers placed on the skull are focalized on a (very small) area you want to destroy within the brain.
Thank you for the detailed post! I too live in Toronto and at Toronto Western Hospital., I wish your Dad very best of luck with his surgery, and please keep us posted!
Will respond and update more soon, but yesterday went well! The neurosurgeon Dr. Kalia was really skilled and really nice, and happy about how well it all went, and that my dad is doing great so far. After the four hour surgery, he was in recovery for another four hours more. When he was ready for a visit, my dad was actually the one that phoned us on his cell! Also got a few short text messages from him!
They have been feeding him a vegetarian diet though he doesn't have much of an appetite. Tomorrow morning, they will be doing a two hour surgery to implant the stimulator/battery into his chest, connecting it up his neck, to the wires they implanted into his brain yesterday. I think for this one he will be asleep. He will be in the hospital for at least another day after that. In two weeks, his family doctor will remove the staples from his head. He will need to be really careful, keeping surgical wounds on head and chest clean until they fully heal. The machine will be off for a while until everything heals, and he will be sticking to his usual medication schedule. He will need to take it easy, no heavy lifting or anything intensive while he recovers. In 6-8 weeks he will be able to do all the things he usually does again, then will have to come for regular visits to adjust the mechanisms so that it suits his needs.
He is resting a lot, except for when he isn't!
(Photo from a couple of hours ago, playing Beatles of course, while my sister quietly sings)
(only two visitors a day, one at a time, you know, pandemic)
Man in hospital bed with guitar, resting after deep brain stimulation surgery.
Thank you so much for sharing your dad’s journey, my hwp & I starting to look into DBS as an option. I saw your post/link on HDT’s page. Any details are so appreciated ❤️
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DBS awake or under general anesthesia 
