Parkinson's Movement
13,797 members12,359 posts

DBS SURGERY

With my DBS surgery scheduled for bright and early on December 15th, I have to say that the last nine months have passed quickly. I sometimes regret taking a year to make my decision that DBS was not only an option, but a "must do" for me. This website is a wonderful forum - I believe that the experiences related here can help the Parkinson patient and caregivers make educated decisions about whether they should make a change in the way they fight this battle called Parkinsons. As I often say to my family and friends who are battling MS, cancer, diabetes, or any other disease that changes their life: "You don't get to choose your health battles in this life, but you do get to choose how you fight those battles." My choice of weapons begins with education about your own body. To begin this education I started having blood tests that indicated levels of everything from cholesterol to white cell counts (CBC blood test). I also have 6 month tests for my thyroid. I eliminated the over the counter drugs, such as headache meds. I prefer to find the source of the problem and eliminate that. For example, if you have a headache - think back on the day and see if you drank enough water. When my doctor wants to add a med that is Parkinsons related, I start out with 1/2 to 1/4 of the recommended dosage. And I never add more than one med at a time and never until I experience the side effects MY BODY will have with the med. As part of the education of my body, I changed my eating habits. Three years ago I began experiencing "off" times when shortly after I took meds, they suddenly stopped working. I tried using Rytary to give me a more steady intake, but because I have trouble swallowing capsules, I had to open the capsule and take it with applesauce. What a pain when out running errands. And I was still experiencing weird "off" times. A dietitian suggested that I try removing all animal protein from my diet - and so I became vegan. Getting meds to the brain requires them to pass through the blood brain barrier, and protein interferes with that process. i take 10 Sinemet, plus an extended release Sinemet, plus I use the Nupro patch, so there simply isn't a long enough time between doses to consume protein. I look forward to the post DBS surgery period (I call it "the other side") as a time when I can introduce eggs, milk, fish, and chicken back into my diet. But I have to say that my body is quite healthy. I also make sure I get plenty of fiber and buy organic. Too expensive you say? Not in the long run. Shop around, there are options.

Choosing this path of good nutrition and body education has paid off for me in my DBS workups - passed with flying colors!

I will say this more than once, I'm guessing - if DBS is an option for you, think twice before turning it down. Everything I have read tells me this is the right option for me.

More later... Have a great Saturday!

15 Replies
oldestnewest

Congratulations to you for being soooo brave. I just have tremors,but they are getting worse. I am afraid to have DBS because it involves the brain and do many hours in surgery. Good luck to you,,and maybe some day I will get passed my fear and give it a try!

2 likes
Reply

I’m so happy for you. The quality of life that I have experienced is simply phenomenal! Where is the surgery being performed? Best of luck!!

2 likes
Reply

Thank you for your good wishes! I am having the surgery here in Boise. I have no reservations at all about the outcome - to say I am excited is to put it VERY mildly! I am wondering what your recuperation from the surgery was. Were you up and about pretty quickly? How long ago did you have yours?

Reply

I had my three years ago today; I was up and moving around almost immediately. I only took three half doses of pain pills over the first two days. I have more detail in my recovery on a post from Ian Frizell this morning ... i’m excited for you!

1 like
Reply

Thanks for replying and giving me the information. I'm also curious to know if you have to take meds since your surgery.

Reply

Yes I take Rytary and klonazapam

1 like
Reply

I love your pragmatic approach to PD. Also, thank you for keeping us in the loop on the DBS. I certainly plan on having it done when needed. Do they have to shave all your hair off? I am still vain enough to not want to be bald, although I would do it anyway, of course.

1 like
Reply

Re:being bald :t's not as bad as I thought it would be. I picked out a nice wig beforehand. It looks better than my real hair. I have gotten so many complements on it! It's really easy. I don't have to worry about how my hair will look on any certain day.. I just place it on my head .i have some head wraps for in between times.

Reply

Who is the recuperation from the surgery like? How long did it take you to get back on your feet? And what kind of meds are you on now that you've gone to the surgery? Thanks for the tips on the wig that's a great idea

Reply

It's funny that you would say that about your hair. I'm not one bit worried about this surgery that does buy me out that I have to lose all my hair. But it is a very small price to pay.

1 like
Reply

Well I didn’t have my head shaved not one time

Reply

My surgeon is of the opinion that the risk of infection when not shaving the head is too great. I respect that.

1 like
Reply

I respect that too.

1 like
Reply

Congrats!

I had DBS last April the operation felt like it took an hour and I went home the next day. Came back a week later and had my St Jude application implanted. I was home by 5:00 that day:) I went from 6 Carb/Levo 25-100MG to 2. My tremors a just about non existent. Good Luck!

Reply

I can hardly wait!

Reply

You may also like...