Well..... this has been a tough 2 months. First month and a half was waiting for the DBS surgery to heal and only half of the second was turning it on and learning how to manage it. That is still being learned now. I think it is going to be a lo-o-o-o-ng process. Leo is a very impatient man and that makes it harder. i don't blame him, this has been a hard 9 years to deal with.
I have been reading more and more posts and have seen how doctors treat patients with DBS implants very differently. For instance, Leo, my husband; had only his left side affected by PD. His doctor believes both sides needed to be implanted because PD always progresses to the other side. It will cost less to do both sides at one time. We agreed.
Leo has been able to cut down on his Requip. He is taking half the dose now. He took 4 pills a day and now only two. I hope he can lower it to one a day. We don't think he can stop it completely due to the Restless Legs problem.
keeping the DBS programmed a very frustrating thing. Every day is different. We did not know it would be this way. I want others to know this before they go into this. It is a very frustrating thing to deal with. One day it is great and then the next is like nothing was even done! The setting then has to be raised or lowered. Not only every day but sometimes throughout the same day. Leo carries his remote controller with him when we go out.
The doctor has told us this problem is due to the brain getting used to having this DBS controlling it. The brain is actually not wanting to let this happen! It will take a few months for the brain to let this happen! That is why it takes such a different amount of time for people who have had this done.
Leo tells me the battery pack; the controller, that is implanted in his chest is itchy. It drives him nuts at times. It was also painful the fist month. When he hit it or just touched it. When his shirt rubbed on it. That has passed now just the itching is still there. He takes the implant and holds his hand over it and shakes it gently. This stops the itch.
There are days Leo still gets angry and frustrated with the whole thing. He is now on an antidepressant. This has all been hard on him and me. DBS is different for all PD sufferers. .IT IS A VERY LONG SLOW PROCESS. If you are thinking of doing DBS remember this before you can say, "I have my life back! " like some of these very blessed people we read about on their posts about DBS.
I hope this helps others who are thinking about DBS. I just want to help. God Bless you all.