post DBS

[FifteenyearsPD]

Several months have passed since I had deep stimulation of my brain.

I ‘ve lost some in my speech but overall big improvements have been my gain.

I can walk – almost run- like I have not been able to do in quite a few years,

I am not freezing, stumbling, have no back aches and very few falling fears,

I keep thinking that I am going to wake to find it was only fantastic dream.

But every single morning I see the new me in the mirror it would seem.

I am still in the minor adjustments phase with some done here and some there.

It is truly amazing how close the docs can come; kind of like splitting a hair.

A slight downward tweak and a small upward tweak on a hand held device.

Translates to more mobility and ease of movement which is really nice.

I look forward to each day as my stamina and strength continue to return;

And I truthfully can say, “ Yes, I can do that” without the slightest concern

[Jbcourcy]

Are you still taking meds? I had DBS done April 6th. Scars are still pretty sensitive and I find the place where the leads meet and connect to battery to be rather sore a lot of the time. Yes the benefits from it are remarkable. But having difficult time adjusting so I'm not overdosing

[skutr in reply to Jbcourcy]

I had the surgery over 4 years ago and I only take one Requip in the morning.

[Sleeplessparki in reply to Jbcourcy]

Hi, what manufacturer did you go with for your DBS device

[skutr]

I am glad both of you have such a positive experience to talk about. It has been over 4 years for me and I'm not so sure I would do it again. My speech is terrible and it was right from the start. My balance is almost totally gone. I can fall over at the drop of a hat. I can't write anymore at all, not even to sign my name. Everything has been since the surgery. The only good thing that has come out of it is the fact that I don't have to be on so many meds. I take one Requip in the morning and that is it for the day.

[Lightning94 in reply to skutr]

Skutr, I have had my 2nd DBS, the first worked perfectly, however I developed on infection in my left side brain leads. Long story short, they (docs) pulled everything. I had bi-lateral with one battery. 10 months later they put everything back in with two batteries. As soon as tuner turned it on my speech went to sounding as if I were drunk and I tried to move every wall in the house by falling into them. Because the 1st time th edoc went into that one side too clean the infection my skin will no longer heal. So they sent me to a plastic surgeon, and he didn'tdo anything to help. The wound opened up again(you could see the mice running around in there) and my doc said its been compromised and pulled the left brain lead. I woke up in post-op and could speak normally and once my meds kicked in I could walk normal. Now I had dropped a lot of meds,but my life my life sucked. The docs have no explaination but they say it is doubtful. They will able to put another unit back in there. I would never go through this again (now this is just my case, I've heard many wonderful endings with DBS)

[lanep-since03]

DBS since march 1st it is amazing! Facial expression is back, cut 2 prescriptions in half! They were going to do both sides but the left side worked so well no need for one on the right. PRAISE GOD!

[Thumbpick]

I ihad DBS in Sept 2010... and, as I say below, it gave me my life back. Here's a Today Show video Include b/c my tremors were at least as bad as the man in the video, but miine were bilateral.

Subject: Today Show brain surgery (tremors) - 5 minute video

In the video they say the operation shown is not specifically for Parkinson’s, but a related problem. However, at the end they mention that it can be applied to Parkinson's as well. Apparently this is pretty much the same procedure MJ Fox had…. and is identical to mine (except, as I said, mine was bilateral):

msnbc.msn.com/id/31388323/#...

That surgery gave me my life back. My tremors are almost totally gone. However, I don’t yet have complete “smooth” control of my right hand, so it’s difficult to strum a guitar evenly. But I’m working at it. ALthough the neuro said the DBS would not likelly have any effect on it, it also cured my freezing and swallowing difficiutlies.

I still have a few leftover symptoms, like slow movement, stiffness, and some balance problems. Also, I have a leftover problem from the DBS –slurred speech. Some people don’t get it, some do. Apparently the electrodes they put in the brain are placed close to the speech center of the brain. I’ve had about 4 or 5 “courses” of speech therapy. The last – and by far the most effective, was w/an LSVT-certified speech pathologist. I still slur some when I neglect to speak slowly and enunciate… but I keep working at it.

I stronglly recommend finidng a speech therapist who is LSVT (Lee Sullivan Vocal Treatment) certified.

[Thumbpick]

Oh yeah, and I still take sinemet and clonazapam (sic?)... sometimes it even works!!

[skutr]

That video is all well and good but I wish they would have told about the not-so-wonderful things that can happen! Like the speech and the balance being worse. Not everyone has such a rosy time, that's for sure.

[FifteenyearsPD]

my speech is somewhat of a problem - not terrible but I have to repeat things for my husband. It does to help that he is deaf and refuses to wear a hearing aid. so my issues may be more with him but ofter 48 years he s not going to change

[Kadie57]

I had dbs implants 4 10 12, and it is an amazing feeling not to shake. I had spells of freezing and have had a new learning curve with meds, but all in all I was told to look for the gift at the end of a long long road, once the implants are set it will be a new day with new hope and chance to live my life unstead of parkinson leading my life.

[Wobbler]

I have just gone through the DBS ordeal , So far so good. The benefits are outweighing the disadvantages. On the positive side,the tremors have been eliminated, I no longer have rigidity and finally I can find some peace and sleep. Of course there is no free lunch and I am experiencing speech problems and balance issues. As an avid fitness fanatic I am chomping at the bit to get physically active to try and master my new balance problems and get back to playing golf and tennis, however poorly!!. I am also working with a speech therapist with some success..... I am down from sounding totally slurred with 12 Gin &Tonic's to a smoother more pronounced 4 G&T's. I go back in a month for my second tweaking, so hoping for further improvement that with my various therapists, I am going to give it my best shot!

[debbie66]

My husband had the DBS done in 2004,the change i saw was fantastic,no more dyskinesia ,he was sitting up in bed and not moving a muscle,he lost some of his get up and go but it was great at first,his speech has suffered terribly,his balance is almost non existent and he can just about sign his name.He has suffered from depression as well but he says he would do it again as he knows if he hadn't he would now be unable to do most things.We can go for a walk and as long as its a straight path we are ok but put a turn in it and we end up heading off at a pace til i can catch him and stop him.having a sense of humour helps but even that can be strained at times.He is starting to take an extra med now but considering that at the beginning he was on about 20 tablets a day that went down to about 8 after the dbs and is now at 12 .