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WindsongMoonChild

4-Year DBS Follow-up

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Ok folks, I talked to Leilani at the PD Foundation this afternoon (our forum host), and it looks like we may have our own DBS forum maybe as soon as next week. When she asked me what I wanted to call it, I told her just the "DBS Forum"  (A place for those with Parkinson's looking into having DBS surgery, can connect with those that already have had it done).

I also told her that there were a few threads in the OPEN and YOPD forums that we would like to move to the new forum, as well as a couple that would be great "sticky's".

 

So here goes, I'm going to open a new thread in the OPEN Forum, for everyone to add any thoughts and/or ideas on what threads we'd like to move, as well as which ones we'd like to make "sticky", and how we'd like it to be....................... YES!!! We get to create our own forum home here......!!!!!!!!!!!

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Linda, you are a sweetheart, as are the others on the forum who have given emotional support. I have been on anti-depressants for many years before surgery and after the DBS, it was increased and another added. Let me know if you find a good doc who can work with patients who have chronic illness. I don't live in Maryland, but I am in DC often to visit my daughter who lives there. So if there is a psych doc that you like there I may be able to see him sometime.

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Michael-- thanks for the work that you did toward getting the DBS forum. It will be a big help to those wanting to investigate the surgery before and for others to tell how it has helped and did not help. One suggestion if possible: Do you think it would be possible for people to say where they had successful surgery or doctors who they think are exceptional? I am not sure of the implications of that and it may not  keep someone's anonymity if they desire.  congratulations!! 

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I also think that as far as what to put in the new forum, possibly if people who have posted about their surgery already, would like to have their posts put in, maybe you could start there.

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Siak, please PM me your e-mail address so I can let you know of a top psychiatrist at Hopkins who deals with depression and anxiety in Parkinson's patients.  He is extremely hard to get an appt. with, but I'll give you his name so you can try.  You may also be able to read his research, which might be a big help to you. 

 

I can also give you the name of my MDS's NP who may be able to give you some names of others. 

 

And my own doctor who monitors my antidepressants is great.  She's very highly rated, and she specializes in people with Parkinson's.  She is located at Good Samaritan Hospital in Baltimore.  I'd be happy to refer you to her.  I had such inept help from the office staff at my last very good antidepressant meds doctor that I left because of them.  I had not idea where to look for another who would be good and also accept Medicare (many don't accept it now, and I found that the ones who do are often not very good, which is putting it mildly.).  I made several calls around to friends and doctors they recommended, and by very clear leading, I went to see the one I ended up with, who could not be more perfect for me.  I feel that the Lord led me through a tangled mess that had no clear path to her.  And she accepts Medicare.  It was one of those difficult situations that the Lord allowed that was clearly for a good reason and that I'm grateful to Him for.  I can't tell you how long I went through rudeness and ineptness from the first one's staff to try to get a simple prescription filled. It went on for literally months.  I finally had to call Patient Advocacy to tell them that I was going to the CEO of the hospital, as well as anyone outside the hospital who needed to know what has been going on and who could help.  (Even Patient Advocacy had been dragging their heels in getting this resolved after I had called them several times).  By the end of that day, I had the prescription.

 

Also, I'd be happy to give you my MDS's name.  He's fantastic.  He spends a lot of time with each patient, so if you were to choose him, be prepared to wait a few hours beyond your appt. time before he can see you.  I had to wait three hours this past week...but it was worth it.

 

And last, I can also tell you the combination of my antidepressants which has been incredibly helpful.  They are a combination that is often prescribed now because of their efficacy.

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I want to post the name of and information for the doctor at Johns Hopkins that I mentioned above who specializes in depression and anxiety in Parkinson's patients for anyone who may want to do a search to read some of his research.  Again, I understand that he is extremely hard to get an appointment with, so this is being offered as an alternative to actually seeing him.

 

http://www.hopkinsmedicine.org/neurology_neurosurgery/research/labs/udall_center/team/gregory_pontone.html

 

This may also provide opportunities for participating in his clinical research trials if anyone is interested.

Edited by Linda Garren

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Thank you so much Linda, I will message you for the info. It is nice to hear that a doc is helping someone-- rare these days with so many overworked docs.

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I couldn't agree more.  And he does it with a constant smile on his face and with great enthusiasm and energy.  He listens, he has great compassion, and he welcomes collaboration, questions, and information we might bring to him.  He's all a doctor should be, wrapped up in one.  :-)

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Sorry I've been so quiet--been on vacation.  Told myself I would have plenty of quiet time on vacation to do some things 'in my own head' so-to-speak, but... well... in ten days, in two locations, we had eight guests at our camper!!  Still, as tiring as it was, it was a LOT of fun!

 

I have spoken with Michael about the new DBS Forum, though!  Woo Hoo... way to GO my friend!

 

More later,

Kim

Edited by KimAgain

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Flybaby

 

Congrats to you and all who will be able to give us great information. Even though I do not have DBS I will read about it. Never know when I may need it

 

Take Care.

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FlyBaby and anyone else who cares: I have some some news...

 

I think I have a Medtronics Rep on board to answer general questions regarding DBS (as much as it is in his wheelhouse)!  So, we are on our way to a great Forum I think!

 

Kim

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Yeah it is here, the DBS forum. Thanks for everyones hard work for making this happen. I don't have DBS but when the time comes I will sure have it done. Thanks to threads like this one. I have been reading it like a novel. It has given me great insight and has helped me understand others feel the way I do. Thanks everyone. Keep the comments coming

 

Blessings

Adam

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Michael, wow you did it!  It is so cool to have our own forum.  Thanks for all your hard work to get to this point and for all the hard work you plan on putting in to get us going.  I am still in the early days of DBS as you know and trying to be patient, not my strong suit.  What a relief to have a place to share our ups and downs (little humor there). Thanks again, Micki

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Question for you with DBS. Lately my DW has been saying her arms are stiff again. I noticed her face is tight also. She had an programming session last week. Did any of you have dystonia and if so, has it come back to any degree?

Coach

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Coach,

 

Yes, I have had DBS induced dystonia.  Sometimes, when I'm "over tweaked" that way, if it is tolerable, I stick with it for a few weeks to see if it gets worse, better, or stays the same.  The one thing I do not do, right away, is tweak it myself!   The very first step, in my opinion, is to stabilize yourself to the very best of your ability.  That usually means, you do nothing until you can see for sure where your set point is, because a little dystonia in an arm or leg or something, may be just the beginning, but, it may just as easily, be the full extent of the "new problem" you've discovered... And, the only way to know for sure what the case is, is to wait it out if you can.  If you can't, of course, you'll either have to go back to your doctor, or do something yourself--and, this is where it gets tricky!   As I've said, unless you are stabilized (and, by that, I mean you know the exact nature of your new problem, the extent of it, and you know for sure how "bad" it is and if DBS is the cause), it is all but impossible to know exactly what to do next.  So, here are a few of the scenarios, in the past six plus years, I have worked through...

 

  • Do nothing to the DBS, take less meds.  Wait a few days.  If this solves the problem, I'm good--until the next time something comes up!
     
  • If I have a remote control, and I am on a pretty low dose of meds already, and I have the perimeter leeway at my disposal, I adjust down by .10 volt (or, even .05 volt increment when I was not on continuous current).  Then, I wait... and wait... as long as I possibly can, to see what exactly  the change has done.  If the change improves the problem, I'm good--until the next time something comes up! 
  • If not?  Well, now I'm in to figuring out if the change I made has worsened the problem or improved it?  Improved it, but not enough?  Perhaps I actually need to turn up?  But, what if I do and it makes it worse? It's back to the doctor!  What if I do and it makes it better, but only a little bit?  Perhaps I turn up half and increment, or even a whole increment.
     
  • What if my problem turns out to be something else?  A new medication has started the dystonia, or something?  I have learned, for instance, that pain meds will ease pain for me, but give me dystonia!  How did I learn?  By what I call, "clearing the field" and, waiting, waiting, waiting until I nailed down the real cause--and, then manage my meds/DBS accordingly

O.K., are you seeing my point, yet??!  We are all different.  There are a zillion ways we can address our issues. Sometimes the problem is solved by DBS.  Occasionally, it may caused by DBS.  Often, it is a case of time, trial, and error.  And, if you cannot sort it out for yourself, the first thing you should do is confer with your programmer.  Then, when/if you get to the point that you are able to adjust the DBS yourself, take is s-l-o-w-l-y, observe the results (and, make NOTES!)... Then, when you feel sure you know what to do, do it.  Then, wait, watch, and see what happens.

 

I know that is not much help, but I'm afraid it's the best I can give you--from my experience.  Perhaps someone else can give you a more sensible answer--in which case, I'll be fascinated to read it myself. :)

 

One last thing...

 

Caregivers, family, and friends all want to help.  But, frankly, from what I have witnessed from the DBS patients I have spoken with, the people who love us and support us, often interfere too much!  Other people may think they know how you are doing and what is best for you, but honestly, if one is not cognitively functioning well enough to formulate one's own thoughts on whether or not it is time to "tweak" one's DBS--perhaps, one was not a good candidate for the surgery in the first place?!  I'm NOT saying this applies to you, Coach, because I do not know.  But, I am saying that, in my experience, well meaning people often cause more confusion than help and, sometimes, it is best for the DBS patient to make changes in private--then, just wait on unprompted feedback from family and friends.  Again, this probably doesn't apply to you, but it is something for people to consider.

 

I await the storm!!

Kim

Edited by KimAgain

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