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4-Year DBS Follow-up


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#341 siak

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Posted 01 July 2015 - 10:01 AM

NN--I tried to start this last night and fell asleep in the middle of typing. When I woke up the computer said "You do not have permission to do the requested action". I have no idea what I did when I fell asleep on the keyboard so I hope it wasn't something weird! I used to fall asleep in the middle of typing and I would wake up to pages and pages of the same letter.  :oops:  Anyway, I wanted to let you know that I am glad you posted on this thread because I would not have seen it otherwise. And I feel it is appropriate for the depression theme because what causes me the biggest anxiety in my life with PD and DBS is not being able to move and do the projects, big and small, that I want and need to do. It was so amazing that you put the post on yesterday because the past few days I have not been able to walk, get around my house, go outside, bend over to reach under the bed, etc. So, I had always heard the word "Dystonia" in relation to PD but I didn't know (and still don't) what it was. Before I saw your post yesterday, I finally thought that maybe my problems were dystonia, so I looked it up to see the definition. The definition didn't really match what my experience was but when I saw your post, it made me wonder if the problems I am having with moving were dystonia. SO thank you for posting. I know it doesn't answer your questions, but I want to investigate the issue further with my doctors. I will share the info with you if I get any helpful answers. Kim--thanks for your post also, I will respond later. I have to try to be productive now. I wish I had more time / energy to type more. :)  :)  



#342 New normal

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Posted 01 July 2015 - 03:17 PM

Feet: Thanks, Kim...you are always so generous with your time...you are amazing....and Coach T.....and others....

What is odd....when I overstretched my right foot, it hurt for over a week....my left foot hurt equally....but, because I thought it might be dystonia...I left it alone...it was gone in one day...which makes me think it is PD related.....WHICH means I will continue to stretch....carefully...accept it, adapt...and move on...

Siak: I have dealt with PD long enough to know,that whatever sensation...or pain...or weird feeling...that a nerve can elicit in ANY part of the body can be PD related.....the flip side...is many of us ignore the myriad of "stuff" when it could be a sign of something else. So I have adopted the rule...it happens once...it is PD...twice, it is me.(environment)....three or more often, I start paying attention to it and try to discern if I should seek medical help.

An example: before I was dx'd....I was dx'd possible MS....I was getting into my car on passenger side.....I SWEAR I touched nothing...and in my elbow...near the "funny bone" I had a HUGE jolt of pain...like a sledge hammer hit it....I cried,out ...yelled would be a better word.......grabbed my arm....and stepped back out of the car.....and THEN my forehead mass tingled with shots of pain...pressure.....my poor DH....<<smile>...,,,I had just,screamed...but now was holding my head...saying, "my head is EXPLODING".....yep, everyone likes to do,that on a busy street corner! I tried everything to control it...and ...BAM ..it disappeared.....

OMGosh...another adventure...totally out of nowhere......I went to my PCP....he calmly explained that my body was playing tricks...and it simply was MS...to get used to the unexpected.....well, now it is PD....and the game has amped up......

I cannot imagine adding another variable..... DBS....it must be so difficult to identify anything....and to assess the origin....Siak...you have EVERY reason to feel depressed....and seek a cave somewhere....cave seeking is ok...as long as it is therapeutic....when u no longer want to come out of the cave is when you need intervention.....self control and self discipline is hard for any of us...and elusive.....

On "Dancing with the stars". A contestant danced with one leg and a prosthesis.......when she was at her lowest
filled with discouragement, was asked...."how do you continue?..... She answered, "I just dig deeper...." Wow.....I know how many times I didn't want to dig at all......but I do know, Siak, we each are given the resources...and we all have the potential to dig deeper......we just,have to find our own way....find,that element that will help us keep digging deeper for strength..

You have done it before...I know you have...and you can, again...dismiss those,who,give you negative feedback until you find a source,who,will validate you....believe in yourself....you have purpose...hang on to that...and keep posting...we all learn from each other...hang on....stay strong!
Dx'd 6/13 @ 66 by MDS in office with sub linquil L dopa challenge. Carbidopa/l dopa 50/200 5x in 24 hr span.
Reaction to Amantadine 100 mg 2x per day,Discontinued, 4/15.
Normal DaT scan '13, normal MRI, '13 Second DaT scan, 10/14, normal.
Symptoms: 90% controlled: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy, full body dystonia seizures approx one per day, dysfunctional autonomic systems
Cherish your loved ones, make memories with them..........now.

#343 KimAgain

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Posted 09 July 2015 - 08:24 AM

I tell other DBS patients this rule: "A symptom must be persistent, consistent, and bothersome to warrant considering an adjustment."  AND, a companion rule: "Take your meds on a rigid schedule--it's the only way you have a hope of discerning the difference between a new problem from a problem caused by meds simply wearing off!"

 

It would seem, that any change in symptoms would be the red light to whip out your remote and make a DBS adjustment, right? Maybe, with essential tremor, I couldn't say--I don't have essential tremor.  But, I have found, with my DBS for my Parkinson's, listening to one's own body is the most important thing--and, listening takes patience and patience takes time.  One simply cannot turn the DBS up or down at every whim of the body--the signal that something needs to be changed is, perforce, something that is consistently occurring, persistently occurring, and is sufficiently bothersome (causes pain or diminishes functioning) as to need to be adjusted.  

 

In my own personal experience and from talking to other DBS patients, I  have come to the conclusion that signs of something amiss come on oh, so slowly and, quite often, do not present a problem until they have consistently persisted for a significant time!  (Try saying that  five times, fast!!)  I think this is why the depression and apathy I slipped into got past me for so long... because, it didn't come knocking at my door one day, announcing itself as a new issue--it crept in slowly, insidiously, and relentlessly--attaching itself to me like a barnacle on a boat.  My boat was sinking from the weight of it long before I had any inkling that it was even there.  

 

I'm going to say this for the record:  I think it may have been an actual side effect of the DBS and, I am so grateful that I have responded to treatment.  I was fearful for a while that I would have to have my DBS removed in order to feel like myself again.  So... psssst... Siak... 

 

How are you coping??

 

Kim


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#344 New normal

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Posted 16 July 2015 - 12:09 AM

Kim...I think you are spot on when saying that depression post DBS can be related to,the DBS....but to add to,the discussion...medical professionals are now acknolwedging severe depression follows ANY serious invasive surgery....heart surgery patients now are routinely watched carefully for post operative depression....and others....so I wonder if it is the actual DBS...or the invasion of,the body?

Also, Siak...thinking of you...how ya doin' ?
Dx'd 6/13 @ 66 by MDS in office with sub linquil L dopa challenge. Carbidopa/l dopa 50/200 5x in 24 hr span.
Reaction to Amantadine 100 mg 2x per day,Discontinued, 4/15.
Normal DaT scan '13, normal MRI, '13 Second DaT scan, 10/14, normal.
Symptoms: 90% controlled: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy, full body dystonia seizures approx one per day, dysfunctional autonomic systems
Cherish your loved ones, make memories with them..........now.

#345 FlyBaby

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Posted 16 July 2015 - 06:12 AM

Well, to add to this interesting topic, although I have had no previous experience with depression...... I had DBS surgery 7 months ago, and this month I started on anti-depressants, due to a problem with depression.  So I'm quite interested in what others have to say on this topic.........


Michael

Current age= 55

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 2013

 

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14 

 

"I will do what i can, while I can, and when i can't, I'll do something else"

 


#346 KimAgain

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Posted 16 July 2015 - 09:34 AM

Kim...I think you are spot on when saying that depression post DBS can be related to,the DBS....but to add to,the discussion...medical professionals are now acknolwedging severe depression follows ANY serious invasive surgery....heart surgery patients now are routinely watched carefully for post operative depression....and others....so I wonder if it is the actual DBS...or the invasion of,the body?

Also, Siak...thinking of you...how ya doin' ?

It's interesting, because yes, I do tend to think of it as a DBS/PD thing, not a "me" thing!  I keep admitting, however, that I have no evidence whatsoever for it being a DBS thing.  Or, for that matter, a surgery thing.  Why?  Because my depression didn't start creeping in until six years after the DBS surgery, which would constitute a huge delayed reaction at the very least!

K


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  500mg Sinemet CR daily.  I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.

 

"Be kind, for everyone you meet is fighting a hard battle." --Plato


#347 New normal

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Posted 16 July 2015 - 01:02 PM

Good point, Km.
Dx'd 6/13 @ 66 by MDS in office with sub linquil L dopa challenge. Carbidopa/l dopa 50/200 5x in 24 hr span.
Reaction to Amantadine 100 mg 2x per day,Discontinued, 4/15.
Normal DaT scan '13, normal MRI, '13 Second DaT scan, 10/14, normal.
Symptoms: 90% controlled: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy, full body dystonia seizures approx one per day, dysfunctional autonomic systems
Cherish your loved ones, make memories with them..........now.

#348 FlyBaby

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Posted 25 July 2015 - 02:44 PM

Kim;

Here's the link to my story of getting pulled over for DUI...........

http://forum.parkins...or-is-that-dwp/


Michael

Current age= 55

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 2013

 

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14 

 

"I will do what i can, while I can, and when i can't, I'll do something else"

 


#349 waruna01

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Posted 31 July 2015 - 05:49 PM

Mike, are you also on Zoloft like Kim? Has it helped so far?




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