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4-Year DBS Follow-up


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#461 she-ra

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Posted 21 October 2015 - 11:55 AM

Why isn't there (or is there?) an app?


Sheila ^_^

 

Current age= 62

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#462 KimAgain

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Posted 21 October 2015 - 01:00 PM

Well, there is an App that will allow you to monitor the battery levels, but  it's sort of hard to find (Michael found it) and, once you find it, you have to know a bit of technical stuff to be able to calibrate it!  That sort of counts me out of the game right there!!  I showed the App to my doctor and asked him to fill in the parts I didn't know... turns out, my doc is friends with the doc who wrote the App--so we had a great chat about that and, I left without either of us remembering to calibrate my App!  :oops:

 

Anyway, in the App store it's listed as dbsbe.


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side. Battery has sustained for 7 years and counting; but I anticipate needing a new one this year (2016).   Zero Sinemet CR daily (this took six and a half years to accomplish). 300mg Amantadine daily.  30mg Cymbalta daily.  SPS: Right. 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


#463 AB-Normal

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Posted 22 October 2015 - 01:04 AM

and the app is far from perfect, as it does not take into account that your voltage/stim levels may have changed since the battery was installed, or that they may change in the future.  It takes your current voltage/stim level and applies it was set in stone over the life of your battery. When we know for a fact, that our voltage/still levels are set in nothing more than "Firm Jello"...... and last I checked, mine were set in cherry jello.............. :razz:


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Michael
Current age= 56
First symptoms: 1975
Dx.
Parkinson's Disease, Apraxia
Med's
Carba/levodopa 25/100 ER 4 times a day
Amantadine 100mgs twice a day

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"
remember folks.................
KEEP CALM, and PARKIE ON...............

#464 zeke1109

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Posted 22 October 2015 - 09:50 PM

Hi Kim! Thanks for the DBS forum and this thread. I'm just starting out on my DBS journey, going to see dr about it next month. Just joined this site!


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#465 vigwig

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Posted 23 October 2015 - 12:34 AM

Hahahahahahahaha ROTFLMAOPIMP



#466 AB-Normal

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Posted 23 October 2015 - 12:47 AM

Hi there Zeke, welcome...............as you start on your journey, remember,  There is nothing taboo here... ask anything you want....................


Michael
Current age= 56
First symptoms: 1975
Dx.
Parkinson's Disease, Apraxia
Med's
Carba/levodopa 25/100 ER 4 times a day
Amantadine 100mgs twice a day

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"
remember folks.................
KEEP CALM, and PARKIE ON...............

#467 zeke1109

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Posted 23 October 2015 - 03:30 AM

Actually, I'm really curious as to what everybody here does with their time when dealing with parkinsons. I was already on disability when I got it so I'm still at home, not married. I try to keep my mind busy by reading books, surfing the net for interesting things, TV, rooting for the Mets, video games, etc. I used to do podcasting which was a lot of fun! If this isn't the place for  this conversation let me know and I'll move it there. :)

 

OH! Also, what sets off your Dyskinesia? It was either over medicating, stress, tired or even if I got too excited. Now it seems to  hit me randomly. I've backed off the Levadopa and it has stopped but of course now I'm trembling again. Also, slowness with shuffling feet. I can't wait till I can get this DBS, hope it works! Sounds like it's a long process though.

 

Then there's how my cognitive abilities are going downhill, that's scary also! Are we all headed to alzheimers or dementia at some point?

 

How do you sleep? My sleep went down to 3 hours a  night 2 years ago. It's gotten better after seeing a parkinsons sleep doctor. It was never a case of not being able to GET to sleep, it was waking up too early. Not because of any shaking either, just woke up! Ever since the Dyskinesia it's all changing. Right now it's 4:45am est and I'm waiting for my legs to stop shaking so I can go to bed. It seems to be a regular pattern right now of 4-6 hours of shaking and then the quiet period. Guess that will be going into the DBS journal I'm going to have to start, right? Is there anything else I'm going to need to do for DBS before they do it?


Edited by zeke1109, 23 October 2015 - 03:55 AM.

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#468 KimAgain

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Posted 23 October 2015 - 06:56 AM

Well, I have to say welcome Zeke, though I'm loathe to do it, I'd much rather our "club" didn't have to get any bigger--though, I know it will. :(  

 

Have your doctor's tried you on Amantadine?  This is a drug that seems to help me--it was tried as a long shot for dystonia in my case, but is actually best use for dyskinesia.  A Parkie friend of mine (he's only 27, poor guy) finds it very helpful with energy levels, too.

 

Sounds like you have a common Parky issue in the sleep department!  REM sleep disorder... Before DBS, I was down to about two hours a night.  Now, I manage about five, then, I can actually stay in bed (because I have no tremor now) and nap in and out.  Last night, was a rough night though.  My husband said to me this morning, "you were having a grand conversation with yourself last night weren't you?!"  He was right, I was, because I woke up aware that I was talking--something about parking like the Flinstones the first time and I'm not sure what I was saying the second time, but I know it was agitated and rather urgent and I was apologizing to Wayne for doing it, even before I'd stopped!!  So, post DBS, there are still some issues, but not nearly as many.

 

The DBS journey can, indeed, seem like a protracted one.   Best advice I have at the outset is:  Be patient--with the process and with yourself.  

 

Again, welcome to the Forum.

Kim

Oh... And, as far as keeping occupied, I do a little volunteer work, to make myself leave the house!!


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Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side. Battery has sustained for 7 years and counting; but I anticipate needing a new one this year (2016).   Zero Sinemet CR daily (this took six and a half years to accomplish). 300mg Amantadine daily.  30mg Cymbalta daily.  SPS: Right. 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


#469 AB-Normal

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Posted 23 October 2015 - 10:59 AM

Gooood moooorrrnning Zeke, and Kim;

Well I'm up, after my normal un-medicated 5hrs of sleep, I get 8hrs if I take a Trazodone...... So, after my DW gets up, makes my coffee, and breakfast, I'll grab a shower, and have her take me out and get some errands done. A rather typical day...........bleh..........

So Zeke, you mentioned that you were already on SSD when you were Dx'd with PD, may I ask what for? and also how old you are???? oh, and when you were DX'd with your PD??


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Michael
Current age= 56
First symptoms: 1975
Dx.
Parkinson's Disease, Apraxia
Med's
Carba/levodopa 25/100 ER 4 times a day
Amantadine 100mgs twice a day

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"
remember folks.................
KEEP CALM, and PARKIE ON...............

#470 vigwig

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Posted 23 October 2015 - 12:12 PM

Well, this is a lot of food for thought.  I also have REM sleep disorder. Once I dived out of bed in my sleep,  The dresser and the wall stopped me, 60 to 0 in no seconds.  I broke 3 ribs, punctured a lung deflating it and bonked my head.  I called 9-1-1 and told them I'd leave the front door open because I was going back to sleep.  My wife had already gotten up and gone to workout (4:30 a.m.).  Boy, did my side hurt..  After awhile I was asleep sort of when the EMS wagon puled up and they quickly started to put me on a gurney when I said "Hey, wait a minute. Let me get something to wear!"  because I slept in the pajamas that God gave me.  I could just see me being wheeled out like a calf for auction with all my neighbors looking quizzically at me and a guy in a cowboy hat running his shtick "who'll give me 20 cents/lb for this wreck of a specimen? I've got 21 who'll go 22? 22?..."  My neighbor checked with the guys left behind and called my wife at the Y to tell her that I was hauled away and we had a gas leak.  (It was the stove but it sounded ominous with me leaving in an ambulance).  She arrived at the same time as us but I do't rem,ember anything past the intersection with the loop until I came back to a room from surgery.  Cost me a week or so in the hospital.  This was all pre-DBS.  Usually I'm just kicking or punching at my wife or talking up a storm.  Occasionally I fall out of bed.  I lots of times wake up in the middle of a conversation or wake up in my dreams!  Ha, that's a good one.  Once I fell asleep in a circle of family and one was talking to me before he realized I was asleep..

 

This all goes with the 'vivid dreams' we have.  I would keep a journal but my handwriting isn't as good as a 4 year old and now it is even less legible.  Therefore everything I write has to be typed.  I used to type 35 wpm but arthritis and Swan's neck fingers has reduced me to hunt and peck.  It takes me forever to type anything and correct the typos.  This is to say a journal is out of the question.

 

Filling up my time? When the chariot swings low for me, they'll have to use long-term parking while I finish everything I have to work on.


Edited by vigwig, 23 October 2015 - 12:17 PM.

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#471 AB-Normal

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Posted 23 October 2015 - 01:44 PM

Thanks vigwig, that made me think of a fun song..... enjoy.............

The Auctioneer Song

www.youtube.com/watch?v=WaVTxiPBJgM


Michael
Current age= 56
First symptoms: 1975
Dx.
Parkinson's Disease, Apraxia
Med's
Carba/levodopa 25/100 ER 4 times a day
Amantadine 100mgs twice a day

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"
remember folks.................
KEEP CALM, and PARKIE ON...............

#472 zeke1109

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Posted 23 October 2015 - 05:58 PM

This is great! Several responses. I'm 51 and was on disability for knee and back  problems (degenerative disk disorder) plus clinical depression. The depression I went through in the 90's is worse than anything else I can imagine so anything after that pales in comparison, even Parkinsons. It was the chemical imbalance kind, there was nothing wrong with my life. That is now under much better control. 

 

I was  dx'd (learning the slang on here, lol) over 4 years ago. 

 

Sleep: I don't thrash around.....as far as I know anyway. I'm alone. My mother, who lives elsewhere, is my caregiver. She's 82. Lots of vivid dreams and deep sleep. It has improved so sometimes I do get 4 or even 5 now. I do need  naps sometimes. I went through a period where I would just fall asleep anywhere at anytime. That doesn't happen anymore. 

 

Tried Amantadine, among others, and they all kick my depression into gear. No go! 

 

I can't play video games anymore because my Dyskinesia kicks in. I love reading but my mind has always been a problem and now it's worse so I can only  handle a couple of pages in a sitting. Otherwise, I'd be reading all the time! :)

 

Btw, if you like baseball history check out my profile page for link to that podcast. Another link there for actors, authors and professors interviewed about the old TV show LOST.


Edited by zeke1109, 23 October 2015 - 10:08 PM.

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#473 vigwig

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Posted 24 October 2015 - 10:01 AM

I used to fish and it was peculiar how PD froze when I was concentrating on tying on hooks and sinkers, getting fish off the hook.  Before DBS I would look like Clem Kadiddlehopper sticking myself, cursing a blue streak and saying ow a lot.  I go catfishing and you have to be wary of the spastic little buggers.  I have been impaled many times.  Even the slightest poke you have to pinch to make it bleed so you can tell where it is.stings like the dickens.  One particular one required 6 stitches.  when they reach about 8 or 10 lbs, they are really strong and you have to hold them tight.   @zeke-- you may have to play video games that aren't so hectic.  Along similar lines, I finally had to quit driving.  And I still have 2 cars.  Bummerr.

vic



#474 zeke1109

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Posted 24 October 2015 - 11:02 AM

@vigwig yes, Grand Theft Auto is the worst culprit! lol.  In the baseball game hitting is too stressful but I might be able to pitch as I find that relaxing. As for driving, I'm pretty much done until I get the DBS done. My caseworker can drive me to dr appts or if he can't then he has taxi vouchers I can use. On a side note, I have meals on wheels deliver food to me. Costs only $100/month and you get lunch/dinner daily (except weekends) and milk once a week. The food is healthy and good, I've actually lost 25 lbs!


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#475 vigwig

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Posted 25 October 2015 - 01:56 AM

@zeke--- I'm glad you're fixed up.  Hope your DBS works for you.

@Abbey Normal.  Glad to be of service.  Hope normal happens for you.

@Kim-  I hope you find nirvana.  He's a good man,keep him close hug him a lot give him lots of kisses snuggle with hm tell him you love him

 

At the rest of you I'm sorry but I am puling in my horns, taking my marbles and going away. Thank you for the respite along my way.

victor lopez, a.k.a vigwig



#476 zeke1109

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Posted 25 October 2015 - 08:31 AM

What kind of exercises do you do?

 

I saw a study that showed it isn't necessarily exercise but the motion that helps. I've been adding my own motion exercises to what my PT gives me to do, which have more to do with strengthening than motion. Especially for my  hands! Nothing feels better than the motion one's I do, the physical exercises don't do as much. What do I mean when I say "motion"? When they give me hand weights (only 5 lbs) instead of doing just the physical I also start moving my wrists around left, right, forward, backward and rotate in a partial circle. Same with something they call a powergrip web, instead of just doing power gripping I try and flip it around with my hands back and forth. I think for the legs walking is perfect not because of the physical exercise but that you're doing the motion over and over.


Edited by zeke1109, 25 October 2015 - 09:58 AM.

Cliff

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#477 KimAgain

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Posted 25 October 2015 - 04:02 PM

Let me see now... 

 

I move just about every thirty minutes and, I read the study you are referring to also--I totally agree with it!  I do Tai Chi, I have a stationary bicycle, but keeping "active" (as I have all weekend--I'm fit to flop!!) is, in my view, by far the best approach.  It seems I can't do anything for a protracted period  of time--not walking, sitting, or standing!  So, I engage in one or the other of those things every thirty minutes or so.

 

Been a busy weekend and promises to be a busy two weeks ahead, so if I'm scarce, I apologize in advance!!

 

Kim


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side. Battery has sustained for 7 years and counting; but I anticipate needing a new one this year (2016).   Zero Sinemet CR daily (this took six and a half years to accomplish). 300mg Amantadine daily.  30mg Cymbalta daily.  SPS: Right. 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


#478 Woody

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Posted 25 March 2016 - 11:47 AM

Hi All,

I am a caregiver.   My husband is 53 diagnosed 10 years ago with PD.    He had DBS end of 2012 implanted in the GPI area, not STN, and with normal Activa battery.

 

My question is.     Has anyone anything they can tell us regarding the Activa RC.

His battery is not lasting longer than 2 years, possibly a few reasons, a short circuit at one contact the first year, and higher levels of stimulation the 3rd year, but we are next month going for the 2nd replacement battery and are contemplating whether to have a rechargeable fitted instead.   Aside from the general anaesthesia, the flight times and general fatigue that comes from having these battery changes every 2 years, we felt maybe the RC would be a better and easier thing for him long term.

 

Does anyone have any comments - pros/cons on changing to this rechargeable type versus staying on status quo.  We're particularly interested in the day-to-day use and any difficulties people may have experienced.  More specifically we're wondering about frequency and length of recharging cycles (he runs at about 4.5-5 volts, 180hz and 60 pulse width for his therapy), any "accidents" (i.e., letting the unit discharge too far) and any defects people may have experienced where they had to go back to hospital to replace the battery before the supposed 9 years of service life were over.

 

 

 

Cheers

Woody



#479 Daven

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Posted 25 March 2016 - 07:36 PM

Woody,

I don't have DBS but I do have an SCS (Spinal Cord Stimulator). It's the same technology but installed in a different location. I'm a heavy user as my stimulator is on 24/7 and my programs are similar to the one you are running. My voltage is about half of your settings but I cycle through multiple programs within a program group that stimulates both my left and right side. I've had my stimulator for 6 1/2 years and yes it's the rechargeable version. I've been charging twice a week from 2 to 3 hours for each session since it was implanted. Charging is a pain but you adapt and work it into your schedule. It's my Wednesday night and Sunday morning thing. Everyone that I know that has an SCS usually has to recharge every 2 to 3 weeks for a couple of hours. I am a heavy user. My doctor and I thought this thing was going to die last year but it doesn't seem ready to give up the ghost. When recharging, I attach the charge to a belt which is then placed over my battery. I can move about the house while I charge. I have found that the more active I am, the longer the charging session. If you have any questions, feel free to ask. Hopefully someone with a rechargeable DBS will chime in

Dave
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#480 KimAgain

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Posted 29 March 2016 - 08:25 PM

Woody,

 

I read your post with interest and, I hope you don't mind, but I decided to share it with Ken Stone, my Medtronics rep.  I sent Ken a copy of your post in e-mail and, today, received a reply.  After apologizing for taking a while to respond (he's been wildly busy here lately) and addressing an e-mail I had sent him (in which I told him that I'm happily in my "sweet spot!") he said this...

 

Relative to providing feedback on the Forum post, I believe it would be inappropriate coming from me. I so wish that the patient would ask to speak with their local Medtronic Therapy Representative. The patient or caregiver can also call Patient Services at (800) 510-6735 and likely get many questions answered.

 

Ken has never steered me wrong and has always responded to my questions in a professional and direct way--so, if it is any help at all, I would suggest a call to Patient Services as Ken advises.  Ask them all your questions--as I feel sure they will be able to give you all the pro's and con's of rechargeable vs non-rechargeable batteries--and anything else you'd like information on.

 

Good Luck to you and, please let me know what your husband decides if you can find time--because I know how busy a caregiver's life can be (and, I mean that sincerely, not flippantly, I promise).

 

Kim


  • Woody likes this

Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side. Battery has sustained for 7 years and counting; but I anticipate needing a new one this year (2016).   Zero Sinemet CR daily (this took six and a half years to accomplish). 300mg Amantadine daily.  30mg Cymbalta daily.  SPS: Right. 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





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