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4-Year DBS Follow-up


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#361 KimAgain

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Posted 15 August 2015 - 01:45 PM

Since DBS, I don't get near as upset and angry at the outside world, and I'm also much less confrontational as well,. According to my DW that is.........................

Good Grief... you mean you weren't always a sweetheart?  Well, I'm shocked!


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  200mg Sinemet CR daily. 200 mg Amantadine daily.  100mg Zoloft 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


#362 siak

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Posted 16 August 2015 - 09:16 AM

Hi All-- I haven't been on the forum for awhile. I just thought it might be of some good to add another perspective to the discussion. I have been on antidepressants for most of the past 20 years, except when I was pregnant. When I look back at my life, I feel the depression was worse when I felt like I didn't have any control over my life and when I felt like my life had no purpose or meaning and that I was not worth much to anyone. It went away when I decided to go back to school and start another career. BUt  when the PD got so bad that I had to quit, I felt all those feelings again.  After the DBS surgery, my life seems so much worse because I can't seem to get anything accomplished now without feeling physically in pain and and with no energy. And whenever I go to  the Parkinson's Doctor, they keep telling me how good I look and that they would never know by looking at me that I had PD. So there is a huge difference between what I feel and what they see. It makes me feel like I am ungrateful for the improvement. I am writing all this to say that, possibly, some of the depression felt by post DBS patients (and even PD patients who haven't had DBS) may be the feeling of "loss of control" over their lives. This may be  especially true of the "young onset" PD because they may have responsibility for jobs, families, households, etc. and the feeling like they can't take care of any of these areas anymore is devastating.  



#363 KimAgain

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Posted 17 August 2015 - 08:03 AM

Hello Siak!  Thank you so much for sharing your point of view--which, of course, being a fellow snowflake, I have experienced some aspects of, but not all.  I would like to address at least one thing that, I have noticed, seems to impact just about all Parkies and, it seems to me, is particularly troublesome for so many of us with DBS:  Fatigue.  

 

Firstly, there is the issue of DBS making us "look" so much better than, sometimes, we feel!  I myself have run into this a lot... "But, you would never know you even have Parkinson's!" Or, "...But, you look so normal!"  (What is "normal," anyway?!)  And, like you, I hear this from my doctors as much as from anyone else!

 

So, it seems to me, some of the questions become:

  1. Do we feel as tired as non-DBS Parkies, or more so, perhaps?
  2. If we are, indeed, just as tired as other Parkies in our similar stage of disease progression, does this mean that DBS does not address fatigue in general, or that we simply notice it more because the other symptoms are so diminished?
  3. If, in fact, we do have more fatigue than non-DBS patients, has DBS in some way caused this?
  4. How do we get our doctors to take this issue as seriously as it, apparently is, to so many of us?
  5. Is there any way to combat fatigue on our own?
  6. Does fatigue cause depression, or (if there is any correlation at all) is it the other way around?

I could probably think of more, but I'm sure I've made my point.  Fatigue, it seems to me, is an issue for DBS patients.  But, the measure of something as vague as levels of fatigue is so subjective, that it is very difficult to get a handle on what constitutes "abnormal" levels of fatigue from, well, the "abnormal-normal-abnormal" levels the average Parky experiences!!

 

Pain is much like that I suppose. So, taking the pain measure as a model, how about we start rating our levels of fatigue on a 1 to 10 scale?  Something like this:

 

  1. A little tired, but not enough to seriously impact functioning.
  2. Somewhat tired, but able to do most of the things I need to do.
  3. Occasionally, I need short rest breaks during my "work" day, due to fatigue but, otherwise, I'm O.K.
  4. I am tired to the point of needing to rest 10% - 15% if my "working" day.
  5. Up to 35% of my day is spent in resting or seriously slowing down my activity (when I need to be busy) due to fatigue.
  6. My fatigue levels are impacting my daily living--I am tired 50% of the day.
  7. I require rest breaks frequently, throughout the day and evening.  I am fatigued at least 60% of the time.
  8. I am extremely tired for a considerable portion of the day and require frequent rests--to the point that my quality of life is impacted.
  9. Fatigue is a serious issue, I am exhausted a good portion of my day, exercise, sleep--nothing seems to help.
  10. Exhausted and barely able to function most of the time--I feel the quality of my life is suffering to a significant degree.

O.K., so I'll readily concede, that someone else could come up with a much better scale, but, this is just a quick list I whipped up to give an idea.  And, based on that idea, I'd say that, as a general rule, my personal levels of fatigue fluctuate between a 3 and a 7 with the occasional days where 9 would be the score!

 

Perhaps if we could come up with a good 1 to 10 rating that we can all agree upon, then, we could use that score to take to our doctors to show them where we are, illustrate that other Parkies feel very similar things, and ask for constructive input at the very least.

 

Thoughts everyone, please?

Kim


Edited by KimAgain, 17 August 2015 - 11:05 AM.

Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  200mg Sinemet CR daily. 200 mg Amantadine daily.  100mg Zoloft 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


#364 mickirose

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Posted 17 August 2015 - 09:22 AM

Dear Kim, as usual you hit the nail on the head. At least for me you have. It has been a month now since my DBS surgery and I am still adjusting to the new me. I no longer have tremors or dyskinesia, I can do my Tai Chi with only a slight tremor on occasion. I can read a book, sitting relaxed in a chair.  I have recently started cooking meals and helping with the housework (much to my DH's chagrin ) as I have a higher level of expectations than he does! 

 

All of this sounds great and my MDS and family thinks I am great but what they don't get is that by 11am I am totally caput!  I have to sit or lie down as I don't have an ounce more to give.  After about 1/2 hr. I try to start up again but with varying degrees of success . I guess I would score me maybe a 5.  I should look at this as part of my improvement since DBS as before I rarely could score higher than a 7. 

 

I am having some issues with my lower back and speech but that's another thread in the works.  I realize I am only at the beginning of the DBS recovery but I lack patience and want to be whole again although I know that is not possible.  I will stop whining and get back to what I want to accomplish today before I peter out again.  Micki


64 yrs.old   Presented with R hand tremor 2002 Dx'd 2004  Multiiple meds gone through and tossed due to adverse side effects . Presently on Sinemet 1 1/4 25/100 7x/24 hrs., Paxil, lotrel, Lipitor,Prilosec. Have moderate bilateral tremors, rigidity, bradykinesia, moderate dyskinesia during "ON" time, poor fine motor and poor manual strength esp. on left. Slight softening of speech and pronunciation. Handwriting and computer use issues. DBS in near future.  Nana of 4 little beauties under 8 and 1 soon to arrive! Tai cHI for health and balance


#365 FlyBaby

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Posted 17 August 2015 - 12:24 PM

Micki;

Remember, that DBS is not a recovery, but another "treatment"....... as behind the scenes, the Parkinson's continues to march forward relentlessly. It also allows us to drastically reduce our need for as much medications.  As the PD moves forward? we bump up our settings and/or increase our meds.... as we live with a crazy balancing act, forever questioning ourselves...... Do I bump my stim up another .1v? or do I need to add maybe a half a pill? or maybe switch to the controlled release pills?....... For those of us with DBS, this becomes the un-ending set of questions.......

That is why I firmly believe that we need our own forum here.... To be able to bounce these and other DBS specific questions back and forth.


Edited by FlyBaby, 17 August 2015 - 02:36 PM.

Michael

Current age= 55

First symptoms: 1975

Dx.

Parkinson's Disease, Ataxia

 

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

current settings:

2.0v Left, and 3.2V Right  and 3 - 25/100 Sinemet CR per day.................

 

"I will do what i can, while I can, and when i can't, I'll do something else" (that is.... unless I've already gone "squirrel".... and went looking for someone's horse......)

 


#366 siak

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Posted 17 August 2015 - 06:55 PM

Yes, I agree with you all about all the points you made. I find it so interesting that we Parkies and DBS people have so much in common experiences, yet when I talk about the problems and concerns with the medical people, they act as if they never heard it before!

 

Michael-- I am also in the circular pill vs more voltage cycle. Very frustrating!!

 

Kim-- I am mostly a 10 on the tired and fatigued scale all the time since surgery, but before I would have to say that I was a 5 most of the time. There are some circumstances I had which probably contributed to the fatigue that others may not have. In the 2 years before the DBS surgery, I had 2 knee surgeries, shoulder surgery and gall bladder removal along with a string of UTIs  and 2 bouts of bronchitis that   really wiped me out.  Then, on the emotional aspect, I lost my job due to lay off and  ended up in a labor dispute. I am certain that My body didn't have "a snowball chance in H---" of recovering normally after that. By the way, I really like the scale you came up with. Would you mind going to med school and becoming a doctor so that we have someone who understands how we feel?  :razz:   

 

Mickirose-- I will say it even at the risk of sounding like I am brushing off your symptoms (like the doctors have been doing to us)-- YOu are in the very beginning of recovery from the DBS so be patient. No pun intended.  I am NOT trying to brush aside your feelings; believe me I know how frustrating it is to feel like you just  want to be well but you feel like it is taking longer than anyone else to recover. My surgery was just a week apart from Michael's and he seems to have really bounced back very quickly. However, it seems like I am not recovering at all. Also, Mickirose, I have had a lot of lower back pain since the surgery just as you have, but I can seem to get any relief from it.  

 

And I really agree with Michael that it would be nice to have  a DBS forum.  What ever happened when we emailed the webmaster? I never received an answer, did anyone else? 



#367 waruna01

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Posted 17 August 2015 - 10:03 PM

Sierra Farris maintains a very important blog about DBS. She says it takes at least 6 months to achieve best results from DBS provided best electrodes are selected. If you are having fatigue, this could be a programming issue or being under medicated. I would recommend that you go see her in Colarado if you can to get a second opinion. My dad was programmed by her when he got worse after DBS. She is one of the best programmers out there. http://www.dbsprogra...ry/programming/

#368 mickirose

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Posted 18 August 2015 - 10:20 AM

Dear waruna, thank you so much for your link to Sierra's blog and articles.  She sounds truly amazing!  I am overwhelmed with the amount of info. that she shares. I will definitely research her blog as there are so many different aspects to study.  I am only at the beginning so will give it some time for now. Thanks again, Micki 

 

Siak, I know I am impatient.  Sorry you have had such poor results from your DBS. I just went to the link sent in by  Waruna about Sierra Farris's impressive blog about DBS.  She sounds like an angel for DBS patients. Check her out and also her books including the Davis Phinney book "every victory counts" amoung several others. She just may be who you need to connect with . She is affiliated with the Swedish Medical Center in Denver and is the director of the DBS Movement  & Neuroperformance Center of Denver.

 

No I haven't heard back from the forum either regarding DBS forum. Micki


64 yrs.old   Presented with R hand tremor 2002 Dx'd 2004  Multiiple meds gone through and tossed due to adverse side effects . Presently on Sinemet 1 1/4 25/100 7x/24 hrs., Paxil, lotrel, Lipitor,Prilosec. Have moderate bilateral tremors, rigidity, bradykinesia, moderate dyskinesia during "ON" time, poor fine motor and poor manual strength esp. on left. Slight softening of speech and pronunciation. Handwriting and computer use issues. DBS in near future.  Nana of 4 little beauties under 8 and 1 soon to arrive! Tai cHI for health and balance


#369 siak

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Posted 18 August 2015 - 11:28 AM

waruna  and micki-- Thanks for the website-- I had seen it long ago before my surgery but had forgotten about it because she is  so far from where I live. I agree she  seems to be an angel in disguise. I have not investigated all of the website since there is a lot to explore but now that you have reminded me about it I will certainly look it up now..  I hope you are doing well with the recovery and don't have the frustration with it for too much longer. SOme people bounce back quickly and others take a long time(ME), but don't get discouraged. Also, micki, you said you had back issues-- I have developed low back pain also since the surgery. Have you had any success with the back pain? Have you been to anyone who has helped? I tried accupuncture ---has anyone else tried?? --- I had to stop because it is 100 dollars a session and my insurance won't cover it.  



#370 FlyBaby

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Posted 18 August 2015 - 12:59 PM

Siak

No, I still have crushing bouts of lower back pain........ Some days it's it's all I can do to get from the bed to my chair..... I do believe that it's a Parkie issue, as I know a lot of us have problems with it, regardless or DBS or not. Sinemet never helped, and DBS hasn't either.........................


Michael

Current age= 55

First symptoms: 1975

Dx.

Parkinson's Disease, Ataxia

 

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

current settings:

2.0v Left, and 3.2V Right  and 3 - 25/100 Sinemet CR per day.................

 

"I will do what i can, while I can, and when i can't, I'll do something else" (that is.... unless I've already gone "squirrel".... and went looking for someone's horse......)

 


#371 waruna01

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Posted 19 August 2015 - 08:52 AM

If you are not completely satisfied with DBS, stop wasting time with accupuncture, and go see someone like Sierra. There is very few out there with her caliber who can get into the forensics of DBS. Think of it as a vacation to Colorado. Acupuncture can also damage DBS wires. Please be careful. I also highly recommend this book for pre and post DBS patients

 

http://www.amazon.co...asap_bc?ie=UTF8



#372 siak

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Posted 19 August 2015 - 09:42 AM

Waruna-Thanks for the link to the book. It looked great and I have ordered it already. As for the accupucture, I was getting it for knee and back pain, not for DBS. Before I went, I asked my primary care doc, my Movement disorder  specialist, and the DBS programmer if it    was ok for me to have it . They all said it was ok, just no needles where the wires were. Plus, I made sure that the practicioner knew my health history. I am not saying this as  endorsement, but I did investigate thoroughly before I went to the appointment.  I had talked to several of my friends who said that they were helped by the treatment, but of course, none of them were DBS patients; they were going for back and knee pain.    



#373 waruna01

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Posted 19 August 2015 - 10:47 AM

If the back pain is DBS induced, it should go away when the system is switched off. If you go to a specialist like Sierra, they will usually ask you to do a post DBS MRI to see if there are any complications from the surgery to rule that out and check for electode placement. Next is if you are on best electroides and sinmet dose is adequiate. if you are low on sinmet, that can also cause muscle cramps. I highly recommend that you go see a professional soon. 



#374 siak

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Posted 19 August 2015 - 04:52 PM

As for myself, I have been to so many different doctors since December that I can't even remember all of them. I don't know about the experience  of  the others who said they had back pain since surgery. It may not be directly related to the DBS,  but may be due to other factors such as not exercising like I used to because of no energy and the long recovery that I have needed since  the surgery. Kind of a vicious cycle--fatigue and tiredness causes no exercise and no exercise causes back pain and tiredness. I will say that the DBS was supposed to help with stiffness and rigidity( at least that is what the specialist told me) and I  feel stiffer than ever after the surgery. But the thing it did do for me which I am very grateful for is that I don't freeze in doorways or crowds anymore.. Anyone who had or has that problem will know how terrible it is to not be able to walk. I find it interesting that DBS is not promised to help walking but is supposed to help stiffness. But I have had the opposite experience.  



#375 waruna01

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Posted 19 August 2015 - 06:30 PM

You definitely need help soon. Your other symptoms sounds like they are DBS induced which can be reversed. You definitely should not have more rigidity after DBS. Go see Sierra for their DBS troubleshooting clinic. Plan to stay there for a week or two. I can assure you it will be worth it. Call this number 1-303-781-0511 if you need to get in touch with them.

#376 KimAgain

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Posted Yesterday, 03:40 PM

Another little update on my DBS...

 

My battery is going strong.  Actually, they estimated 3-5 years when they put it in and, I'm currently into my 7th year, so I have had way more service from this battery than I was promised.  But, as strong as it's going, it's still going!  I'm hoping I will last until after Christmas--fingers crossed--my MDS tells me to contact him when the level is 2.70... it is currently at 2.85.  My Medtronics rep tells me that, once the battery reads 2.60, there is about ten weeks useable life left in it.  It's hard to gauge the amount of time an individual battery has, however, because usage affects it so much and, also, because the levels drop more quickly as the battery reaches the end of its useable life.  

 

My Sinemet use has been reduced from three pills a day (300mg) to two (200mg).  However, getting here wasn't so easy!  It took a little juggling and a lot of patience, but we managed to reduce the dose of Sinemet by turning up until I was a teeny bit over stimulated and, then, adding Amantadine to my drug regime to pick up the slack.  I am well into my sweet spot again and very comfortable.  The Amantadine seems to have relaxed some rather tight muscles and given me (maybe it's placebo--but, I'll take it anyway!) a little more energy.

 

So, all those with DBS out there--especially newbies--be persistent, be consistent, be patient, and be well!

Regards,

Kim


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral STN placement; wires to one battery - on my left side.  200mg Sinemet CR daily. 200 mg Amantadine daily.  100mg Zoloft 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


#377 Discovery

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Posted Yesterday, 05:01 PM

Hello Kim,

My husband has a Medtronic Pacemaker. The way you're describing the battery life for your DBS sounds exactly the same as the Pacemaker.

I really never put two and two together that these devices run similar.

Glad you had a great report and feeling and doing well...

Cheers
Discovery
First symptom noticed was right arm bent at elbow - February 2014
Right arm and leg tremor, no arm swing - June 2014
Diagnosed with ET by GP - July 2014
Diagnosed with Early Parkinson by MDS - April 2015

Meds
1 mg of Rasagiline per day (Monotherapy)

Daily exercise is my true medicine
Yoga, Jogging/Power walking,Free weights/equipment, Bollywood dancing




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