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4-Year DBS Follow-up


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#221 lethe

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Posted 31 December 2014 - 08:27 AM

(reposted from another thread)

 

 

Today's word is emotional incontinence ; or pseudobulbar ; or involuntary emotional expression disorder (IEED).

 

Last winter while I stayed in an infirmary there was a gentleman of about 65 who also had Parkinson's. He was in good shape as he was a kick boxer when he was younger and he just walked a little stiff and had mild tremors. Every now and than he would walk the halls crying loudly.  Apparently he lived with his mother, who had died in the last year. Somehow this crying seemed to last longer and was a little out of the ordinary. Half way thru my stay my sister (who i really don't get along with) informed she had to give my beloved dog away  and I felt great sadness but coud'nt have a good cry as I was sharing a room, but every now and then I would fight back tears.

 

This  summer  I finally  was connected to a good place to live. Over time I noticed that I would sometimes feel teary-eyed over stupid, rather superficial things, like something I saw on TV. I knew that PD affected the emotions but this seemed odd.It could also be caused by lack sleep etc.

 

Anyway, I came upon the above words. Pseudobulbar is when someone is easily moved to tears, often in sllightly inappropriate situations. Some people will laugh inappropriately, like at something sad. It affects a few neurological diseases, including PD.

 



#222 KimAgain

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Posted 31 December 2014 - 09:13 AM

Hey, earlier this evening, I got all emotional and choked up over a flippin TV commercial. I mean, how crazy is that? I don't know why it happens, it just does. Doesn't matter if I'm watching TV or listening to the radio.......or interacting with other people..........al of a sudden, there I am.... an emotional wreck......... and suddenly, just as fast as it happened, it's over........

Yup, yup, yup!  I did it reading your post, purely out of empathy!!  My MDS tells me it is totally normal for both DBS and PD!  There is even a medication for it... I mentioned it to my MDS (more for his edification than anything) and he gave me a prescription, but I asked family and friends if they saw this emotional component to me as a problem and they all said no.  It's not as if I go into a full on meltdown that can't be controlled or anything, I just get teary eyed over the silliest things.  So, I never filled the prescription.  (Probably a good thing, too--the doc said it was uber expensive and he didn't know if insurance even covered it!)

 

For the DBS record, this behavior has been a little more frequent since DBS surgery, but in the years since I had surgery, it has not continued to progress.


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.  

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


#223 KimAgain

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Posted 31 December 2014 - 09:20 AM

 

(reposted from another thread)

 

 

Today's word is emotional incontinence ; or pseudobulbar ; or involuntary emotional expression disorder (IEED).

 

Last winter while I stayed in an infirmary there was a gentleman of about 65 who also had Parkinson's. He was in good shape as he was a kick boxer when he was younger and he just walked a little stiff and had mild tremors. Every now and than he would walk the halls crying loudly.  Apparently he lived with his mother, who had died in the last year. Somehow this crying seemed to last longer and was a little out of the ordinary. Half way thru my stay my sister (who i really don't get along with) informed she had to give my beloved dog away  and I felt great sadness but coud'nt have a good cry as I was sharing a room, but every now and then I would fight back tears.

 

This  summer  I finally  was connected to a good place to live. Over time I noticed that I would sometimes feel teary-eyed over stupid, rather superficial things, like something I saw on TV. I knew that PD affected the emotions but this seemed odd.It could also be caused by lack sleep etc.

 

Anyway, I came upon the above words. Pseudobulbar is when someone is easily moved to tears, often in sllightly inappropriate situations. Some people will laugh inappropriately, like at something sad. It affects a few neurological diseases, including PD.

 

I think it is all relative to how one was before the onset of PD symptoms.  If, for instance, you were a person who prided themselves on keeping their emotions well hidden and "controlled," and you now find you cannot do this, then it may be an issue--most especially if it is an issue to you.  But, if you have always been a sensitive sort of soul and you have become just a little more so (as in my case), perhaps it is not an issue at all.  My family and friends tell me that, without my super sensitivity, I would not be the same person.  So, sometimes, when I see a heartwarming story about a rescued puppy or something and the tears start rolling, no one says anything!  


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.  

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


#224 KimAgain

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Posted 31 December 2014 - 09:43 AM

Thanks, Kim, you are a sweetheart!!  You have a lot of wisdom to share and are very comforting. I was thinking today that I would love to write a book that was a compilation of DBS patient experience because I was so dreading the surgery and I am sure I was not the only one. However , many times I have felt like I am the only one who feels a certain way. I know that  there are many different outcomes of the surgery but it helps to know what other people have experienced.The docs  may be experts in their fields but sometimes they aren't very comforting. I am sure that my anxiety attacks and crying are from the overstimulation and from taking too much sinemet. The first time it happened  to me I went to the emergency room because it was so frightening. The second time it happened, I was at the Parkinson's clinic and my doctor saw it. However, neither place tried to connect it to the programming or sinemet. Doctors don't like to say much about symptoms unless it has been proven by research. But I know  that patient experience is as valuable as any research and  I would never negate anything someone has experienced just because it is not experienced by a statistically significant number of people. Anyway, I am happy to have found you and I hope   that I can also be a help and support to you in some way.    

When I was first switched on and run through the paces--from one extreme to another--I burst into tears twice.  And, the doc was reassuring me that this was "OK, I'll adjust you out of this in just a second" and, he did.  Whatever adjustment he made, turned the waterworks right off.  The feeling of "panic" (for want of a better word) also happened, but he fixed that, too.  

 

Now, I know to expect that it might happen when I turn up myself... so, I ignore it.  But, one time, out of sheer desperation, I decided to do something drastic, because I was getting nowhere with a current setting.  I have an A and a B setting and, was on the A... it was a weekend and I wasn't responding at all well to that setting, despite a month of making very, very slow adjustment creep, so I decided to change to the B setting.  My husband was out of town and, I well knew what could happen if I made a big change like that, so I called a friend.  She came and sat with me and I switched off for an hour--to clear the field, so-to-speak--then, I switched to the B setting.  I suddenly started sobbing and tremoring and had a good melt down.  But, I toughed it out for an hour.  In the end, my friend was begging me to switch it back and, I did.  I made an emergency appointment for the next day to get an adjustment--told my MDS what I'd done, and he scrapped the B setting altogether.  

 

The one thing I do know:  My doc will never give me the capability of making an adjustment that will kill me!  So, a little meltdown won't be fatal, even if it is embarrassing.  


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.  

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


#225 FlyBaby

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Posted 31 December 2014 - 04:47 PM

 

But, if you have always been a sensitive sort of soul and you have become just a little more so (as in my case), perhaps it is not an issue at all.  My family and friends tell me that, without my super sensitivity, I would not be the same person.  So, sometimes, when I see a heartwarming story about a rescued puppy or something and the tears start rolling, no one says anything!  

That's it exactly........... I've always been a bit empathic......... and now? much more so. Is it a problem? nope......


Edited by AB-Normal, 31 December 2014 - 04:50 PM.

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 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

 

 


#226 KimAgain

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Posted 07 January 2015 - 09:10 AM

How are you coping Michael??


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.  

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


#227 Linda Garren

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Posted 07 January 2015 - 09:43 AM

That's it exactly........... I've always been a bit empathic......... and now? much more so. Is it a problem? nope......

 

It's a wonderful trait, Michael.  Especially for a man.  I find your posts comforting and caring and am glad DBS has not taken that or your personality away.  When you were recovering from surgery, your humor and positive attitude were greatly missed, though there are several other men on our site who are also sensitive to and empathic to others, and I find it very endearing and helpful.  I'm very, very old fashioned when it comes to this sort of thing.  I appreciate pre-feminism in many ways--the traditional roles of men and women being one big one.


Edited by Linda Garren, 07 January 2015 - 09:44 AM.

Age 67.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions within the various institutions.

Diagnosed with PD summer 2014. 

 

 

 

 

 


#228 FlyBaby

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Posted 08 January 2015 - 11:13 PM

 

Posted Yesterday, 06:10 AM

How are you coping Michael??

Well....... I was doing ok, until yesterday afternoon when I fell over backwards here in Tampa, at the airport.......... yup, sat down to give my knees a break... and over I went...... SPLAT, on my back........... I'll be ok though.......... I think


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 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

 

 


#229 KimAgain

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Posted 09 January 2015 - 08:52 AM

Well....... I was doing ok, until yesterday afternoon when I fell over backwards here in Tampa, at the airport.......... yup, sat down to give my knees a break... and over I went...... SPLAT, on my back........... I'll be ok though.......... I think

 

You were crouching?  Was it a balance issue, or something else do you think?  Have you had any dizziness, or light headedness?  TALK TO ME MICHAEL!!  (Oh, you did... I've been having a problem with an unwell doggie, I'll try you today when I'm back from the vet again, or you can try me when you are free.)


Dx 2004, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  500mg Sinemet CR daily.  

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


#230 New normal

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Posted 09 January 2015 - 04:39 PM

Tick tock....tick tock..Michael?
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily. Amantadine 100 mg 2x per day.
Normal DaT scan '13, normal MRI, '13 Dx'd w/l dopa challenge in office by MDS
Second DaT scan, 10/14, normal.
Symptoms: significant tremors rt & lft side, rt leg drag whn tired, balance, slow movement, cognitive/ speech issues, apathy
Live, laugh, and be grateful. :) "ACCEPT, ADAPT, AND MOVE ON." :)

#231 FlyBaby

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Posted 11 January 2015 - 10:23 PM

I'm ok.........  yes, it was a balance issue.......... No, I didn't hit my head...... I landed square on my back and shoulders. Basically, I sat on a large (approx 10in diameter) pipe, about 3 feet high. The kind you see around the corner of a building to keep it from getting hit by cars.....

Well I tried to sit on it to give me feet a break, and as soon as I did. I went over backwards...... fell about 3 feet on to the pavement, landing on my back/shoulders..... I did (without thinking) tuck my chin to keep from hitting my head. I will say..... my shoulders and back are NOT happy with me.... they hurt big time.

I was able to complete my trip though....... including a rather windy and icy drive from Chicago, down to the middle of Indiana to pick up a vintage radio, and then back to Chicago the next day to catch my flight home...........

 

Talk about a whirlwind trip.......... Wed, flew from Seattle to Tampa....... Fri. From Tampa to Chicago, then drove 130 miles to pick up my radio....... Sat. drove 130 miles back to Chicago in time to fly back to Seattle........ Got into Seattle at 6PM DW picked me up at the airport, we went out to dinner......and them finally........ HOME.

 

Today, I sat and relaxed.... I did nothing, nada, zilch.......... and tomorrow? other than maybe running the dishwasher? I plan to veg.........and relax, and take some time to take care of my battered body.......... Oh, yeah, almost forgot...... I gotta call Medtronics.......... 


Edited by AB-Normal, 11 January 2015 - 10:29 PM.

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 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

 

 


#232 Linda Garren

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Posted 11 January 2015 - 11:41 PM

Quite a trip, Michael!  So sorry you had that fall.  It must have been a shock in addition to hurting.  Sure hope you are feeling better from it soon.

 

And have fun running the dishwasher!  Other than that it sounds like you'll have a nice day doing nothing, and then rest afterwards.  :-)


Age 67.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions within the various institutions.

Diagnosed with PD summer 2014. 

 

 

 

 

 





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