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Appala

DBS Benefits & Un-Benefits

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RNwithPD    168

Otolorin,

I have been a nurse in a cardiovascular step-down unit and a post-surgical unit for 8 years. For the past two years I have been wearing a button on my uniform that says, "I'm Not Nervous, I Have Parkinson's." In the early years of the disease, it mainly only affected my ability to control a computer mouse and to write. Occasionally a patient would ask why I was nervous or shaking. Over time it got to where about 50% of my patients or their family members would ask questions every shift such as: "Why are you so nervous?" "Why are you shaking so much?" or "How long have you been working here?"  Whenever they asked this last question, I would question why they asked. To which they would respond with "you seem nervous."  So, my wife ordered the button for me in part, because it would help allay the fear of some of my patients that they had an inexperienced nurse, and also inform the patients so that they wouldn't assume the worst without ever asking (e.g. that I was a drunk or druggie.) 

Because I have developed dystonia in my right leg that interferes with my ability to walk, I have quit working as of Friday and will be going on disability. Not something I wanted to do, but my symptoms have become a patient safety issue so it's time for me throw in the towel.

Kevin

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Linda Garren    750

Kevin, I know this has been a hard decision for you to make.  You are not alone, as many of us had to come to that same decision, and it was surely not easy.  There is great relief, however, in not having to push beyond what a Parkie is able to do comfortably and safely.  And there are many pluses to slowing down and seeing all the other things in life that we still can do and enjoy.  We're here for you, and hope you keep us up on this part of your journey. 

 

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otolorin    30

RNwithPD,

I thank you for your response,your type of button might make some of my patients a little uncomfortable or doubt my ability to be able to care for them.Especially the new ones.The old ones who already knew my abilities before I  was diagnosed will probably not mind.I hope you'll get the right combinaton of meds and exercise to treat your dystonia,so that you can walk better.I have slight gait problem too,but exercise helps.It is really a hard decision to quit a job that you love.I am thinking of going back to work,after being on temporary disability for few months,but really don't know what to expect.I guess I am already beginning to stress myself over this.I am sorry that you decided to quit on Friday,but you were at least able to work since the early days after diagnosis.I noticed you are planning to get DBS surgery,so that might help with the dystonia too I  guess.I wish you all the best with your surgery and thanks again for sharing your job experience.

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Appala    8

As the one who started this topic, I was interested to see that it's mostly evolved into a debate about whether & how much speech & language declines after DBS. Based on my own experience, readings, & observations, I'd say it is indeed a very common problem, and if you're considering DBS, it's best if you recognize this beforehand. My surgeon said adverse events of the surgery itself were thought to be low (under 5%--10%, which seems to be what RNwithPD refers to in one of his posts), but that no really reliable, well-researched, comprehensive stats were available. 

Stats about side-effects after the surgery are a different matter from stats about the surgery itself. Speech & language are addressed in the 2012 study that RNwithPD refers to above. It states under Highlights:  Although 34% of the individuals whose speech was affected by DBS indicated that they experienced improvement in speech symptoms following DBS, 66% of the DBS participants perceive that their speech got worse due to DBS therapy. 50% of the participants whose speech got worse following DBS reported that the worsening of speech following DBS was unexpected. Of the participants whose speech improved following the adjustment to DBS settings, 20% reported that other symptoms got worse; thus, there was a trade off for some individuals. 94% of the participants indicated that they are satisfied with the outcome of their DBS therapy based on the symptom improvement received from DBS, even in the context of having some side effects. Despite speech disturbance following DBS, 97% of the participants reported that DBS has improved their overall quality of life... Speech difficulties that may ensue may manifest in isolated speech symptoms and functional communication deficits, thereby adversely impacting socialization and quality of life.

This was what I said about my  experience: speech unexpectedly worsened (and is getting worse as time goes on), and this has had a terrible effect on my social life, but I'm still glad I did it because overall my quality of life is better due to relief from horrible tremor & dystonia. But you should be aware: "66% of the DBS participants perceive that their speech got worse due to DBS therapy." Although my neurologist (like others in the PD field) likes to say that perhaps it was due to disease progression, I know it was not. I had no speech & language problems before DBS & suddenly big problems immediately after DBS. Again, I say: it's all a trade-off. Just go in with your eyes open.

 

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