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troydhorning@gmail.com

DBS surgery led to suicide

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I'm not sure why I'm writing this, but I believe it's to open people's eyes to the possible negative side effects of DBS surgery.  My father was diagnosed with Parkinson's in about 2012.  It progressed, we raised meds, rinse, repeat.  Fast forward to 2018 and we decided to go ahead with DBS surgery, at the University of Michigan.  His doctors are some of the most highly regarded in the world, and we were excited for the potential for him to improve his quality of life.  Surgery went well, recovery took some time though, and he seemed to never return to his normal self.  He still struggled, though his dosages of his medications were able to be significantly reduced.  His personality seemed to change, however, the more the DBS machine was turned up.  He'd have spells of manic behavior, which we attributed at the time to the disease, not DBS.  He was often very confused and disoriented, and would talk nonstop, often not making any sense at all.  His depression increased, and at one point made a comment to my Mother while walking to their Florida condo on the 17th floor "If I'm not going to feel any better, I may as well just jump over this ledge and end it." My mother called me immediately and told me about the comment and I immediately contacted his doctors to alert them of this.  They didn't seem concerned, and said that they would evaluate him at his next appointment in Michigan which was scheduled in 8 weeks.  Unfortunately he never made that appointment.  A few weeks later he made good on that statement and ended his own life early in the morning in a horrific exchange with my mother, while I was on the phone with him trying to reason with him to take his pills and listen to my Mom.  The guilt that I now live with is immense, as I was his confidant.  I was at every appointment.  He trusted me to help him, and I feel like I failed.  I was also someone who supported the idea of DBS, and I now feel like that decision killed him.  I guess the takeaway is, to listen, to understand, and don't take your loved ones for granted.  I hope this helps someone out there.  Parkinson's disease sucks.  Hug and love your family.

Troy

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Dear Troy,

Thank you for courageously sharing your story. We don't talk enough about the potential for suicide in folks with PD or for caregivers. I wish it wasn't a taboo topic. Talking about it openly will not cause more suicides. It might prevent some, though.

Dianne

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My father voice and balance was completely ruined by DBS and he now developed an infection from battery replacement surgery and thins have gone down hill from there. I now feel guilty for supporting this whole DBS idea to him. People who are thinking about DBS surgery, take these in account and I personally think you may be better off with meds alone. DBS might end up making thins worse.

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I am so sorry, Troy.

It is not your fault. It sounds like you and your mother did everything you could to try to help and to get help. It is a tragedy and I'm sure was very traumatic for your family, on top of the grief you must feel over the loss of your father. 

The thing is, we are all doing the best we can, making the best decisions we can with the information we have, taking our chances. That's all we can do. 

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Troy,  Thank you for taking the time to post your story.   It sounds like you did everything you could to help and support your Dad.  Ultimately it was his decision, with his doctor's advice, to try DBS.   Unfortunately, we often hear only the good outcomes of the surgery.  We need to hear the negative results too if we are to make an informed decision about our own treatment.  You have given many of us a lot to think about.  Thank you.  Gardener

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Troy,   It is hard to see a parent dealing with a disease.  (My dad passed from a 6 year battle of lymphoma)  When a close member in your family needs support on making decisions on treatment.  The family members have lived long enough with a parent to know what that parent would want.  Sometimes our parents need a little help to understand the possible outcomes.  But the final decision is made by our parent.

We as their grown children out of love for them.  Want to see them as well as possible.  As a person with parkinson's there may be a time when our medicine loses its effect.  You saw what that effect was.  Your dad felt that.  That is why he chose the DBS.  In no way are you to blame.   Parkinson's was.

It is very obvious to us on the forum YOU LOVED YOUR DAD.   And all of us who have parkinson's need a person like you.   Tom PWP

 

 

 

 

 

 

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Thank you all for the kind words.  I think about my Dad literally every second of every day.  It's still so fresh and I know things will get easier.  Hearing nice things from complete strangers is oddly very helpful.  I truly wish you all the best in your journeys.  If anyone ever wants to talk or feels hopeless and needs a pick me up, give me a call. 517-402-1919.

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Troy,

Those who love deeply also grieve deeply.      You are honoring your Dad's memory in a beautiful way by being available to those who may need to talk or be encouraged!

 

Sherry

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Hi Troy,

I am so sorry for your loss.  You are putting your grief to productive use though, as Sherry said, by supporting others in their PD journeys.  Someone else said this, but it is so true...you can only work with the information you have at any given time in the decision-making process.  It's obvious you loved your dad...that comes through loud and clear.  It's never easy losing someone, especially when you feel as though you are doing everything possible to help make life easier for them.  Know that you did what you could and celebrate the memories of your dad.  By the way, your invitation reaches right back to you from me (us).  If you need support or a shoulder to lean on, just let us know...we are here to help you too...and anyone else whose life has been impacted by PD...

Peace and hugs,

Mihai (Michael)

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Most people try DBS out of desperation because there is no way out of Parkinson's. It has been my observation in life when you try things out desperation in life, it tends to make things worse. Never approach DBS out desperation as a way out of Parkinson's. DBS is also personality changing - another important aspect to weigh in before surgery.  Speech and balance issues are almost guaranteed. Most doctors, internet articles hardly ever talks about the dark side of DBS. DBS is a multi billion dollar business. 

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Hello all,

While I do sympathize with Troy and his family, I do not think it fair to make DBS out to be about money.  After struggling with PD for 17 years (I was diagnosed at age 33), I very thoughtfully and carefully (and with the input of my family) made the decision to pursue the DBS process.  Maybe somewhat out of desperation, hoping that it would more successfully relieve both the symptoms and side-effects than the 6 medications I was taking or than the Duopa pump could (even though that was a much better option than the oral medications).  So, after tons of careful, conscientious assessments and testing, three surgeries to place the equipment, and much waiting and wondering about what the outcome might be, I am happy to say that DBS has changed my life.  I am on NO medication at this point (only the stimulation).  I am pretty much symptom and side-effect free.  Sure, there are still some intermittent issues, such as freezing in the feet, and some shuffling, but nothing I can't usually address by adjusting the stimulation.  The team of doctors and professionals that surrounded me in this process were amazing.  It was not about pushing a DBS agenda or making money.  It was about my well-being and functioning.  Would I do it all over again?  Affirmative!  The past couple months have been amazing.  My life is transformed.    As with any medical intervention, there are pros and cons, positive and negatives, risks and benefits; however, all we can do as humans is research, learn, and then make the best decision we can at that time with that information.  If there is a dark side to DBS (and I believe there is), I have not experienced it personally.  I am grateful for this medical advancement.  So, there are always two sides to every coin.  I do sympathize with Troy...believe me when I say I feel so badly about the outcome with his dad.  However, I will encourage people to consider DBS after they have done the research.  We still, in the end, live by faith.  There are no guarantees.

Peace and blessings,

Mihai

Edited by Mihai
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