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Unique Aspects of the Diagnosis & Treatment of YOPD: A Patient's Perspective

Diagnosed at 40

Hello my name is Steven and I was diagnosed with Parkinson's disease in fall of 2002. In the spring of 2009, I had DBS (Deep Brain Stimulation) surgery, and this is my story.

My story actually starts in early 2000. I was at work when a friend asked me why my left hand shaking and asked if I was OK. I decided to go see a doctor to find out what was wrong. My regular doctor did not know what was wrong, and he said I needed to see a neurologist, so I did. This first neurologist said I needed to have an MRI done. Afterwards, he told me, "I have good news and bad news: the good news is you do not have a brain tumor, the bad news is you have MS." This guy told me to enjoy what time I had left, and I left his office feeling like my life was over.

I then spent the next two years trying figure out what was wrong with me, and in that time I saw about 20 different neurologists and had several tests done (including a painful spinal tap to rule out MS). But nobody could come up with an answer, so I went to Mayo Clinic and they came up with Parkinsonism. It was not until fall of 2002 that I saw Dr. Cynthia Comella from Rush University Medical Center who looked right at me and said, "You have PD."

She put me on Sinemet (Carbadopa/Levadopa) which worked great, and lasted for about 5 years. But as my PD worsened, the amount of Sinemet I was taking increased. As I took more Sinemet, I started to develop dyskinesia (uncontrollable muscle movement), a side effect of the medication. I was taking up to two pills every three hours, then I started getting dystonia (muscle cramping). So now I had tremors, stiffness and weakness in my hands and arms, and trouble speaking as well. Plus I am having trouble walking, to the point where I was in a wheelchair part of the day. I was really starting to get scared.

Dr. Comella introduced me to DBS (Deep Brain Stimulation) and told me the DBS would work as well as the Sinemet did, but without all the crazy side effects. So my wife and I discussed it and decided to look into the DBS. We saw a video on it, and I talked to a few people who had already had the surgery. They had nothing but praise about how happy they were. Next I talked to the surgeon about the possible drawbacks (risks) like aneurisms, speech problems, and stroke. The surgeon did tell me that the success rate was extremely high like 95%, it was the 5% that scared me good. Plus I had read about adult stem cell surgery in Germany which supposedly offered a cure. That's what I wanted was a cure, NOW, and the DBS was not a cure.

I was scheduled to have the DBS surgery in July of 2007. The day before the surgery I decided to wait and look into the stem cell possibility, so I called and cancelled the surgery. I read up on the stem cell procedure on the Internet and found out that stem cell has big drawbacks as well, like the possibility of causing cancer. Also, they do not yet know what the long term effects are, if the PD would come back or not, and what other side effects it could cause. There was just not enough info on it. It was way too new, plus it was not covered by insurance.

Then in the fall of 2008 I was introduced to the greatest neurologist, Dr. Michael Rezak, at Central DuPage Hospital, who with his positive attitude helped me see that the benefits of the surgery outweighed the risks. In spring of 2009 I had the surgery done. In March I had the right side of my brain done, which controls the left side of my body, in April I had the left side done which controls the right side of my body.

Each surgery I was only in the hospital for three days. They told me I was awake during part of the surgery, to test to make sure they put the wire leads in the right place. I don't remember being awake, it just seems like a strange dream.

The surgery itself was the easy part; it was the pre-test that was the hard part. I had to go off my meds for one whole day then they tested me to see how well my body reacted on and off my meds. Try doing the pre-test when your body is without your meds—your body will not let you!

They attach the wire leads to the brain and run the wires down behind the ear to a battery pack in the chest; one battery pack on each side of the chest. The batteries last about 3-5 years I was told. You can see the outline the battery in your chest, it feels a little strange but it works great! And if anyone sees it, you can just tell them you are now the six-million dollar man and you can run faster and jump higher!

Another hard part is the waiting. After going through all the pre- testing and the surgery, I was excited about being normal again. I have all this hardware inside me, and they tell me I have to wait a month or so after the surgery to finally get turned on. That was a little frustrating. I had to wait to make sure I had no infections and all the swelling from the surgery had gone down.

When I finally got turned on it felt odd, sort of like getting shocked. I was disappointed at first, I was expecting to be perfect, but I found out it takes time! My advice is BE PATIENT, it will come. Trust me. You need to give it time, and you will be better than you felt before the surgery. I myself feel about 50% better than I did before my surgery. I am down to a 1⁄2 of a Sinemet every three hours. I am personally not finished, I want to be completely off my meds and walk normally again.

It has almost been a year since my surgery and I am still getting adjustments. Dr. Rezak always jokes and tells me I am his "problem child" and "a work in progress." Understand that everyone is different. Some people will not need as many adjustments as I did.

The surgery has made a huge difference in my life. No more shaking, no more dystonia, and very little dyskinesia. I can get dressed by myself, shower, I can type and write again, and eventually walk normally again. I have no regrets at all. I am very happy and I just want to say thank you to Dr. Rezak for everything. You are the best!

Steven Milke gave this speech as part of a community education event sponsored by Central DuPage Hospital on February 13, 2010.

7 Comments

good info about dbs. i am considering it after 7 years of these stupid drugs and side effectsthat are driving me nuts. i take 4 different drugs and dont like the off times. thank you i am going to talk to my doctor today about dbs.

craig, Jan 31, 2011

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DBS enabled me to keep working, so I'm grateful too. I had it in 2008 and just had the neurostimulator replaced with a rechargeable one. I'm having trouble returning to my previous level however. Have others had battery replacement?

Patricia Hoon, Oct 24, 2011

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Not all endings are happy. After DBS surgery (s) plagued by implant infections, home antibiotic IV therapy with the eventual removal of device. Never got to the good part and have 29 year old son diagnosed with possible DBS future (not to mention father with PD although not early onset).

John S. Porter, Sep 27, 2012

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I have had PD for 12 years, and am now 50. I take 5 tablets of sinemet, 3 tabs of Mirapex, and 2 tabs of Selegiline. I have been taking the drugs for 6 years, and now the drugs themselves are causing major problems. between 10am-2pm. I pretty much know I won't be able to walk and my right side will be pulled to my left causing me to be bent over. My neurologist says I should consider DBS, but this scares the hell out of me. I get anxiety attacks just thinking about it...Is it worth trying or should I see if a new drug regimen would be better? What do you think? DAN

Dan, Oct 3, 2012

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Definitely go for the DBS surgery. It has changed mylife. Not perfect and some days are still rough, but for all the times I would say no way to the surgery, I was wrong. Yes way to the surgery! Best of luck!

Paz salas, Jan 28, 2013

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I like the way you describe the process.
In my Yopd group i'm the only one who hasn't
had DBS and they all say nothing but good things
. I have anxiety like "Dan" over being awake
and The possible side effects. Great story.

k

km, Jun 23, 2013

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My mother has PD the rigid form and her swallowing is getting worse she falls all the time. She uses a walker and takes pills but I was researching to see what will prolong her life and give her wish to be able to walk again with out a walker. Do you feel that the DBS would work for her?

ana, Sep 28, 2013

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