My story with Parkinson’s disease began about 2011 when I noticed that it was taking me longer than normal time to do simple tasks. I typically was a fast walker and when walking with groups of friends I was having a hard time keeping up. At times I would walk really fast around the house just because it was driving me crazy that I was so slow. Then I noticed my arm quit swinging when I walked. I could swing it if I thought about it but it did not swing naturally. I also would hold my arm bent out in front of me when I walked. It looked very odd. Next came the pain in my shoulder. Assuming that this was maybe a pinched nerve as a result of being on a computer all day at work or maybe rotator cuff issue I went to a orthopedic doctor. After x-rays there was no arm shoulder issue. A few months later while attending a birthday party for my grand daughter my nephew asked what I did to my arm. This is when I knew that I needed to have an answer. I decided to try acupuncture. While performing the acupuncture, the acupuncturist noticed that my hand was shaking. She suggested that if the symptoms were not better after this that I should see a neurologist. At my first neurology appointment the doctor had me write my name, draw circles with my left hand and then my right hand. My circles with my right hand you could see the shakiness. Because it was on just one side he told me that it was a brain issue and not a shoulder/arm issue. His diagnosis was that it was either a slow growing brain tumor or a spinal cord issue. If those were not the issue then we could expect early Parkinson’s Disease. Funny thing was that I remember hoping for a brain tumor since I figured they could take it out and I would be fine. I had a brain MRI and it came back clear. Next they did a MRI on my neck. The doctor called and said that I had a ruptured disc in my neck and he thought that it was pressing on my spinal cord. I was elated. This was the answer. Next he schedule a Electromyography (EMG) measures muscle response or electrical activity in response to a nerve's stimulation of the muscle. The test is used to help detect neuromuscular abnormalities. This was inconclusive since I was having tremors when they inserted the needle and he could not get a good reading. His recommendation was then to go see a movement disorder specialist at the University of North Carolina. At this appointment Dr Nina Browner, a movement disorder specialist, diagnosed me with Parkinson’s Disease. Thankfully she was so positive about things that I left that appointment thinking that this is not that bad, and it wasn’t for about 6 months or so. I was having so much pain in my leg, it felt as if all the muscles up the side of my right leg were being twisted. I could not hardly walk. At my next appointment with Dr Browner, she was very upset that I had let it get this bad without notifying her. She said that we had to stay ahead of it. I was trying very hard to take as little medicine as possible because I knew that the more meds, the more side effects. She doubled the medicine that I was using which was a dopamine agonist- which makes your brain think that it is getting dopamine and started me on dopamine. It worked great and I was really good for about 6 years. That was until about a year ago when I began having trouble the side effects of the meds. I began having compulsive behaviors and major anxiety and depression. I had to quit taking the dopamine agonist and therefore had to up the amount of dopamine. I started taking an anti-depression/anxiety medication. Thankfully this has really helped those issues. I am now taking 19 pills/day. I take meds every 2.5 hours all day, everyday. Some days are good but mostly I feel not so good. I feel like all this medicine is frying my brain. I have lost about 30 lbs in approximately 4 months due to the dyskinesia-involuntary movement (like how Michael J Fox sways back and forth) from so much dopamine. I am constantly moving (wiggling), feels like I am doing speed (at least how I think it would feel). If I try and reduce the amount of dopamine my Parkinson’s symptoms are worsened. I don’t have much problems with tremors, I have more issues with rigidity. I am so over it! This is when my neurologist suggested looking into DBS. After meeting with my neurologist, who is on the DBD team at University of Cincinnati Medical Center, and having a psychological evaluation done, I was approved for DBS.My surgery is scheduled for May 9th (all prayers will be appreciated)and I am excited, thankful, and of course nervous, to have the opportunity to have this surgery. The results can be life changing!
If interested in more information about DBS keep reading....
Deep Brain Stimulation is a surgical procedure for neurological symptoms—most commonly the debilitating motor symptoms of Parkinson’s disease (PD), such as tremor, rigidity, stiffness, slowed movement, and walking problems. The procedure is also used to treat essential tremor and dystonia. At present, the procedure is used only for individuals whose symptoms cannot be adequately controlled with medications. However, only individuals who improve to some degree after taking medication for Parkinson’s benefit from DBS. A variety of conditions may mimic PD but do not respond to medications or DBS. DBS uses a surgically implanted, battery-operated medical device called an implantable pulse generator (IPG) - similar to a heart pacemaker and approximately the size of a stopwatch to - deliver electrical stimulation to specific areas in the brain that control movement, thus blocking the abnormal nerve signals that cause PD symptoms.
Before the procedure, a neurosurgeon uses magnetic resonance imaging (MRI) or computed tomography (CT) scanning to identify and locate the exact target within the brain for surgical intervention. Some surgeons may use microelectrode recording - which involves a small wire that monitors the activity of nerve cells in the target area - to more specifically identify the precise brain area that will be stimulated. Generally, these areas are the thalamus, subthalamic nucleus, and globus pallidus. There is a low chance that placement of the stimulator may cause bleeding or infection in the brain.
The DBS system consists of three components: the lead, the extension, and the IPG. The lead (also called an electrode)—a thin, insulated wire—is inserted through a small opening in the skull and implanted in the brain. The tip of the electrode is positioned within the specific brain area.
The extension is an insulated wire that is passed under the skin of the head, neck, and shoulder, connecting the lead to the implantable pulse generator. The IPG (the "battery pack") is the third component and is usually implanted under the skin near the collarbone. In some cases it may be implanted lower in the chest or under the skin over the abdomen.
Once the system is in place, electrical impulses are sent from the IPG up along the extension wire and the lead and into the brain. These impulses block abnormal electrical signals and alleviate PD motor symptoms.
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