So..... My Dr. has planted the DBS seed in my head. During our Telehealth meeting last week, he explained what the DBS is and why I am a great candidate to have the surgery. One of the reasons why he wants me to consider this procedure is that my body is unable to tolerate almost all of the medication that I have tried for PD. When my body starts to reject new meds, I get very very sick and feel like I am starting all over again (as I become weak, exhausted and uber depressed, not to mention apathetic). All I want to do is stay in bed. The DBS would end the need for more meds, by sending messages from the pacer (which will be implanted in my chest) to the leads in my brain to stop any symptoms that I would otherwise have felt. I must admit, I was very surprised that he brought up this procedure as an option. I was under the impression that you have to be in bad shape before even being considered for the DBS. He explained that now would actually be ideal (now meaning within the next four years or so) before symptoms progress. I told him that I had a lot to think about, but I was absolutely leaning towards saying yes.
Once our meeting was done, I FaceTimed with my dad. My dad's opinion still means the world to me. While I was waiting for my dad to answer the phone, this swirling wave of emotions suddenly enveloped me. By the time he picked up the call, I was crying my eyes out and of course he became very worried thinking something bad had happened. I told him all about my Telehealth appointment and that the Dr. had suggested DBS. After hearing all of the facts, my dad said that I should absolutely have this procedure. I now have his blessing to go forward with it.
I have jumped through the first hoop of figuring out if I am in fact an ideal candidate for this procedure. Last Wednesday, I got to see my Dr. in person for the first time since the Pandemic started. He asked me not to take my meds Tuesday night or early on Wednesday morning. He wants to be able to show my potential surgeon what I react when I am off of all meds vs. on all meds. Hence the name of the test.... the "On Off" test. I always take my last dose of Rytary at 7:45 pm. At the same time, I change my 24 hour Neupro Patch. Unbelievably, I had no issues at all with symptoms that night. It was a total relief to me. The next morning, when I first woke up, I felt better than I thought I would. I ate breakfast and then rested in bed thinking I was not going to show any symptoms. Yikes! I was wrong about that one. Within 10 minutes after eating breakfast, PD took this unmedicated opportunity to wreak havoc. By the time my friend came over to pick me up to take me to the Dr, I could barely stand up or talk. My feet were almost shuffling and I felt like I had not slept in weeks. My friend had to lock my front door because my right hand was too weak to even hold the keys. He helped me walk to the car and had to help me get in the car as well. The meds I am on are very powerful but leave my system quickly. This is why I take Rytary every three hours during the day. The last time I had taken my medication, it was 4:30 pm (the late afternoon before), so I had gone 13 hours without any Dopamine in my body. By the time we arrived at the Drs. I was feeling very sick. The staff helped me walk in and immediately put me into a room. My Dr. came in within a minute and promptly apologized for having to take me off of my meds. He had me perform several tests while off my medication and videotaped me. I once again had to do some simple movement tests with my hands and fingers (one hand at a time). I also did heel and toe taps and touched my nose with my index finger. He maneuvered my hands and feet one side at a time. My right side had become rather rigid. He also had me walk back and forth to show how much smaller my gait was when not on medication. I was almost shuffling my feet at that point. Next, I was asked to draw a circle clock with the numbers 1-12 on it. He then gave me a certain time and had me draw the arms on the clock to reflect that time. Lastly, he had me draw a 2 dimensional box (that one was a disaster, as I have never been able to draw any type of two dimensional shape). Of course, my drawings were squiggly because my right hand was tremoring.
Once all those tests were completed, I was allowed to take my meds. About 20 minutes later, I started to perk up. I told him that I was ready to continue on with testing and he pointed out how much louder and clearer my voice had become since taking my meds. He then proceeded to do all the same tests we had already done, but this time, he also gave me math problems to solve, using mental math. He then gave me five words which he had me repeat 5 times. He said that we would come back to those words later. He once again videotaped me to show the surgeon the huge difference when I am on my meds. When he asked me to repeat the five words, I remembered three of them. I was actually surprised that I remembered any of them at all! It is the old "outta sight" "outta mind" scenario. Once we were done, he told me that I am a great candidate for the DBS surgery and that he was referring me to Stanford for a consultation. I have an appointment on December 2nd to meet with the Neuro Surgeon. I will let you know what takes place after my meeting. This is happening!
No.... this is not me. But this picture represents how I am feeling about the potential DBS life changing surgery. I am in deep thought.