Good afternoon to you. Today is Tuesday January 12, 2021. I am having a wonderful day and am feeling really good! Yesterday my afternoon was going great until I got a call from the surgical scheduler at Stanford. When the phone rang, I looked to see who was calling and by the area code, I knew it had to be Stanford. And..... I was correct. When I answered the phone, the person on the other end said that she had lots of dates to schedule with me. If I were a bird, all of my feathers would have immediately fluffed up from fear. She spent the next 15 minutes throwing dates at me for upcoming appointments (and trust me.... there are lots of them). The grand finale (drum roll please) will be the DBS procedure. As if I am not frightened enough about having brain surgery, by the time our call ended, I was literally on the verge of having a panic attack. Here I am thinking that I just show up for the Pre Op appointment and then come on back a week later for the Big Kahuna. Oh no. Not so fast..... It is quite the ordeal leading up to the actual surgery. I am going to call them "hoops" that I need to jump through before it is a done deal. Hoop#1.... As I wrote about in an earlier blog, I have already done the first assessment that my Neurosurgeon needs to see to make sure that I am a good candidate for the DBS.
To refresh your memory, I went to my Movement Disorder Specialist's office early one morning without having taken my last dose of Rytary the night before or my first dose the next morning. Considering it had been over 16 hours since my last dose of meds, I felt pretty good when I first woke up. I thought to myself, this is great! I do not feel sick! However, that glorious feeling dissipated as soon as I got something to eat. Within ten minutes, my body began to discombobulate. I went from sitting up straight in a chair to laying back on the couch, almost lifeless until my ride showed up. By the time my friend arrived to pick me up, I couldn't lock the front door because my right hand had become extremely weak. I kept dropping the keys. My friend locked the door and then had to help me walk to the car, as I was afraid I would fall without his help. Once we arrived at the Drs., one of the staffers came out to help me walk in and quickly whisked me into an examining room. My Dr. appeared within seconds and was very apologetic about the way I was feeling. He did some simple writing, speaking, strength and memory assessments and then let me take my meds. Within 20 minutes, I started to feel waaaaaay better. He had me do the same tasks over again. The second time around, everything was so much easier.
A week later, I met with the Neurosurgeon, who by the way is a very cool and down to earth guy. He spent a very long time with me and thoroughly explained the DBS procedure in a way that I could understand. After meeting with him, I told him that I am onboard. Hoop#2.... Earlier today I met with a psychiatrist. We spoke on Zoom for about two hours. He asked me tons of questions about my childhood, anxiety and depression. I was honest and told him that I am very frightened about everything. I also said that I really want to go forward with this, but my anxiety is literally crippling me when it starts. He has suggested that I stop taking Aleve PM at night to help me sleep. He says that in the long run (if I were to stay on Aleve for a year or two), it would begin to affect my cognitive functioning. He suggested a new medication for me to try. He says not only will this medicine help me fall asleep, but it will also help me with the major anxiety I am having. FYI. I have always had anxiety, but before PD, I was able to take deep breaths and move on. Now with PD, I am no longer able to shake it off quickly and move forward. This is definitely one of the side effects of PD that I could do without. I asked about potential side effects and was told that in the beginning I may have a headache or a sick tummy, but he assured me that it would only be temporary. He also talked about possible weight gain, which I did not like. Tomorrow I am going to contact my Dr. to see what he thinks and then I will talk with my pharmacist (as I always do before starting any new meds). I have got a lot to think about. I really do not want to add any more meds, but it this is going to help me with the intense anxiety I feel, then it might be worth a try. I do know that if I try it and feel sick at all, I am done. To be continued....
I do some of my best thinking down by the water all alone. You should try it sometime 💦