Session 3 - what 1.5mA on both sides does to me

Hi B,

We are doing well. DBS - is being a bit of a pain. Ok, more than a bit. In concept the surgery is fantastic. It's just harder to dial in the settings than we expected. I was diagnosed with PD in the Spring of 09, but these past few days have been the worst symptoms and/or side effects that I have (that we have - as Judi has had to help me more than ever) ever had. It runs from extreme tremors, lack of strength, inability to move - especially overnight, to vivid dreams where I yell and act out.

We have contacted the hospital but have not heard back yet. I am working on some theories within the constraints of what I am "allowed" to do with DBS settings, and that is a whole 'nother story about my thoughts on health care.

Thank you for all your prayers and support. We have HOPE (in God's plan) and hope (in the DBS technology) and know that we will get "there".

I have some fundamental disagreements with how my settings are being updated and I am seeking answers from other experts. And I really want to explain that, by experts I mean other PD patients who have had DBS.

Church family update

 The second programming session was this past Monday. The stimulation levels have now reached a point where I can really notice a difference. In fact, we bumped up the level from 0.5mA (milliamps) to 1.0mA and I was having a bit of trouble tolerating it. I ended up lowering it to 0.8mA. Tuesday I was in bed most of the day just catching up on sleep.

I am tolerating 1.0mA much better today.

Thank you very much for all your prayers and best wishes. I really appreciate it.

Quick Phone call

Well I thought that it would be a longer phone call, but health care professionals are stretched so thin that they don't have time to be thorough anymore.

Heather called this morning and we bumped up the level from 0.5mA to 1.0mA. I had tested this level earlier for a few minutes and knew there would be an effect. And then, just as quickly as she came, she was gone. The next appointment will be in person.

So - how do I feel?

At 1.0, I have dyskinesea very similar to when my first dose of the day is kicking in. It was a little difficult to deal with, so I dropped it to 0.8, then raised it back to 0.9. I'll try to get it to 1.0 in a while. 

We're making progress!

Programming - Baby Steps

 Judi and I were up bright and early this morning (6:30am) to be at the hospital for programming at 9:30am. Good thing too, as we arrived at the hospital at 9:20.

The programming process consisted of setting the values of each probe independently and checking how I felt and what my PD symptoms were. The settings could completely remove my tremor, etc. and then could turn in to double vision, tingling, hot flashes, etc. when pushed higher.

They then packaged the settings and set the output to 0.5 (mV? - not sure of the units) and stated that we would leave it there for two weeks to get my brain accustomed to being stimulated this way.

The next meeting will be over the phone and we will up the mV setting and re-evaluate. They also reduced my medication frequency from 2.25 hours to 3.5 hours. This see-saw approach of "raise the stimulus and reduce the medication frequency" will continue until we find the right settings for me.

I had forgotten to take my meds along today (the testing and programming took place unmedicated) as I had asked Judi to hide them from me so that I didn't take any without thinking. They got me two sinemet to get me home. Unfortunately there was a delay on the 401 that lasted an hour or more so I went "down" hard and Judi had to finish driving home.

We're home now, and I'm eager to see how the new schedule works. I think that how I feel overnight will be a good indicator of what to expect from these settings.

Programming begins May 16

The date is set for programming to begin; May 16, 2022.

I go to this appointment unmedicated and we see what the implant can do.

Really looking forward to this!!

Heading home

 0414

It`s our 38th wedding anniversary today!

The only negative part of being in the hospital, based on what I thought I heard was this - I was moved from a private to semi-private room. My neighbour was a bit senile and quite often didn't know where he was, so I didn't have a lot of interaction with him. What I thought I heard was that he had tested positive for covid on the way out. This wasn't discussed with me, I just had to overhear it (of course, I may have gotten all this wrong).

I was picked up by a new very good friend Wes and we went to his house where Judi and a great meal awaited me.

I could finally get some real sleep, so I slept all night, then from 730 until about 10am cat-napped, raced for a bit, then fell asleep playing a game with Judi, took a nap from about 2pm till 630pm, then went to bed early. I just don't seem to be able to sleep in the hospital, but once I got home I started making up for it.

Easter Sunday

He is risen indeed!

Not quite ready for a big crowd yet, so we watched the online services. The kids came over and we had a meal together.

I've been having some discomfort near the battery pack, and I'm taking Tylenol 3's for pain from the freezing in my head (still frozen - this could take quite a while to come out).

Just need to take it easy now until the stitches dissolve and the incisions are completely healed.

I have been able to reduce my meds, and I'm looking forward to a further reduction when programming starts.

20220412

Friends from church brought me to the hospital on the 12th to prep for surgery on the 13th. We were first told to wait for a call and then drive to London. I decided against that as I wanted to be sure that they would be driving in daylight as they went on to Guelph. Turns out -- they were not going to Guelph and were just going to turn right around and go back to Windsor. They waited with me until a bed was available. If I hadn't pushed and stated that I was from Windsor and was already in London I may not have even found a bed that evening. Thankyou Ron & Beth for driving and waiting with me.

I was admitted and sent to the 7th floor  where I was greeted by Surinder - thank you Surinder for making me feel welcome.

0413

Turns out its tough to get transportation. I waited for a long time for someone to arrive to transport me to surgery, then I needed a BM again, the nurses turned me on my side with a bedpan on my butt. I knew that wasn't going to work so we gave up on that, then Dr Lau arrived and he transported me himself. We then stopped at an area designated for placing the halo on my skull. Dr Lau had wanted a private area for this, but needed to set a time with the coordinator of the area --- who just happened to be in the area that morning and wanted to talk with Dr Lau so they could make a more private area for this. Imagine that!

The pain of placing the pins against my skull was incredible, and I soon forgot that I had wanted another BM. They just kept piling on the Novocaine as I said which pin sites still hurt. They numbed all around and the center of that area still feels numb today (04/18).

The operation was very interesting and the testing prompted responses from the doctors of "good", "that's great" and "perfect". I could hardly wait to start the programming and put some of these settings in to practice. It was weird though as they would increase to 3 or 4 and I would start to feel a response I could not control and then they would increase to 5 or 6 and i would get serious odd sensations in my face, tongue and nose that I could not make go away. Some times, in some ways I felt like a puppet on a string. But -- I was so glad that they had all this response available to them for programming.

The last part of the surgery was done under general anesthesia so I woke up in PAC U (don't know what that stands for) thinking that we hadn't finished.

Thank you Mikaela for reassuring me.

There was a lady in there who was dealing with a belligerent patient who I thought was her husband or father. Turns out it was not a family member but a nurse named Patty.

She was around the corner and out of sight so I could only hear them, but from what I heard I let Mikaela know that I would have called Security long ago and that the nurses were awesome to put up with so much and that Patty especially deserved a medal.

I had never had a catheter placed while awake before until yesterday so when I heard Patty say that he needed a catheter placed I laughed and laughed harder when he reacted like a big baby to the news. But Patty taught me so much and I realized that I found it so hard to give this guy the benefit of a doubt. He could have been going through something, or having a bad day, or a reaction to drugs, etc.

Thank you Patty

My nurse for the last night was Danielle and she said we were going to be friends. We could have, except I was what I could only call "quietly belligerent". She would say stay in bed and yet I tried to get up by myself three times. The last time I took my Sinemet early and wanted to surprise her by walking normally, instead I had to urgently pee and ended up peeing all over myself and the floor.

Thank you Danielle for putting up with me and thank you Curtis for taking care of me when Danielle lost her patience with me.

Thank you Madison for waiting with me for my ride to show up.

There are so many others to thank, and so many other acts of kindness to be thankful for, but I didn't write down all the names.

7th floor nurses rock!

Here's the before and after look;

Before

After

Really after (gauze off)