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)

DBS!!

I had asked my MDS if we could pursue DBS surgery, and he referred me to the surgical team. I believe that was on October 9, 2020. It does take a while to see these specialists, and I had an appointment with the outgoing surgeon (retiring) on October 21, 2021 and with Dr Lau, the surgeon who would be performing the surgery, on November 4, 2021.

I expected to be waiting as long again to be scheduled for surgery, but we got the call that I was scheduled for January 7, 2022. We went to London and had two MRIs done, one with a standard MRI and the other for a study with a super-duper MRI. I was all set, pre-admitted, tested for COVID, just waiting for the day. Then we got a call that we were postponed to January 14. Then - we received a call stating that we were postponed indefinitely. We had been on hold from then until this past week.

On April 5 at 2:30pm ( 😀 ) Judi called to let me know we had a date - April 13! The MRIs from January are still valid and I am getting a ride with friends from church to allow Judi to stay home and work rather than sit around in a hospital all day where she might not even be allowed to visit.

When I spoke with Dr Lau he explained that I needed to prepare by shaving a portion of my forehead. I decided that I would let my hair grow until the surgery was set, so it's gotten quite long. I'm going to shave my head completely. It'll only take two weeks or so for the hair to grow back to the length that Judi used to cut it to.

It's been a long wait for this, and I am eager for it to happen. We are ready - with many people praying for us, and we're trusting that God will oversee and direct the whole process.

You may be wondering "why would I want someone drilling in to my brain?" Good question -  the medication I use to manage symptoms has limits and side effects. It's advisable to take no more than 8 pills (Sinemet, the drug I use as the primary treatment) per day and I am at that limit. In order to keep symptoms in check i start taking Sinemet at 7 am and this kicks in  after about an hour, and take my last dose at 4 pm. This dose wears off after 2-4 hours so I get about 12 hours of symptom relief. It's the other 12 hours that I struggle with - I don't sleep well so I shuffle around the house, watch Youtube videos on home remodeling, race on Gran Turismo 7. It's quite hard just to take care of basic hygiene during this time while I'm not medicated. Getting out of bed or up from a chair can range from being very difficult to accomplish to needing help from Judi. The medication works when I'm taking it, but for those hours that I'm not medicated it's very difficult to function.

For some info on what DBS is, check out this article; https://inside.lhsc.on.ca/article/spring-2017/deep-brain-stimulation

or do a search for "inside lhsc deep brain" if you don't want to click on the link

Here's how long my hair got to be;

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