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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;

I'm on Youtube!

I decided to try my hand at adding content to Youtube. My channel can be found here; https://bit.ly/RVG4YTube or here; https://www.youtube.com/channel/UCWQmOETit4cKWzWhpg4maOw


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It's been four years since I've posted! Life sure does get busy.

I was fortunate to be able to participate in an education program sponsored by Steve Ludzik in the Fall of 2018.

My MDS doctor has always been skeptical that I really did have Parkinsons as his physical evaluation of my symptoms when I am 'on' doesn't indicate in any way that I have PD and with all his other patients he can always detect some symptoms regardless of whether they are off or on. He arranged a DAT scan in May 2019 and the results indicated that I do in fact have Parkinsons. My MDS clarified that I have a 'mild case'.

I was terminated from my job last September. I did a few home renovation projects, but then I got lazy. I tried starting up exercise again in January but didn't commit.

2020 has had a couple of false starts. But - last month I ramped up (way quicker than I normally do) and have been on the elliptical for 23 days, missing 2 days since I started. So I'm 27/29 days thus far.

As far as medication goes, I take 1.5 Sinemet 5 times per day, and either Amantadine or Pramipexole with each dose. I find that, for me - protein (and fat) interfere with the absorption of Sinemet. I've changed my diet such that most of my protein intake happens after my last dose of the day (4:30pm). I crave protein at the end of the day.

With the renewed focus on my health I've started eating Arbonne products that my wife sells. I especially like the protein shakes.

Under-medicating

I was finding that I was getting too much dyskinesea, so I'm trying something different. Instead of trying to stay 'on', I'm actually spreading out the doses. I'm taking 2 pills; 4:30am, 8am, 11:30am, and 4pm. It's a bit of a bother being 'off' during the day, but the side effects are much less severe.

Motion capture study

March 11, I participated in a study where motion capture technology is being used to evaluate symptom levels.
Judi drove me to London as I was to be completely 'off', so my last pills were the afternoon before. The appointment started at 9:30. We ran through some of the standard evaluations, and then they had me do some walking on a track with sensors.
They then had me take a double dose (3 pills at once, I had never taken that many at one time) wait for the pills to kick in, and run through the same evaluations.
After being 'off' for so long that morning and trying to function, it felt so great to be on. I was expecting dyskinesea to kick in hard, but strangely I didn't experience any. I was able to wait quite a while before taking the next dose. We were heading to Windsor, and I drove.
It seems that my dyskinesea happens when I am coming down (wearing off).

Doctor visit

This past Thursday was my visit at Dr Jog's office. I mentioned that the Sinemet isn't lasting long enough or kicking in fast enough. We're adding Pramipexole (aka Mirapex). I haven't started it yet. Probably the most concerning side effect is drowsiness - especially while driving.

My Sinemet schedule is; 1.5 at 4:30, 6:35, 9:10, 11:45, 14:20, and 16:55.

I hope to participate in a study that will try to more objectively evaluate symptom levels using motion capture. There is an article on the hospital website.

We went on a Caribbean cruise, which was very nice, and I did 'try' to do some exercise. When we got back winter and that constant feeling of having a cold coming on was my excuse. I need to get back on the exercise bike. If I can force myself to get up in the morning, maybe I can delay adding the Mirapex to the medication mix.