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.

Dosage changes ch-ch-ch-ch-changes

I had settled in to a routine of 2 at 4:45, 1.5 at 7:55, 10:50, 13:45, and 16:40. I found that I was getting way too far  'off' at work and taking way too long to get back 'on'.
The problem has been trying to come up with a schedule that works for eating breakfast, the drive to work, eating lunch, and driving home.
I decided to get a bit more creative and open up the time frame a bit. New schedule; 2 pills at 4am (might try 1.5), go back to bed until 4:30, get up - exercise, shower, take vitamins, eat fruit, drive to work, then 1.5 pills every 2 hours 35 minutes. So 6:35, 9:10, 11:45, 14:20 and 16:55.
I'm finding the doses may be too close (bad dyskinesia after last dose) so I'll try starting the day with 1.5 instead of 2. Total of 9-9.5 pills per day.
So glad my doctor has no problem with me setting my own schedule and dosage.