The mystery

  Had a followup appointment January 27. I stated that I would like to have less tremor in my right arm. We tried a few things and the team (4 doctors including Dr Jog) stated that this may be as good as it's going to get with DBS alone. They asked about how much levadopa I am taking (none) and that I may want to add that. We also discussed the use of botox. which would only last for three months and would be costly.

So we were left with Program 1, which was the 'old' settings saved last July, and Program 2, which was now slightly modified. The tremor was not as severe, and my walking was still better with P2 than P1.We left with me set to P2.

On the way home, I felt my right arm 'release' and the tremor stopped. This lasted for several days. Approximately on Friday this changed - I woke up with the tremor and tightness in my right arm much more severe. I switched to P1 and found the tremor much reduced and I could walk better than with P2.

We had expected that I would use P2 when I wanted to walk, and P1 when I wanted the tremor to stop. But now P1 is the 'go to' program and P2 is not being used.

DBS is still a mystery to me.

I can walk (mostly)

 This past Monday (July 29) I finally went to London with J for a DBS adjustment.

The doctor made some changes to the pulse frequency. Sometimes this process seems to be very much like getting new glasses - adjust, how's this?, go for a little walk, adjust again, ...... etc.

The best part though is that I am now walking most of the time without any aids.

A friend was keeping an eye out for a "Gazelle" exerciser as I still haven't pulled the elliptical out of the garage. The elliptical is very heavy, even after stripping it down. J and I have been trying the Gazelle out a bit and I managed to strain my back. It can really be easy to overdo it without me realizing it.

I'm excited and thankful and looking forward to getting in better shape and being able to walk more.

Settings update!

Had an adjustment to my settings yesterday. It was unscheduled. Received a call on Tuesday and set up the meeting for Wednesday. We are eager to get this done.

They switched the location being used on the right side and were able to reduce the current there. Left the meeting with settings of L 1.1 and R 1.6mA. A tiny bit of dyskinesia. It's amazing how a very small amount of current can make such a big difference in my brain. Discussed tapering down on meds but not with a "do this" clear strategy. So far, I haven't needed a pill and haven't taken anything for about 43 hours. Not sure yet if any kind of withdrawal symptoms will be an issue and will take a very small dose if that happens.

J and I went for lunch at Pita Pit and I had PROTEIN at lunch!! It's been many years since I was able to do that as protein interferes with the absorption of the PD meds. I felt "like a regular person".

I didn't sleep great. It was to be expected as the new settings need to settle in for a few days. But - when I am in bed, I can turn over, etc. fairly easily!

I'm moving around at home with no assistance. Just a little bit of balance issues, but no falls (or near falls).

We are so close!

PD Support Group

Last month, I was working outside and about 5 minutes before the meeting started noticed the time, realized that I still needed a shower and that there was no way I was going to make it. Grrrr.

Yesterday was our first meeting back here (thanks again COVID). J and I were discussing our current issues with good friends and noticed that the time was getting short so we dashed off to the meeting and were met with a full room. Yep - 5 minutes late.

I scanned the room for familiar faces but found none. It looks like there was no one left from 10 years ago. In this community, not a surprise.

The question of the day was “do you avoid situations now that you have Parkinsons?”

There was a lot of heartbreak in the room.

There was a man who was forced in to a horrible situation with his wife that he could not escape because of limited finances. I cannot even begin to describe it and could not bear it myself.

There was a woman who was having difficulty getting adequate treatment for tremors that she was very uncomfortable with.

There was a man who was told by his doctor that Sinemet was working for him when he does not feel any benefit. His daughter is his care partner and also does not notice any improvement from the medication.

There was a woman who was experiencing extreme pain.

There was me - Mr Chatterbox - who seemed to have a comment back for everyone (trying to be helpful). I just cannot shut up lately.

We ran a little over time, I was desperate to pee. I ran out of the meeting and when I returned the room was mostly empty.

Second round, meeting one over ……

UTI!!

 Ah ha, that's the culprit! Started on antibiotics Friday, feeling somewhat better today but more importantly - I can walk. I can get around! I can ....... Ya, that ......

Amazing how we are designed to do without so much (80% of dopamine receptors in your brain are gone by the time most people with PD are diagnosed), yet an infection that seems to cause some lower back pain and seems so far removed from your brain can mess you up so much.

Missed church this morning. Still have the lower back pain 😐😞

UTI?

I'm wondering .... J's mom always used to get quite loopy when she had a UTI. Could that be the problem? 

And why is it? ....

 that the font keeps changing in my posts?   😀

Session 3 - some relief

We finally got a call back from the London Hospital. The doctor not only confirmed some of my thoughts - specifically that we need to treat each side individually and that the left side needs to follow the right instead of keeping pace, but also prescribed Sinemet CR (controlled release) for use overnight.

It may not be ready at the pharmacy today. Hoping it doesn't take too long to come in.

In the meantime awesome friends are offering some relief from the heat and the stress this evening.

We are blessed.

Why does my life seem to be; I complain, God provides, I wonder if God will, God does. He is always faithful!

Take, take, take

 Sometimes Parkinson's seems like it just takes and takes and takes.....

What it gives back is humility. I can no longer do it all. Why I ever thought I could is a QUESTION FOR ANOTHER DAY.

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)

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


To subscribe to my channel, click on the Youtube button below;

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.