Me again

I told you back in September that I was really struggling with the impact that the implants were having on me. My voice was slurring and quiet and my right leg was doing funny things.

I have not been back to the clinic and things are getting progressively worse. My voice at times is totally indistinguishable and people are simply ignoring me whenever I try and say something, including my wife. I am getting very frustrated and am to the point that I am willing to turn them off and take what comes. It is suprising how alone you can feel in the world when no one can understand you and whats probably worse, no one cares. Sign language is definetely an option. I have been going to speech therapy but there is something decidedly wrong about learning to talk again when you are almost 50.

To say I am frustrated is an understatement. I didnt sign up for this and didnt know this would be a consequence. But it is and now I am stuck with it. It is easy to say "deal with it" and I probably should. Parkinson's has a way of screwing with your mind and these implants are turning out to be no different.

I guess my rant is finished. Talk to you all soon.

Its been a long summer...

Hi folks.

Sorry I haven't posted more but the last few weeks and months have not been without their challenges, I should have been posting more often but like allot of things, it has simply slipped my mind.

Anyways, here is an update on how things have gone.

I went back to the NueroModular Clinic in Regina in early August to have the implants brought to full power, or at least what would be full power for me for awhile and the visit bordered on a complete disaster. When the implants were powered up, I immediately noticed that I had allot of difficulty speaking and the power going to my right leg was causing it to twist and contort to almost unbearable levels. I went home that night really wondering how this was going to work out and if I could or wanted to live this way.

I went back the next day and had the power turned down on my left side which improved my voice somewhat. Resigning myself to the new reality that was my life..I left Regina. The biggest positive thing that came out of that visit the Doctor gave me the ability to adjust the power a little on both sides.

Since then, I have literally daily struggles with my speech and for someone who likes to talk, I think you can appreciate the frustration.

My sister Yvonne told me that with everything good there comes some challenges. Truer words have seldom been spoken.

I am back on hockey business this weekend as I go to Halifax for an Officiating meeting so we will see how things go. Stay tunes and I promise you I will talk to you all soon.

Power-up Day

I am not sure where to begin. When I got to the hospital in Regina today, the person I was suppose to see to power up my implants was not there. Holidays. Her assistant was very competent and capable but didn't feel comfortable turning up the power as much as it probably should have been. There was also still some swelling around two of the contact points in the implant that controls the right side of my body so they could not be activated at this time.

Let me explain the technical stuff.

When I had my surgery on the 18th , they put two nuero implants in my brain and wired them to a power pack which they placed under the skin on my shoulder. Each implant has four receptors so that means there is eight different points in my brain where they can make contact. Each receptor or contact point can be independently programmed to a different voltage and a different sequence.

Each contact point has the ability to stimulate different parts of the body such as tremors, balance, speech, muscle rigidity and coordination. As well, different contact points can affect things like tremors more efficiently than other points so the trick is to find which contact is the most efficient (least power draw means longer battery life) to do the job the best. Throw into the mix that I can't completely eliminate medication and it becomes a delicate balancing act between meds, contact points and the fact that this has to last for a long time because there is no other option right now in the medical world. Something better may come along in the years to come but right now this is as good as it gets. As much as I want to dial my body back a few years, I have to make sure I have options 1, 2, 5 and 10 years down the road.

Getting back to the implants, I said before there were two contact points on the right side of my body that couldn't be activated right now because of swelling and there was one, again on the right side that will not be activated. That left them only one contact point on the right side to work with and my right side is my worst, so it will be take a few more visits to get my right side tuned. I think you can appreciate the challenges.

My left side feels fantastic. If they can get my right side equal to my left side, there will be one huge party at my house and it will last for years. You are all invited.

Take care and if you have any questions, please ask.

PS They did give me a remote control. It can only turn me on and off right now but it has the ability to increase or decrease the voltage to the implants we ever get to that point.

Hi everyone..

Not much new since my last post. I am patiently waiting for next Wednesday when they turn the power to the implants. It has been a bit of a battle with the meds not behaving the way they should and knowing you have these things in your head that are suppose to help but you have to wait.

Oh well.

I am taking it very easy these days as the headaches come on quickly. It is getting better though.

I will talk to you again after the implants are powered up. Take care.

Difficulties

The last few of days have not been easy. The power pack thy put in my chest has moved or shifted or something and is very uncomfortable and at times painful. I am getting more frequent headaches with sharp pain from the one incision on a regular basis. I don't know why other than the fact I have probably been doing to much physical activity.

Given the fact that Connie is almost working full time , we have decided to close Marnies for the time being. It has been our life for the past 7 years but things change. The implants will hopefully improve my quality of life but the bottom line is they are not a cure. It might be time to end that chapter in our book of life.

Update

Sorry I have not posted much but there really isn't a whole lot to say. I have been taking it easy but at times, I guess, not easy enough. I have been getting occasional headaches but nothing to serious. The brain is very good at telling you when it is time to rest and you do..even if you don't want to. There have been none of the common side effects. dizziness, disorientation and seizures, sometimes associated with this surgery.

Lot of people have asked if the implants are turned on. Yes they are but only at a high enough voltage that my body gets used to them. Not really to correct any symptoms. Having said that, I have noticed a couple of small things where there has been improvement. They will get brought up to full power in late July and then fine tuned to where they need to be. If it is anything like it was when they powered them up during surgery, that will be a red letter day.

That's all for now folks. Take care.

D-day + 1

I told you that on Thursday night, the nurses in SICU woke me up every hour to take my vitals. Because of the morphine, I had no trouble falling back asleep. I woke up for the umpteenth time on Friday morning and after having some breakfast was told I could transfer to the neurology ward for the balance of my stay. After the transfer things really fell into a routine. Meds every 4 hours, breakfast at 6:30, dinner at 11:30 and supper at 5:30. Blood work was done once a day and vitals were checked every 8 hours. I had passed the 24 hour critical window for rejection by the body, I had not had any seizures, my vitals were strong, there was no dis-orientation and no light handedness. Considering that 24 hours earlier I thought I was going to die, things weren't to bad.

Saturday came and we thought we might be able to go home. No such luck. You don't get discharged from a hospital on the weekend and you don't expect to. Fortunately Dr. Kumar came back to the hospital on Saturday evening, wrote my discharge papers and we were able to go home on Sunday. The brain has a wonderful ability to heal itself quickly but like I have found out, it is quick to tell you when you are overdoing it.

Post Op

When I woke up in SICU there was a buzz of activity to get me ready for the night. If the implants were going to be rejected by the body it would happen within the first 24 hours. After the nurses had me settled in my bed, my family was allowed to come in and see me. Connie, Lisa, Cody, my parents, sister and niece had been there all day and I guess they were getting a little anxious when they weren't hearing anything. I think my Mother was pretty freaked when she saw me as I didn't look very good and was in pretty rough shape.

The nurses woke me up every hour throughout the night to check my vitals, take blood and see if I was still alive.

I would like to say something here about the nurses and staff at the Regina General. They were absolutely fantastic and professional in every sense of the word. These people deal with death on a daily basis and their treatment of me was exceptional and always positive. Many thanks to these wonderful people.

Surgery - 3:00 PM to 6:30 PM

The doctors weren't wrong. The second implant went somewhat better than the first one. Same routine. Check, re-check and re-re-check coordinates on the drill and the stealth. Only one small glitch. It didn't end up in the exact spot they wanted it. It was only 2 mm out but that I guess, is a big deal. I shouldn't say they missed the spot. They decided there was a better spot for it which was 2 mm over and 2 mm down. As little a distance as that is, it required about 30 minutes or so of recalculations which needed to be checked and re-checked, I think you get the picture. The implant was re-inserted, locked down and wired in. Then, finally, that damn halo came off and I was prepped for the surgery to install the power pack. That is all I remember until I woke up in the surgical intensive care unit in pain.

Surgery - 11:00 AM -- 3:00 PM

At about 11:00 AM the surgery sort of began. They set up a sterile area around my head, put a warming blanket over my body where they pumped warm air over my me, it lowers the chance of infection, and a few other things. Then they locked my head down to the operating table and that is where it stayed for the next 9 hours. When I say it couldn't move..it couldn't move. I can't think of what I would have had to do to get my head out of that thing. And believe me, by the end of the day I was thinking. They spent the next little while setting up the coordinates for the drill. They checked and rechecked the coordinates and then checked them again. They made the incisions that gave the drill access to the skull and then came the drill. To say this was a surreal experience was an understatement. This drill starts, a relatively slow speed drill and it makes contact with the skull. You can hear it chewing through the bone but you don't feel any pain. And it chews through the bone. Constant speed. Constant pressure. You can actually feel it when it is almost through the skull and then it stops short. A vacuum tube sucks up the bone chips and they have access to your brain. (Several nurses asked me later if it was true that it smelt like burning toast when the drill was going through the skull.)

Then comes the stealth, the robot that feeds the implant into your brain. Once again coordinates are checked and rechecked and checked again to make sure the implant follows the right path. Finally they are ready to insert the implant.

Here they hit a big snag. They could not get power to the implant to tell them where it was. The implant uses two different ways to tell the doctors where it is in the brain. The patient, in this case me telling them if i had any strange tingling in my arms or legs or other extremeties and sound. The implant makes certain sounds depending where it is in the brain. Because they couldn't get a reading on it, they couldn't tell for sure where it was. They thought they knew where it was but weren't a 100% sure. They were getting something from the implant but nothing recognizable. After about an hour and through the process of elimination they narrowed the source of electrical interference down to the power transformer in the X-ray machine. At last they had the interference eliminated and the process resumed. From here it wasn't long until they had the implant in the spot they wanted, powered it up..(more on that later), powered it down, locked it in place and put the wires on that would eventually run to the power pack. They X rayed it a couple of times and we were half done. There was initial discussion about not doing the second one but Dr. Kumar quickly told the team they were doing both. I have to admit, I would have been ready to quit then to but now I am glad I toughed it out. I was told the second one would not be as long because they now knew what to expect from my body.

Surgery - first couple of hours..

The surgery is over, thank God. Sorry I didnt post but the Regina General hospiatal has only selective internet access.

I will attempt to describer the surgery to you in specific blocks of time or as close as I can remember.

8:00 AM - wheeled into the OR and am greeted by two very friendly nurses, Dana and Shannon. There job was obviously to settle me down and it was a good thing they were there because the halo was coming next. The best way I can describe the halo was absolute hell. Four doctors came up on all sides of me and with military precision, they attached the halo to my skull. "Marcel, needle, right front." That was immediately fallowed by a needle of freezing in the right front of my skull and they turned the screw tight right behind the freezing. They did that at 8 points on my skull and before you have a chance to complain it is is finished. Dana told me if you can survive the halo you will make the rest of the day. A cat scan is next. They lock your head into a metal holder and do a detailed cat scan on your brain. This data is then sent to the main computer where the doctors spent the next 45 minutes to an hour deciding what was the best route for the implants to take on their journey to the center of your brain. All calculations and computations and coordinates are then sent to the "stealth", the computer controlled robot that actually inserts the implants into your brain. Let the fun begin...

Some thoughts..

Well, it is almost time.

Gonna try and sleep a few hours tonight and then drive to Regina in the morning. Will leave at about 4 AM to be at the hospital by 6:15. Surgery begins at 8:00 and will hopefully conclude at about 6:00 PM. I will be awake for the first 8 hours and then out for the last 2. The implant will not be turned on tomorrow. They will be tested to make sure they are working but not turned on or "tuned" until 3 - 4 weeks from now after my brain has recovered from the surgery. I will spend the night in the ICU hooked up to a "brazillion" monitors to ensure there are no complications with the implants. If the body does not accept them, they will have to come out relatively quickly.

Kind of in lala land right now. Not sure what to think or feel but I am staying positive.

Connie will update the blog tomorrow when needed but don't expect to hear allot before 6:00 PM.

Well folks, that's all for now.

You will probably hear from me again on Saturday. Take care everyone.

D-Day minus 2

Two day from now at about his time I should be sound asleep after having spent 10 hours in surgery. That is a best case scenario and the only one I am thinking about.

Had an interesting thing happen this afternoon. We had advertised one of our coolers at the shop for sale and two ladies from Swift Current came out to look at it. When they heard what kind of surgery I was having, one of the ladies (Kathy) told us that her sister had a similar surgery done to control her epilepsy and Parkinson's. The results had been absolutely amazing. After watching me and some of my unusual movements, Kathy said that her sisters symptoms were very similar prior to her surgery and that I had allot to look forward to.

This was very good to hear, especially with my surgery only two days away.

Tomorrow will likely be my last entry for a few days. Connie will update the blog on Thursday and likely Friday.

Take care everyone.

Some Very Special People..

I want to mention some very special people who took time out of their busy lives to organize and put on the benefit on Sunday.

Alden and Lisa, Mike and Anne, David and Jody, Randy and Kathy, Darla, Holly, Chris, Wes and whomever else was involved, thank-you so much. You will always have a special place in our hearts.

Sunday..

It has been an interesting day to say the least. The benefit was a huge success with over 200 people coming out for a church service and bbq. It was indeed interesting to be on the receiving end of a benefit after putting on so many. Never the less, the generosity shown by the community is greatly appreciated and will go along way to covering our expenses while in Regina for the surgery and being off work for the next 8 to 10 weeks.

I want to acknowledge a couple of individuals and groups for their donations. I know there is always a risk of offending some not mentioned but the individuals are somewhat unique given there geographic location. Cheryl, Nikki and Jay are from the NWT and close hockey friends. Their generous donation is a reminder that while geography may separate us by thousands of miles, friendship has no boundaries. The Herbert Lions Club has been a great partner of ours in many fundraisers that we have put on. Their generous contribution to my benefit reinforces our belief that business and service groups and individuals can work together for a common good.

Marnies will not be open tomorrow and will be in fact closed until early July. This will allow me to get through the most critical part of the recovery and hopefully Connie can then spend a little time at the shop getting it rolling again. Our staff has been very understanding and I want to thank Angela, Christina, and Nicole for their understanding.

Talk to you all later

Mixed emotions..

Well, my surgery is this Thursday and as much as I want the surgery to happen, it is not without some trepidation. The thought of 10 hours of surgery is intimidating enough but things will be ok.

Friends of ours are hosting a benefit for us tomorrow. It feels strange to be on the receiving end of a community's generosity when we have been involved with so many benefits for others over the years. Connie and I are truly blessed to have the generous caring friends we have both here in Herbert and in the hockey community across the country. Thank-you so much.

Monday will be an interesting day as we prepare for the week ahead leading up to D-day. There is lots going on and I will talk more about that next week.

Take care everyone and I will talk to you tomorrow night.

One week to D-Day

I had my pre-op appointment Tuesday and everything went more or less pretty good. Did the MRI thing and it took awhile but they did find my brain. Doctors are saying now that I will be in the hospital from 3 - 5 days and that it will be September 1st till I am back able to do a regular days work. I guess the message they wanted to drill into me was that I need to take as much time as needed for the brain to recover from the surgery and to make sure the implants are not rejected by the body. This is the only the surgery can be effective and successful.

I will update the blog more frequently now that the time is approaching.

Thanks for everything..

My Shaved Head

I get many comments and questions as to why I shaved my head. It was primarily to get over the shock of not having any hair and thus having one less thing to deal with on the day of surgery.

I didn't do it because Connie likes it, I think she hates it personally, but rather to make a statement. I am just not sure what that statement is.

Hey, for as many positive comments as I have gotten, especially from the female half of the species, I might just keep it!!!

Two Weeks to D Day

Two weeks from tomorrow I have my surgery.  I would just as soon get it over with as the waiting is driving me nuts. The thought of spending 10 - 12 hours in surgery is not a pleasant one. The post surgery time will be the most frustrating as they don't turn the stimulator's on until about 5 weeks after they are inserted in my brain. So that means I will have to deal with recovering from surgery, still be fully medicated and waiting once again for the next step.

I just hope it is all worth the wait.

Talk to you later.

Just a little history

Hi Everyone.

10 years ago I was diagnosed with Parkinson's Disease. It is a neurological disease where the brain no longer produces dopamine, the chemical that allows the brain to communicate with the nerves that control muscle movement. The lack of dopamine causes symptoms like a tremor in the arms and legs. Parkinson's generally affects one side of the body and eventually both sides leaving a person unable to do many daily function most people take for granted. Parkinson's can be controlled in its early stages with medication, however the meds have a "shelf life" in the body and eventually lose their effectiveness. As well irreversible side effects are common after years of taking the same medication.

About six weeks ago, we had a consultation with a doctor in Regina about the possibility of surgery, specifically a process called deep brain stimulation where probes are place in the part of the brain that controls muscle movement. Electrical impulses are then sent to the probes from a power pack which hopefully will stop the involuntary movements. He recommended the surgery and a date was tentatively set for mid summer and then finalized for June 18.

There are several excellent websites that describe this procedure. I have given you the Readers Digest version. 

This blog will hopefully do a couple of things. It will keep people informed of my progress as well as give me a place where I can post my feelings, thoughts or whatever for people to see.

This journey would not be possible without the support of wife, Connie, my family and our many friends both here at home and across the country in the hockey community. To those of you who are closest to me..and you know who you are..thank-you for everything you have done so far.

Please check back often, especially as the surgery nears, when I have the surgery and the two months of recovery time that I will need. Please post your comments, good, bad or otherwise.