I'm on the Drugs That Killed Michael Jackson

Yes, it's true, I was on those drugs. However, in a hospital environment it is perfectly safe. The surgery went really well and now begins the recovery. I am really tired at the moment, so I will write a much longer post describing what happened later. Until then, stay well :).

Last Post

Well, it's midnight and I'm in hospital awaiting my early morning start. I can't sleep so the nurse has given me a mild sedative and hopefully I can finish this before it kicks in. I am officially nil by mouth, but the fantastic steak dinner I had last night will see me through.

I have tried to keep my mind off things today, keeping myself busy. I did the school drop off, then went and watched my wife play netball. After which we did a little grocery shopping, then watched a movie. FYI, 2012 is not worth the 2.5 hours it takes to watch. By that stage is was time to get the kids then on to the hospital. It was great to have the whole family with me for the trip, and I think it was good for them to come and see me at the hospital so they can familiarise themselves with it. I sensed they felt much more comfortable since, as the fear of the unknown is a powerful factor in a child's emotions.

So I spent the evening at the hospital which I don't quite understand. They haven't done anything that couldn't wait until morning, and I would much prefer to be at home, but hey, here we are. I guess as it is a long procedure and an early start, the doctor likes to have all his ducks lined up in a neat little row, and waiting for a patient to turn up is not ideal.

Anyway, the sedative has started to kick in, so time for me to go to bed. Next time I blog it will be done and I will be able to let you know how successful it was. Until then, stay well:)

Karma doesn't like me :(

So in the last couple of posts I have been saying how things can be surprisingly easy when you only have one thing to worry about, and I have to say that mentally, I feel as prepared as I possibly could be for my surgery, and this still remains, except for one unexpected stressful situation that reared its ugly head this afternoon. Yes, I had to have a car accident.

Now I might sound like I'm whinging here (and I probably am) but the accident was not my fault, but unless I prove otherwise, I still get the blame. Anyway, the details are irrelevant for this blog, what is important is how I cope with it two days out from surgery. Time is not on my side, and I have to work through it quickly. All insurance details have been taken care of, and seeing as I can't drive for a month from tomorrow my wife will have to take care of the repairs. This means that the only problems left were all in my head.

So how did I feel? At the time I felt suddenly angry, but this dissipated quickly and I was left with annoyance. After I got home and had time to have a vent and a grumble to my wife I just felt stressed and worried. Still these are not good emotions to take into surgery and needed to be dealt with. So I talked it through with my wife. The rational steps to the conversation went something like this:-

1. Nobody was hurt.
2. We all did the right things post accident.
3. Insurance company was notified.
4. There is nothing more for me to do.
5. It is just a car.

And she is right, after that I felt better. Right now I am simply looking forward to dinner with friends. I think I am over my little mishap this afternoon. Until next time, stay well:)

Two more sleeps...

First, welcome to all the new followers! I have gone from two to eleven in the last two days. And thanks also for all the great feedback that I have been getting. I am glad to see that you are all enjoying it.

So I now only have two days to go until the big op. I feel pretty much the same as yesterday, except for a chat I had with my therapist. She wanted to discuss the possibility of it not working and how I would cope. Although it is an uncomfortable thought I do feel it is really important. I am certainly not entering into this expecting it to fail, but if it does the preparatory work that I do now will make things easier afterwards. Talking it through with Josie was also the right thing to do as she is good at making the conversation as easy as possible.

To tell you the truth though, I really don't know how I will feel if it doesn't work. In the short term I know I will be devastated, but how long will it take to accept it? Where will I be able to find the energy and the passion to move forward? Or find myself a role in society where I will be able to contribute? I hear many of you saying that you do contribute, but these feelings come from within, and anyone that has battled with depression or anxiety knows that the war wages within. Hopefully I will not have to fight this one, but I do know that if I do I need to prepare now. I have had enough bad news in order to know that.

Well when I planned this post I was going to finish there, but that just seems like a real low point. So I will leave you with this. We do not have surgery to get worse, we do it to get better. There are risks with any operation, but we need to be positive. I am doing this to get better and if at the end of the day it doesn't work at least I will know. If I don't do it, there is no chance of getting better and I will always be left wondering. Until next time, stay well:)

I Feel Great!

I have just finished updating my mood on patients like me and I have been surprised to find that my last five entries have all been 'good'. www.patientslikeme.com is a great website for people with chronic ailments, especially when it comes to mental health. I will review it in more detail in a later blog, but I want to focus on the mood mapping. It allows you to rate your mood on a scale of one to five (one being bad and five being great). It is fairly crude, but a great early warning system for your mental health. Oh, I hear you asking what is a rating of good. Basically, good is four out of five.

Now I have touched on my mood being good in previous posts, but I have to say I was surprised, and I did not realise that the decrease in the number of stresses would be so profound. Don't get me wrong, the stress from the impending surgery is massive! But just having one stress to deal with is so much easier. I really feel that I am learning a big lesson here, and it is a great one to learn for future management of my own mental health. As of yet I haven't figured out how to apply this new found knowledge, but when I do I will be sure to let you know. One thing for certain is that it will be a process.

So, other than the trivial day to day tasks, my main focus is on the surgery. But that is nothing new, I have told you all this already. I have told you where exactly my concerns and anxieties lie, but I haven't told you how this is making me feel. This is probably because I am not sure. Yes, there is a strong level of anxiety and worry, but there are also a bunch of emotions that are thrown in the mix, some of which I didn't even know existed. I would say I am definitely experiencing mixed emotions.

So far, the best I can come up with is that I am at a crossroads of my life. Something is going to happen on Friday, and there could be a number of different outcomes. Each potential outcome has a different emotion associated with it, so my feelings are changing with each new thought. However, I think that half of the ease of the situation is that there is nothing that I can do about it. It will be what it will be, so all I can do is wait, enjoy my family and friends and try and have some fun. I've gotta say, I have really loved the last three days with my family. Until next time, stay well:)

Last Weekend Before Surgery

First, I must apologise. A couple of posts ago, I said I was done with my medical obligations until the day of my surgery. Oops. Friday I was back in the hospital for my routine intragam treatment (that I confess I forgot about completely) and I also have to see my GP as my surgeon informed me last week that my referral had run out. It was kind of opportunistic anyway as I can get him to update my drug regiment chart and medical history report. This makes life easier as when I am filling out those damn forms I can just write see attached in the relevant sections and attach a copy to the back.

Anyway, I promise that barring any unforeseen circumstances I will have then had my last medical obligations. So where am I know? I have officially finished up at work, and here in Australia we are currently in the middle of a long weekend for ANZAC Day. The extra time is great, and although there are many positives, there are also negatives. I have almost eliminated all stressful elements from my life now, which is great, but we still have that one massive commitment to deal with. Yes, my surgery. So I have really busied myself playing with the family, having fun with friends and working on this blog. It is a wonderful distraction too. However, when I stop, my mind always drifts back to the surgery. However, being just one stress to focus on it does feel easier. Right now I feel as though I have boarded up the windows, reinforced the structure to my house, and now I am just sitting on the porch waiting for the hurricane to hit.

I know I am prepared, it is a question of simply filling in the time between now and the surgery. Rest assured, I will let you know how it goes. Until next time, stay well:)

And now, the MRI!

OK, OK, OK.... I'll get to the MRI in a minute, but first I just noticed that over 50 people had viewed my profile! Woo Hoo! I can't believe that people are actually reading it, but as I said before, I feel I have a lot to say that people may find informative and interesting and as a reader, I hope you do. Unfortunately, nobody has left any feedback so I don't know for sure. So please, feel free to tell me what you think. Positive or negative, I promise I won't take it down unless it is offensive or completely off topic. If you don't feel like giving feedback, you might want to simply tick one of my new reaction boxes to help give me an idea.

So, on to the MRI (aka. magnetic resonance imaging). Firstly, I was a little grumpy that morning as I had to fast because they wanted to sedate me for the MRI. So if you happened to cross paths with me on the way to the hospital I apologise for any beeping, swearing or rude hand gestures you might have received. Anyway, just before 9.00am I arrived at my location which felt more like the entrance to an apartment block than a hospital. I made my way up to the MRI reception, and then out it came. The form. If you have essential tremor, or just about any other movement disorder for that matter, you will understand my loathing for forms, and there multitude of annoying questions like have you had any surgery in the last six months and what medications are you on? FYI, they want more info than just 'yes' and 'lots'.

After the form, the wait started before I was taken to a change room where I was asked to change into a pair of pyjamas that would send a fashionista into shock, and then for good measure, another wait until finally I was marched into the MRI room which looked almost exactly the same as it would in any respectable medical drama. Then I thought "Am I in Grey's anatomy?" Since the neither the nurse or the technician look like the sort to have sex in a supply room, I guessed not.

Once in the room, they asked me to lie down on the bed. They put some headphones on me as the MRI is quite loud and I could also listen to music, then they fastened my head in place and then put a grill over my face that made me feel like Hannibal Lector. That's when it hit me. I felt my pulse rate rise and my hands clam up, because for the first time I really felt that my surgery was not something I would do in the future, but it was imminent and close.

They put a blanket over me because it was quite cool in the MRI room, and as they slid me in I felt the sedative start to work and I fell asleep for the duration of the scan. After which I got up, got dressed and my wife drove me home. So, have I reflected on those feelings of imminent surgery? Yes, I have. I think it is important to address these issues sooner rather than later, but have I figured them out yet? Not completely. I think the first thing I recognise is that these emotions are perfectly natural for someone in my position. Now I just need to understand and control them so I have a constructive outcome. Until next time, stay well:)

The Final Stretch

One week out and the testing is all but complete. The next time I see the inside of a medical facility will be in a weeks time when I front up for my surgery. But in this blog I will write about my final two obligations I had to fulfil before my surgery.

First, I had to see my neurologist, Dr Richard Peppard one last time. I have to say that this must have been one of the most beneficial doctors appointments I have ever had. When I got there his nurse Mary ran through everything. My long list of questions were answered and for the last fifteen minutes Richard joined us to add just a touch more clarity to the process. At the end they got me to do some tests so I would have a baseline comparison for my tremor. I had to do some fine motor skills, and they observed my tremor on video as well. They also had me do some reading as voice can be effected by the procedure, and if it is, they like to know by how much (as would I).

However, the main benefit came from having my questions answered and the assurances that I didn't even know I was looking for. Two of my main concerns were having the procedure not work and freaking out on the table. Richard shot these two concerns down in a smoking ball of flames whilst being extremely professional and compassionate too. For the procedure not working he basically made me feel like I was the ideal candidate for DBS and it would be extremely rare for it not to work. I have decided not to question the validity of this new belief as research in this area might only stand to worsen my anxiety. Sometimes, ignorance really is bliss. As for the freaking out on the table, he told me that he has never had a problem with any patient before, even Parkinson's patients, where anxiety is commonplace. He also talked up the compassionate nature of the staff and the effective nature of the drugs that they use, and if it really did hit the fan, they could always put me under with the general.

I am lucky that I have a great team working for me on April 30th, and although my anxieties have been somewhat relieved I have decided that it is still probably best to focus on the outcome and not the surgery. Next time I will talk about my MRI experience. Until then, Stay well:)

Where is my head at?

You know, I find it hard to admit that right now with just a week to go until my surgery that I almost can't focus on anything else. This is now my last week at work for six months. I have plenty to do, but I still find myself constantly thinking about the surgery. Even when I start to focus on another task, I find that my mind eventually slips back to the surgery. I guess this is normal though.

Ironically, there is an upside. With nearly 100% of my focus on the surgery, I actually feel less stressed. "Huh?" I hear you say. And I can't blame you, but let me explain. Focusing on the surgery has meant that I have found I have had no stress from anywhere else. I find I get a lot of stress from the many places, including work, house and home, marriage, kids, finances etc. But it is hardest for me to deal with them when they are all compounding on you at once. Strangely, these stresses have not disappeared, but merely seem irrelevant compared to the surgery.

This does become a problem, as these stresses that do not feel important actually are. So although I haven't been worried about them, I have had to try and take care of them anyway. It's tough. I some respect I feel like I have felt like this to a lesser extent for a while, so I have let a few things get away from me. But once the surgery is over, these things will still be there so I have to address them now. Just because they don't feel important now, doesn't mean they won't in the future.

Right now, there is one more day at work, then I have intragam treatment, then I am fully in surgery mode. I plan on spending the short time between then and the surgery with my wife and kids. For the next few weeks I will be writing the blog more as a diary than a guide to living as a patient. Until next time, stay well:)

Nerves, Anxiety and Doubt

I think it is time to address exactly how I feel at the moment. As I write this I am now only 16 days away from the surgeons table and as the title suggests, I do feel nervous and anxious, and I do have doubts. My therapist assures me that these are all perfectly normal feelings. After all, this is brain surgery, not a routine dental filling.

The first worry I have is that I don't understand the mechanism of how this procedure works. With kidney stones, there is a blockage in your kidney. It obstructs the flow of urine, causing pressure build up and pain. Remove the stone, there is no longer a blockage and the pain goes away. I get it. It's logical and makes sense. With DBS I understand exactly what they do. It is after they have implanted the electrodes and switched on the stimulation that I am confused. How does that stop the tremor? After all, the tremor is in my hands and not my head. I simply just can't see how once it is turned on it could possibly stop my tremor. I don't understand and it bothers me. I see the neurologist on Friday, so I will ask him then.

I am also anxious about a six hour long procedure in which I am awake and literally bolted to the table via screws into my skull so that I can't possibly move. When I had my big kidney op four years ago I had a procedure done in radiology where they had to insert a catheter into the femoral artery in my leg which reached up into my kidney. A coil was inserted in a vessel that they believed was responsible for the bleed in my kidney. During the procedure I felt this inexplicable urge to get up. The medical staff wouldn't let me, so I tried anyway, so they pushed me back down and juiced me up with sedatives. It would have to be the closest I had ever come to having a panic attack. So I think that it is only reasonable to be anxious about six hours of complete immobilisation.

My next worry is much more simple. What if it doesn't work? My tremor is a constant reminder that I am not healthy. It is there when I wake up and there when I go to sleep. It is relentless and exhausting. I can't turn my back on it and I can't take a break from it. It is only natural that I would pin a lot of hope on this. I understand that it might not work, and I have to prepare myself for that eventuality, but if it fails I will be gutted. It is not the fact that I have put myself through brain surgery for nothing, but I am at the end of the treatment road, this is my last best hope. If it fails, I am stuck with this tremor for ever and I don't know if I can deal with that and it scares me.

Lastly, there is the thought of living with sticks in my brain. After talking with other patients, I do realise that most people don't even notice them. But I find the thought of having them there creepy. The brain was not supposed to have foreign bodies in it. I feel like I'm turning into Darth Vader, or Garak from Deep Space 9. I have talked with other DBS patients, and they all say they don't even notice them, but even if I can't feel them, I still know they are there. I figure that I will just have to go with it, and if after the surgery it still really bothers me I can have them removed, but I doubt it will come to that.

So here I find myself in uncharted waters. I have never been in this situation before, so I am drawing from my other medical experiences and knowledge, along with the guidance of my therapist to help me through this situation. So I put it to anyone reading this blog to give me some pointers in how I might deal with these concerns of mine. Until next time, stay well:)

A small scare

Last time I said I would talk about how I felt closing in on the surgery. However, sometime something current pops up that I feel is best to talk about now whilst it is fresh than leaving for later, such as my small scare.

One thing I have learnt over the last few years is that if you have a problem, see a doctor. Even if it is embarrassing, or you think you can put up with it and just ride it out see a doctor anyway. Small, easily treatable problems can sometimes become much larger, difficult to treat problems, or they can be masking a much larger underlying problem. But you will never know unless you see your doctor. People die from waiting too long.

So just before Easter, when I started to develop a cough I did not hesitate in taking myself to Clock Corner Medical Centre to have myself checked out. Unfortunately for me my normal GP was on holiday, but that didn't matter as all my files were on record and there were plenty of other doctors who could treat me and I felt with my surgery less than a month away I needed to see someone now.

The surgery did add an extra degree of urgency for me. I certainly did not want to take a cough into my brain op. Firstly, it would add an extra degree of risk and discomfort that would not be wise, and secondly, seeing as the operation was strictly elective they would postpone and I would have to wait another three months for the surgery. Seeing as it has almost been a year since my neurologist and I first made the decision to have the surgery the extra wait is not an option. It takes up a lot of mental energy to prepare for surgery, especially one like this, and a disruption in the timetable adds a great deal of stress that is not required.

So I was at the doctors, and she did the normal tests, (blood pressure, pulse, listened to my chest etc.) and diagnosed me with a mild chest infection. Treatment was a course of antibiotics with a repeat if required. I decided to take the repeat just to make doubly sure I would be OK for my surgery.

After my doctors visit I knew I had done the right thing. I was diagnosed with an easily treatable, mild chest infection. Had I left it unchecked the infection would have got worse, and would have been much harder to get rid of, maybe even requiring hospitalisation and I would have almost certainly missed my surgery. I guess the moral of the story is if in doubt, see your doctor. A yearly check up for everyone is a wise idea too. Until next time, stay well:)

The list

Wow, I just read through my last few posts and they have been quite heavy, so I thought I should lighten the mood a little. A few days ago my wife asked me what I wanted to do after my surgery and my tremor had subsided. Shock horror to me I had no idea! I had been so wrapped up with the actual procedure I had forgotten to think about the after! So I thought it is high time I formalised a bucket list of both short and long term things to do. So here is just the start, I'm sure I'll add to it over time:-

Short term

1. Make myself a cup of tea.
2. Make a toast with a full drink and one handed.
3. Eat with chop sticks.
4. Write something. Anything!
5. Wear buttoned shirts again.
6. Collect all 120 power stars on Super Mario Galaxy for Nintendo Wii. (Yes, I am a long time gamer addict)
7. Finish Zelda - Twilight Princess.
8. Beat my brother at NHLPA hockey for the Sega Mega Drive (Like I said, long time gamer)
9. Improve my putting in golf.
10. Shuffle the playing cards.

Long term

1. Go back to the Grand Canyon and ride the rapids down the Colorado river.
2. Travel round Australia in a camper van.
3. See the Pyramids.
4. Visit the Great Wall of China.
5. Do a hot lap in a Ferrari.
6. Learn to fly a plane.
7. Go into space.
8. Have 1000 people following this blog (only 998 to go!)
9. Go five years without surgery.
10. Still be happily married in 25 years time.

Well that's ten for the long and ten for the short. As I think of more I'll make a note and update the list in another post. Next time I will talk about my personal feelings about the surgery. With less than three weeks to go I am starting to feel the nerves. Until next time, stay well:)

Lots to think about... Part 4

Surgery affects the patient more than anyone else, no questions asked. The statement itself is so obvious it probably isn't even worthy of mention. But it does give rise to a statement that isn't nearly as obvious but still very important, and that is that surgery affects a lot of other people as well as the patient. Your friends, family, work colleagues, carers and other aquaintances can all be affected, and as a patient going through surgery it can be very easy to ignore how they feel. It is important that you don't, and the best way to ensure this is to prepare before surgery.

For me, the people that matter most are my wife and children. After my surgery, and I have been discharged from hospital, it will be my wife that will look after me. So how can I help? Well, preparation is the key. The more I can do now to get everything sorted out the better. This includes having our will updated, making sure that all bills are paid so we don't have anything to worry about when I am sick, a number of frozen meals are prepared and things are ready for me on my return from hospital. I am lucky though, m wife is great and looks after most of the things around the house anyway.

As for the kids, that is a different story. Last time I had surgery I read my kids a book called "Ben goes to Hospital", which outlines the process of going to hospital and is tailored for children. They both seemed fine and happy until the next day (the day of my surgery). My daughter was very clingy and said 'dad, I don't want you to go to hospital, you could die'. I assured her that I was not going to die, and that I had to go to hospital. The main point is they were not OK. I've since done a little research and decided that the I should be perfectly honest with them, be available to them when they want to ask questions even if it is a little inconvenient, but play it down as being routine. Kids understand more than we think, but there is know need to dwell on the negatives.

I have been overwhelmed by the number of friends and family who have shown genuine concern. I have been truly touched, and the fact that so many people care means an awful lot to me. Most people end up saying the same three things.

1. Please let me know how it goes?
2. Is there anything I can do to help?
3. I wish you all the best and hope it all goes well.

Honestly, it is nearly impossible to individually catch up with so many people but luckily for me we live in the age of social media. I will keep all my news posted here, so I have been telling everyone just to read this blog. As for there help, it is great to know so many people are willing to help but in most cases it won't be needed. Still it is very comforting to know that I do have so much support that I can count on if needed.

Lastly, me. This is a huge thing for me. With out a doubt the biggest surgery I have ever had. So what do I need. Well, I have spent a lot of time researching the procedure, as I like to know exactly what is going on. I have also got myself in a position where my business can run without me, and had my will updated. Lastly, I have taken my family on holiday, and spent a lot of time catching up with friends and family before my surgery. Once I have done this I should be ready. I hope. Until next time, stay well:)

Lots to think about... Part 3

If you are currently sick and laid up in either hospital or at home work is probably the last thing on your mind. I hear you. Really I do. When I was in hospital for my three week lay up I couldn't care tuppence about work, and I run my own business! All I wanted to do was get all the tubes out of me, get home, get better and sleep in my own bed.

However, once I was better, work came back into focus and and I had a mountain of stuff to get back to that was overdue and in urgent need of attention. I was lucky that I had some great staff doing a great job, but there was some tasks only I could do and the lack of focus I had in the aftermath and the shoddy paperwork that ensued still haunts me today.

So how can I make this surgery experience different? Well first, I have come to the realisation that I had been struggling at work for quite some time, and carrying on trying to muscle through it was doing nobody any favours and was effecting my health. So after my surgery I will be taking an indefinite period of time away from my business which will help me to get my health back on track.

However, I still need to make sure that I plan my departure properly. I have to train people up to do the jobs that I do, and put certain checks in place to make sure that the money and banking is properly administered. Once I have this the way I want it I can head off for my surgery knowing that I have everything taken care of and there will be one less stress in my life when I am recovering. Next time I will talk about getting things ready from a personal perspective. Until then, stay well:)

Lots to think about... Part 2

Bad news for sick people. It is statistically proven that if you have one serious chronic ailment, you are more likely to get a second. And yes, that includes me. I regularly see doctors, and get treated for cystinuria, CIDP, depression and essential tremor. I believe that in some way they are all linked, but none the less, they all require a different set of doctors and treatments.

Now with my up coming surgery, I am being treated for only one of these diseases (essential tremor) and during this process, this disease will not be neglected. However, the others might be. When I had my big surgery four years ago, I missed two doctors appointments and one treatment for my CIDP. This had the potential to be very counter productive and even dangerous. Doctors set your appointment schedule so they can best monitor how your disease is behaving and intervene early enough if something is wrong. Your treatment schedule is designed to achieve the best results. Luckily in my case, no permanent damage was done. But I don't want to put myself in that situation again.

So how can you prevent such a scenario? Well, firstly there is a lot you can do with the timing. I have seen or am seeing my doctors shortly so I will not have to see any of them for at least a month after the surgery. This way, I don't have to worry if things take a little longer than expected at the hospital. I have also timed my treatment for one week before the operation, so I won't need another one until three weeks afterwards.

The second thing that I can do is communicate with my doctors. If they know what is happening they can make decisions to alter my treatment if necessary. My wife is across all my doctor appointments, so if need be, she can make the arrangements. Well, next time I will talk about the importance of tieing things up at work. Until then, stay well:)

Lots to think about...

So, in 31 days time I will be spending the night in hospital, awaiting the morning of my surgery, and aside from the doctors appointments in the interim, there is a long list of things that need to be done outside of preparing for the surgery. This one really caught me out about four years ago, when I went in to hospital to have a kidney stone removed in a procedure that should have kept me out of action for a week. However, things did not go to plan, and a three day hospital stay became three weeks!

In a three month period I had 23 nights in hospital and seven operations requiring either anaesthetic or sedation. It took four months to fully physically recover, and today I think that I still carry some mental scars that I don't know if I will ever recover from. So for four months I pretty much did nothing accept recover from surgery, and whilst I did that the rest of my life stopped. Unfortunately, the world didn't, which left things undone, or others to reign in the slack. I was lucky though. I had (and still have) many good people around to help.

So, in order to avoid a repeat performance I have decided to be prepared and get as much done before the surgery as possible. Please bare with me, in the last four years I have not had a surgery that has warranted such preparation, so for me this as much a learning process as it might be for you reading this.

I have broken the areas of my life down into four areas that I believe require attention. They are:-

1. Other medical (treatments not relating to DBS)
2. Work
3. Family and self
4. Personal obligations

Just from planning my blog I have found that most things I need to worry about will fit into one of these four broad categories. Next time I will talk about what I need to do to prepare with my other medical issues, and why t is important. Until then, stay well:)