This is scarily cool!

What they can do with the brain is amazing.  I'm living proof of that with my deep brain implants, but this is even more amazing.  I saw this on the Dr Wes blog and had to share it.  Stay well:)

St Vincent's Private Hospital

Well, here is my last hospital review. St Vincent's Private Hospital. And it is good to end on a good note. SVPH is the last hospital that I have visited and where I had both of my brain surgeries. It is also the best hospital I have visited.

Both times I went to the ward before surgery. Tick. The OR's, pre op and post op were all great. Tick. Wards were nice. Tick. The food was brilliant. Tick. The nurses without question were all great. Tick.

Yes, as far as hospital goes this was great, but still not perfect. The ward was on the fifth floor and outside was the street, so I couldn't just get outside for nice easy walk. At Warringal Private the gardens were small, but to be able to go outside and get some fresh air in a pleasant environment which was always a welcome escape from hospital life.

It wasn't easy to get outside at SVPH let alone in a pleasant environment. However, there was a coffee shop down stairs which did provide some escapism. It does sound like I am picking on the little things a bit, and it would be impossible for SVPH to do anything about this specifically, but they could find other ways for patients to feel more comfortable.

Next time I will review all the hospitals in a recap and attempt to give some pointers to you on what one should look for when selecting a hospital. Until then, Stay well:)

Onwards and Upwards - Part 3

My final two doctors visits were to the neuro surgeon and the neurologist. The surgeons visit was a fairly routine post op visit. He just wanted to see the stimulator in action and check there were no complications, which luckily, there weren't. I also got the green light to exercise, swim, drive and fly! I have my freedom back which one does not respect until it is taken away. I see him again in twelve months.

The other visit, which was to the neurologist was far more entertaining. Finally, I think I have broken the back of my programming conundrum! This has been a great step forward to me as the last six weeks have been rather frustrating and my impatience was growing. Now, not only do I have a the opportunity to vary my setting a little around where the doctor feels I have the best benefit, I have two completely different settings.

They are labelled A and B. A, gives me the maximum tremor control I can hope for, but along with that comes the lack of co-ordination, slowness and unsteadiness that I have had great issues with. So when I am sitting down, eating, drinking or writing etc, it is the setting of choice.

On setting B I have only limited tremor control, but the co-ordination problems are almost non-existent so I can pretty much do everything that I could before with just a little less tremor. This is great for when I'm up and about like cooking in the kitchen, driving or at the shops.

After this setting adjustment I finally have felt like the whole process of the surgery has definitely been worth it. I feel as though I have a better quality of life, and although there will be other setting adjustments to come, the back has been broken, so look out world here I come!

Next time it will be back to the hospital reviews. Until then, stay well:)

Stage 2

Tomorrow I am having stage two of my surgery. I can't remember if I explained this to you all yet, but if I didn't here it is. So far I have two electrodes about the thickness of a toothpick reaching straight into the centre of my brain, which are fastened solid to the outside of my skull so they don't move. In stage 2, which is done under general anaesthetic, they attach a wire to the end of these electrodes, and then run it under my skin down my head, behind my ear, through my neck and into my shoulder. Here another incision is made and a battery is inserted. The wires are connected so a constant charge can be sent to my brain.

Most of the anxieties I had before stage 1 I no longer have. I know from the in surgery testing that the stimulator will work on some level and as for having a foreign body in my head, I haven't noticed it even a little bit. However, I have noticed the staples in my head, which I can see, feel and itch like crazy.

So how am I feeling about stage 2? There are mixed feelings really. First, they will be taking the staples out which I can't wait for. I don't like the way they look or feel so once they are finally gone, the better. Second, it is one stage closer to finally getting the thing turned on. For stage 1, I didn't let myself get excited incase it didn't work. But this time I am, and the sooner I have the operation the sooner I can turn on the stimulator.

However, there is still an hour and a half of surgery to go and I am not looking forward to this. A general anaesthetic for that long normally makes you feel fairly ordinary so I am expecting feelings of nausea and discomfort. Also there are the nasty surprises that you can get which you don't want. I explained some of these I had after stage 1. I will be quizzing the doctor quite heavily tomorrow morning before the procedure to eliminate as many of these as possible. Next time I blog will be after the surgery, and I will tell you how it went and how I feel. Until then, stay well:)

The Itchy and Scratchy Show

Well, it's certainly itchy, but I am not allowed to scratch my wound. To start with I still have a bandage on it, and secondly scratching it would increase the risk of infection, and seeing as though I now have two electrodes protruding deep into the centre of my brain, infections could be highly risky. This risk will not subside until the wound has completely healed over, but the doctors are very happy with the way it's healing at the moment. The most I can do to combat the itching at the moment is put pressure on the itchy spot with my hand which wouldn't feel as nice as a good scratch, but will have to do for now. The only other option is to get my wife to change the bandage, and when the antiseptic is applied the stinging is a welcome break from the itching.

They tell me that the itching is a sign that the wound is healing and will subside when the staples are removed which brings me onto a better piece of news. I have a date for my stage two procedure which will happen on Wednesday 12th May. I am actually genuinely looking forward to this as it will give me a sense of completion and also mean that I can finally have my staples out.

For those of you that are confused about stages one and two, I will explain them to you. Stage one is the initial implantation of the electrodes, including their positioning and testing. Read my post entitled 'Recovery Time" for more information. Stage two requires feeding the power wire down under the skin from my head down behind my ear, through my neck where it finishes just below my clavicle. Here the battery is inserted and connected with the wires. For more information on the device visit:

http://www.medtronic.com.au/your-health/essential-tremor/therapy/what-is-it/index.htm

So, aside from the itching I have been recovering very well. I have still been sleeping a lot, but not as much as at the beginning of the week. I am quite up beat, and hopefully by this stage next week I should be able to have the stimulator on twenty four seven. I would almost say I'm excited about the future now. With the hardest part of the procedure behind me it is hard not to be positive. Until next time, stay well:)

Expect the Unexpected

I must admit, I have been a little ambitious with what I expected to accomplish with my blog. My last post about the day of my surgery I expected to get out on Saturday, the day after. This post about the initial stages of recovery I expected to get out Sunday and it is now Monday, but I shouldn't be surprised, this is brain surgery, and even though I haven't had much pain I have been really tired. I have been sleeping more than 16 hours a so I guess it's not surprising that I have not been posting my blog with free flowing regularity.

The point that I want to make today is about recovery. No matter how much preparation is done for a surgery, things are never quite what you expect. I researched this procedure in greater depth than I did my final year uni exams, but there were still a few surprises. The first as I already mentioned was how tired I've been. In other surgeries I have had the pain has been worse, but after I recovered from the initial anaesthetic I wasn't tired, which normally meant that as I slept all day, and was then awake all night.

Second was the boots I had to wear. I was aware that they would make me wear compression socks as this is general practice for all admitted patients almost anywhere these days. However, I didn't expect the sequential compression boots I was wearing. These boots systematically filled up with air, a bit like a blood pressure cuff, in order to promote circulation and prevent blood clots. To start with they felt quite nice, like a gentle leg massage, but as time went by they began to itch and my legs got hot and sweaty inside them. Had I known about them I might have been able to prepare. Maybe use some powder or cream, or wrap a towel around my legs inside the boots.

A more worrying problem I had was with my speech. I knew that the stimulator could effect speech, but I thought that that only happened when it was turned on. However, in post-op I noticed that my speech was slower and slurred some what. This could have been a side-effect of the drugs and only short term, but I feel that there was more to it than that, and the side effects were still felt over a day later. Everyone tells me that they could not notice it, and I believe that as time has gone by and the swelling has gone down it has got better. But the fact that it was unexpected is rather disconcerting.

Finally, my last unexpected surprise was the size of the cut. When researching the procedure I found pictures of scars that were only an inch long on either side, so you could understand that I was a little distressed when I saw the wound with over 30 staples. I does not really bother me, but I would much have preferred to know before the procedure so I knew what to expect. The doctors had always played down the size of the incisions and coupled with my own research had led to misinform me. This brings me on to a much larger topic, but I will handle that later. The general rule is however, as with many things in life, it will never be quite what you expect.

Well, apologies once again. I said at the start it was Monday, and although I started writing it on Monday it is now Tuesday evening (apology exemption for US readers, who should still get this on Monday) but the days go by quickly when you sleep 16 hours a day. Next time I'll simply give an update on how I am. Until then, stay well:)

Recovery Time

First, thanks to my wife for allowing me to dictate yesterdays post to her. I never would have been able to get it out there without her. Well, yesterday was a very busy day for me, so bare with me, because today's post is probably going to be a long one. I was woken up at 5.45am which didn't really bother me because I couldn't sleep very well anyway. The nurses were keen to get me ready straight away as I was the first patient of the morning. So I had my shower with some special anti-bacterial lotion, and once I had dressed myself in the highly fashionable hospital garb, it was time for that very long trolley ride to the OR.

Once I got to the OR the first people I met were the anaesthetist, Dr Nikki Tan, and her assistant Luca. They were both very friendly and reassuring which was great as I have to admit I was really quite nervous at the time. I have been in the situation waiting for surgery before, but this was different. Having a doctor sticking pins into your brain is a scary thing to think about. It is like they are playing with your very soul, so the friendly assurances were extremely welcoming.

After a short wait the surgeons assistant came in to give me a hair cut and then Nikki started running the sedatives in through my IV and when I woke up my hair was completely gone and Prof Bittar was attaching the stereotactic frame. I must admit that although local anaesthetic had been injected all over the process was quite unsettling. There was a lot of pressure like having my head stuck in a vice, and since I was asleep for the head shave I wasn't quite sure why they didn't keep me asleep for that. The local anaesthetic felt weird as well. Although I couldn't feel anything I also could not frown or make any facial expressions above my eyes. I guess that's what botox would feel like, so remind me never to have it.

With the frame now securely in place I felt like Frankenstein as he was awoken by the doctor for the first time. It was extremely heavy, and uncomfortable on my neck as there was uncomfortable gap between my neck and the pillow. However, before I had too much time to think about it the OR was evacuated as we all headed down to radiology so I could have a CT scan. The trip was long and I certainly got some interesting stares from passers by. The CT scan took very little time and then I was escorted back to the OR by the same entourage of about ten people. Once there the sedatives were ramped back up and I fell back to sleep.

When I woke back up the frame had been wrapped in plastic to isolate the top of my head and they were ready to start testing the first implant. I kept hearing the doctor describing the position of the implant from the target and when he was happy with the position they tested it out. They tested the left side of my body first which meant that the first implant went in the right side of my brain.

For the testing, my neurologist, Dr Richard Peppard, was also there, and instructed the surgeon what level the stimulator was set to. The first time they fired it up I felt a tingle in my fingers then, amazing. My hand stopped shaking. I can't explain what happened, it was simply remarkable. My hand was still and I had no idea why. All I can say is that all I could do was smile and laugh. I felt overjoyed, but as soon as I started to become accustomed to the feeling they turned it off and started to work on the other side.

The right side of my body wasn't quite so simple. When they turned the stimulator on my tremor did stop, but my voice became very slurry and the right side of my face started to droop to the point where I couldn't open my eye. This feeling was really quite scary because I also became very dizzy, but as soon as the machine was switched off the side effects subsided. I started to feel rather agitated at that point. After the great results on the left side I wanted to get the right side done and the frame off me head, but hey played around with different depths and frequencies until they were happy with the results. Prof Bittar then offered me the choice of having stage two of the surgery done there and then or waiting a week or two. I wasn't bothered which way he went, but one of the frame clamps was attached where he would run the power line to the battery, which increased the risk of infection slightly, so I left the decision to him and he decided to wait. After which it was back to sleep and the next time I woke up I was in recovery.

In recovery it felt like the stereotactic frame was still on my head which was quite sore. Other than that I felt fine, so after an hour of constant monitoring it was back to CT for one more scan (this time without the entourage of medical staff) before returning back to the ward.

So, how did I feel on return to the ward. The main emotions I had were both relief and worry. I was relieved that it was all over and I knew that at least on the left side I was going to get a really good result. Worried because my speech was still slurry and I hope that this wasn't going to be a more permanent side effect. Fortunately, over time this has subsided and at least the hardest and most dangerous part is over now. In my next post I will let you all know how I am going recovering. I have also attached a few photos for your amusement. Until next time, stay well:)

Photo of myself wearing the stereotactic frame

The incision

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:)

OK, I'm officially psyched out.

Well, after two psychologists appointments in two days, I think that it is safe to say that I am officially psyched out. Last time I talked to you about the clinical psychologist, and today it was the turn of the neuro psychologist, and as yesterday, I had a list of questions that I wanted to know:-

1. What were all the purposes of this appointment?
2. What exactly are all the tests that you will run?
3. What are the disqualifying factors?

As this procedure was not invasive I wasn't really concerned accept for one thing. Could this appointment exclude me as a candidate for surgery? The short answer was yes, but as it happened I had nothing to worry about.

So, what happened? First, we started with the general chit chat. I asked her my questions and she gave me a brief explanation of what we would do. From then on it was all testing. There were tests for my memory (both long and short), cognitive reasoning, IQ, problem solving, mental stability, and mental health. I was a little bit annoyed by this last section. She asked some very strong questions, such as "What do you think the worst thing that could happen is?" and "What will you do if the procedure doesn't work?" and then we explored these further in quite a lot of probing detail. She also didn't like my answer to the former, when I didn't acknowledge death as the worst thing that could happen. The fact is, the way I see it is I could have a stroke and live 40 years as a vegetable. She also didn't understand when I said I did not fear death. Don't get me wrong, I love life and I am not looking to hasten my demise or take ridiculous risks, but death doesn't scare me and I don't think she quite understood this. I also felt that this was covered by the clinical psychologist and I didn't really want to cover it again.

Anyway, at the end of it, I got the seal of approval to go ahead, and a full set of psychological benchmarks to compare against, God forbid something does go wrong with the surgery (which is the main reason why we did this). Now we are just a month out from my surgery I will take you through my checklist for getting ready in my next post. Until then, stay well:)