Controversy afoot!

Well, let me just say that I know I said that I'd give you examples of what the occupational therapist recommended that I purchased and next time I promise I will. Pinkie swear. But I saw something recently that really got my back up.

Now, don't get me wrong. I believe in the right to freedom, and people I believe have the right to do what they want provided they take responsibility for it and are not hurting others. Only those close to an individual should be able to tell them what to do.

However, I believe there is one exception, and that is pregnant mums who smoke. So what did I see that got my back up? I was at the hospital the other day when I saw a couple of pregnant women come and sit at the hospital coffee shop for a drink (nothing wrong with that). But then they both lit up! And to top it all off they gave all disgusted onlookers a stare as if to say "what are you looking at?" and "What right have you got to tell me what I can and can't do?"

Well I'll tell you. You can do to yourself whatever you like. But it isn't just about you. You are potentially exposing your child to a wide range of diseases that could present themselves at any stage of the childs life, you could even kill them. To top it off the welcome to the world present you give your child is a nicotine addiction that the poor baby spends the first week of its life fighting (something you were unwilling to do).

So why am I so passionate about this? My mother smoked during pregnancy and I wish someone had made her stop. Let me clarify that I don't blame her at all. Back then they simply didn't know the harm it could potentially cause, but now they do, so if you are going to be a mum and you smoke, quit.

Until next time, stay well:)

Ouch, it still hurts!

Well, that's not quite true. My hands still hurt from time to time but on the whole they are better. Anyway, I can't use that as an excuse for not writing my blog, but one thing is my hands are, so much so I think it takes about four times longer to write anything.

But my hands still hurt so I talked to my neurologist about it and there is little that can be done wihtout getting quite invasive. Treatment options so far include wearing wrist braces, frequent exercise, not sleeping on my hands and not letting my hands get tired from using them for fine motor skills etc.

On the medical side I can either ramp up my steroid input or carpel tunnel surgery may help. Either of which is not a great option so I am going for the non medical alternatives. I have already increased my exercise by going swimming and got some wrist braces. Anyway, I'll keep you posted on how it all goes.

Until next time, stay well:)

OT

The other part of my rehab was to see an occupational therapist. Again, when I started I didn't quite know what was involved, but we sat down and discussed what my objectives were and then we got down to business.

As opposed to physio which was supposed to be therapeutic and improve my functionality, my time with the OT was purely educational and focused on two aspects.

First, maximising the use of what you have by making sure you use it properly and also learning new strategies of how to use things to get more benefit from them.

The second aspect was to look for new equipment to assist in everyday living, and i have to say there is a bunch of stuff out there to help, from button hooks to cooking aids, there is an amazing amount of stuff. Even without a disability,, some of it would be really useful. In future blogs I will categorise some of the new equipment I have got.

So, what did I think of it. There is no question that the process has been beneficial, but I keep wrestling with the fact that I feel ripped off with having to go in the first place. I guess that it is always hard coming to terms with the fact that you are sick, and the road to recovery can be hard and sometimes even unattainable. Until next time, stay well:)

Physio

I have seen a physio before. Every time I have a stiff neck or my muscles don't feel quite right, off I go. But this was different. The aim of the game was to improve simple tasks that I was now starting to find difficult. Such as walking.

So, what was the process? There were two main objectives, strength and balance. If both of these were improved, then tasks such as walking should be easier.

In the first session, the physio tested my muscle strength and identified muscle groups that were weak and needed work. They then gave me exercises that would strengthen those muscles.

They also tested my balance. This involved things like shutting my eyes and seeing how long I could stand still for, and pigeon stepping along an imaginary tight rope. Again, a series of exercises were developed so I could practice and improve.

During the process I did question the validity and the good that was being done, but I stayed the six week course and at the end the benefits were easy to see. Not only did I improve my results the first set of tests, I improved my walking and other skills.

So it has been worth it, and I thoroughly recommend it for anyone in a similar situation. Until next time, stay wellJ

Artificial Kidneys

The following link was forwarded to me by a friend that I think anyone with kidney problems may find interesting. I know I have a few fellow cystinuiric patients reading my blog, you will surely be interested. But it is still early days, and I can't see this being preferential to transplantation for a long time to come.

Enjoy.

http://www.gizmodo.com.au/2010/09/researchers-announce-first-implantable-artificial-kidney-prototype/

My first day at rehab

So I sucked up my pride, told myself that what I was doing was good for me and off I went to Epworth rehabilitation hospital in Camberwell. Now, I have never been to a rehab facility before (as a patient or other) so I did not know what to expect, but my opinion was highly favourable.

I don't know if this was simply because the staff were really nice or it was genuinely a good facility, but I can't say for sure as I have no basis of comparison, but one thing for sure is that the staff were really great.

Before I arrived I had been given an outline of who I was going to see, and my first appointment was with the physio, a delightful, warm and caring person called Tiana. For this session we took some measurements of my strength and balance, and also discussed what I wished to achieve. From here she developed a plan for me for future visits. I will elaborate more in future posts.

After the physio I met with Delia, another delightful, warm and caring person who is an occupational therapist. We talked about what made my day to day living hard and what could be done to make it easier. We wrote a list of goals I wanted to achieve and from here she also developed a plan. I will also elaborate on this further in future posts.

Overall, my first experience with rehab was positive. I understood what the process was and what it was designed to achieve. More importantly, I didn't feel like an ability impaired person who was the pity of society. Until next time, stay well:)

Rehab

To tell you the truth, I had a hard time accepting the fact that I needed rehab. First, I was a victim of my own ignorance. I thought rehab was for Matt Newton, Lindsay Lohan or Ben Cousins. People with substance abuse problems, and although I have enjoyed a drink from time to time, I have never taken drugs and do not fall into this category.

But as I said, I was a victim of my own ignorance. Rehab is for people with a wide range of disorders. Most of the patients were either car accident victims, stroke sufferers (or other brain injury patients) or elderly patients that had had a fall. In fact, the facility that I went to did not treat addiction.

The second problem that I had was simply accepting that I needed to go to rehab. I am 35 years old, and I have looked after myself. Up until I got sick I was active fit and healthy. I ate well and did not abuse my body. Rehab is for old people or those who have not looked after themselves, or for an unlucky few have been in an accident. I fell into none of those categories.

I understand that these thoughts do sound selfish, and if I strip them down, they are. But I think all sick people feel cheated in some way, and I have decided to share how I feel for two reasons.

First, even when you think your feelings are selfish ad unfair I feel it is so important to address them and talk about them. Bottling them up is not good for you, just make sure you choose wisely who, when and where you share your feelings.

Secondly, I cannot convey to you all how I feel if I don't share all of it, and by addressing how I feel I can deal with it and move on. So how do I move on?

I start by addressing my issues. It is not fair that I need rehab, and by telling myself that I validate how I am feeling. But there is nothing I can do about it and rehab will be good for me. So swallow my pride and get on with it. Earl Woods told Tiger Woods that when he hit a bad shot he could be angry at himself for ten steps, after that he needed to focus on what needed to be done afterwards. The same applies here. Be angry and validate your feelings, but afterwards you must look ahead.

Next time I will share with you my actual experience with rehab. Oh, and if you are curious, my hands are feeling better, but I think this is a problem that will resurface again. Until next time, stay well:)

Ouch, it hurts!

I must apologise, it has been a while since my last post. But I do have an excuse, my hands have been killing me.

This has been a real problem at night when I wake up and they just hurt. The only way to stop it is to get up and move around and after about ten minutes it goes away. Any sort of pain relief is quite ineffective.

Secondly, it has been a problem when I try to do something. If I turn my hand over I get a snapping, shooting pain down my wrist and into my hand, which is why I have been avoiding blogging for a while.

Unfortunately for people like me, it is a statistical fact that if you have one serious medical complaint you are more likely to have a second, which is why it is so important to stay healthy (but that is another blog).

It also begs the question 'what am I doing about it?' Since pain meds won't work, I have simply tried to minimise my activity to compensate. I have also been wearing wrist braces at night to stop the night pains. So far, it has worked and I have felt better the last couple of days, but I see the neurologist on Thursday, so I will discuss it with him then.

I don't think it is anything to do with the DBS, but I do think it is a nerve thing, so the neurologist should be able to help. I'll keep you posted. Until then, stay well:)

What to talk about?

Well I actually have a lot to talk about on my favourite subject, me! Since I last gave you an update on what I have been doing an awful lot has taken place. I have been through the surgery and I feel I would be doing myself a disservice if I didn't do my part to make it as successful as possible.

So, in order to do that I have taken the following steps:-

1. Keep all my doctors appointments, follow their instructions, be honest with them and call them if I think their are any issues (which thankfully there hasn't been).
2. Take time away from work to focus on my health, physically and mentally.
3. Get fit. I have been training twice a week and swimming two or three times a week anywhere from 400m to 1000m.
4. Do my rehab and associated exercises.

It has been quite exciting to see the improvement, but I won't lie, it has also been tough. In my next post I'll elaborate further. Until then, stay well:)

Hospitals - done and dusted - Part 4

So where else can you get information about the hospital you are going to visit? I think that there are two other sources that you can use.

First, you can simply ask other people who have been to that hospital before. You may have had friends or family that have been to the hospital. Make sure that you have asked around your own network of friends, because one thing that you know for sure is that they will be honest.

You should make sure that you also have your questions ready. Find out what things are most important to you and ask about them. Vague questions like "what is it like?" will rarely get you the answers that you seek.

The other source of people you can ask is other patients. You can either actively seek them out (ask your doc for other patients to talk to) or be a little more passive and simply ask other patients in the doctors waiting room. You are likely to find other patients who have been through the hospital there.

Secondly, if you still want answers, you can go and visit the hospital. That will give you a first hand look at what the place is like. You can also talk with the staff and see how they operate first hand. Remember though, that you cannot always look at every place in the hospital. For example, the OR's will (and should be) out of bounds to the casual visitor, but there is nothing to stop you visiting the public areas or the wards.

Next time I'm not sure what I'll talk about. But rest assured there will be a next time. I do have a few ideas, but if you have any suggestions, let me know. Until then, stay well:)

Hospitals - done and dusted - Part 3

If hospitalisation is in you near future you are probably wondering where you can get all the information you require. Well, there are number sources where you can look.

Internet - Unfortunately for Australians there is not many sites where you can go and find ratings and reviews of hospitals. www.ourhealthservice.com.au gives details of many hospitals, but certainly does not tell you what the hospital is like. The reviews which it is counting on are sadly lacking.

Another site which is aimed at the US but allows for international hospital reviews is www.healthcarereviews.com. However, a lack of reviews make it hard to make a good evaluation. So is there a point visiting these sites. YES. Visit them and leave a review. Once enough people have visited and left a review, the site will become extremely handy.

The last site will draw your attention to is www.hospitalcompare.hhs.gov. This site is only for the US, but it compares hospitals using quantitative data collected and gives the patient valuable information when looking to select a hospital. Australia could really use something like this.

So, where else could you look for information on the web? Most hospitals have a website these days, so it is never bad to look at these to get some information. Just bear in mind that the website is used to paint the hospital in its best possible light, so be ware, but some good information can come of it.

Next time I'll tell where else to get information about hospitals. Until then, stay well:)

Hospitals - done and dusted - Part 2

Making sure that your hospital is capable of taking the proper care of you is very important. And it comes down to two things. First, the quality of the hospital and secondly, their capabilities. I will use two examples here. The Sydney Adventist Hospital and Cotham Private.

The SAH is a big hospital. It caters for multiple disciplines of surgery and had a fully functioning emergency department (which I have never been to). There is not much that isn't done at the SAH. But the question you have to ask yourself is "do they do it well?" I feel the answer is no.

The processes are streamlined to maximise efficiency and one thing I picked up on was that the staff were disgruntled and patient welfare was sacrificed. It is what you get when a hospital is run by bureaucrats and administrators, and I would feel very uncomfortable going back there.

Cotham private is by contrast the exact opposite. It is a much smaller hospital and certainly didn't cater for all different types of surgery. However, what they did do seemed to be more than they were capable of. For small surgeries the highly skilled staff seemed very proficient, but would I want a major surgery there? The answer is no. I something went wrong I would question their ability to deal with it.

You must also make sure you will be comfortable during your stay. Especially if it is a longer stay. Surgery is traumatic and if you let it, it will effect your mental health and leave you with nothing but a miserable memory. Don't get me wrong, surgery is never fun, but if you do it right it will be an inconvenient and mildly uncomfortable event that is a good opportunity to catch up on some reading or DVD watching. Done wrong, it can feel like hell on earth.

So when you are in a hospital, make sure that you are going to be comfortable. A lot of this can be done by what you bring, but also look for the following:-

1. Nurses are kind and responsive.
2. Colour of the ward is warm and inviting.
3. You have your own bathroom.
4. You have a single room if desired.
5. The food is good.
6. You have good entertainment provided.
7. Hospital has a nice setting (good view, easy to get outside, coffee shop, etc)

Next time I will explain where you can get this information. Until then, stay well:)

Hospitals - done and dusted

Well, I have finished my review of the hospitals and right now I would like to use this post to explain what I think you should take into consideration if you need to go to hospital. Like I said at the start of the hospital reviews, you do have a choice.

Most doctors have a number of lists at more than one hospital, so you can go to anyone of them. In extreme cases you may even want to find a new surgeon. Just for an example, I could of had my brain surgery at the Alfred hospital, Royal Melbourne or as I chose, St Vincent's Private.

I had my kidney surgery at Epworth Eastern, but I could also of had it at Cotham or the Austin, there are also other hospitals I could use, but I haven't looked into them as I am very happy with Epworth Eastern.

So what should you look for in a hospital? The most important thing it that you are comfortable with the hospital you are going to, which includes two things. You must be confident that they can competently complete the surgery that you are in for and that you will be comfortable during your stay.

Everyone is different and everyone will have different priorities. For example, some people would prefer a big hospital where you are confident they can combat every eventuality, where as some prefer a small hospital where everything is more personal. You must differentiate between what is merely nice to have and what is a must for you.

Next time I will expand on what you should feel comfortable about when you have a hospital trip, until then, 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:)

Epworth Eastern

If you live in Melbourne, you probably know the Epworth for its Richmond campus. The truth is there are four Epworth campuses, the Epworth Eastern was only opened in 2005 and is very large (for a private hospital with no emergency) shiny and new.

I have had three procedures there (two kidney and my tonsillectomy) and the hospital would be a dream for any doctor or health care professional. Their processes were efficient and streamlined the equipment was new and modern and where ever I went there was so much space.

Pre-op was spacious and comfortable, the OR's were spacious and comfortable (even with a pre-op alcove to treat patients in whilst the OR was being prepped), post op was spacious and comfortable and the wards were spacious and comfortable too. Even the corridors had these benefits, but one would never have to spend time in them as there was so much room elsewhere.

Like I said, it was a dream for a health care professional to work in. But was it as good for the patient? Well, the super professional hospital has immediate and obvious benefits for the patient, but they do miss a couple of things that make a stay more comfortable.

I really think one of the cardinal sins of a hospital is not checking a patient into the ward before surgery. Epworth Eastern with its ruthless like efficiency knows the benefits to the hospital by following the procedure, however, this does neglect the patient.

Secondly, everything seemed a little too clinical. Everywhere you looked the place oozed hospital. I believe for patients to be comfortable, the place need a few homely creature comforts. Even the view from the wards was sterile, looking out over a car park, building or another hospital.

But, I have always felt very safe at Epworth Eastern, and to add to the plusses, the rooms were great, the food was also well above average, all the nurses were good and each room had a fridge in it, which was great for chilling my icypoles after my tonsillectomy.

This is a really good hospital, but they could use a patient advocate or someone just to add the finishing touches from a patient point of view. Until next time, stay well:)

More surgery on the cards.

Yes, you read it right. By years end I will have probably had to have another surgery. Funnily enough you think I would be upset or worried or annoyed. Maybe even angry, but you would be wrong. I have in the past been through all those emotions, but not now. Quite simply I just don't care.

Now don't get me wrong. I do take it seriously, but it doesn't bother me at all. I came to the realisation a long time ago that surgery would be a part of my life for a long time to come and there is no use in letting it get the better of me. There is no fixed time in the future and the surgery I am having I know very well, so I think it is just a case of not worrying about it, getting on with my life and moving forward. I can deal with the surgery when the time comes.

So why do I need surgery? I have another kidney stone. Yesterday I went to see the urologist and as he flipped up the x-ray there it was. Very small, only about 4mm x 2mm, so the urologist decided not to do anything about it now. But it will grow and the trick is to treat it before it gets too big, and it requires more than one surgery. Really it is a game to keep the surgeries to a minimum.

For now, we will just watch this space and when the stone get too big we will operate. All I can say is thank heavens for flexible ureterascopes and holmium lasers. They make the surgery much easier. Next blog I will talk about Epworth Eastern Hospital, which interestingly enough is where I will have this surgery. Until then stay well:)

Cotham Private Hospital

I'm all for space utilisation, but Cotham Private takes it to the next level. They seem to have crammed as much into as little space as possible. They have four operating theatres and only forty five beds.

I have now had three procedures here, and I was really only OK with it because they were minor operations (two lithotripsys and one stent removal). I would not go there for a larger procedure. If I had a larger procedure there I would be seriously worried, and they do them too. I just feel that if something went wrong it would take more than they had to fix it, so you would need an ambulance trip to another hospital.

So, when I got there I was sent to day surgery, which was really just a double room with curtains and four chairs so you could sit down and get changed. When my time came I was wheeled by bed to the OR where their pre-op was merely a spot in the corridor. The OR itself was fine, but when I woke up I felt like Harry Potter waking up in his cupboard. At least that is what post op felt like. The room only had room for three beds and the back wall was shelves full of medical supplies.

When I was done I was whisked back to the ward where I was put in a two person room and told I couldn't leave for two hours. The food was bad the nurses seemed grumpy and the TV's were old and only showed free to air TV.

On the good side for me, it is nice and convenient and they did lithotripsy under a general, but any procedure tougher than that I would be going elsewhere. Next time, it's off to have a look at Epworth Eastern. Until then, stay well:)

The Austin Hospital

I came to stay at the Austin Hospital in unfortunate circumstances. After two operations and over a week at Warringal Private, I had a complication with massive bleeding into my kidney. The procedure I needed could not be done at Warringal, so I was shipped off by ambulance to the Austin.

It was early morning and I had already been through the ringer and I got pushed through the bowels of the hospital on a trolley to radiology where they performed a procedure to fix the bleed in my kidney. It was one of the most horrid experiences of my life. Not only was I down a litre of blood I felt like death warmed up, and the small dungeon style area that I had to wait in felt cold and cramped. To top it all off I had none of my own belongings, and I was wearing nothing but the hospital issue gown. The only thing that identified me was my wrist band.

I felt alone and frightened and I had no idea what was going to happen next. But don't be too alarmed, the hospital is not that bad, just the circumstances in which I was there. Once my procedure had been finished I was sent to the ward. There were four beds as I was now in the public system and it showed. Everything was either good or bad and sometimes both. For example, the nurses. Some of them were brilliant, others not so. Also, I could get Foxtel! But I had to pay for it.

Once I had figured out the nurses and paid for TV I have to say that it was all pretty good. I was not bothered by being in a four bed room either, but all the guys I shared with were all very nice. The best thing however was the food which was great. The best I have ever had in a public hospital.

Overall, the hospital was very good, but you always felt like you were in a hospital, there was little homeliness. If I had the choice I would stay at Warringal. Until next time, stay well.

Warringal Private

Out of all the hospitals I have visited, I have spent more time at Warringal Private than any other hospital. With four PCNL's and a handful of other smaller procedures done at this place I have an intimate knowledge of the place. It was fairly good too.

On first impressions the place seems quite small, but that is deceptive. The hospital stretches on for ever, and at the back is a place called Streeton ward, and I went here to settle in before every operation, always a big plus. I also liked the way they named the wards as it adds an element of character and comfort to the place.

When I first went to the OR I felt very much like I was in a rabbit warren as the corridors were very small and there was one very poky elevator ride, but the four OR's they had were well serviced by their pre, and post-op, and in this place, the heart of the hospital everything seemed clean and well run.

The wards were very comfortable too all the rooms (which were one or two bed rooms) looked out over a courtyard garden or a park. Out of all the hospitals I have been to this one is the most homely. There is even ward access to outside which is a rarity in most hospitals, some rooms even had access to the outside via sliding doors. Another plus was they had good TV entertainment.

As far as negatives go I only have two. First, the food was fairly ordinary. Second was experiential. After my last PCNL I had a complication and they had to transport me to another hospital. This is a big negative for me as I would expect a hospital that offered the service of that procedure to also be able to cope with any complications that may arise from it.

Anyway, off to the Austin I went which will be the subject of my next post. Until then, stay well:)

My story

Below is my story (medically) so far. I wrote it for the WEMOVE website, so bear in mind that it is aimed at people with movement disorders, but I think it is an entertaining and accurate account of where I have been. It is a little longer than normal, but it is a good read;)

At the young age of just 18 I must have angered the gods. I was young, had just finished school and started university. I was naive, full of dreams and my aspirations for the future were limitless. In short I was ten foot tall and bullet proof. Then I made a horrible mistake. I said these ever-fateful words to a close family friend when he showed concern about me. "I am 18 years old, I am in perfect health. I exercise regularly and eat well. What could possibly go wrong?" Well, the gods didn't like it so one week later I had my first (of many) trips to the hospital.

I hear you ask, “Why did you need to go to hospital?” Well, it actually has nothing to do with a movement disorder, but I will get to that. I had a kidney stone. The first of three I had that year. I was diagnosed with a condition known as cystinuria, which means I have to battle kidney stones regularly. Sometimes I won, mostly I lost.

In the year 2000 things got worse when I was diagnosed with a condition known as Chronic Inflammatory Demyelinating Polyneuropathy. Wow, try saying that ten times in a row quickly. I will simply refer to it as CIDP.  It was a very stressful time.  It took an eternity to diagnose, and once diagnosed nobody knew what caused it although I have a few theories.

The kidney stones were still a big problem for me, and on top of that I now had CIDP a peripheral nerve disorder which left me with weakness and slowness in my arms and legs. At the time I was trying to lead a normal life, I was not accepting of my conditions and as a result I was bitter and resentful of the ailments I had been given.

Two years later it would get even worse when I was diagnosed with essential tremor (ET). Truth be known I had actually had the tremor for since I was about 15, but it had never really bothered me. I was always able to do the things I wanted to with the minimum of fuss, but that was now changing. I found it difficult to eat, drink and write. I felt this and the CIDP the worst because it was in your face 24/7. It could not be ignored, no matter how hard I tried.

Although other things in my life were going OK, medically, I was about to embark on five years of hell. I tried a variety of treatments for CIDP and ET with limited or no success. In 2006 I had complications from kidney surgery. I was laid up in hospital for 3 weeks and over three months I had seven operations. It was the worst time of my life, but also it was turning point for me.

When it was all over I started seeing a psychologist who diagnosed me with depression, probably caused by all I had been through. I realized that I could no longer refuse to accept my conditions, and instead I decided to take charge. I learnt about the conditions and treatment options and where applicable I changed doctors or even found some new ones. For example I now consult with two neurologists and two urologists, not one. I also changed my nephrologist (Kidney specialist) completely.

I also took time to work on my mental health and let myself know that what I had really did suck and it wasn’t fair. The validation of that point has really been a godsend for me. Now, I no longer live in denial about it all. I am not cured of my problems, but now I am accepting of my limitations and I am much more in control of my conditions. Recently I just had DBS to help with the tremor which has been great, but I know there is still a long way to go. I have blogged about my experiences as well. They are at shakesandstones.blogspot.com. Thank you all for taking the time to read, take care and stay wellJ

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:)

Onwards and Upwards - Part 2

I had another first last week where I went to the rehab clinic for the first time. No, this wasn't the Betty Ford clinic or anything, this rehab clinic was mainly for the elderly, car accident victims, stroke victims etc.

The first person I talked to was the physiotherapist. This was mainly an assessment of my current capabilities. I did some strength tests (pushing against the physio in a certain direction) and some balance tests (stand on one leg and close your eyes). They also observed me walking. I must be quite a hard case for them as my capabilities change depending on the stimulator.

Next, I saw the occupational therapist. Again, this was an assessment of my current capabilities but this was less physical and more simple questioning, where she tried to figure out tasks that were difficult for me so we can develop strategies to make them easier.

The next step will be for the physio and the OT to develop a plan that will assist me in combating my balance issues and developing strategies to assist me in making everyday tasks easier. I will know more tomorrow when I go back for what is my first treatment. I'll let you all know how it goes.

Next time I'll talk about my final two doctors visits, which includes a really awesome stimulator adjustment setting. Until then, stay well:)

Onwards and Upwards

Well, a lot has happened in the last week. I have had six doctors appointments in the last seven days all of which have been noteworthy in their own right, so I'll probably talk about them over a couple of posts. Apologies for not talking about the hospitals for now as promised, but this is interesting. So what are the six doctors appointments?

Well, there was the GP, then the nephrologist, the physio, the occupational therapist, the neurologist and finally the neuro surgeon. So where do I start. In no particular order I will start with the GP. After years of resisting the temptation to get a disabled parking permit (which I have been eligible because of my CIDP for 10 years) I decided that now was the time.

I do think that it is a really contentious issue this. Ten years ago I could have got one but did I need it and the answer was definitely no. I went another ten years without and I didn't miss or need it. However, now I feel there are times where I do need it. For example, when I have the kids in the car. They can be quick and out on the road before I have time to do anything because they are faster than me. If I am in a disabled spot their destination is closer and they are much less likely to run on the road.

It really comes down to the individual to use their common sense when they should and shouldn't use it. Rest assured I will only use it when I think necessary as it is not a privilege to be abused.

I also went to see the nephrologist. This won't take long. The visit was standard. My tests were normal and he didn't change my kidney pills. So I'll see him in another six months.

Next time I'll talk about my other visits. Until then, stay well:)

Hospitals recap

I have had some criticism that this is a boring topic area. Point taken, it is probably not as interesting as the photos of my brain surgery, but in my defence, the brain surgery is over and I can't see myself back in hospital for a while.

Secondly, I have a point that I am trying to make here, and by explaining where I have been and the experiences I have had in each hospital will make it easier for people to understand what I believe one should look for when deciding which hospital to choose and why.

Anyway, I do see the point, so for now I will only review the hospitals I have had surgery at, which by my calculations means I have five left to review. I will try to make them as entertaining as possible.

Lastly, please feel free to provide feedback online. The feedback I have received has all been via mouth. If you provide feedback online it will be much easier for me to respond to it. I'll be nice, I promise:)

Until next time, stay well:)

Royal North Shore Private Hospital

After my experiences at the SAH I thought all hospitals in Sydney were rubbish. Luckily, Royal North Shore Private proved me wrong. Unfortunately the longest I ever stayed in this hospital was one night with longer surgeries I always went to the SAH.

The first thing that struck me about this hospital was the fact it was warm and comforting and really didn't feel that clinical at all. Each time I went there (which was about three times in total) I was processed through day surgery. I generally disagree with the policy of putting patients into day surgery first, but here it seemed better.

Each day surgery cubicle had solid wall partitions and a TV. Another welcome change was the external windows. It is amazing what a little natural light can do for your well being. Still, if I am going to be in hospital overnight I prefer to go to the ward first.

From what I remember as well, the OR's seemed nice and clean and all the staff were friendly too. Everything also seemed nice and close, so it was easy to familiarise ones self with the hospital. Feelings of unfamiliarity are common in hospitals and very unwelcoming, to have these addressed is a big step.

Lastly, the wards were all single bed and spacious, there was good entertainment, and the food was good too. Overall, a good hospital experience. Next time I will move south of the border and review Warringal Private in Victoria. Until then, stay well:)

Sydney Adventist Hospital - part 2

OK, if you are going to hospital for an operation you expect an operation right? Wrong! Not at the SAH. I got there at 7.00 am to dutifully and patiently await my surgery. At 10.30 am I was processed through day surgery like a sheep going for vaccination. They had no day surgery bays left so I was stuck in a converted broom closet where the TV was yet to be connected.

Here I waited patiently, like a good patient. At 1.00 pm, for lack of a call button, I started to roam the corridors of day surgery to find an answer. Here I was greeted with the questions "Why are you out of bed?" and "Why did you not press your call button?" Well, nobody had come to see me, my surgeons list had finished half an hour ago and I don't have a call button, but sorry for thinking you might actually like to look after your patients.

I got told an answer that my surgeon was running late and just to wait patiently. So I did. Until at 3.00 pm I saw my surgeon who was supposed to be in the OR. I called to him and he asked me what I was still doing here? Apparently my surgery had been cancelled due to a complication upstairs with another patient and my operating room time was pushed.

Yeah right. If my surgeons OR time was pushed why was he still there at three o'clock? And how can a hospital with twelve OR's not find room for a surgeon with a regular morning list. Sorry SAH, I don't buy it. SO my surgery was cancelled and I hadn't eaten for over 18 hours and all they could manage was a cheap sorry, a poorly prepared selection of sandwiches, a juice box and they couldn't even pay for my trip home.

Eventually, I had my op and the hospital luckily didn't kill me. But it was a miserable, de-humanising experience. I didn't get to go to the ward until after my surgery, so I had no idea of where I was, the place was dull and grey, the food was lousy and the nurses were rude and either inexperienced or slouches. A sure 0/10.

Next time a much better experience at North Shore Private. Until then, stay well:)

Colds and Tests

Since the last time I blogged about my DBS a few things have happened. First, I went and played patient to a few wanna be neurologists who were being examined, second, I had another adjustment of my stimulator, and third, I have had the cold from hell.

First, the medical exams... The truth is they are not fun. I let a bunch of strangers do a medical exam on me which include scraping the bottom of my feet with a stick and sticking me with pins. So, why do I do it? It is a chance for me to give something back, and if examining me can make me these people better doctors, it can only help me in the future. If you decide to do one of these training days, don't worry either. This is the fourth time I have done one, and I have been diagnosed from everything from Parkinson's to Motor Neurone Disease. This time I was the star attraction with my new DBS as no one had seen one before.

As for the adjustments, I felt this time Mary worked very hard to find a better setting, which was somewhat in vain as Richard came in fifteen minutes later and gave me an entirely new setting. They called it the bi-polar setting. The charge, instead of just emanating outwards, is attracted to the lead directly above, so the charge radius is much smaller. This means that a much higher charge is possible. Currently I am set to 5.2 on the left (bi-polar) and 3.2 on the right (normal). I have had a sleight improvement on last week, but the side effects are worse and the adjustment to them takes longer.

Overall, I guess that I am happy with the way things are progressing, I just wish I had more control over the process so I could figure out the best setting for myself rather than having to wait three weeks in between adjustments.

However, last week I did have a scare that made me question the validity of the whole process. Yes, that was my nasty cold. Everything was worse. I actually felt worse than before I had the surgery and I started to question whether everything was worth it, and even had I made things worse with my decision.

Now normally I don't let a cold affect me, and the sniffles etc. didn't really bother me. But the increasing tremor really did, especially after such a life defining surgery. I wish I could give you some tips on how to cope with this, but I can't. I coped badly. I leaned heavily on my wife, did not feel like doing anything but sit on the couch and feel sorry for myself. Next time I have a cold with similar side effects I will give you some tips on how to cope.

Fortunately, I am through the worst of it and I am feeling better and luckily, my tremor has improved (I drank the second half of a cup of tea today with one hand). Next time I will get back to my hospital reviews. Until then, stay well:)

Sydney Adventist Hospital

To get me to go back here you would have to pay me an obscene amount of money. I have so much to say about this hospital it will be at least two posts and none of it good. So, I'll start with my horror stories.

I have two of them. The first was when I was booked in for a routine lithotripsy (shock waves sent through your body to break down kidney stones). At Warners Bay I used to get a general anaesthetic for this surgery and when I did, I normally woke up feeling groggy but otherwise OK and the need for pain killers was rare post-op. At the SAH they used to sedate you and give you a massive hit of pethidine for the pain, which you needed because it hurt like hell.

When I had this they came to get me from the day surgery ward and as of yet, they hadn't given me the sedative or the pethidine. So they hurriedly gave me the drugs and told me that it would take a long time to get to the lithotripsy room and the drugs would kick in on the way.

Two minutes later the drugs hadn't kicked in and I was served up on the table with what felt like someone kicking me in the back. After another five minutes the drugs had kicked in but the damage was done. Between the pain and the drugs I was spent and little did I know I was only halfway through my nightmare.

When I returned to the day surgery ward I asked for more painkillers. They said I was not allowed any more pethidine and so all I could have was panadol or panadeine forte. Now panadol would not touch the sided so I opted for the panadeine. One problem, I am allergic to codeine, the active ingredient in panadeine, and I had a red wrist tag that told people of this, but the nurse just went ahead and gave it to me anyway.

Right now I am feeling like crap. I am so wired I can't even walk and I feel nauseous because of the panadeine and they want me out of there so they can close down day surgery, so they wheel me out in a wheel chair where my then girlfriend is ready to drive me home in my new BMW. We get out the front of the hospital and I vomit all over the inside of my shiny new car.

Yes, I hate the Sydney Adventist hospital and yes, I learnt a valuable lesson that day.

Next time I will finish off my tales of the Sydney Adventist Hospital. Until then, stay well:)

Warners Bay Private

When I first was diagnosed with my kidney problem my urologist at the time wanted me to go to Warners Bay Private for two reasons. First, he had a regular weekly list there and second, it was the only hospital in Newcastle with a lithotripsy machine.

I was lucky. Warners Bay was a good hospital, but before you run off there keep in mind that the last time I was admitted was 1998, and if you are thinking about surgery I recommend you do your own research.

So, why was I lucky. I first went to this hospital in 1994 and back then I simply trusted the system and my doctor to make the right decisions. Now I was slightly restricted in my decision because at the time lithotripsy was the best surgical treatment for me, but I also had a few other surgeries and I could have chosen to have those elsewhere. If that were me now I would certainly do some research to find out what my options were.

Anyway, why was Warners Bay a good hospital. First, the day surgery unit was only for day surgery patients. If I was admitted over night they would send me to the ward first so I could settle in. Second, food and entertainment were good, but most importantly, back then the staff were excellent. I was also possible to go for a walk in the gardens outside.

On the downside, they had one two and four bed wards and what you got was a lottery and the wards were simply along the main corridor so it was always quite noisy and you had a lot of sticky beaking in your room.

Stay tuned for the next edition of ShakesandStones where I will critique the Sydney Adventist Hospital which is by far and away the worst hospital I have ever been to. I will explain next time, so it should make for an entertaining read. Until then, stay well:)

Which Hospital?

Public or private, big or small, I have been to a lot of hospitals. Excluding hospitals I have attended emergency at or merely consulted a doctor at, I have been treated at no less than twelve different hospitals. I have listed them at the bottom of this post and next time I will rate them for you outlining all their pros and cons.

Now if you have the unfortunate need for a hospital, you might think you have no choice on where you go, but you do. Admittedly, if you have found a surgeon you like and are happy with it is hard to go against his choice, but most doctors treat patients at a number of hospitals and normally you will be able to choose any of them. Of course, there might be other factors involved, like the hospital having the right set up and equipment for your procedure.

When looking for a hospital there are a number of factors you should think of, but I will cover these off next time. Until then stay well:)

Oh yeah, my list of hospitals:-

1. Warners Bay Private Hospital, Newcastle NSW.
2. Sydney Adventist Hospital, Sydney NSW.
3. Royal North Shore Private Hospital, Sydney NSW.
4. St Vincent's Hospital, Sydney NSW.
5. St Vincent's Public Hospital, Melbourne VIC.
6. Warringal Private Hospital, Melbourne VIC.
7. Cotham Private Hospital, Melbourne VIC.
8. Austin Hospital, Melbourne VIC.
9. Austin Repat Hospital, Melbourne VIC.
10. Epworth Eastern Hospital, Melbourne VIC.
11. Cabrini Hospital, Melbourne VIC.
12. St Vincent's Private Hospital, Melbourne VIC.

Moving On

Well, I am now through the worst of the brain surgery and recovery. Thanks to everyone for reading and your support. It has made it so much easier to cope with knowing that so many people are behind me and thinking of me. I will definitely keep you all informed of how I am progressing but for now I want to get back to my primary reason for starting this blog, and that is using my experiences as a patient to help others cope with being a patient.

Topics I will discuss are how best to cope with the medical situations that I have been confronted with, how to integrate illness into the rest of your life, doctors and other health care professionals, natural medicine, pharmaceuticals and others. I also want to spend some time talking about depression as this is something else I have to deal with and in many ways has been more debilitating than my other problems.

Lastly, I would ask you all to ask questions and stimulate debate. I have found that this is a great way to provide answers to topics that might otherwise have floated under the radar. I hope you look forward to my next post. Until then, stay well:)

So, How Has it Helped?

Below is a short list of tasks that a tremor makes very hard to deal with. I have given each task a mark out of ten (one being no improvement from the DBS ten being a perfect improvement) and a short description why.

Brushing Teeth 5/10 - Definitely some improvement, but not perfect.

Showering 1/10 - Sure, it is easier soaping up and washing off etc, but the stimulator can make me dizzy and unsteady on my feet which makes it harder.

Getting Dressed 2/10 - Try putting your pants on when you are unsteady on your feet. It's hard, and so the stimulator makes this harder. However, doing up buttons is so much easier and if scored by itself would score a 9/10.

Writing 8/10 - Being able to rest my hand on the table makes it hard for the big shakes to present themselves and as there are no smaller shakes writing is much easier.

Typing 1/10 - Sorry doctors, but my typing speed has not increased and I still make about the same amount of mistakes.

Cooking 3/10 - Admittedly, the most I have cooked so far is toast, but the problem is that to cook you need to be steady on your feet and I am less so with the stimulator on. However, the steadiness is improving slowly so I am looking forward to getting back in the kitchen and making a mess.

Gaming 5/10 - A hard one to judge. Super Mario Galaxy on Wii is great, but Wii sports is not. Using the Stylus for the DSI is awesome, but the buttons are still hard.

Eating 6/10 - Eating with my fingers is great, but not so much with the knife and fork. I have bade the odd mess, but on the whole it is easier.

Drinking 5/10 - Still generally a two handed affair but much easier and doesn't look funny anymore. I can manage one handed (left side) bet it requires a deal of concentration.

Using the Remote 8/10 - Rarely do I press the wrong button any more, and I think my wife dislikes my new found channel surfing skills

Peeing Standing Up 10/10 - I have not splashed the boots once in the time since i turned on the stimulator. Before the op it was just easier to sit down, but once again, the world is my toilet.

Wiping 10/10 - Yes you know what I mean! No more brown finger for me.

Overall, I say yes it has surely been worth it. The last two point you may find funny (humour was intended), but they are so important. It is the culmination of little things that hurt you the most and these things count a lot. Until next time, stay well:)

Recap

I have now had my stimulator turned on for ten days, and although the hardest part is behind me there is still a long way to go. So far I have had one adjustment setting for my stimulator but there could be many more before I get the right one. This is actually good news for me as I hope to receive more benefit from the stimulator than what I am currently getting.

The big question that I have been asking myself this last couple of days is has it all been worth it. If you look at the video I posted (If you haven't, see 'First time my stimulator is switched on') you see a marked difference. But has it really improved my functionality or is the video nothing more than a really cool party trick?

In my next post I will identify a few areas where tremor is a big problem, and then critique how much help it has given me, but for now I think it is safe to say that it has been worth it and there has been benefit.

However, there is one thing I have found quite confusing. Before the surgery I thought back along the progression of my disease from the first symptoms I had as a teenager through to when it became problematic in my mid 20's and my diagnosis, to present. I expected the stimulator settings to simply show a reverse progression of the disease, stopping at a point somewhere along this timeline, but this has not been the case.

Instead what I have noticed is that the frequency of the tremor has diminished the wave length has increased. So instead of ten normal shakes I have one big shake. That is not as bad as it sounds. If I slow things down I can avoid the shake but sometimes that can be hard when you're in a hurry. Anyway, next time I'll critique it in detail, until then, stay well:)

History In Pictures

The first process - The assistant neurologist shaves my Head

My best ever Michael Klim impersonation

In full head gear

Post Op 1

Post Op 2

Back in the ward with my big pillow

The head wound two days on

The wire lumps just prior to stage 2

In post op after stage 2

The stage 2 wound. They wouldn't shave my whole head, even though I asked them to.

The big wound without staples

Chest wound I got in the war

Close up

First Setting Adjustment

So last week I went back to Dr Peppards for my first stimulator adjustment. As I am not yet allowed to drive my dutiful wife took me in, which was nice. Normally I attend these things by myself, but I must admit it was nice to have the company. Luckily we got a park right outside and we arrived just in time which mattered not, because the Dr was running late as usual. Like a bride on her wedding day, I think doctors run late on purpose just to let you know who's the boss.

After about fifteen minutes we got in to see Dr Peppards nurse Mary, and she immediately started playing with the settings to try and get a better result. The first thing she did was whack the setting up to0 four and I instantly started tingling in my arms and teeth, then I just felt really dizzy. I also had a much more unpleasant side effect, I started to sweat a lot. Luckily this passed when we stopped playing with the stimulator.

Another thing Mary did was to try another lead. Down each electrode there are four points which can be used to stimulate the brain. They are about four millimetres apart, and they try and put the last lead right on what they believe to be the best spot. When she tried the second lead up I got an irresistible urge to turn my head up and to the left. It was like some one was turning my head for me. As soon as Mary turned off the stimulator the sensation stopped. My wife thought I was going to have a fit.

After about fifteen more minutes Dr Peppard came in and we settled on the lowest lead with a setting of 1.6 on the left and 2.5 on the right. Don't ask me what the measurements are in, I don't know. Anyway, in another two weeks I'll go back to see him again for more setting changes. Until next time, stay well:)

Stimulated and Turned On! Part 3

Emotion that I have not shared with any of you so far are worry and a little frustration. They are not positive, but they are there and need to be confronted. When Dr Peppard first turned on the stimulator. At first I was relieved that there was a benefit and that I no longer had to deal with the problem of my tremor. However, there were also side effects, the worst one of which is a lack of co-ordination.

It is hard explain, but some things are easier but others are harder. For example, drinking a glass of water or something like that is easier, but walking is harder. I cannot walk in straight lines easily, and I find it hard to sometimes avoid obstacles such as furniture or toys that the kids have left on the floor. Even a doorway can be miscalculated and hit with my shoulder or something. However, when I turn it off the side effect goes away.

So, from my point of view there are two things I to work out, and both of them will take time. First, with assistance from Dr Peppard I need to find the very best settings for my stimulator and also get used to it. Secondly, I need to learn which setting to chose for my stimulator depending on the task I am doing or the situation I am in. When I start to figure these out I will let you know.Until next time, stay well:)

Stimulated and Turned On! Part 2

I have to say that I stayed in that peaceful zone for at least an hour and would have stayed there longer accept for a visit from my father in law. I figured that this was the catalyst I needed to get up and take my neural stimulator out for a spin, so after donning my dressing gown and slippers I armed myself with a $10 note and we headed off down stairs to the hospital coffee shop. On the way down it was the little things that impressed me that one does not even realise. First I put the $10 note in my wallet without even thinking about it. Before I would have had to be careful to make sure that I got the note in my wallet, and that I didn't empty the other contents of my wallet in the process. Secondly, I used the end of my index finger to push the G button inside the lift. Normally I would use a knuckle as a knuckle would shake less than a finger tip.

Once down stairs I hit my first glitch. As a side effect of the stimulator I was feeling quite dizzy, and I was having trouble walking in a straight line, so I decided not to buy the coffees as originally planned and left that in the capable hands of my father in law. Things got back on track after then though. My mocha arrived in a paper take-away cup, and for the first time in years I managed to prize off the lid, open a sugar sachet, pour it it, stir my beverage, and all without spilling a drop. Yet I still did not feel excited. Just relief, tranquility and contentment. For the first time in years I managed to go out for coffee and enjoy the company and experience without having to worry about how to pick up a hot drink without spilling it or looking stupid. Yes, ladies and gentlemen Friday the 14th of May was a landmark day in the life of Andrew Price.

So that was my first post operative coffee experience. I never thought an ordinary coffee expedition could be so interesting! At least I hope you found it that way and have maybe learned some valuable insights as to what myself and fellow tremor sufferers had/have to go through. Next blog I will focus on the negatives of the DBS. Don't worry, they are more than outweighed by the benefits, but they do exist. Until then, stay well:)

Stimulated and Turned On!

I hope you all enjoyed the video in my last blog. I'm sorry I didn't get it up sooner, but I had trouble getting blogger to let me upload it. Anyway it's up now and I hope you enjoy it. I think that the last thirty seconds are the best.

So it has now been three days since my stimulator was turned on, and I have really been on a bit of an emotional roller coaster in that time. When my neurologist, Dr Richard Peppard first turned on the stimulator I felt like laughing. I had almost talked myself into thinking that it was never going to happen. The good doctor was supposed to turn up at 10.00am, then this turned to 11.00am and after that time came and went he finally turned up at 1.30pm. So at this time I was thinking we would get this show on the road straight away, but no, there was ten minutes of testing. But finally, with a sudden surprise he turned the stimulator on my right side only and I stopped shaking.

So why did I feel like laughing? I don't really know. In a way it made the last ten years seem like one sick practical joke at my expense, and now that it just ended all I could do was laugh along. In another way it felt like a great magic trick that was so amazing all you could do was laugh.

After the laughing passed and I had a second to really take stock of what was going on I was surprised not to feel overjoyed or elated. No, there was no jumping over the moon here. There was simply a feeling of relief or calm. It was the lifting of a burden or like the feeling you get when you finally squash that mosquito that has been buzzing in your ear for 20 minutes, just a thousand times worse, and now I had found peace.

Dr Peppard then set up the left hand side, the results you can see for yourself in the last post I made. After the doctor left I thought I'd be ringing everyone I knew to let them know about the successful surgery, but no. I simply sat there enjoying the stillness sipping a glass of water, a simple task that only minutes before had seemed like a much more difficult ordeal. Next post I'll talk about how I have felt coping with the side effect and what my expectations are for it for the future. Until then, stay well:)

First time my stimulator is switched on

Hey all, this is the first time the stimulator was turned on on my left hand side. I think it is best displayed how good it is when it is switched off. Enjoy and stay well:)

It Works!!!!

I actually picked up a glass of water with one hand and took a sip. I haven't done that in years. However, there are side effects. First, my voice is a little slurry, second, I'm a little dizzy, and third, one I did not expect, I have had the sweats. But the neurologist says these will pass with time. Well, this was just a short post. I am now off to play with my new found ability. Next time I post I will try to get some video and photos up. Until then, stay well:)

The Day of Reckoning

Today is it. The machine will at last be turned on and I will find out whether the last three weeks have been worth it or not. It is not if the stimulator works that worries me, when the doctors did the testing in surgery my tremor disappeared, it is the side effects that worry me. Will I have decreased control over my facial muscles? Or will my speech be distorted? Or will I feel dizzy?

The whole idea of the surgery was to increase functionality. Any of the side effects have the potential to decrease functionality. I don't see the point of replacing one disability with another one. I guess at the end of the day at some point it will be a trade off. How much side effect am I willing to put up with in order to relieve the tremor. From talking to other DBS patients it would be unrealistic to expect a total tremor reversal, so it comes back to what I simply wanted from it at the start, and that is to improve my quality of life.

Another thing to keep in mind is it can take up to a year to find the optimum setting for the stimulator. Today is the initial setting, as time goes by I should get used to the stimulator and new stronger settings should be reachable.

Right now I am feeling both excited and nervous. Understandable emotions for anyone in my position. I hope I get a result equal to or better than what I am expecting. I really hope I do. Right now all I can do is wait and see. Stay tuned and I will let you know how it goes. Stay Well:)

Nearly All Over

Well, I am seriously exhausted now. The last three weeks have really taken it out of me and I am glad that it is nearly all over. There is not much to tell about yesterday as the procedure was done under general anaesthetic. Unfortunately for me the anaesthetist I had last time, Nikki Tan was not available, and the guy that did yesterdays op had five goes at putting in the IV. However, if that is the worst that will happen, I'll take it.

On the good side I got rid of the staples in the top of my head, but unfortunately I got a bunch of new ones for the guide wire insertion, and a few stitches where the battery went. Surprisingly there is almost no pain. When I woke up in recovery I had a bunch of morphine which seemed to do the trick and since then I have been able to control it with panadol.

Anyway, aside from being seriously exhausted I am also seriously excited. The hard part is done, and now the fun begins. I am really looking forward to the first couple of weeks with my tremor in check. I don't know exactly what I am going to do, I think I will feel a little bit like a kid in a candy store. I let you know what I do when I've done it. Anyway, I think it is time for my morning nap, so good night everyone and I'll write to you all again later. 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:)

Oh the Humiliation!

It was Saturday morning, Grandpa had taken my son to football training, and my wife was getting ready to take my daughter to gymnastics and then on to a birthday party. Being a dutiful husband and having just woken up from my mid morning post brain surgery recovery sleep I thought I should help her get ready. So I made sure that my daughter was ready to go, had put her shoes on and got in the car, which she did. By this time my wife had packed her basket and was ready to go. She sat in the drivers seat and wound down the window and asked me if I could do my daughters seat belt up. This is a task I had performed a hundred times before, but this time something happened.

Just after I had clicked my daughter in place, my complacency got the better of me and as I stood up I cracked my head on the roof of the car. I got myself right on the staples and yes, it hurt like hell. I eventually managed to compose myself and after refraining from a barrage of four letter words (because of the presence of my four year old daughter) I looked up at the two girls in my life.

I expected panicked or shocked looks, at least a modicum of concern on their faces. But no. Neither one of them had moved an inch, they were both sitting there in their car seats laughing. Women can be so mean. Oh the humiliation. After what seemed like an eternity my wife eventually asked if I was OK. She already knew the answer though. I was fine, the bump was just extremely painful.

The point I want to make though is that even when you are down (because of an illness or surgery or whatever) it is important not to lose your sense of humour and not take yourself too seriously. I had two choices. I could go back inside the house and sulk or I could join in the joke and shrug it off with a laugh. I decided to pick my wounded pride up off the floor and join in the laugh. Surgery and illness can add a great burden to your life but it doesn't have to change the person that you are. You didn't have a choice in becoming sick, but the choices you can make effect the sort of person that you are. Choose wisely. Until next time, stay well:)

A Question via Facebook

I got a question via facebook today, and it is a very good one. The question was what is the operation actually for? For me, I am caught up right in the middle of it all, so I take some things as common knowledge and what seems quite obvious to me can be quite confusing for others. Please, if anything perplexes you, feel free to ask.

Now to answer the question. I have a couple of neurological conditions but the one that they are treating with the deep brain stimulation is Essential Tremor (ET). ET means that you have uncontrollable shakes when you go to use your fine motor skills. It is classified as a degenerative movement disorder along with other ailments like Parkinson's and Tourette's syndrome and is actually the most common in the category. For me it is a problem I have had since I was a teenager, but the tremor was very mild back then and it never bothered any of my functionality. In fact the worst side effect I had back then was other kids picking up on it and having a joke at my expense.

For about ten years it stayed that way until in 2001, about a year after I was diagnosed with Peripheral Neuropathy (CIDP) it started getting worse and tasks like writing or drinking with one hand became harder and started to bother me. I was already seeing a neurologist at the time, so I asked him about it. He did some tests and wrote me a script for inderal (A beta-blocker normally used to control blood pressure.) That did the trick quite nicely for a while, but as time went on, the drug became less effective and so doses were increased and new drugs were introduced which bought new side effects with them.

It was five years ago when the surgery was first proposed to me, and my immediate reaction was "are you kidding?" Clearly, I was not ready at the time for the surgery, but time went by and about three years ago, I all but lost the ability to write, and drinking became a strictly two handed affair. However, I still was not ready for the surgery until about a year ago, so I organised to see the neurologist who specialised in tremor to revisit the idea of the surgery. That leads us to where we are now.

If you thinking I am mad having the surgery read my post entitled "My Brain Needs Stimulating" dated 23/3/10. Well, I hope this answers the question. Until next time, 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:)