Dangerous Implants

I learnt something today.  Just because something is wrapped up inside you can't forget about it.  I was watching a current affairs show today ant there was a story on the company Medtronic.  Medtronic are the manufacturers of my deep brain stimulator, but they also produce a whole bunch of stuff to do with medical implants and pace makers etc.  Here is their website:-

Medtronic Australia

The story on the current affairs show, creatively named "A Current Affair" was about faulty pace maker implants for the heart.  Apparently they were misfiring causing pain, discomfort and potentially death and as a result a product recall was issued in each country the product had been sold.  Here is a link to the story:

Heart Device Recall

So what did I learn?  In Australia the Therapeutic Goods Administration (TGA) insist that the company providing the product only need to contact the patients doctor about a recall.  From there it is up to the doctor to contact the patient to arrange fixing, replacing, whatever.

Now what if my doctor is retired, deceased or just plain disorganised?  That message is not going to get to me.  The TGA should make it mandatory for the company to contact the patient.  Now, fortunately for me my model of DBS has no recalls or concerns surrounding it, and second, both my neurologist and neurosurgeon are extremely efficient, and I would be very surprised if important news from Medtronic didn't reach me.

But in keeping with my mantra of 'take charge of your own health care', in future I am not leaving this to chance and I am going to make sure I keep myself up to date on any DBS news.  I also think that the TGA should make it compulsory for the medical manufacturer to inform the end consumer of their good if there are any fault.  After all, if it was your implant wouldn't you like to know?  Until next time, stay well:)

Ps.  If you have an internal cardiac defibrillator implant by Medtronic you should contact your doctor.

Is it still helping?

Back in May 2010 I wrote this post judging my stimulator and the benefits I had received in certain areas of my life.

So, How Has it Helped?

When I wrote it I only had the stimulator turned on for two weeks.  A year and a half later I thought it would be a good idea to revisit.  Funnily enough I thought that after two weeks it was about as good as it was ever going to get.  And wow, was I wrong.  Since then I have had dozens of adjustments and with each one there has always been a slight improvement.

I guess one of the biggest changes was when I swapped from a monopolar setting to a bipolar setting.  Although there was not that much difference to my tremor, the bipolar setting really helped with my balance and co-ordination, and with a monopolar setting I also suffered from excessive sweating, which also seemed to clear up.

Here are my evaluations:-

Brushing Teeth 9/10 - I don't notice any difficulty now, so really good.

Showering 6/10 - Much better, but I still cannot close my eyes under water without holding on.

Getting Dressed 7/10 - buttons, zips, cuffs etc. are all easier, but not perfect.

Writing 6.5/10 - Good, but although the tremor is not a factor, there is a some rigidity which makes it harder.  I could fill out a form, but I wouldn't want to be writing any essays.

Typing 7/10 - I still only use my index fingers, but speed is much better.

Cooking 5/10 - Also made easier by some of the aids I have got (see here).

Gaming 5/10 - I find it easier than before, but not easier than a long time before.

Eating 8/10 - It is much easier now, unless I am eating really tricky and delicate foods like prawns .

Drinking 8/10 - I can drink with one hand on a good day.

Using the Remote 8/10 - Funnily enough I watch less TV now, but when I do it is easier.

Peeing Standing Up 10/10 - Ahhhhhhhhhhhhhhhhhhhhh!

Wiping 10/10 - It used to be messy.  Now it isn't.

Overall, I am really happy.  On average I would say 8.5/10.  Given where I was I have had a huge improvement.  Having brain surgery is no small decision.  But I'm glad I did it and if I had to do it again, I would.  Until net time, stay well:)

Depression Smack Down!

When I last posted to you, I had just felt like I had really made some headway tackling my depression.  I had taken myself to a point where things actually started to feel possible.  I had issues that needed addressing, and now I was in a space where that was possible.  If I had tried to skip straight to this point I would have failed and probably ended up in a worse spot.

Every step I made I did in consultation with my psychologist.  We discussed each step, what I needed to do, how I was going to do it, when I was going to do it by, what my expectations were, and most importantly, what I would do and feel if it didn't go as planned.

The first things I needed to address were my medical issues.  Be proactive not reactive.  I had three major issues that I needed to counter. Kidney stones, CIDP and tremor.  In terms of my battle with cystinuria and kidney stones I had been losing the battle for a long time.  Throughout my 20's I hadn't really been very good at looking for a medical solution.  If I wasn't symptomatic, I would pretend I didn't have a problem and carry on living my life normally.  If I was symptomatic I would get my stones dealt with surgically.

Truth be know, in my late teens and early 20's this actually worked quite well.  When I was not symptomatic I could go about my business as a regular uni student, and when I was symptomatic I had the time to go and have surgery and my young fit and healthy body would recover well and quickly.

However, when I got older, time was more precious and the surgery took more of a toll on me until I finally had my mega hospital stay in 2006.  Something had to change.  I organised to see a different nephrologist, who I liked and respected a whole lot more, and instructions I was much more likely to follow.  I also went and got hypnotised to help me drink more water.

With a metabolic disorder like cystinuria, you are never going to get rid of the stones completely, but I went 3 years after then without one stone!  Something I hadn't done since my first stone in 1994.  Next, I set my sights on CIDP.

I was extremely focused on getting better, but I had tried nearly every known treatment there was already, so where to from here?  My answer was to hit the disease with multiple treatments all at the same time.  I had in the past been treated by IVIG, plasmapherisis and mycophenalate, but never all at the same time.  So that is where we headed.  

Unfortunately, that didn't work, and in the past it would have wrecked me, but with my counselling I had prepared myself for that eventuality.  I was disappointed, but I could carry on.  But there is hope, as I have been researching the possibility of an autologous stem cell transplant.  But that is another story for another time.

Lastly, I had to combat my tremor, and since I was hitting it hard, it was time for the deep brain stimulation surgery.  There was an element of fear, but I realised that it was something I had to do.  I was done with my diseases dictating my life, I was in charge and I was going to have the surgery.  I have blogged about this surgery extensively, but if you haven't read it before, it went great.  In contrast to the CIDP, where I didn't let the bad news set me back, I certainly let the good news from this surgery carry me forward.  For the first time in a long time I had experienced the joy that came with success and triumph.  Positive emotions rock!


If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Next time, I will talk about all the other issue that I had to confront and face as part of my depression recovery.  Until then, stay well:)

Busy day.

I had three medical appointments today, and I have to say I feel like I'm in the twilight zone.  Why? I hear you ask.  Well, I didn't have to wait more than five minutes to see any of them!  The other point to note is that none of them were bad, which is becoming more common as I grow in confidence and get on the front foot with my treatments.

I started out with my tremor doc.  A week ago I would have thought I had pretty much reached the end of the road in terms of what my stimulator was capable of.  I was wrong.  I had an adjustment and although the improvement was only minor, it was still an improvement.  So, I am now thinking how much more can I get out of this.  I guess that only time will tell.

While I was there we talked about stem cell transplantation and other drugs for CIDP.  It was good to get his feedback and opinion even if as I suspected he was not well versed on the subject.  His thoughts were that I was extremely knowledgeable about the subject and that any doctor would have to take my wishes into account.

After that I went and had a chat with my chemist.  I wanted to get her thoughts on rituximab, and we ended up chatting for about half an hour.  One problem that I overlooked about the drug was that it is insanely expensive.  About $3500 a treatment, and is not covered by the PBS.  So if I can't get on a trial, or get a pharmaceutical company or hospital to pay for it, it is probably not going to happen.

After that I had to run off to the mercy hospital to have a 'stealth' CT scan.  Stealth is basically a way that they can superimpose the images of the CT scan over the top of my old MRI scans from a year and a half ago to check the lead placements from my DBS surgery.  I had to question the relevance.  Seeing as everything is working really well, surely the leads are in a good spot?  Anyway, I had the scan, and I'm sure if something is wrong, they will call me.

Lastly, it was off to the physio for a bit of neck work, which felt great.  All in all I feel it was a good day for me from a medical point of view.  Until next time, stay well:)

Time to Stick it to The Man!

Well stick it to the disease anyway.  Since my mega kidney surgery in 2006, I decided that enough was enough and and I had to hit all my problems head on and really aggressively.  Sort of a live well or die trying mentality.  So back then I took the following steps:-

1st.  I changed my nephrologist and became super strict and diligent about my treatments.  My treatment plan was changed and I went from having an attack of kidney stones every six months to having only two in five years.

2nd.  My depression, that I haven't talked about much, but I plan too, needed to be addressed properly.  So I went on anti-depressants and had three years of counselling.  Depression will never completely go away, but if the medical fraternity were to give it a name they would say it is in remission.

3rd.  I tried to hit my CIDP hard.  I went on immune suppressive drugs (cell cept and prednisolone), had plasmspheresis and IvIg treatment all at the same time.  Sadly, this was only mildly effective at best.

4th.  I had brain surgery for my tremor.  This was probably the biggest thing I have ever done and wow was it worth it!  Now on a good day I can drink a coffee with one hand.

I feel that with most of these disorders I have reached the end of the road in terms of available treatments and for the most part I am happy with the results I have achieved.  The one exception being the CIDP.  Whilst the treatments are not as invasive as brain surgery, they are not pleasant and have their fair share of side effects that I have been exposed to.  I keep with them for fear of slipping backwards.

However, it has come to my attention recently that I have not yet hit the end of the road.  A couple of new treatments are now available that sound encouraging.  The first is a drug called rituximab, which attacks a protein that exists on B-cell preventing the immune system from working properly.

The second is stem cell transplantation.  They can now cultivate stem cells from your own or a donors bone marrow or placenta blood which strongly goes to negate the ethical issues of embryonic stem cell transplants.  However, the procedure is long, hard and dangerous.  Naturally, my doctors would like to try rituximab first, but I belief that life is for living so if rituximab doesn't work you can rest assured I will look at the stem cell option.  Live well or die trying.  Until next time, stay well:)

Stuff that works wrap up

Well, I'm sure you probably have a couple of questions about the segment "Stuff that Works". So I will attempt to preempt your questions and answer them.

First, what other things are available for people with disabilities?

There are lots. Too many to list in my blog. The ones I did list are the ones that I have purchased for me that have helped me. I understand that everyone is different, and depending on their individual disability and personal preferences they may have they may find some of the items I have listed unbeneficial. Alternatively items that I have no use for and have not listed may be of great use to someone else.

Where can I purchase these and other items?

This is the problem. Finding these items can be very difficult. For me, I never even knew some of these items existed until I went to rehab and consulted with an occupational therapist. From there I got referred to the independent living centre (ILC) where they had a comprehensive list of nearly everything I would need. The only problem, I couldn't buy any of it. Instead I got a list of where to go to get it, which was about five different places.

So off I went, where the stores didn't have everything in stock. Now, post brain surgery I couldn't drive, so I had to rely on others to take me. Finally I got everything, but it wasn't easy, and what makes it harder is the fact that the people that need these products are not the most mobile in the first place.

Anyway, if you live in Victoria, may I suggest starting at the ILC (they were very helpful) and following the trail from there. If you don't live in Victoria, probably the best thing to do is start with a google search or see an occupational therapist.

What is my big idea?

As I have said, getting these goods is a nightmare. So what if you could browse all these products at one place on line, order them and have them delivered? Make the process simple. My idea is to set up a business that will do that. I would love your feed back and questions, so don't hold back.

Anyway, it is a long time since I last gave you an update on where I am at and I do have some news to share, so until then, stay well:)

Stuff that works Part 4

All the "stuff" that I have shown you so far has been categorised by where it lives in the house. These items are more miscellaneous and OK, I am showing off a little too, but they work all the same.

The first things I will show you are my walking sticks. The one on the left folds up, which makes it ideal for travelling. The one on the right (my preferred one) has a squash grip wrapped around the handle which I got from sports shop. It also has a clip just below the handle so it can be hung on a table or bench.

Next is a key turner. I would imagine I am not the only one who finds keys fiddly. The key turner holds the key in a large handle making it easier to use.

OK, now I'm showing off a bit. My iPad and iPhone. These to me are much easier than the old button phone or a diary for me, and also allows me to keep up with technology.

The last item is one of my favorites. I never would have thought of it by myself and it is great. It is called a button hook. You thread it through the button hole and over the button, then pull the button through the whole. With numb, shaky fingers, almost the only way to do up my buttons was to ask my wife to do it. Now, once again, my whole wardrobe is available to me independently.

In my next blog, I will tell you how to go about finding these sorts of things for yourself and also introduce you to an exciting idea of mine! Until then, stay well:)

Stuff that works Part 3

In the kitchen there are so many aids it's not funny, so I have put the ones in here that I use, and hopefully it will give you an idea of what is available.

First, I have my knife blocks. They are very similar, but have two important differences. The left block with wooden handles is weighted. The heavy knives help to stabilise my tremor. The right block has grippy handles which make other tasks easier.

Below is a bread knife with a curved handle which makes it easier to cut right to the bottom. Manufacturers sell knives with lots of different shaped handles to make it easier for the user.

My next picture is of my block. It has rubber feet to keep it steady, and a vice like attachment to hold the food in place.

Lastly, this rather bad picture is of an egg breaker. I love eggs, and one of the most annoying things is not being able to break an egg. Until recently if I were to prepare my own eggs, scrambled was the only option. This device allows me to reassess my options.

These are but a few of the many kitchen aids that are out there. Next time I will finish my stuff that works segment with more miscellaneous items. Until then, stay well:)

Stuff that works Part 2

I hope that my last post gave you a few ideas. This post I will show you a few things that I got to assist me with computer work etc... Hope this helps too.

Below is my MacBook. I love it, and it is safe to say I am an Apple person. But what I want to show you is the stand. It raises the screen up to a much friendlier height which allows you to keep good posture. There is also a tray for putting papers you are using on.

Also in the picture is my first choice pen. It is big, heavy and grippy. There are lots of different styles of pen, but this one is the best for me.

In this next picture is my keyboard. It is adjustable for slope and gap in the middle so you can have it in the most comfortable position. The more comfortable the position of the keyboard, the easier it is to control my tremor. There are many different types of keyboard too, so it is good to get something that is suitable for you.
One thing that is hard about working on most tables when you have a tremor is that there is no where to anchor your elbows. This support that clips on to the edge of the table solves that problem. The blue pads also help raise the my wrists to make it easier too.
Finally, my mouse. This one is on kind of rotated 90 degrees to make it more ergonomic to hold, and also control my tremor. There are many different types of mouse as well, so you can find one that is suitable for you.

Well, I hope that this helps you look in the right direction for all your computing needs. Next time I will look at kitchen aids. Until then, stay well:)

Stuff that works.

To all who read, yes I am still alive, and I have been OK. Just over Christmas I have been extremely busy of both a personal and business nature. But I am back on board now and hope to bring you a steady stream of useful posts.

As I stated before Christmas, I would share with you some of the stuff that I have purchased t5hat has made my life considerably easier. Please note that what you see here are things that I find useful, they might not be suitable for you or others. When I have finished I will also direct people to sites and tell people how to go about getting things that are suited to them.

I will start with things that I use in the bathroom.

This foot scrub is great. It has suction cups on the floor that hold it in place, then you simply put some liquid soap on it and put your foot in. The soft bristles get right between the toes and you don't have to bend down.

This is a really strong hand rail that simply suctions on the wall. It is really strong and ideal for balance.

I have two shower shelves here. The one on the left my wife uses, and I use the on on the right with deep sides so I don't knock anything over with my tremor. Very handy.

Lastly, the good old electric toothbrush. Easier than a conventional toothbrush

I hope that this gives you all some ideas of things you can find for assisting with easy living. Next time I will show you what I have for my computer setup. Until then, 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:)

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:)

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:)

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:)

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:)