Four weeks!!

I woke up at four last night thinking I would rather sleep but in the same moment realising I could not because my attention was immediately drawn to this fact: Four weeks to go! (Should I set up a will?) If I do not get something to sleep on at the hospital I will surely not sleep much and after all I am supposed to stay awake during the operation! What seemed so simple on paper is really beginning to grow into something I am afraid I can not handle, especially because I feel very much alone. A grown up man is not supposed to be asking desperately for some sympathy, but I can not hold it back: I thought this blog would help, but it does not because nobody gives any response even if I only ask for some simple advice. Being neglected when begging for attention  is sad.

Still, perhaps  this is only Mr Destiny poking his nose  at me, after all its only a few days gone since I turned down an offer from some of my best  friends to help me out in some troublesome money matters which also                                                                                                                                                                                                                                                                  occured because of  MrP. So who am I to expect anything?

Luckily, as I woke up last night, I did not dream what I have been dreaming over and over during the last weeks, a nightmare surely. I dream that I wake up  in a strange house which I anyway know where is. I feel trapped and I can not or -rather-  am not able to find a way out in the unfamiliar surroundings.I have this strong notion  that I must leave in a hurry or something terrible will happen. Some mornings I awake trying to find my way through the wall...

The fear that I will not be fit for the operation

Today it is March 2nd. In exactly one month  I will be on the operation table. Will I be cool enough to try to crack some jokes like Michael does in the film?  I doubt it. Anyway, my main concern now is to get my body up on that table on schedule. I was reminded that this isn't happening if I am not fit when I woke up yesterday with a clear understanding that I do have a back.. Tha last time I felt more or less the same way was two years ago, and I had to undergo several treatments by the local chiropractor to be on my feet again without mobilizing everything to keep up  the pain. So what am I to do now? Hopefully it will disappear (the distinct feeling that I do have a back) in a few days, but if not I suppose I must see the expert? Or should I see him anyway? What will yor advise me to do?

Some thoughts after lunch today

Today has been busy and I might fall asleep writing this at 21.30, be warned!! But I would like to say a few words about some hours spent together with a small group from the Parkinson family, who came together at a cafe in Bergen, having lunch together.

We shared views on different topics of course, and as always it is particularly interesting to hear what experiences and thoughts people in more or less the same situation as yourself have. Talking about the operation  I face, it seemed that the persons  in this group had very similar experiences in our meetings with the Norwegian Health system. There were many episodes mentioned to underline an obvious weak  part; the way the system is organized.  From my own list I will mention that I posted a letter to Rikshospitalet in December last year, which they still have not answered, sort of. I did get an answer because I asked the ombudsmann for patients to look into this on my behalf. It is sad that we have to find a whip to get a response..

On the other hand, when we meet persons working in the system, we all feel that we are seen as individuals and treated with respect and understanding. We know that this is just as important and we are very grateful to be able to  meet up for something and expect that it will be a new good experience. This is building confidence, which can not be measured in money when it comes to the health deparment!

Motivated for the operation?

As we see in the film about Michael, he is highly motivated to go through this operation, in his own opinion as well as others, among them the surgeon Brian Koppel. I believe I am more or less at the same motivation level as Michael because I recognise his strong will  to function better in everyday life.

Many tell me that they think I appear almost as I am not sick. Yes, thanks to all the pills I swallow every day thats true. But I already suffer considerably from side effects and I fear there will be an increasingly higher cost using extreme doses of medicines.

I am highly motivated because I know that the operation will remove a large amount of the medicines  I am addicted to today. (I use 'addicted' in order to stress that to me there is no third option from my point of view; Its to use heavy  doses of medicines as I do today or  having the operation. The reason for this is that  I by now without medicines function so inadequately that I would soon have to be nursed if I experimented  with alternative medicine.)

I also know that after the operation I do not have to wait for the medicines to work every morning ( it takes at least 1 hour, on average 1 1/2  hours). This time is more or less wasted today. In fact I may have the electrodes on all the time if I like, the only drawback being that I will have to get new batteries in the pacemaker more often than if I save some by turning it off at night.

I think/hope/believe that  I will function on a higher level than today, most of all because I will probably have more staying power than today, which, believe me, is not much. To not get very tired from doing very simple things like writing these lines, would be nice! This will also effect my ability to have a small position at work, which is important for many reasons.

I also hope I will sleep better,  as Michael says in the film you get wired from the medicines, and on average I only sleep 3-4 hours a night.

A substantial drawback connected to the medicines opposed to the results of the operation, is that the effect of the one medicine (Stalevo) ends very abrubtly, meaning  that if I forget to take a new pill in the interval, I experience a flashback with very demanding fluctuations. The opposite will surely awaken some of my old self, being able to handle more situations in a good manner.

I must admit that it is a sort of relief to hear the surgeon that operated Michael, pointing out the scariness we all will feel facing  an operation in the brain. Yes, I am scared, and I will certainly be even more so in the weeks to come, but I am also confident that it will be a success!

Deep Brain Stimulation Surgery to treat Parkinson's Disease

Drugs

Yes, in order to function at all, I am heavily drugged, which is a problem in itself, as everybody surely knows. The operation will take away the need for most of these drugs, which is a reason in itself that I am looking forward to it.

I start the day (normally between 05.00 and 06.00) with a main dose of drugs, first a Sifrol 3,15 mg that lasts the whole day. Indeed this has  a really long term effect as I have been informed to stop taking it a week before the operation takes place. The most serious side effect I have from the drugs comes from this, the experts say. In truth this is so big and difficult that I need to tell you about it later, hopefully before the operation.

My second  'main course' is Stalevo, starting with a unit containing 150 mg levodopa and following up throughout the day with units of  100 mg. These burn out very quickly, so to avoid a backslash I must have a new one at least  every hour, giving me a daily dose far above the maximum recommended. I do not know much about side effects here, except for the probably innocent dark yellow it gives my pee.

My pre morning 'meal' ends with a 10 mg Eldepryl,  said to give a positive effect on the devlopment of the sickness. After that its a question of time, it takes at least an hour before the effect kicks in..If you know something of interest related to these drugs, please comment.

Operation ahead!

I have, eventually, received a date when they plan to operate me at Rikshospitalet in  Oslo( I live in Bergen).The date is April 2nd, ie it was 50 days yesterday, seven weeks exactly today. If you wonder, this is my main concern at the moment, not even the heroic fight by all the Norwegian olympic participants concerns me more.

I will try to express thoughts and feelings, indeed even facts, around this operation for the following weeks. If you think there is not much coming from me on a daily basis, it surely has to do with my sickness again; most days I am quite influenced by it and it is difficult to do almost everything. The author J.M. Coetzee has, to my knowledge, Parkinson himself and in a novel from 2005 we meet the main character Paul Rymant who is trying to lead a meaningful  life despite the decease. The book has a title that points to one of the key
problems threatening his ambition: Slow Man.,  You can find a review of this book in my former blog thauke2read.blogspot.no