Mental barrier

[Muukalainen]

Most of the older stagers on this site will be aware that I have Parkinson's Disease. It's been close to 11 years since diagnosis, and yesterday came the annual or so control check.

The last year hasn't been so good in some ways. Ericsson closed down its Modem business at the end of last year, a move that cost all of us our jobs. At my age and in my condition, that meant retirement, against my will but tempered with the understanding that I had had a far longer run in work than had been anticipated at the time of diagnosis. Although retirement has brought its rewards, especially having more time with my family, it also had a noticeable negative impact on the symptoms of the disease. Hence I walked, rather woodenly, into yesterday's appointment with the neurologist.

Things started off as normal, discussing symptoms, medication and the like, and then she hit me with the unexpected "have you read or researched anything about surgical options for your condition?". "Do you mean deep brain stimulation?" I replied, hoping the answer wouldn't be "yes". "Yes", she replied. Although I knew something about it, I wasn't overly conversant with it. What I did know, however, is that the surgery involves drilling holes in your cranium and inserting an electrode through one of those holes deep into your brain. There's no pain, but you do get to hear everything, and the thought of my lying there and the surgeon shoving a probe into the middle of my head and then running a load of experiments waiting to see my responses, churns my stomach more than I can explain. I'm squeamish at the best of times, and the discussion went on with me in an increased state of agitation.

The potential benefits can be considerable. I've met some people who've gone through this, and the improvement in their condition has been, at the very least, noticeable. I've enough margin in my medication at the moment that this option lies perhaps 2-4 years ahead of me, and, even at this stage and in the absence of any other new developments in the treatment of Parkinson's, I'm pretty sure that this is an option that I will take. In the intervening period, I need to climb over these rather grim mental images of what the surgery will be like.

[Bored Of Education]

Mental barrier

Wow, that's quite a choice. As someone who doesn't like going to the dentist, I don't think that your squeamishness is peculiar. I have had an operation on my toe while conscious and, of course, had to have a look and regretted it. Of course, yours is much more serious but, at least, you won't be able to see it, just hear it, which may be a small comfort. I have to have my coccyx 'manipulated' soon which is under local anaesthetic and I did wonder whether, considering what 'manipulation' means, I could have general.

Anyway, enough about me, I suppose only you, your doctor and those close to you know whether the trade off of living with and managing a condition such as yours or having the operation is worth it. All the best to you.

[caja-dglh]

Mental barrier

Is deep brain simulation the surgery where people can effectively turn many of the symptoms on and off? If so I had seen some things on it and it seemed deeply fascinating, though obviously is a huge decision given the scale of the operation.

[Muukalainen]

Mental barrier

Thanks, Bored, sentiments appreciated.

caja-dglh wrote: Is deep brain simulation the surgery where people can effectively turn many of the symptoms on and off? If so I had seen some things on it and it seemed deeply fascinating, though obviously is a huge decision given the scale of the operation.

Yes, I believe so. I don't have a very full picture at the moment, but from yesterday's discussion and subsequent reading, it seems the purpose is to modify the behaviour of the faulty part of the brain by first inserting the electrode into it, and then adjusting the amplitude, frequency and pulse width of the signals fed into it until the optimal response is obtained. Fascinating it most certainly is.

[HORN]

Mental barrier

This treatment sounds quite Michael Crichton's The Terminal Man. Frightening, of course, but how wonderful to have some hope of a degree of respite from such a shitty condition.

Is the effect of this treatment likely to be long-term?

[Femme Folle]

Mental barrier

I'm so squeamish I made them put me under to have a tooth pulled, so I get that part. I think I would be okay with being awake as long as I couldn't feel or see anything they were doing. Even when I get my flu jab, I can't watch the needle go in, and those are pretty much the tiniest needles they have (or so I've been told by someone who may have been lying to me).

I wish you all the best with getting past that part. The imagining is usually much worse than the reality.

[ad hoc]

Mental barrier

Fully understand your squeamishness Muuk. I am shifting uncomfortably on my chair just thinking about it.

When I read the thread title and your name there, I wondered if this was going to be about your Parkinson's. Since you last commented on the subject my father has been diagnosed with it (about 3 years ago now) and so my knowledge of the subject has increased substantially. I hadn't realised that some people with the illness have actual mental blocks where they are walking and suddenly find there is an invisible line which they cannot get past, and they just stop. Luckily that's not one of my dad's symptoms (yet anyway) but it sounds really tough. (So, what I'm saying is that I'm glad the OP wasn't your description of one of those events which was what i feared when I opened it)

But yeah, I have no idea how you would get past the mental block you describe. Not sure if I could.

[Amor de Cosmos]

Mental barrier

I too wince at the thought of the process. Is it necessary to be conscious, or could you request anesthetic?

In any event, the very best of luck. My oldest friend was diagnosed a couple of years ago. He says it's under control, but it's certainly imposed limits that didn't exist previously.

[Muukalainen]

Mental barrier

HORN wrote: Is the effect of this treatment likely to be long-term?

I'm not 100% sure, but potentially, yes, or at the least, medium term. I would imagine that there wouldn't be much point in doing it if the benefits were likely only short term. The surgery itself is quite lengthy and presumably costly, and statistics show the attendant risk of haemorrhaging in the brain at about 3%, the effects of which can be devastating. Perhaps I have understated the potential benefits somewhat since they can even be life changing: substantial alleviation of the symptoms and/or reduction in the medication over a sustained period of time. There's plenty to be optimistic about here.

[Muukalainen]

Mental barrier

Femme Folle wrote: I wish you all the best with getting past that part. The imagining is usually much worse than the reality.

Word. This is quintessentially my problem: if I could turn my imagination off for this one I'm sure I'd be fine.

Thanks for your wishes, and with you all the way when it comes to needles.

[Muukalainen]

Mental barrier

ad hoc wrote: Since you last commented on the subject my father has been diagnosed with it (about 3 years ago now) and so my knowledge of the subject has increased substantially. I hadn't realised that some people with the illness have actual mental blocks where they are walking and suddenly find there is an invisible line which they cannot get past, and they just stop. Luckily that's not one of my dad's symptoms (yet anyway) but it sounds really tough. (So, what I'm saying is that I'm glad the OP wasn't your description of one of those events which was what i feared when I opened it).

Sorry to hear about your Dad, I hope that he and those around him are learning to adapt to his condition. There are times when this will be a long way from easy, but the disease isn't life threatening and can be managed.

There hasn't been any radical change in my condition, just a gradual continual deterioration over time, albeit apparently having been accelerated by the loss of my job. The biggest change is in the efficacy and endurance of the medication, and this is a sign of the progress of the disease within my brain. It is this reduced effectiveness of the medication that is making the surgical option more desirable.

At this point I want to make it clear that I'm still a million miles from being a basket case. I still play sports and indeed would be playing floorball now if only we could find enough players for today's session. There are whole days when the uninitiated wouldn't even suspect that there was anything wrong with me. At the other end of the spectrum, I can associate with your comment about getting stuck. This can occur normally first thing in the morning before the medication is working, and would be when I need to change direction, particularly turning round, or when the path in front of is partially obscured, for example a doorway. It's largely a question of getting my balance right and then sorting out which impetus to give to which leg, and I'm working on it.

[Muukalainen]

Mental barrier

Amor de Cosmos wrote: I too wince at the thought of the process. Is it necessary to be conscious, or could you request anesthetic?

In any event, the very best of luck. My oldest friend was diagnosed a couple of years ago. He says it's under control, but it's certainly imposed limits that didn't exist previously.

If only, but unfortunately, full consciousness is mandatory since the surgeon needs to see the responses to the various settings he makes. I had thought about turning up completely pissed but the impulse unit probably hasn't got a setting for staggering around the operating theatre singing "show me a home where the buffalo roam". I don't even know the words to it, anyway. More seriously, thanks for your wishes and sorry to hear about your friend. Another one, this really is quite a common disease.

[hobbes]

Mental barrier

Golly Muuk. That would shit me up. I was almost shaking with fear when I had a Pericardiocentesis (a 2 foot needle from under the ribcage to the heart cavity to drain a pericardial effusion) while wide awake and that carries far less body horror.
That said, the anticipation was definitely the worst bit. The actual procedure was essentially painless, if a bit weird. They don't do these things to you without mitigating as many of the bad bits as possible.
And the stories you'll have to tell, afterwards!

[Bored Of Education]

Mental barrier

Muukalainen wrote:

I wish you all the best with getting past that part. The imagining is usually much worse than the reality.

Word. This is quintessentially my problem: if I could turn my imagination off for this one I'm sure I'd be fine.

Thanks for your wishes, and with you all the way when it comes to needles.

Shit, I didn't realise you had a thing about needles. With all that I have said above, I have no problem with needles. More power to your, erm, elbow, I suppose, then.

I am sorry to deviate from the seriousness but what the fuck is floorball? I hate to say it but it sounds like you just lie on the floor passing the ball and, as such, no condition could stop you from playing.

[caja-dglh]

Mental barrier

It is basically ice hockey without the ice. Google is your friend.

[Bored Of Education]

Mental barrier

Isn't that, erm, hockey?

[Muukalainen]

Mental barrier

hobbes wrote: Golly Muuk. That would shit me up. I was almost shaking with fear when I had a Pericardiocentesis (a 2 foot needle from under the ribcage to the heart cavity to drain a pericardial effusion) while wide awake and that carries far less body horror.
That said, the anticipation was definitely the worst bit. The actual procedure was essentially painless, if a bit weird. They don't do these things to you without mitigating as many of the bad bits as possible.
And the stories you'll have to tell, afterwards!

In the mental barrier to be overcome stakes, I'm not sure I can distinguish much, if anything, between what you had done and what is facing me. I presume and hope that it went well for you. Did they immobilise you in any way during the procedure?

[Muukalainen]

Mental barrier

Don't worry about the needles bit, Bored, I can talk about them without any problem, it's just looking at them as they're about to be stuck into someone that I don't like.

Floorball is indeed a variation on hockey. It's played indoors, the stick is made of fibre glass with a plastic blade and an air flight ball is used. And if you think that that sounds a bit tame, then this is what it looks like at international level. Practically unknown in the UK it may be, it's a big sport throughout Scandinavia.

caja-dglh wrote: Google is your friend.

That's stretching it a bit...

[Balderdasha]

Mental barrier

This is a very intense procedure to have to consider and I wish you strength and good fortune. My friend's father has recently been diagnosed with Parkinson's, so it is comforting to hear that treatments do exist even if they are unpleasantly invasive.

I've never undergone a remotely similar operation, but I did have to have a caesarian while conscious just over two years ago. It was something I was trying to avoid (it was an emergency, not an elective caesarian) and the anticipation of it as a possibility was pretty bad, but again the reality was nowhere near as bad as imagined.

The benefits of staying conscious were that the anaesthetist could triple check in advance that my pain sensation had been knocked out. The spinal injection essentially targets pain and temperature sense but leaves you still able to feel touch. So they spray you with a cold spray and you tell the anaesthetist where you can sense cold and where you can't. If you can't sense the cold, you won't be able to sense any pain. The operation itself was fairly fast, maybe 20 minutes, and the sensation of someone rummaging in your womb is very odd, but the arrival of my baby soon distracted from that. The surgeons cauterised as they went and sewed me up very neatly so I have few complaints.

Still hoping it's not something I have to go through again this time round.

[G-Man]

Mental barrier

The procedure, Muukulainen, sounds like it might give you a good story to tell (if the 3% risk doesn't kick in), aside from the benefits it would hopefully produce. So there's that upside to the squeamish downsides.

Bad news about the forced retirement. Are you still coaching rugby?

[Muukalainen]

Mental barrier

Thanks G and Balderdasha, and hope the pregnancy goes more straightforwardly this time around. No, I'm not still coaching rugby. I stopped a couple of years or so back. I've thought about starting doing it again, but the team doesn't exist any more and recruiting is long and hard work and also the son's football is taking priority at the moment.

Hobbes' and Balderdasha's replies have given me plenty of thought. I'm not sure that I see, in terms of invasiveness anyway, very much difference between having an electrode inserted into your brain and a needle inserted through your thorax into the (vicinity of the?) heart and a caesarean section. Undoubtedly, there are differences in the benefits versus risks factors, but these are things that can be rationalised.

[Kevin S]

Mental barrier

Floorball looks like something I played at primary school, that we called "unihoc".

And it turns out that Google is indeed my friend, as it seems that Unihoc is a brand name of floorball equipment. So our teachers must have just read the names off the sticks and the balls and called it that.

We won the Cambs Circle Schools Mixed Unihoc tournament in 1994, I'll have you know. There was a shield and everything.

[Kevin S]

Mental barrier

And, er, best wishes Muukalainen.

[Muukalainen]

Somewhat shy of two years on and my physical condition has deteriorated to the point where DBS is, while not quite a necessity, then getting pretty close to it. In the spring I underwent testing to determine the suitability of DBS and me for each other, and the results came out highly positive. Last Thursday I had an appointment with one of the neurosurgeons where we reviewed the testing, checked some other details, and then made the decision to go ahead with the surgery. I'm now in the queue for the MRI (which is done under general anaesthetic) and then about a month later should come the surgery itself (which isn't, hence this thread).

There are, in fact, two probes to be inserted, one for each half of the cortex. One neurosurgeon takes one side of the brain and the other neurosurgeon takes the other side of the brain. A radiographer, apparently a man with a beard -- obviously someone I can trust, makes up the team of three. The work is done sequentially, not both at the same time, and the right side of the brain will be done first because the symptoms of the disease are more severe on the left side of my body. I'll be able to move my arms and legs during the operation, but definitely not my head, which will be fixed to the operating table. For some reason it didn't occur to me to ask how this is done. I doubt that I would like the answer. Dougie and Dinsdale Piranha have been very much on my mind for these last few days. The battery pack is inserted into the chest, and should last 4-6 years depending on usage.

The main risk is that of infection. The incidence rate is 5-7% and is mostly associated with the battery pack, though to a lesser extent also with the electrodes. The worst case scenario appears to be to have to start all over again. The next biggest risk is that of haemorrhaging. Although this is potentially a far more serious risk, the incidence rate is very low at under 1%. On the positive side, it's reasonable to expect the symptoms of the disease (the disease itself progresses unabated) to be retarded by a decade and a 50% reduction in the dosage of my medication. That's a seriously good improvement, and if all goes well I should be fully mobile by Christmas.

[Amor de Cosmos]

Wow. Best wishes seem almost facile in the circumstances, but you certainly have mine.