Such a refreshing and TRUE view ~Parkinson’s!
For the man I care for, and for all of us who are bound by love and illness.
I know the one I care for, ‘of course I do’, I say!
He’s the man he always was…just sometimes slips away.
Strategy, pre-empting rules are broken all the time,
He plans for careful motion, but chaos tows the line.
Time, the great betrayer, advances in the fray,
Adding pointless motion – his strength to sap away.
Even in the darkness, when sleep should keep him still
Spasms of such magnitude are chipping at his will.
But hang on, he’s my husband – the father of our sons!
He won’t give ground that easily! No battles left un- won?
Sometimes if I’m truthful, I think the fight is lost,
I think of all those moments of carnage as the cost.
At times he must withdraw. I have to give him space
To mourn what he has lost, to try and steel his face.
I know I cannot be him; I cannot feel his pain.
A Prince without a palace; his struggles all in vain.
I do not care enough! I’m doing it all wrong!
It seems the burden wasn’t what I’d signed for all along.
I’m mad as hell and petulant – this was not the deal,
You dare to take my husband and make of him your meal?
Then leave him spent, exhausted; his body will not cease..
Or if it does, it’s worse, and then I beg for his release!
You twist, contort and mould him in agonies anew
And then you seek to undermine his mental prowess too?
No way, you evil pestilence! You cannot have his mind.
He’s farther from defeat it seems; you’ve calculated blind.
So as we walk together, me and him and you,
Remember that our marriage bond commits us – just us two!
You don’t belong, unwelcomed. You’ll never be embraced.
We’ll gird ourselves to fight you – you’re not the first we’ve faced.
Hush now my mind, be quiet. Stow away your fears.
I’m talking to myself again, whispering in tears.
Put away resentment, cast off all shattered thought!
Just one foot front of t’other, think only what I ought.
For we’ve a ways to go yet; this road the die has cast,
Before my man can settle, lie peacefully at last.
In our hardest moments – the times of angst and pain,
I know the Lord forgives me for the darkest in my brain.
To come, there’s joy and laughter, and blessings to explore!
For we are merely mortals, our souls He will restore.
Lisa Vanderburg November 2015
Deepest apologies – I do keep forgetting what blog sites I use, as it’s so much easier than to do it on LinkedIn! That said, there’s stuff I’d rather not put on a ‘professional’ site – more personal. I’ll do my best to catch up on here and STICK TO IT!
Written in 2014, it still stands. Difference is, BSC in into FDA trials now in the US – battling with boys who don’t play nice…..
Almost titled it ‘The Grave, Ground Realities’, but as my husband said, some words just shouldn’t be put together……
This is the most important and final addition…probably: it’s for the PATIENT and their families.
That is my hope and my sole raison d’être. I do have an axe to grind, but with no one specific, and I don’t ‘make’ anything from this. (Actually…does a Boston Scientific pen count?? ‘Cos mine’s broke.) In fact, doing this has prevented me from making any money, so I hope that helps in what I said above: It’s for thePATIENT. Why? Because if you don’t know; you can have a voice.
First, let’s address all the many, many PD Foundation, Association, Group etc.:
I salute them – all that they do is noble, wonderful and worthy. The peeps that run them are right up there with the angels (but their job is harder…can’t just take off when they feel like it). Their fight for YOU is nothing short of pure altruism. Millions volunteer, and they are all both warriors and saints – I applaud every single one of them! But…they have to be, by nature, unbiased. That said, they can ‘display what’s on offer’, but until it’s written in stone, they simply can’t afford the ‘luxury’ I have of just blurting out MY opinion. Being me is an advantage in this case. Wow…that’s a nice change!
And, seeing as I’m gonna have to do the loathsome and mention myself, I may as well ‘fes up to my humour and grammar. The afore-mentioned is my ‘steam-release valve’. I always use it when I write. Believe me; I ain’t that funny at home…just ask my husband! The grammar is deliberate and open rebellion: the Nuns made me take elocution lessons at boarding school – a 10-year old Yank on British soil, geared up in blancmange-coloured, polyester knickerbockers. But they were FUN!….albeit far too alarmed at ‘thrush-outbreaks’, which they put down to violation (from whom, I ask? nearest boys were 15 miles away!), instead of the obvious: polyester…and tonnes of it! My computer’s’ spelling and grammatical error doohickey only gets used in emailing – not ‘talking’. This infernal machine is the bane of my life. To say we do not get on would be a slight understatement. I have threatened to water-board it, as I can’t find the hammer.
But getting to the point: it’s just a writing ‘style’ – nothing more. I take the matter at hand with fearful responsibility and gravitas. So, bite me.
To reiterate; I’m a wife and carer for a PD husband. I am also a Peon. For you other-worlders’ outside of the US, a peon is technically the least important person in a corporation – you ‘pee on them’. But I take pride in my lowly status…as a member of LinkedIn, it is gobsmackingly amazing just how many highly-respected ‘Top Dawgs in Neuro-Space’ are talking to me – never met so many CEOs, Neurologists, Neurosurgeons, Neuro-Noggins in my sorry little life. They saw, and have found my posting good. Ain’t trying to toot my own horn – it’s an FYI for YOU. For example: I have no credibility; they have HUGE creds – equals; what I’m saying is verified by them. It’s their collective assurance that has made a few of them (with their unstoppable passion for all things GOOD for the patient), emboldened enough to speak out to me, the peon! Even more impressive (you’ll just have to take my word for this) NONE of them work for Boston Scientific!! To me; that’s pivotal. If I have a hope in hell to reach you, the info’s gotta be pure and untainted.
That said, naturally I will not divulge (even between them) who they are. This paper will comprise more of their words than mine – re-worded, if you follow me….
I digress: Pete (my hubby) was blessed to receive gratis the Boston Scientific’s Vercise with its 25-year battery (IPG), as part of their trialling here in the UK in 2012. The whole thing with PDers coming up to DBS is, there’s neither time nor energy to fully ‘explore’. If you wanna know more about that, see my post ‘The Parkinson’s Paper: DBS? Read this….’
That’s what set me off in the first place. I was intrigued by what was happening at one of the most difficult and exhausting period of our lives. Of course, we’d read up on DBS in Pete’s early PD years; and, probably like you do, we always ‘kept up’ with what’s going on in the wild world of Parkinson’s. But in those quiet hours intermixed with furious activity (PD-related and not), it really hit me – we know nothing. That’s what set a fire under me for the first post. And I thought we knew enough – laughable know! Took me the better part of 18 months to really studythis thing. Badgered people endlessly people about it. As I say in the first post; all I got was gathered from the www – no wiki (apologies again, wiki – no offence!). I could (and probably will) be accused of bias. But that is not correct, for what I am displaying here is a righteous predisposition of what I now know to be the realities. You could argue that feelings of gratitude at this ‘gift’’ have gotten the better of me, but you’d be way off base. Unlike most panhandlers in the God-awful days of the Klondike, we really hit pay-dirt…and its solid gold.
I wanted a post like ‘PD & DBS for dummies’…..changed my mind on the last word!
Okay. Let’s get to it – the darker, less savoury bit that YOU need to know.
Verbiage translation (yup, comin’ from me……haha)
HIGHLY RESPECTED TOP DAWGS IN NEURO-SPACE: NS…..just quicker.
‘ : a quotation mark will denote the above NS comments – unless LI will allow me to use colour? Nope – they don’t. So I’m gonna bold their words too…
IPG: Implantable Pulse Generator, sometimes referred to as “the CAN”, or simply the battery et al in the device in your chest.
BSC: Boston Scientific.
RC: rechargeable battery.
PC: Primary cell. That’s what you guys who have your IPG replaced every 3 or 4 years; you don’t have an RC.
SCS: Spinal Cord Stimulator for treating chronic pain
DBS: Deep Brain Stimulation
PD: Parkinson’s Disease
VERCISE: is the name of the Deep Brain Stimulation device (and all its components that go in your noggin) that is used, and belongs solely to BSC. One recipient inadvertently referred to it as ‘Versace’. Little did she know how right she was!
INCUMBENTS: the word ‘Incumbents’ refers to: Neuromodulation MedTech Companies in current competition primarily, but not exclusive of: Lobbyists, Hospital departments offering neuromodulation therapies, hospital purchasing departments, Health-care & Insurance Companies, Big Corporate Business, Pharmaceuticals, Politicking, and The Almighty Dollar.
Basically, all that makes going to work on Wall Street such fun! ….and so verylucrative.’
Disclaimer: Yadda yadda yadda. Blah blah yadda, blah.Yadda my muddas better than yours,yadda yadda. Blah blah yadda, blah.Ya boo sucks. Yadda nah nah-nah nah boo-boo stick your head in dog poo yadda yadda. Blah blah yadda, blah.Yadda yadda spin on it pal,yadda. Blah blah yadda, blah.Ya boo sucks. Blah yadda. Bite me.
Part 1: Implantable Neurostimulator Batteries: Are they all equal?
No. Not all implantable batteries – IPGs – whether primary cell non-rechargeable or the rechargeable on the market by all the medtech companies are equal. Far from it!
Back in the day: ‘For the record, BSC was the first one in the industry to have provided 5 year warranty for its zero-volt technology rechargeable battery in addition to its claims of battery life of up to 25 years. Initially both main neuro incumbents offered a 1 year conditional warranty. Over time they followed BSC with commercial warranties offering also 5 years.’ These days, because of the roots of its Neuro technology coming from unique cochlear technology, BSC is streets ahead of the Incumbents regarding many of its devices, including Vercise for Parkinson’s DBS. Their 25-year rechargeable battery coupled with the patient-friendly recharging – honestly, a monkey could do it – no offence, but if you’ve got a different device, you’ll know what I’m talking about!
I must here reiterate what ‘cochlear’ means. In the Oxford Dictionary, it says: ‘Cochlea: The spiral cavity of the inner ear containing the organ of Corti, which produces nerve impulses in response to sound vibrations.’
A cochlear implant is basically a very sophisticated hearing-aid with a surgically implanted electrode and external components. So a sensory neurostimulation system for the cochlea (something as complex as PD) means ‘minutiae’ as in really, really tiny. And that means they can pack a lot more punch into that puppy. I’ll give you the example from my first paper: ‘Think of the old Christmas-tree lights – remember when if one light went out the whole lot went out? More advanced Technology with its roots from cochlear implant developments means that this perilous business no longer happens. If one ‘light’ goes, the rest reconfigure to pick up the slack.’
Knowing now what I at know, it’s one helluva lot more than that, but I could wax lyrical on that for days!
I ripped this straight off someone’s site:
‘The Vercise™ DBS system was designed to help make a difference to both physicians and patients. The intended benefits include:
- Patient Comfort: The Vercise implantable pulse generator has been designed to have a small footprint of 20 cm
- Longevity: The Vercise™ DBS System uses rechargeable battery technology. The stimulator battery is indicated* to provide at least 25 years of service
- Patient Convenience: The Vercise™ charger and remote control are completely cordless and designed to make charging simple. The remote control communicates with the stimulator from a distance of 45 cm or less, allowing the patient to view the screen while communicating with the stimulator
- Reliability: It is intended to reduce surgical interventions via the Vercise™ DBS System’s Zero-Volt™ battery technology. This means that the battery can be completely discharged without causing battery failure or damage – even when the patient forgets to recharge.
The Vercise system comes with a charger and remote control.
Both devices are completely cordless and designed to make charging and using the device easy.
The remote control allows the patient to control their stimulation (ON/OFF) and assess the stimulator battery status. The remote control communicates with the stimulator from a distance of 45 cm or less. This enables the patient to view the screen while communicating with the stimulator.
The charger contains one simple-to-use on/off button. Once the charger is turned on it will begin to beep until it is aligned with the stimulator. The charger can be worn with an adhesive patch or a charging collar. The charging collar is lightweight, adjustable, and available in two sizes.
For any information related to Vercise™ DBS System and its availability please contact:
The Vercise™ Deep Brain Stimulation System is designed to provide comfort, control, and convenience to the clinician’s practice and to patients with Parkinson’s disease. It is intended to minimize side effects of stimulation by controlling current at each individual contact on the lead (essential capability that enables greater stimulation precision via current steering hence providing greater individualisation of therapy).
The system is designed to offer unique patient benefits including the longest battery life available for DBS therapy and the smallest stimulator footprint*.
* Comparisons based upon data from St Jude Medical Brio Manual, Medtronic Activa RC Manual, Vercise DBS System Manual
- Video from Spain [3:32 min]: A Patient Testimonial with Vercise™ Deep Brain Stimulation experience
- Video from the UK [4:57 min]: Life before and after DBS
- Video from the UK [3:48 min]: Vercise Experience (Implant, Remote Control and Recharging)‘
The middle one’s ME!! Okay, it all about Pete: http://youtu.be/astED5bSQX8
Okay, if you wanna read the whole thing, here’s the link:
Not even from their own website. Why? Because I don’t want them involved. It is of pivotal importance to me that they have NO SAY in what I write. I’m real careful to keep them outta it – the culpability has to stay solely in my court.
I leave the end of Part 1 to the NS to explain a bit of ‘how we got here’:
‘Cochlear implants were indeed a very challenging development as this was the first “sensory neurostimulation” indication requiring very miniaturized electrodes and customized precise programming capabilities based on neuromodulation principles.‘
So, it was not so easy for the [Incumbant] companies leading in the cardiac-pacing world to simply take their pacemaker technology and with some tweaking use them also as cochlear implants. However some succeeded in modifying sufficiently to bring spinal cord stimulators and DBS systems to the market, opening the field of neuromodulation to treat chronic pain and movement disorders like PD and Dystonia’
Part 2: The Implantable Battery Competition
Let’s start with a bang, shall we?
‘BSC’s decision to enter the new space called neuromodulation by acquiring Advanced Bionics who were just commercializing their cochlear implants at the time, took a couple of years of market and technology assessment including many discussions with neurosurgeons, pain specialists, neurologists, and even hospital purchasing departments, to try to understand what was high on their unmet needs at the time with what they were using (only two [Incumbant] providers’ neurostimulators were on the market at that time). Their (BSC) research revealed their (neurosurgeons, pain specialists, neurologists) needs after years of experience: These were:electrodes that don’t break, precision of stimulation zone, the longevity of the batteries, and the user- friendliness of the externals like the patient remote, and of course the programmers used by the health care professionals to program the stimulators.‘
I think you don’t need me in this…the NS got it!
‘Please do not forget the Docs [Doctors] in this paradigm shift!!! Everybody points out that companies are happy to sell new devices every 5 years, BUT the Docs also love to implant new devices every few years…. Perhaps something to do with how much revenue and work will they miss if that were to go away…??? The prices for devices offered by the companies are not really segmented by longevity and are in the same general ballpark price range, regardless if they last 5 years or much longer… Certainly, calculated on a cost per annual basis, the much longer lasting devices are MUCH cheaper than the 5 year devices! We really need the PATIENTS here to insist on the best device and the highest longevity, nobody else will speak out for your interest for the longest lasting devices!’
‘I wonder how long it would have taken the two main incumbents to bother to start offering rechargeable systems since everyone was (and many still are) happy implanting non-rechargeable systems where pain patients (for example), were often asked to not use all the ‘time’ in their implanted device, in an attempt to prolong the battery; thus compromising pain therapy to prolong the life of the implanted non-rechargeable battery, and then simply replacing every couple of years. I discussed with some neurosurgeons the ‘wisdom’ of using the DBS stimulator IPG that was being regularly replaced: – in worst case examples every 6 to 9 months for Dystonia patients with DBS implants because of the high energy consumption and exposing the patient to repeated surgery risks [over, that is the 25-year battery life offered by the Vercise device from BSC]. But everyone thinks short term and for their status quo, it’s a great recurrent billing and revenue for companies to be pushing only non-rechargeable devices that require replacements.’
‘All this knowledge and interactions with the chronic pain patients implanted with the rechargeable SCS systems was of course also incorporated into the Vercise DBS system too. And in my opinion it never ends as continuing improvements are always there if people listen and incorporate the real world experiences back into those improvements.’
Part 3: Patient-First Policy at BSC
This is the most important thing now: for you to SEE what I see! The patient comes first.
One Neuro-Spaceman told me of a ‘high-up on the ground’ saying: ‘At the beginning, the salesman in me was impatient at why it takes so long to bring these new neuro products to market, but understanding in more detail the philosophy and practice of designing and testing the neuromodulation devices that fit the patient needs and not the other way round, provided the balance with stronger belief over time that I would not be bullshitting or selling a dodgy claims. I’d truly be able to look into the eyes of the doctors and the patients and KNOW that my integrity was intact convincing them of that better was possible with the new technology being introduced in the market. Each employee working in the plant was made to understand that they are working on a system that has to be implanted in a patient providing therapy for this long period… imagine it was member of your family, would you want them to go through unnecessary battery replacements now that this smaller and longer lasting rechargeable system was available?’
This is pivotal to getting across the true, unsullied passion of BSC people. I can’t even begin to imagine what went through their collective head!
Another Neuro Spaceman said: ‘…in my opinion the issue in the near term has less to do with the pharma lobby (although they have more to do with the delay in patients getting even to the option of neurostimulators, instead of popping pills so their interest is to maintain their maximum budgets there). The main issue in terms of adoption of rechargeable neurostimulators has been to do with two main forces. The two main incumbent companies’ pressures (even if they have both now non-rechargeable and rechargeable batteries -the former being the biggest part of the business, and the latter (in my opinion) being technologically inferior to BSC 25 year battery technology. They have played to delay faster conversion of markets to rechargeable neurostimulator batteries for chronic therapies. It’s the conservative short term thinking healthcare system that only looks one or two years ahead in terms of hospital budgets. The rechargeables are considered to be more expensive up front than non-rechargeable batteries so, when the crazy alliance eventually realized that we were pushing the “inconvenient and painful truth” directly to the patients and patient associations about advantages of rechargeable technology, they [the incumbents], made their whole strategy to position rechargeable as a ‘second tier option’ and they even lobbied the health systems and guidelines – even to extent of saying that, by default, ‘all patients should get first the cheaper and shorter life non-rechargeable, and only if they come back with empty battery they could be candidate to be implanted with a second surgical operation with rechargeable battery’.
Furthermore (really made my day!), I was told;
‘Finally, YES, you recognized a key element of the design requirements – to always put the PATIENT in the centre of the therapy, and the Doc [Doctors] second in line!
This however, is generally not picked-up enough by the patients….’
Part 4: The Painful Truth: the Incumbents
‘forces against meaningful innovation and change are hard to overcome!’
Word (in Neuro-space) has it that BSC might be forced to provide (in the future) shorter life IPG batteries, instead of its life-changing 25-year one for example for neurostimulators. Why? Because of the Incumbents’ practices and tactics to delay the conversion – all of them!
‘As for the issue of challenge regarding the adoption of rechargeable battery and valuing fairly the rechargeable long life batteries, we became the ‘broken record’ in the neuromodulation space, arguing to get a balanced and complete picture of the cost vs total value of this innovative technology, to look hard at the total value – clinical, economical and quality of life for the patients over the years of use; fighting the crazy mentality and continuing reality of implanting non-rechargeable…..even if intellectually majority of stakeholders accepted the superior advantages of smaller and rechargeable IPG systems – particularly for the patients.
Boston was the first one to bring the rechargeable neurostimulators to the market and challenged this status quo and quasi mono/duo-polistic market reality at the time with hardly any meaningful innovations and scarce healthcare resources being used up; with up to 30 to 35% of procedures for SCS and DBS being battery replacements (some hospitals even projected they would only be able to do battery replacements only over time and no new patients but continue to implant non-rechargeable batteries – almost like an addict!), one of the consequences was of many new qualifying patients getting delayed or not getting implanted because of limited budgets used up for battery replacements first.
Sad reality and dogmas in established health systems which consider new technology to be more expensive rather than retiring or decommissioning older and now inferior technologies, or perhaps more the vested interests in the established healthcare systems in US and particularly in Europe that make it so hard to bring and adopt new meaningful innovation faster.’
So indeed…at least within neuromodulation space, fighting the battle with rechargeable 25 year battery life systems against the incumbent forces, who have both cheaper non-rechargeable and rechargeable solutions and, keeping in mind particularly, the non-US and non-European markets with emerging healthcare systems and even more limited healthcare budgets puts BSC Neuro in more challenging position. The global market demands are the reason for offering cheaper solutions. However this decision to have ‘cheaper’ non-rechargeable systems still does not justify the forces blocking or delaying the greater adoption of the 25 year battery life systems in the developed US and European healthcare systems for treating chronic illnesses requiring chronic long lasting therapy without requiring unnecessary battery replacements. Believe me, in the scheme of things, these ‘forces’ simply aren’t interested in the patient first. So BSC will likely introduce the shorter battery life systems but hopefully, in addition to, rather than instead of, the 25 year systems like Vercise.’ Interesting to compare similar battles in the the world of cardiac pacemakers and defibrillators.
‘Let me give you an example, the BSC defibrillators and Heart Failure Devices are among the smallest (and thinnest) implantable devices in the world, AND they generally provide for a 10+ year lifetime (Best primary battery and very low power consuming electronics, which did cost Millions to develop and in fact, BSC makes its own primary batteries in a BSC battery plant in _). Again, putting the patient in the centre of the therapy provided! The competition provides these device with a longevity of about 5 years.’
He went on to say: ‘The competition provides these devices with a longevity of about 5 years. You would think that this would give BSC a real boost in market share, but NO, this has not happened. Instead, BSC is now developing the same devices with battery- longevity of 5 years with a smaller battery in a smaller can, hoping that the smaller size will provide for the market share improvement…. Is this the best for the patient? I don’t think so…’
‘… BSC, as far as I know, will keep the very long lasting DBS implantable neuro-stimulators!! I just gave this as an example of how important it is for the PATIENTS to speak up and to demand long lasting devices, otherwise the good companies will be forced to change their offerings, if not rewarded for doing the right thing! That is now happening in the Defibrillator/HF implantable device world, not (yet!) in the DBS neuro-stimulation world…. But everything is market driven and if BSC will not see an advantage in providing very long lasting DBS devices, why would they continue to offer them? Maybe instead offer something else for the money invested in the cost price of the device, that will resonate more with the Docs??’
This is outrageous, totally unacceptable, and just plain WRONG! It will negate the whole point and proven promise of DBS Vercise’ 25-year battery. We all lose if the Incumbents get their way.
Should BSC be ‘forced’ to include a shorter life non-rechargeable battery, when the 25-year battery is so clearly best for the patient requiring chronic therapy instead of having to undergo unnecessary battery replacement surgery? If so, it’s the fault of the health system and the vested interests: short term profitability, Politics, Pharmaceuticals and Incumbants Lobbying. The Almighty Dollar demands. And if BSC don’t agree to this ‘future demand’, will it impact their FDA approval? Looks like it’s as simple as that!
And this is where the rub lies: if we – the patients and families – don’t speak out NOW, we have lost any chance in a ‘voice’. And we might lose BSC’s 25-year battery – that piece of art in motion, which they are constantly finessing, as they do in all things.
So I ask for your voice, for your passion, for your commitment. Speak now, or say goodbye to love!’
Roman numerals time – yippee!! Because this post if very long (and just heaving with useful information), I’m gonna break it up – even I don’t have the attention span to be able to read it all in one go – nope.
This is living proof that me, and my computer, and the internet, and all things related; are two warring factions; and if it carries on like this, I’m gonna kick it like a dead car. I mean, really. It’s a machine..and I bought it! It’s gotta learn who’s boss around here..or maybe I do? Anyhoo, I’m re-posting my 4th post, because it’s the only way I can figure it out to ‘get it up front!’
Amongst my other ‘talents’, I do love a good mystery to gnaw on. And this one was a doozy! I’m a wife and carer (that’s caregiver to you Yanks) to a Parkinson’s patient who underwent DBS in September of 2012. Now, that really piqued my interest: not the how (way beyond my mental prowess), but the who, what and why.
I spent the next year or so researching PD and DBS via the World Wide Web (not Wiki…sorry!). Fundamentally, what I’ve done is collate all that information into a readable, informative and (hopefully) enjoyable read. I’m a bit pithy with it because of some of what I’ve learned. My papers have been checked and my sources are available for anyone who wants them. Permissions have been sought from Medical Publishing sites, although nothing is taken verbatim, just in my own words.
The point of this page is to give those PDers and their families some perspective in what I know to be a very harried and difficult time. The last thing in anybody’s mind is ‘hang on….I want to choose who’s in my head!’
DBS 101: the crash course
Let’s start with a brief history. Professor Alim-Louis Benabid, of Grenoble, France, is the accredited father of today’s DBS. That is to say, it was he who discovered that high-frequency pulses, introduced into the correct target of the brain, reduced Parkinson’s symptoms.
But wait! What about Spiegel & Wycis, who in 1947 published their paper ‘Studies in Stereoencephalotomy’. Respectively Neurologist and Neurosurgeon, they were busting nuts to get away from the appalling destruction caused by frontal lobotomies for psychiatric patients. It wasn’t long before these guys caught onto motor-function disease, so que?
Or Irving Cooper? Who in the 1960s, nicked the internal carotid artery of a brain surgery patient, inducing a stroke but also causing cessation of tremor on the stoke side?
Or Don Richardson? He performed DBS in the 60s too – for pain-management – complete with an internal battery and external control. What’s up with that?
Okay, we better sort this out. Of course modern-day DBS has an eclectic background, like most things in life that comes from the culmination of a great deal of wonderful, eccentric, painstaking and sheer graft of many, many people. And, naturally, a copious degree of oopsies. That’s a GOOD thing, by the way. Some of the most tasking problems that life throws us are sorted out by accident – you probably know that.
Before Prof. Benabid, ablative surgery – Pallidotomy, Thalamotomy or Subthalamotomy – for Parkinson’s was the op du jour. It was invasive surgery, as selected bits of the Globus Pallidus or Thalamus were destroyed by a heated probe. Sounds scary, but it was all they had, and it worked pretty darn well….risks aside. Michael J. Fox had a Thalamotomy in 1998, and he’s doing okay. Thankfully, it’s still possible (depending on the degree and area previously lesioned) to have DBS. That’s Deep Brain Stimulation, NOT Deep Brain (S)Incineration. Yup…just made that up.
What Neurosurgeon Prof. Benabid did was nothing short of a brilliant, slightly dangerous (well, not in comparison to what he already was doing) and totally boy-like thing to do: what happens if……..? In the 1980s, Prof. Benabid was performing ablative surgery. Now, it’s important to know that these patients were awake. As standard procedure, and before lesioning the selected target in the brain, it was vital that the surgeon ‘check’ that the correct area was chosen. Like in pretty much everything else, all humans are different….including their brains. So the surgeon relied on the patient for feedback: electrodes set to physiological frequencies on the end of a probe introduced a small current of electrical stimulus. If the patient felt or reacted in a favourable way (i.e. the tremor lessoned or ceased), he’d know he’d hit the right spot. Once the target had been identified, the ablative burn would begin. However, I guess Prof. Benabid had had enough of singeing brains by then, so he decided….just for the helluva it (I like to think) just to mess about with those harmless electrical pulses. He found out, at the right frequency and pulse, this small electrical current would achieve the same effect as ablative without permanent damage.
The added bonus is that, these days, when the cure comes, it can all come out – no harm done.
All the other guys I mentioned above? Their primary interest might have been in the brain, but not in necessarily in Parkinson’s. And, without all those ablative surgeries on patients that were awake, we wouldn’t be where we are today. Can’t even BEGIN to list those that have contributed and sweated for PD! But I thank them all. Actually, I’m also relying on the notion that at least some of them are, um…..dead? So they don’t come a-calling. Because there’s so many more!
Right, nearly done. The brain, as we all know, is a complicated bit of bio-machinery. One wise and long-retired Neurologist told me, ‘the mysteries of the brain are the problem in itself. As soon as you think you’ve discovered the answer, so many other questions come into being that the original question is often rendered insignificant’. Humph.
It’s all very well to either stimulate or lesion parts of the brain, but to have any degree of success at it you have to pick your target exactly. Prof. Benabid & Team first used stimulation DBS in the Thalamus in 1987, then in 1993 they did the same thing, but in the subthalamic nucleus (STN). But they could not have done this without the intensive and global work being done on many levels.
One such discovery was a compound called MPTP. A big oopsy, found completely arbitrarily in 1983, when some drug-addicts started turning up at hospitals with over-night profound Parkinsonian symptoms. This compound was extremely difficult to quantify; partly because the patients themselves insisted it was heroine. As it turns out much later, it’s basically everywhere in moderation (including our own bodies). Back to the story. Authorities and scientists were also stymied because it produced no reaction in mice or rats, so they had to try primates. So they took off to their islands, cracked open their barrel full of monkeys (sorry – love hurts), and the science-heads hunkered down. Sadly….for everyone, MPTP had been found way earlier (1978) in a single case post-mortem: a 23 year old student from Maryland who was the only one to try his new designer-drug.
He’d intended to make MPPP, but ended up with MPTP, and that spelling mistake cost him plenty; he developed the same symptoms. He died 3 years later in a cocaine-related matter.
But the discoveries that came from being able to induce PD in primates were pivotal in the precision-placement of electrodes for optimal effect in PD patients. Now Prof. Benabid had the how, and the where. And we’re talking about a choice of something the size of a pea.
Where has the time gone….? I’m thinking back to when our boys were toddlers – one year apart and would have been exactly if they’d arrived on time! Lew (the elder) was late….I remember him saying when he was 8 or so that he didn’t want to grow up; it was much more fun being a boy. Harry shot out early – nothing stands in his way when he puts his mind to it! Big lads too; Lew’s the Gibbon – tallest, with very long arms. Harry’s the Silverback – huge and unyielding as a concrete wall. Mercifully for pretty much everyone, they’re both aware of their size and gentle as kittens.
When they were born, Pete was able to take as much time as he liked to be at home. We were Restaurateurs, so it cost us plenty, but it was so worth it! Pete was very hands-on with all things baby-related – thrilled at every moment of their little lives! I was relegated to lactating incubator…but, he was their devoted, doting DAD J It was a blast! Remembering them then as toddlers, I recall having them in ‘harnesses’ to try and contain them in direction, lift, yaw, drag and angle. One would take off one way – other ‘tother! The trick was trying to prevent them face-planting in their eagerness to take off after anything that took their fancy.
Pete’s sort of the same; since I’ve known him, every time we entered an empty elevator; he would immediately throw himself to the floor….the idea being he had to be up and normal just in time for the doors to re-open. Even dressed to the nines, he’d do it! The challenge itself was not unreasonable; we’re all drawn to the lowest point of gravity at times. But it was funny!
One of his more up-to date Parkinson’s symptoms is Festination. He festinates; has a festinating gait. If he doesn’t stop and think about his upcoming momentum, he runs the risk of tripping himself up as his movement increases in rapidity. Rather like a big kid, he just ‘takes off’….that’s where I’d like a harness, instead of trying to slow him by grabbing his jacket. We DO laugh about this; me chasing him as he starts to barrel off! He sees the correlation between himself and toddlers!
A renowned Neurologist who specialized in PD was later diagnosed with Parkinson’s himself. He was due to give a speech about gait – waiting in the wings, this guy was pumped! On cue, he dashed up the stairs and promptly fell over…in front of his audience. His opening line was ‘…and that’s why you should never think of anything but moving when you walk!’
Pete’s long since given up his shenanigans in elevators…unless there’s something else he can do while he’s down there 😉
September 15, 2015
Now that I’m doing pro-bono work for a Parkinson’s non-profit outfit in Las Vegas, I am starting short post about living with Parkinson’s. I might not always stick to a 500-word count, just because I do for their emag:)
I say that because PwP and PwP SD (that’ll be ‘Slave-Drivers’…ya know the rest) are all oddballs. It’s not the ‘downside’ of Parkinson’s; quite the reverse! No matter if we are the detained or the detainee, it’s Parkinson’s that rules the roast…oops, roost. It’s a baffling, befuddling, ungainly and just plain greedy affliction that leaves us so often depleted enough to miraculously roll back up that hill and LAUGH! Laugh so hard, we can control out tears (we call it schlapping– great word!).
Me and my sister would suffer this by-product always at the most unnerving and exhausting circumstances. I’m one and a half years her junior, and was helping her move house in a hurry. Me: stocky pit-bull. She: stick-insect with a seriously over-blown sense of her physical acumen. Both bordering on our best-before date. This house, she’d raised her kids in…and she was a HOARDER and a half! I even dug a hole for her cat (very much alive then) – sounds wrong, but the British are so anal about animals and vetting for re-homing involved criminal back-ground, sodium pentothal, lie detector tests, signing your life away because those in control will visit said adoptee and give it stuffed, fluffy rodents to play with while under ‘observation’, but this mog was NOT getting there in time – no takers, and she was moving to a flat (apartment) which does not take animals – few do, and you have to make a pact with Beelzebub and sign your kidneys away. Thus, it was reasonable to assume, at the 11th hour, Fluffy was not going to make it. He did…just, and I had to fill the bloody hole in.
I digress, sorry! Last couple of days, and with the meter ticking on exchange, she wanted to take a ‘couple’ of wee plants. I groaned noisily, but can never refuse her anything. So we end up schlepping several TREES in tubs probably weighing in at 300+lb. per – UP the steep garden to the waiting car…that’s when schlepping sets in – fits of side-busting giggles turn into uncontrollable roaring – followed by a quick pantie-change. Yup, we both bore children! A job that would’ve taken a couple of blokes 10 minutes, took us half a day, but worth every moment!!
What on earth was I saying? Ah, yes…something about Parkinson’s! Over the coming months, I intend to offer you my ‘take’ on living with PD.
Ooh, yeah. Got that in the bag! Wish I hadn’t filled that bleedin’ hole now, because if I could get my hands ‘round this plague, I’d kill it stone dead J
I have 52 words left, so I’m going to leave you in suspenders about that. Just a hint: 6’3’’ 230lb festinating bloke who should really be harnessed. That’d be Shaky Pete – Puff Daddy – Butterball – my husband. 17 words left, oops…13. Have to tell you something about – dash; forgot to count the titl….
‘Keep it simple, stupid!’…that’s my motto. Don’t get me wrong – not for you, but for ME, because it takes ages to understand, much less absorb, much lesstranslate! Being two storeys short of a high-rise presents serious challenges and lots of ‘duh’ moments, but I think I got it?
So for all you peeps out there that wanna know the hoo-ha about alpha-synuclein….here it is.
Let’s gets a couple of abbreviations etc. out of the way first:
a-SYN = Alpha-Synucein
PD = Parkinson’s
‘Aggregates’ are basically debris or detritus; organic matter produced by the decomposition of organisms.
Alpha-Synuclein is a sticky protein found throughout the body, but the motherlode is in the brain, where, if it all goes smoothly, it’s part of a process that leads to the release of dopamine – that wonderful stuff that makes us feel good, controls movement and autonomic systems, all with the agility of a synchronized swimmer.
Ideally, the a-SYN protein appears to function in the loading of vesicles (see pic below) – small spherical bits of membrane that carry neurotransmitter molecules – to the pre-synaptic end of a neuron, which bumps into the business end of another neuron, allowing for the neurotransmitters in the vesicles to be released into the synapse.
So it’s rather like loading a musket rifle or cannon; exact amount of powder -> shove a lead ball down the barrel -> specific grade of powder into the pan before closing the frizzen = success!
Do it wrong = ka-boom…
and maybe no head….
Where was I? Sorry – this is the pic I meant:
The top is the presynaptic neuron; the bottom, postsynaptic. They are both separate neurons in this chain-gang.
Okay. So what’s the big dealeo? Glad you asked.
In Parkinson’s and specific other neurodegenerative diseases, it’s been found that a-SYN proteins are ‘misfolding’, creating clumps or aggregates. Like almost all proteins, after a-SYN is synthesized by the cellular machinery (i.e. ribosomes – they build long chains of amino acids, one at a time – exhausting!), it is supposed to fold in a certain way; the entire function of a-SYN is dependent on proper folding. So, if the folding goes wrong, then the protein fails to function – simple! The fall-out of this wayward behaviour is aggregation – crap everywhere that gum-up the works. These aggregates are commonly known as Lewy bodies. Lewy bodies are present in a variant of Alzheimer’s disease also known as Lewy body dementia, another disease known as multiple system atrophy or ‘neurodegenerative’, and, of course, Parkinson’s disease.
Now, that’s the simple version….without reference to other players like Tau and A-Beta proteins, or DNA strands, mitochondria, enzymes, or the many genes already identified as biomarkers for the disease. This will have to do to discuss the major issue, which is:
What to do about these errant proteins?
here’s a couple of ideas……or maybe this?
Nah….bit sorta, er…permanent?
And just to make this all more complicated, these deviant, delinquent aggregates are not the only bits of junk that scupper any healthy a-SYN from assisting with neurotransmitter release from neurons. There’s the possibility of too much a-syn being produced as well, and that excess of a-SYN would lead totoxicity. Either way, its accumulation is a big problem in 90 – 95% of Parkinson’s patients. The other 5% are those that have direct-inherited disease (genetically passed down from parent to child) and for them, a-SYN is not considered a big player.
Oh, did I mention; this toxicity is specific to neurons that release the neurotransmitter dopamine, and the aggregation may even be protective in other types of neurons….huh…okay..that makes no sense. I think what I’m saying here is that, on a cellular and molecular level, waste product is normal and dealt with in an orderly fashion. Not so with these insufferable misbehaving a-SYN, simply because there’s too much junk. And another thing we have to throw into the mix;oxygenation.
Say hello to ‘free-radicals’, which is what the dopamine neuron-specific toxicity appears to involve: the formation of reactive oxygen, which can evolve during the breakdown of excess dopamine that builds up when it cannot be released from the neuron.
Okay, okay, but at a cellular level, it’s poison. It’s caustic and can cause the iron in our cells to basically go rusty. Yuck.
A similarly unexpected finding; one that’s got everybody hot and bothered, generating a great deal of interest, is that misfolded a-SYN are also found in our gut and olfactory (that’s ‘nose’ to you and me) system, which means they traveland propagate, infecting good a-SYN with their abhorrent behaviour. To demonstrate the significance of that, Patrik Brundin, MD, in 1988 received his PhD on intracerebral transplantation in PD. By 1992, he was part of a team that started neural transplants in PD patients. That worked well…for a wee time. But, and here’s the important bit, in 2008, they found Lewy bodies (these misfolded a-synuclein clusters) in the significantly younger (chronologically) grafts. Well, that opened up a whole NEW can o’ worms. Could it be that this was Prion disease – neurodegenerative disorders causing inflammation and infection? Or maybe sub-structural faulty amino-acids could be a factor in a-SYN clumping? The body naturally deals with waste products – even on a cellular level, but these aggregates are simply too numerous.
More importantly, it meant that, at some point during their travels, they were passing on a mutation to their buddies….and that in turn suggested that at some stage in this process, they were also vulnerable. It was then a completely reasonable idea to think that bacteria might be involved here. What kills bacteria?Antibodies, for one.
That has led to some remarkable potential offerings in the Pharmaceutical field like NeuroPhage Technologies’ drug candidate NPT001 (bacteriophage M13), which are in the process of filing with the FDA; the first human trials expected in 2016. But, it requires administration to the brain directly, as crossing the blood-brain barrier (BBB) is an SOB. Most antibodies are too large to get in.
Another offering is ICBI Technologies, and their SMART molecule (Specific Molecular Architecture for Recognition and Therapy Molecule), which has proven demonstration of BBB uptake in mice. Parkinson’s Resource Organization have been working closely with this Pharma since 2012. They keep us posted by way of ‘the Road to the Cure’ http://www.parkinsonsresource.org/featured-posts/august-2015-update-on-the-road-to-the-cure/ That’ll be the latest, but they keep a running update from back to 2012.
Pharmaceutical companies like Neuropore Therapies, are teaming up with Belgian drugmaker UCB, and QR Pharma, Inc. have something in the pipeline too.
Here’s where I may have to kneel on grits (good ol’ Southern hospitality!):
All the above have, at some stage or another have had significant grants from peeps like the MJFox Foundation. Humph…..
And I shoved poor MJ’s mug on three of my posts. Why? Because I wanted all the Orgs to work together under the umbrella of, say the World Parkinson’s Coalition. Interestingly, it was Jo Rosen, Founder & President of Parkinson’s Resource Organization, CA who schooled me on why all the PD groups, Assocs., Foundations & Institutes do NOT work well together…has a lot to do withagendas. Bleedin’ politicking!! Apologies, Michael J Fox! What did you ever do to attract my beady eye? Well…you got Parkinson’s for a start, and then went on to establish the biggest PD non-profit globally. And earnestly, those posts were for awareness, not target-practise. I think MJ himself would see that!
But Jo Rosen – one feisty and savvy warrior told me “If ICBI had $5M today it could be at human clinical trials in 18 to 24 months…I’ve already spent 3.5 years on this, Lisa. Imagine had people opened their minds and their pocket books 3.5 years ago, we would have been where we are still looking to be…’’ Now, $5million is a drop in the ocean in the scheme of things; chump-change for some.
Anyway…finally, after 30 years of basically the same old drug – Levadopa, we might well be saved by somebody takin’ out the trash!
With sincere thanks to Dr. Anuj Mankad, Molecular and Medical Geneticist, who so patiently picked up after I’d thrown all my toys outta the pram – thanks Doc, for the schooling!
Like a dog circling to settle, I find the greatest calm and solace to begin is through the written word. I love language. Studied Latin at school. So just for a little levity before we begin, here’s a favourite phrase: Si hoc signum legere potes, operis boni in rebus Latinus alacribus et fructuosis potiri potes! Which translates to : If you can read this sign, you can get a good job in the fast-paced, high-paying world of Latin!
Now, I’m set. Shall we begin?
Πάσχω is the Ancient Greek origins of ‘I suffer, endure, feel, yearn’. Basically, it’s what the word ‘Passion’ means…to suffer for. So if I say ‘I’m passionate about chocolate’, it should really translate to ‘I like chocolate so much, and it’s making me fat!’
Passion is what being a carer is all about. Although we all suffer to a greater or lesser extent, not one of us ASK to suffer. It’s just part of life…that journey for which we seemingly have little say in. Let’s face it; there is no fathoming it – life is unfair! No one understands that more than a Carer.
πάθος means pathos; sympathy, empathy, sorrow for someone else’s suffering. So to be a carer, you’re naturally (or have had to learn to be) passionate and empathic. Not by any means easy. Particularly when you’ve reached breaking point and you feel you have nothing left to give.
We acknowledge the Beasts that you fight; both in the disease and suffering of the one you care for, and the one that has snuck in the back door of your mind. That particular Beast in you – the one you never met before? It’s a liar; it whispers bitter, hateful betrayals, portrayals and damning portends. Kill it before it sets root…my advice anyhoo, because all it is really is exhaustion.
So today, we applaud you. Because we know your work has not been cut out for you, you did not ask for this, you don’t really want this job, you are feeling unappreciated and underpaid, yet…you keep going. Why? In most cases it’s really simple – you have made a choice, and that choice is love. Agape love; ἀγάπη = to love unconditionally. Enough with the Ancient Greeks; I suspect they aren’t listening anyway. Oh….and by the way? There’s nothing in the manual about being perfect or even good at this task, so you can cut yourself some slack there!
Do you realize how rare and precious that makes you? When you’re body is spent, your mind is alternating between over-revving or fog, your soul exhausted and you feel like you can’t continue? Stop. Take a moment to be KIND to YOU, because you need to do that…treat yourself with the respect and love that you would and do treat others to. Your loved one or ‘charge’ will not suffer one iota more for you taking that minute. I’m a Christian, and I fully admit that the last stopping place for me in the maelstrom is the Lord – what’s with that? But, for me ‘be still and know that I am God’ is just shortened in those times to my mantra…be still. Be quiet. Breathe…..
Laughter: another great outlet for the weary. Me and my PD husband have been together for 37 years. Raised two fine boys that are now married and living on a different continent. We are blessed! But no relationship of any duration is free of strife, as you well know. He’s now into his 16th year with this particular alien invasion of Parkinson’s, and as you know, it’s a little different for everyone. For him, sleep is the most gruelling business, and that will have a knock-on effect in daytime hours. Being that he’s got maybe 10 inches and 100lb. on me, manoeuvring my dude can be…difficult. Yet, even in the midst of his Bradykinesia, we’ll find ourselves shlapplakking (at least that’s what his Dutch parents used to call it – uncontrollable laughter) at the sublime and ridiculous ministering of me trying to help him get his clothes on or off a chair. He also had profound RBD (REM Behavioural Disorder), which means he can get up, brush his teeth, eat, etc. all while he’s asleep – fun! Because he left the gas hob on once…and buttered a ball of string to eat it, I tend to follow him around in these spells; talking to him gently like he was a child. My first phrase would be ‘look at me’ – trying to gauge if he’s really awake or asleep. That mile-long bleary stare tells me he’s asleep. ‘Hey hon…it’s 2am. Do you know that?’ I’d ask. ‘Yup…’ he’d say, ‘time for coffee!’ he’d add with great gusto, before taking off in festinations – a gait that just increases in speed until I catch him or he hits something (or someone…eek!). I’d try to coax him back to bed. Getting him in and out of the car? A comedy of errors! We laugh when we can; we cry when it’s just too much.
Don’t get me wrong; it’s a serious business, caring for someone with a degenerative disease. Personally, what kills me is when my dude’s going through one of his PLMD (Periodic Limb Movement Disorder) spells that occur about once or twice a month. This’ll last a few days, and every minute of the night can be sheer hell to watch, much less have. We’ve tried everything, to no avail. To see him in the throes of violent agony which culminate in massive leg-kicks that radiates from his back like a whip-lash every 6 or so seconds, is like watching someone tasered over and over again. He can’t sleep, can’t stop, and the only momentary relief is when I can get him up on his feet for a few tightly-held seconds of rest. It’s the only thing that can control them; his own body weight. But it’s a precarious perch that I can only keep up for a while. And then I will pray amidst this rage of my mind, body and soul, at this ruinous, savage road of Parkinson’s. And I’ll say to myself and Him upstairs, ‘come on! You wouldn’t let adog suffer so….’ So we stand, holding on for dear life, and I stand, also convicted of my own ‘take him or break him’ bargaining; this is my beloved that I’ve offered up in an ill-fitting sacrifice during those moments of despair. Once the spell is spent by utter exhaustion, a void of shame and nothingness leaves me numb. It’s brutal, undermining and deeply unsettling.
We also know how this journey will end, cure aside. Honestly? It terrifies me to the point that I swear could kill me; particularly when M J Fox correctly stated ‘in the end..it’s all about stillness…’ That’s when the dopamine finally runs out. And I witnessed a taste when my man’s DBS machine (the IPG) was turned off for ONE SECOND only, Expecting him to go into uncontrollable flailing, I was kneeling on the floor with my body bracing his legs and my arms holding down his arms. His response was profoundly alarming; his entire body turned to stone. I kept talking loudly to him, didn’t want him to know the panic I was feeling, ‘Pete…look at me, look at me’! His eyes were half-lidded and glazed over – I was checking his pupils to see if he’d had some massive stroke. The upshot? He finally came ‘round 30+ seconds later. He had heard me – just utterly unable to respond. Turns out his sub-group is akinesia, so I finally truly understood what MJF meant. So now? We just don’t entertain the idea; it serves no purpose but to make life harder. You know that old adage, ‘don’t sweat the small stuff…’? This is it, for both you and me…it might be huge and terrifying as the beastie in the wardrobe, but it’s stillnot in our control. So, drop it. Because that puppy’ll drain you dry.
You don’t have to put a ‘brave-face’ on all the time – that’s far too much to ask. Yes, and there will be some people who will not get it. They’ll brazenly (in a naïve but sweet intent) gravitate towards your caree – not you! Sometimes, that hurts like the Dickens, but hell – claim the moment for yourself! It’s actually even more annoying when they ignore your caree, even when YOU want to!
So for me, caring is baby-steps. One foot in front of the other, then the other foot…and don’t look at what you cannot control. Yes it’s tough and hard and gruelling at times. And you have to learn when you need a break. Don’t look back, don’t look forward, just look up! That’s plenty enough.
Bless you for what you do..and do..and continue to do. You are LOVED…even when you don’t think so.
Oh, and don’t forget to hydrate!