Lisa is a self-confessed activist for all things Parkinson’s. Pete, her husband and person with Parkinson’s (PwP), had deep brain stimulation (DBS) in 2012 which gave her time to research & write. She enjoys chomping on those corps, lobbies and snake-oil salesmen that seek to harm, rob or maim any PwP. All her work is pro-bono and she occasionally gets followed by unscrupulous entities. She currently does some work for Spotlight YOPD.
The following answers were written by Lisa Vanderburg. Click below for an audio version recorded on August 6th, 2018, or here to download it.
(Disclaimer from the editor: The following contains a pretty vivid account of what Parkinson’s disease can be like at an advanced stage, this is not for everybody. Also, bear in mind that it is just one story, no two people will ever experience this disease the same. That said, there are overlaps as well as some universal truths in each that resonate. I also believe it is useful to know how bad things can get, gives a little ass-kick of motivation to do all you can today to stave-off decline and/or advance research, care, or new therapies, while serving as a reminder to make time to live life.)
Could you recap the journey you and your husband have been on?
I met Pete in 1977 when I was 17. Pete had that wanderlust; he’d just settled down to start a business after 3-years of working his way round the world. We got married in 1982, sons born one year apart – 84/5. Pete was a great father, delighted in his sons as much as I.
We spent 35 years as restaurateurs, opening several places in the UK, then a restaurant/nightclub in Spain when our boys were babes. Moved back to the UK when they were 4 & 3, opened a couple more, then decided we wanted to get back somewhere warm and spacious. The place we ended up was hand-picked by Pete very scientifically, with a blindfold, finger and map (which actually landed us in the Gulf of Mexico – close enough). So we moved to Florida on Jan 1st 1992 & set up shop. This would be the last move; for the kids education, come hell or high-water, I was sure not gonna move country again if I could help it! Pete was always… expansive in his ambitions to ‘show us the world’….which really meant school, Tae kwon do (2nd degree black belt) then college for the boys. For me? crankin’ up the heat; Pete’s was the front of house, I was in back – the kitchen. Pete’s always on the monies side; I’m more blood, guts and gore. We did well, all things considered, as NPR would say. Got a nice house, cars, health insurance of sorts, worked hellacious hours – the American dream, no?
By the time our boys were 15 & 16 respectively (year 2000), Pete started suffering shoulder & arm stiffness which he put down to his hail-mary passes playing with the lads. My brother (an excellent Chiropractor) and family were with us during that time – he treated Pete, but as time passed, he reckoned (like we did) that something else was going on. Within a few months Pete developed an intermittent tremor, so we’d already guessed PD by the time of his dx in 2001. He was then 49.
As I like to say in presentations: ‘Pete’s primary disease is unbridled optimism. Served him well in our 35 years of very high-risk business, I expect. Drove me batty…rose-tinted glasses do not pick out the proverbial comin’ your way! He handled the endless stress with seemingly no ill-effects – unlike me. He was a pro-active father to our two sons..the very best thing we ever did.
Pete’s well-educated, confident, intelligent, spent 3 years before I met him working his way ‘round the world; first alone, then with his brother, so a natural traveler. He always had a wickedly droll sense of humor, coupled with his outrageous confidence that in some ways was sheer luck (he always got the green lights; I got the red, so he thought me a ‘pessimist – fair enough), he was shamelessly self-assured and completely comfortable in his own skin.
So, how do you take a guy like this and crush him?
Give him Parkinson’s…..
Works like a charm.’
When the dx came (a little over a year after his first symptoms), it was devastating; everything in his personality and character was painfully altered, no matter how hard he fought. After three years of trying alternative means* , whilst keeping up work and family, he finally relented to levapoda.
*Let me stop a moment and talk about snake-oil – something I tend to bang on about.
In that 1st year or so after dx, you are very vulnerable and rather desperate, methinks. Of course we had suspected PD before, but now we dived into the internet with gusto; him with his optimistic slant, me with my pessimistic, or realistic (I like to think) one. I’m a medical brat, albeit alternative, so I rolled some stuff Pete was looking at through my side of the family as well, where the general consensus was not too good. Outside of the hundreds of dollars of curcumin, COQ10 etc, we made dietary changes, but I’d basically always cooked for him so he didn’t eat processed foods much, nor drink sodas.
But, no matter how I tried, we, (me & the boys) just watched and waited; which was pretty much all we could do. Emotionally (although he’d try to hide it), the Pete we knew was slowly dissolving as he tried to re-define himself time & time again. It was brutal. Physically, the effects on his working hours took its toll and he would do his utmost to hide his condition. That’s probably the norm for male Alpha-types in PD, but the frustration and sheer exhaustion meant he gradually withdrew from our tightly-knit family unit. And the sheer oddities: raw and profound dermatitis, the inability to get his body to behave and worse – the door to insomnia opened – led to REM sleep disorder. Very soon, any quality time: messing about with boys, walks, outings – they all ground to a halt. I’m sure Pete’s increasing exhaustion exacerbated his physical symptoms, thus this perpetual loop of destruction created a void between him and us, and there wasn’t a damn thing we could do about it!
Pete had been looking at several areas with some ‘reasonable’ science behind it. It was a battle….how the hell do you say no in my position? He wanted to go to Philly – a PhD there had a ‘promising theory’ that PD was a ‘docking’ problem. The neurotransmitter receptors were clogged with long trains of trans-fatty acid, so the dopamine protein could not connect. This entailed a couple dozen glutathione pushes at a local clinic, then we went to Philly for more and phosphatidylcholine pushes 3 times a day and a ‘special’ diet. Upshot is it didn’t work, Pete was worse and we saw the despair of others – from severe autistics to neurodegenerative and ALS sufferers who didn’t make it. The whole thing probably cost 30-40k and I DIDN’T SAY NO, so Pete was very sharply smacked with the reality of end-stage neurology – he spiraled downwards, found some crazy neurologist who just kept handing him Sinemet——–
Then there was the ‘honeymoon’ effect of Sinemet (levadopa). It was almost easy to forget he had it at times – but unpredictable. While it might have helped his physical control, the mental damage had been done, and communication was still fraught with the unanswerable future. We had to give up our business around this time – a further blow to his psyche. And, yes – that should be a symptom of PD, ‘IT WILL MAKE YOU POOR’. Amid this turmoil, I found it difficult to judge what it was he couldn’t or just wouldn’t do. He spoke less as his voice was impacted by the PD & preferred to be quiet and alone.
He must have been at constant war with his emotions versus his body and it would have been hard to let anyone in. Pete was basically un-manned.
Alas I’d started to present with meningitis (my first being when I was 18, but it was viral not bacterial); twice in the 3 years prior to 2001, then a series of doozies before and after 2003: when we had to sell the biz as Pete (nor I really) could continue. Between me and Pete, our kids now at USF (but not living on campus – at home…the knock-on effect of monies spent), things were getting quite dire. I finally had a huge bout of meningitis in 2006 that meant me staying in isolation in hospital for 10 days. That bill alone was $80+ the ambulance, the ER, etc. Our ‘insurance’ had gone south since we were no longer earning and it all collapsed like a flan soon after in bankruptcy. Lost the house, cars etc. and moved with the boys into a tiny rental.
Finally moved back to England in 2008 because I had developed diabetes insipidus and was dying. ‘The long ambulance ride’, Pete called it. And our much put-upon boys? We had to leave them behind.
What would you say the state of his health is today?
Not brilliant at the moment; he’s suffered considerable spinal crushing due to his multiple parasomnias and gait problems. More recently he jammed his pelvis and that has caused excruciating pain in the last few weeks. As I’m sure you know – the less you move, the worse things get in PD, yet motion is PD’s primary ‘target’. The irony is not lost here. My brother, the chiropractor, and is treating the current crisis as am I with neuro-muscular or deep-tissue massage when he lets me anywhere near him! Pete’s now, alas, on Oramorph (morphine sulfate), but we all feel this will be temporary. Before this he was off on his rollator & down the gym a couple times a week! He has a tendency to festinate, so he’s wearing down the brakes on that lil’ thing! He’s had a few falls, tearing his rotator cuff and some face-planting, so carpet burns, but he’s been lucky so far really.
Other than that, he has the usual non-motor issues affecting all autonomic systems. In his case, swallowing and choking are probably the worst, outside of his sleep problems*. He does have some postural hypotension which is causing some dizziness, as well as bladder/bowels problems. The ‘constant’ are his sleep problems, his years of parasomnias, although Mirtazapine has calmed his RBD somewhat, but I had to move to a separate room some years back as it was safer.
* Sleep disorders such as insomnia, excessive daytime sleepiness (EDS), rapid eye movement behavior disorder (RBD), vivid dreams, talking and moving during sleep, restless legs syndrome (RLS)/periodic leg movements disorder (PLMD), sleep apnea.
What is your opinion of the care your husband has received?
Here in the UK, absolutely excellent. Of course Pete was well into his journey by the time we got here. Once you get to the Specialties of medicine – what you’d call consultants, you are in exceptional hands, and the system behind, like OT, speech therapy, physio…all kick in as needed. But I remember back in 2006 or so we decided I should go to a neurologist to try & find out what was going on with me. $500 for 20 minutes and a complete waste of time, but the glaringly rude man did manage to say, of Pete, ‘I am singularly unimpressed by your….Parkinson’s’. A hole, I would say 🙂
The 1st line of the NHS (UK’s National Health Service) are the GPs, of course (MDs to you). We cannot fault them, but they are seriously stretched; in fact they now defer to me….’you know PD better than we ever will. What do you need’? But that won’t be the case for those awaiting dx or recently dx – in both health systems, there is a general lapse period when you just hope to get lucky. I work with Spotlight YOPD and the general idea is to get young onset onto agonists first. Makes sense, but YOPD (particularly in those under say 35) is a different sorta beast. There’s too many gaps in knowledge and understanding, especially about menstrual cycles v PD meds for women.
What misconceptions do you think neurologists who haven’t lived with the disease have?
General neurologists have little to no real clue about PD unless they trip over one, so as you know, one has to find one that specializes in movement-disorders or PD itself. Even then, there are inevitable observations that remain..er…‘clinical’. And that’s always to be unless they actually move in overnight or spend 24-hours living with a PwP, which of course, they can’t. Certainly I get that this barrier is part of the package and I don’t fault them for that! Pete’s local MD neurologist – truly lovely fella, had never seen a PwP with DBS before, so he was fascinated how Pete’s motor side was working. He’s the one who I hustled to see after I found out Pete’s regular neurologist was not one at all, he’s a gerontologist…at least he got us the DBS back in 2012, but was flummoxed by what I was describing!
I did my own research by then and I concluded that because I’d never get a neurologist to hang out overnight – assuming I’d picked the right night for Pete’s cyclical crescendo – I had to get this identified. Pete’s 2 years of excruciating PLMD & just plum dangerous RBD were terrifying and exhausting. I tried to get some clips of his agony but it was impossible; the only thing that stopped the PLMD was his own considerable body-weight, so I’d get him to his feet and he’d fall asleep standing up for a couple of seconds before he crashed down again. It was horrifying. I remember thinking ‘they wouldn’t let a dog suffer like this….’ , and that I could do nothing at all. But this neurologist accepted my very detailed letters and put Pete on Mirtazapine. In those two years, Pete lost close to three inches in height. So to answer your question, I think if misconceptions are made on the part of a MD Neurologists, it will always be because they don’t have this damn disease. That said, there’s been quite a few doctors whose spouse was dx with PD and they left them…so they know something….
But…and it’s a big one. I used to volunteer in a hospice, which was a place of calm and gentle controlled-care for those dying. One of the palliative doctors told me ‘most people die lying on a gurney, in a cold corridor, waiting to be moved, in their own urine, being pummeled to death by a newbie doctor.’ That was a bit eye-popping, but it made sense, No matter which health system you enjoy, this applies pretty well across the board; it’s a numbers game. That’s when I decided I needed to define my ‘role’.
So as I see it, my duty is to see Pete out of this life with every ounce of dignity, sanctity and respect due to all of us – dying should be as equally revered as life. I saw my beloved sister out in 2015 and it was peaceful and as controlled as possible. She died at home with me. I hope to do that with Pete – it’s my job. Last thing I want is for him to be in the hospital at all, as it’s at that level of care things can go so badly wrong. That’s why I am hell-bent to stop falls and keep his body maintained as well as I can; then back off. His brain may be broke but there’s nothing wrong with Pete’s mind!
But we were lucky: I know now that Pete presents as a classic PwP…..many, many do not. I’ve heard the stories of others who remained ‘undiagnosed’ for years. This then becomes of crucial importance in those presenting with YOPD; it ties in with what we were talking about earlier..is YOPD a different sub-sut of PD?
Could you give some perspective on what it is like to observe, day after day, for years, this slow degenerative process?
Well, it’s established my dragonhood 🙂 Ask my doctor’s practice – they’re terrified of me!
I tend to view PD as a usurper. It’s has made a menage-a-trois of our marriage and it is King. We all bow before it. So naturally, I hate it. It’s like having this huge parasite sucking the life very slowly outta Pete. But I can’t kill it without killing the host, so I gotta live with it, no? So, I minister to Pete and his beast as best I can. Some people call us care-givers (carers in the UK), but that’s probably so far from reality, because we see the beast, right alongside our charge and I, for sure, feel a certain guilt at not being able to separate them…it’s natural to want to take the burden from someone you love upon yourself. This is my life as much as Pete’s – this….suffering. We didn’t choose it, but I long ago, at the beginning of this journey made a decision. I chose to love; love is a choice, not a ‘feeling’.
How well do you think you understand what your husband’s disease feels like?
I don’t. That’s the truth…I can only imagine. I am a witness. I know pain alright, but I can’t imagine losing control of your bladder for no reason, not being able to even turn over in bed, choking on your own saliva, not being able to open your eyes when they squeeze shut in dystonic blepharospasm BLE-Pharo-spasm (abnormal contraction of the eyelid muscles) for hours at a time, or not being able to react to a conversation, or being viewed as drunk or stupid. ….maybe the last part 🙂
So I end up being like the neurologist: I have a clinical view mixed into a ball of acid because I am emotionally invested in that person.
Which part of this has been more difficult, the physical decline or the psychological toll?
Both, but on the psychological side, here’s where his annoying optimism comes in a winner 🙂 If he had my mental view, things would be vastly different!
But the sacrifices have been huge.
When we left the US in 2008, I was somewhat happy to leave our boys; they had had such a terrible time of it all and I just wanted them to be free of it all – for me to watch them as Pete aged to an old man in front of our eyes broke my heart…all the playful interactions he’d always had with me and especially his sons, had long stopped. But our sons wouldn’t stay away – they came over and stayed for 2 years to help us, at great cost to themselves – God love them! They worked with Pete to establish some trading platform – Pete was always good at that sort of thing, so they we able to generate some sort of income for us before they left, which was a mercy, they had to get back to find their own lives and not live in sorrow.
That woulda put us at two years prior to DBS. The meds pay-back: Most particularly the dyskinesia, which was at its worst in the late afternoon/evening. It’s agonizing to watch someone roiling around for hours in obvious discomfort…if not pain, and utterly exhausted. Tongue-thrusting, dry-mouth and swallowing were just getting worse. Choking was becoming more and more frequent. The REM sleep thing was getting dangerous. He shouted a lot in his sleep – waking himself up, or he’d smash his hands and feet against walls, headboards etc. in the frightening violence of his dreams and always in defence of us! It’s funny how PwP dreams are always violent….never passive. He would ‘walkabout’ in his sleep. In the end, I’d follow him to either wake him fully (sounds cruel, but it’s better than smelling gas left on for a couple hours) or try and get him back to bed. I can’t imagine what it was like to be Pete, and there was nothing I could do. Eventually, meds stop working with any reliability. Nothing was stable….no floor under our feet. Pete’s isolation incurred by his symptoms and exhaustion was both lonely and hopeless, leaving us both drained. He withdrew from almost all contact with others by 2012 – we’d go sometimes to my sister’s to try and play a game, but he’d have to have a place to lie down to ‘cover his symptoms’. If he slept at all, it was torment – he couldn’t turn over – he’d fall asleep at his desk and end up face-first on the floor. Dyskinesia (painful roiling motions), Dystonia (rigidity) and Bradykinesea (inability to initiate motion) – they ruled over everything. It was a horror. Then there was the London cabbie who said he’d take me but not him – he’s drunk. Had to get Pete to hide while I persuaded another cab.
By late spring of 2012, his Gerontologist sent him to an MD Neurologist who said Pete had reached the max-out point of medications. With not much in the way of alternatives, he was offered DBS. Although he didn’t like the idea of anyone messin with his head, I persuaded him that it was already thoroughly messed with. It was pure luck and incredibly jammy to get on Boston Scientific Vercise’ trial, which meant the very best device and the most prestigious neuroscience and neurosurgical team.
There is no easy way to do the run up to DBS; it’s pure torture. Well worth it, but hell – at the time, with all the visits sans meds (to help the surgeon pick his placement du jour-to-be) – it’s not for the faint-hearted. I’ll leave it at that, no?
Come September of 2012, after the exhaustive run necessary to pinpoint the location of choice by the surgical team, we come to The Pre-op assessment, for which he stayed in the hospital overnight prior to the 4-hour MRI for the final selection. Of course, he was under general anesthetic for that and the actual op….never been so grateful in my life to see him asleep…even if it was chemically-induced! I tell you this because I arrived at the hospital that morning with Pete being off his meds for 15 hours now, to find him in an appalling state – almost indescribable and profoundly shocking to me, who thought I’d seen everything! I put my game face on, but inside, I’m cracking. The appalling facial dystonia – like extreme torticollis (twisting of the neck)– I truly thought it would ‘break’ his neck. The pain and distress to Pete….his body was completely outta control. They wheelchair him up for his tests – videoing the whole, tortuous battery of tests that should take 45 minutes, but took over two hours. That done, we sit with his nurse and she gives him double the amount of Levadopa he’s used to. The idea is, once he’s dosed, they repeat all the tests. Fair enough, but man, that’s harsh. Anyway, while the nurse is getting us a cup of tea, Pete, who has a sort of pre-death pallor and can hardly breathe, much less speak…. says ‘I’m not going make it’. This from the most stoic man I’ve ever known. I hoik his body onto a bench and basically lay on him to stop him coming off. Just a few minutes sleep – that’s what he got – seemed to make the difference between life and death.
After an agonizing wait, the day comes to switch-on his devise. Funny the things you remember: There’s a little muscle or tendon (arm/elbow) that I’d grown used to watching as it furiously pumped away the past 11 years – just stopped – like that! As the connections fired in his brain, Pete quieted, then stood up and flounced about the room….he was taller, straighter, younger and most definitely in control – it was miraculous AND mind blowing! Of course, following his little dance, he sat down and immediately falls asleep. Only this time, his face was at peace. Wow.
Do you hold out any hope that he still has a chance of recovering? If so, from where?
No, not really. Hate to say that, but coming back from advanced Parkinson’s would mean straightening his spine, restoring atrophy, and possible re-growing his hair-line?
That said, that infernal BBB (blood-brain-barrier) is the nut to crack – all 400 miles of it. Yes, we have to have our brains guarded from the outside, so why are virus allowed in?? In fact, alcohol, nicotine and caffeine get in easy too…Huh?
The other obvious problem with the BBB is translation: dopamine itself cannot cross the BBB because it’s basically too fat as a molecule. And we have to give levodopa in various compounds because taking it straight is toxic enough to kill.
So a scooped out and re-armed virus would be good… if you can stop it doing what it does best, replicate.
Induced pluripotent stem (iPS) cells is also a promising vessel – I believe scientists from Kyoto University in Japan are going to trial soon on that. They’re not derived from human embryos so that takes care of the ethical issues.
What advice do you have for those starting a similar journey today?
If you accept the role as care-giver, God bless you! It’s a hard road and with a bit of luck, you’ll have a better ride than we did – time has the knack of educating us all a little better!
Don’t beat yourself up too much – it’s okay to lose patience or snap at your beloved so long as they KNOW you’re talking to the entity that is Parkinson’s! It’s okay to raise a fist to the sky now and then, okay to cry – get it out and be done with it. There is joy to be found – me and Pete will have many moments of fun still; teasing each other mercilessly or playing games – I whoop his butt at backgammon! There’s something to be said about just being still…accepting one’s lot with grace. It’s a bit of serenity in the very busy world you ‘three’ are tripping over.
Practically, get your shi*…affairs in order! Pete’s what, 18 years in? I’ve only just got him to do his advanced directives & submit them to your doctor & the palliative lot. Get the wills done, do POA’s and TALK to you kids about your wishes! All sounds a lot like death, but it’s actually freeing you to live!
August 15th update
These past few weeks have worn me thin to breaking; has whittled Pete’s endurance to breaking point.
Remember the question about how I felt Pete’s medical-management was from the MD/Neurology side? I think our ‘system’ whereby patients at risk can be assessed by OT, PT etc., is probably on par with the US; you break at leg, you’ll be under a planned repair & maintenance for a predicted time.
It works like this here: Go to the MD (GP), get a referral to these more specific fringes; sooner or later you get contacted, your ‘needs’ are met (I’m thinking OT who supply riser/recliners, wheelchairs; then physios for recovery of ligaments & bones’ etc.).
But, once the boxes are ticked, the case is closed until you go through these steps to re-open.
This present ‘crisis’ with Pete’s spine and leg has been going on now for a month+. 90% of my time is taken up in ‘beast-management’ which has left me dangerously exhausted; I’m not thinking straight and that directly affect’s Pete, so I’m either nagging or comforting him – both poorly demonstrated.
The point of all this is the decisions that I predominantly, need to make. He’s very busy with his pain & disease burden, so it’s really up to me…this is the part I hate and dread.
The dilemma as follows:
1. Do I start the ball rolling again through our GP – I have booked an appointment for our lovely and knowledgable doctor. It’s a month from now – the earliest I can get, but I refuse others because she knows us so very well so we can brainstorm.
2. My brother’s work (the truly outstanding Chiropractor) has revealed that Pete certainly had trapped the femoral nerve – this is now freed, but will continue for some time to cause pain, numbness and weakness. Pete’s making headway, but is it going to be quick enough?
1A: If I start down the GP -> onward route, the severity of his pain may cause hospitalization until the pain is (theoretically) under control – but it’s the last place I want him to be! If it rolls over to the Palliative/Hospice side because he’s officially their patient, it’s way better in-house, but may just add further insult to his psyche, making his mind and body even more fragile?
Will it therefore class him as palliative?
2A: I know, given time, my bro’s & my work will lead to recovery in a person without advanced PD. Pete’s body however, does not recover quickly enough and all this is adding a great deal to his already-in-play autonomic systems. I worry his body will take this as a ‘norm’ and he’ll end up closer to the brink. He’s even more exhausted than I.
The upshot of having to consider what move to make next is the terrible responsibility. If I go the first route, we will get that damned light-weight wheelchair he turned down a year or so ago, he may be able to get botox for his blepharospasm that keeps him in the dark, and he may well get a well-placed steroidal injection into the right part of his hip, enabling him to move. But…at the risk of him being admitted; negating my MO.
If we wait…God know’s how long he’ll be in this position – it may be that he’s getting over the worst, but I’m not sure how much more I can survive through without getting real sick, which is what I’m bordering on – then he’d be taken anyhoo.
Basically, it sucks AND blows…I don’t know what to do really.