Lisa Vanderburg

3 years ago · 3 min. reading time · visibility 0 ·

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Killin' it...trying to!


I'm mad. Mad as all hell at Parkinson's Disease; the adversary that has usurped my husband and become the most powerful, lively and needy entity in what is now our marriage ménage à trois. It was never welcomed and yet it won't leave. It never sleeps and its appetite for cruelty both tortuous and indignant is insatiable. To me, this ‘thing’ that invades my husband is a parasitic twin of utter indifference as it seeks to suck the life out of my exhausted husband. So immense a reach has this nemesis that I have to stand back and marvel on occasion at just the sheer magnitude of chaos it wreaks!


Here’s where I pause, for we have been BLESSED; in 2012 my hubby has DBS a la Boston Scientific’s Vercise, with a walloping 25-year+ battery in the tiny IPG. Knowing what I know now - as mad as I am now, without that (specifically, without that BSC technology) life would be completely unbearable now. Have a look: 

So far as ‘treatments’ or tools go, DBS is the best. Levodopa or L-Dopa is the necessary evil (it’s also the only real pharma of note since Surgeon & Apothecary (Chemist to you and I) James Parkinson’s discovery over 200 years ago - that’s how , and DBS takes over enough of the motor-function control to allow for a huge reduction in L-Dopa intake; that means no Dyskinesia: that is the side effect of essentially increased L-Dopa because it has to cross the BBB - could go on forever, but I won’t. 

The most fantabulous thing in the US to have happened in the past 30 years or so is that the kingpin has had a reckoning for their less than stellar reputation.  


[ have found the paradox, that if
"you love until it hurts, there can
be no more hurt, only more love.

bis

Some others were....a riot to us...if you knew hieroglyphics. Even the patient's Neurologists took over the programming (not that they always knew universal symbols better) on the ground of: A. the patient is or may be an idiot. B. the doctor makes more money. A mere 5 years ago [in the US], it was a 3-year replaceable battery. I'm sure they may have made it to 4 ot 5, but hey: 80% of the initial implantation...? Lobbyists to corporate knew a good thing when they saw if and man....did they fight. For the patients of DBS in America, they had no hope. Finding a good programmer, much less getting their insurance to pay was neigh-on impossible. They wrote to me in fear that their names would get out and they'd be blacklisted.


Boston Scientific's Vercise has recently gained FDA approval. From what I knew then, they were forced to build an 8-year renewable battery; something they never had a need for, to 'even' out the market. Dunno if it's still the case....


This is a mere 13 seconds of dyskinesia: https://youtu.be/b5J87SzbQeM. I would watch my hubby roil off his chair, off his bed….stopped by the DBS. Even after 6 years, he’s pretty much at half his L-Dopa intake...the only pharmaceutics that has any meaningful help in PD, and that means very little dyskinesia. Just so we’re clear: it’s toxic. It has to be mixed with other compounds so it doesn’t kill us right away. Fun!


But, in the last end of 20 years, Pete’s PD has advanced to include his autonomic systems. Those are the ones that run pretty much everything outside a mere slap in the face; balls to breathing.


Admittedly, before L-Dopa and before DBS, a Parkinson’s sufferer would usually starve or choke to death or succumb to pneumonia by his stage. Now, they suffer for so much longer - yippee! No amount of anticipation, preparation or readiness on my ever-vigilant part will ever be enough to get the jump on this terror. Lords knows I try. But one thing I DO know; when my hubby breathes his last, it will be a relief. His tormentor will die with him and Pete’ll be happy.

You wouldn't let your beloved pet suffer so…..


By nature, I am a writer (of sorts). As a medical brat, I've been writing about this disease and more for many years; not as a 'advocate' ...as an ACTIVIST. I don't do pretty and I don’t do the cure-all crap like  exercise/CoQ10/snake-oil/positive-thinking etc. Been there and spent the money. But I do pester my cerebral and intellectual betters - Neuroscience to R&D to Innovation - to make myself accountable for truth. Being a dragon does not give me the right to be wrong!

ef894c78.jpgHere's where secretive innovation and collaboration separate.... we have to brain-storm to get what has already been achieved by SBMT & dudes like Dr. Babak to open our minds to work the problem of neurodegenerative. Here's Doc Babak & Stephen Hawkin:

https://vimeo.com/123350212


Because even as a complimentary-medical-brat, I DO trust science; specifically COLLABORATIVE science.  My dad kept 12 good men in his closet...that doesn’t work even if you knew what I was talking about! Tsk...such is life….
Delve into my volatile world of morbidity, morality, ethics, life and death. Oh, and Parkinson's disease....coming your way real soon if we don't stop it.

Dr. Babak Kateb and his fellas; I've been enthralled by for years. We've had many a conversation (and I'm most grateful for his TIME!). 

Founding Chairman of the Board of SBMT and Brain Mapping Foundation, Scientific Director of SBMT and Brain Mapping Foundation, Director of National Center for Nano-Bio-Electronics, Director of Brain Technology and Innovation Park (BTIP), CEO of Smart Microscopy Inc. And one whole helluva lot more.

If we want a chance, both myself and Dr. Babak want COLLABORATION; not the normal secretiveness indicative of patents, innovation and R&D.

For a worthy openness: http://www.worldbrainmapping.org/ and https://worldbrainmappingtv.com/

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Comments

Jerry Fletcher

3 years ago #23

Lisa, He is lucky to have you at his side. Blessings upon you.

Debasish Majumder

3 years ago #22

you are truly a woman of substance Lisa Vanderburg! my best regards to you madam. enjoyed your buzz and shared. thank you for the buzz.

Louise Smith

3 years ago #21

#20
He needs you to be multi-talented and most of all SMART ! You're excellent at it ! He's LUCKY !

Lisa Vanderburg

3 years ago #20

#19
The irony of it, as I'm sure you know Louise Smith, is that I end up HAVING to be the dragon; for his own protection. Playing 'good cop, bad cop' to align with a myriad of symptoms (and conflicting emotions in all concerned) is not an enviable position, but if a door needs closing, it has to be my decision and responsibility - not a role I would wish on anybody. Thank God love is a choice, not just a feeling..... #18 ah-ha...finally! So I've made a bastardized version, eh? Great! The more letters, the less cahnce anyone will understand me :) Thanks Gert Scholtz!

Louise Smith

3 years ago #19

#17
"I don't want him subjected to further indignities of strangers as there's much wrong with his brain but nothing amiss with his MIND. We wait....." Now that's TRUE LOVE

Gert Scholtz

3 years ago #18

#9
Lisa Vanderburg In Afrikaans we have a similar expression, derived from Dutch: When someone had him or herself "slapgelag" it also means they laughed uncontrollably. The expression is used in a good sense to convey how much someone find an incident or joke funny. Have a "lekker" Sunday!

Lisa Vanderburg

3 years ago #17

#16
Such a love, Louise Smith! Since our last move in October the 'carers-in-crisis' team have set up after I sliced though a few tendons on my hand the night before while washing-up - Pyrex...who knew?? But we're not ready for them yet; in place in case I get hit by a flying toilet seat or whatever. It's just been a prolonged rough patch and I don't want him subjected to further indignities of strangers as there's much wrong with his brain but nothing amiss with his MIND. We wait.....

Louise Smith

3 years ago #16

#12
It's natural to feel like you do Lisa. I hope you have enough support ?

Louise Smith

3 years ago #15

Gary Sharpe

#12
May be RANT is the word, but expressing anger while still servicing others is great my dear Lisa Vanderburg

Lisa Vanderburg

3 years ago #13

Thanks for the share, Javier \ud83d\udc1d beBee - really appreciate it!

Lisa Vanderburg

3 years ago #12

#6
Ah-ha, my dear Ali \ud83d\udc1d Anani, Brand Ambassador @beBee - I think the word you're looking for is RANT. Something I excel at. We ALL have our burdens, as I know you know. Sometimes I wonder at what I have 'made' from Pete's Parkinson's? Fiscally, nothing alas (good!), but I continue to question: https://www.linkedin.com/pulse/20140915142018-134569387-walking-the-fine-line-altruistic-or-self-serving/ I KNOW you'd appreciate that as we walk this life. You say so much with so little yet I can read your depth!

Lisa Vanderburg

3 years ago #11

#4
#5 haha...there's nothing quite like Latin; it goes where no toga's gone before :) Thanks dude!

Lisa Vanderburg

3 years ago #10

#3
I have a tendency to wait for the hardest moment to post, buzz, blog..whatever. It's like a release. And when I get a comment from you Pascal Derrien, I am relieved that I didn't overdo it. Thank you, my friend!

Lisa Vanderburg

3 years ago #9

#2
Thank you lovely man, Gert Scholtz....sterkte is a beautiful word! Like everything else cyclical (think; growth-spurts), Pete's in a prolonged tortuous time, but it will pass as he falls down that ladder a bit more. Hey! His family are Dutch. They used this term which I will badly spell in a second: 'Schlapplakker'. To denote 'uncontrollable or contagious laughter'. I've bandied it about shamelessly for years, and it's very apt to describe the moment when the wave of awfulness crests. But, do you know it? Thanks dude....I'm trying to stick to task :)

Lisa Vanderburg

3 years ago #8

#1
Part 2: CityVP \ud83d\udc1d Manjit. Yes...it's that awful hopeless/helplessness that takes all parties down! I'm using YOUR comment to get on my soapbox. I truly don't think you'll mind, my big-hearted friend! Death and dying only share ONE letter - the D. In my mind, that stands for dignity, decision and deference. I've had a long time to think about this, so there's things other folks need to know. 1. In the US or NOW, in the UK, a palliative (Dying) person will be given antibiotics to prevent 'old man's death.' The kindest and gentlest way to go. So if anyone is thinking about living will' or 'advanced directives', consider if you want to suffer longer (to rally, fall, rally, fall..). What about your loved-ones? 2. Think about getting them done by the age 50 - 60. Punch it into google with your location, that'll tell you all the W's you need. 3. TELL (lovingly, but firmly) your loved ones. Think about body/organ/tissue donations & make a decision! The last thing you wanna do is ADD to the problem at a crucial time. 5. Look into and/or do a Power of Attorney.

Lisa Vanderburg

3 years ago #7

#1
Apologies for my delay in response CityVP \ud83d\udc1d Manjit. Trying to find the best placement for his corpse (not he's not....yes he does...and I'm just trying to get our affairs in order!) has taken me ages. Not done yet! But we are firm believers in advanced directives (mine are so tight, I really should be going any minute...now). But I sincerely thank you Manjit, for taking the time and sheer openness in your response. Your uncle's experience is clearly mirrored in your words, and I can truly relate to the pain, anguish and stunning ambivalence of those involved. I like to say that my hubby Pete PRIMARY disease is 'unbridled optimism' but he has his moments. God forbid our roles were swapped (I wish!) because I really would make his life hell! You raise an issue that needs further word-age.....

Dear Lisa Vanderburg- to read about a sad experience with such writing vitality is a tribute to your unfailing endurance.

Ken Boddie

3 years ago #5

I should have stated below “Nil Parkinsoras carborundum” or “dont let that shit of a disease grind you down”.

Ken Boddie

3 years ago #4

Hey, Lisa, I assume that a lady of your obvious talents is fluent in pseudo-Latin, in which case “nil ilegitimus carborundum” or “don’t let the bastards grind you down”!!!!!!!!!!

Pascal Derrien

3 years ago #3

This was a light entertaining read despite a deep and profound topic, the hope and strength from you both transpire thru the words and article.....I bet you both are a team and a force to reckon with :-)

Gert Scholtz

3 years ago #2

Lisa Vanderburg In Afrikaans we have a short saying to another: "'sterkte" - which means I wish you strength during a trying time. So to you Lisa - sterkte!

CityVP Manjit

3 years ago #1

Having seen my mom's brother ravaged by Parkinson's, I fully know what an awful condition this is. When my uncle finally died of pneumonia, the saddest part was that he was not in England when he passed, but in a US hospital that left his family with a massive medical bill. He openly refused to open his mouth while his frantic son tried so hard to keep him alive. It is a death which was definitely a relief for my uncle, because he was a proud guy and would soil his bed when in the rare occasions he had enough mobility to remove his adult diaper. Nor did he take kindly to having an outside person taking him to the toilet, but then I also saw what havoc it caused in the life of my aunt, who eventually had to be admitted to a hospital with a minor heart-attack. When I was England, I was physically spent after just one day in trying to look after my uncle. During his healthy years he was a total rebel and fiercely independent and when the moment came he passed quickly, and here is the most unfortunate part - he knew that the pneumonia symptoms were literally drowning him. As he held his mouth firmly shut, he was taking the decision to end things. In his case he had openly spoken about assisted suicide and that he did not want to live when the Parkinson's deprived him of the last vestiges of his independence. I don't blame any son for wanting to hold on to their father, but I also knew my uncle took the only option he could and regretfully no one should be left to die the most painful way imaginable. His death reminded me of the scene from Million Dollar Baby in the scene where she tries to bite off her own tongue having been paralyzed in a boxing fight. At the time the depiction that a human being would go to that length to exit an existence was shocking. I never thought I would see that situation play out in my own family. I do hope that someone finds a miracle solution to Parkinsons, it only gets worse in the long run.

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