Over the last couple of years as Anthony’s Parkinson’s got worse I would be amazed at how, when anyone visited, he would suddenly transform from being slumped and silent into a walking, talking marvel. As soon as the visitors left, he would revert back to being unable to walk etc. which annoyed me intensely because it was as if everyone else was getting the ‘same old Anthony’ and Son and I were getting the ‘leftovers’. I also found it frustrating because visitors would inevitably say to me, “Oh he’s so much better than I though he’d be.” In other words I felt I was being perceived as a liar or, at least, an exaggerator.
Assuming it was some sort of adrenaline rush, I once asked one of Anthony’s doctors about this (oh yes and Anthony would always ‘perform’ very well for them too). This doctor told me the famous story of a nursing home fire where the Parkinson’s patients, all wheelchair bound, were trapped on the third floor. As this was being reported by nursing staff to firefighters, someone noticed that all of these patients were standing outside the building, staring up at the fire. They had all run down the stairs and escaped! The doctor said that this phenomenon had been termed ‘paradoxical kinesis’, where the faulty brain suddenly does a kind of U-turn.
I’m no scientist so I don’t know, but, with Anthony, it seems to be triggered by a kind of fear – almost like a performance panic that works in his favour. With people he sees a lot of and is comfortable with it doesn’t happen, but with people he hasn’t seen for awhile, or for any professionals (doctors who visit him in the nursing lodge, for instance), he rises to the occasion with great skill and ease.
When he was living here at home, he would sleep for hours after a bout of paradoxical kinesis and yet our visitors would go home thinking he was fine and dandy. Mmmmm!
jmgoyder 
I think I understand some of this, but my question is if they can do this some of the time why not all of the time? I deal with this sometimes, but lately, it hasn’t shown up at all….
Same with Anthony – it’s not happening as much anymore.
I can see how that would be irritating! Does it still happen?
Yes but not as much.
I always feel weird hitting the like button because of course I don’t like what’s happening to your family…but you provide such amazing insight into this awful disease. I’m sending good thoughts your way.
Thank you Ruth. I appreciate this very much. Julie
I’ve heard of this behaviour happening a lot. A fried of mine cried and said that her husband (dying of a brain tumour) treated her so badly. He spoke to her roughly and said whatever was on his mind, and yet he was so polite with people who were not close family. I said, “Because he can. He can get rid of his frustrations and be himself and he knows you’ll always be there. You won’t tell him off and never come back if he’s mean and gruff.” Now whether it’s fair or not, I think this is often how it is. People feel they can let all their anger out and their closest partners will put up with it. And they usually do. But that doesn’t make it right and it’s hurtful, just the same.
I see the sense in all you say here and I am learning not to be hurt – thank you so much Anneli. Is your friend okay now?
After her husband died of brain cancer, she got colon cancer and died a few years later. Just bad luck all around. But she did have some happy years (too brief) in between.
That is awful and I don’t know what to say about that sort of bad luck – so terrible.
This is true and very weird. Dad would recall names and faces of those he hadn’t seen in years. He would carry on a great conversation with them, and after they left, he didn’t remember a thing. So strange… It does seem that paradoxical kinesis relates to fight-or-flight or a surge in brain activity.
Maybe you should study this subject for another PhD!
By the way, I ordered The Woman Who Changed Her Brain from the library today. I should get it next week sometime. Maybe I can get it read after Summer I finals and before Summer II session starts.
I don’t really know a lot about it (paradoxical kinesis) other than what that Perth doctor told me so who knows?
Hope you enjoy that book. I couldn’t understand the scientific bits but it really made me think and think and think and wonder – I like books that do that!
Over the last couple of years as Anthony’s Parkinson’s got worse I would be amazed at how, when anyone visited, he would suddenly transform from being slumped and silent into a walking, talking marvel. As soon as the visitors left, he would revert back to being unable to walk etc. which annoyed me intensely because it was as if everyone else was getting the ‘same old Anthony’ and Son and I were getting the ‘leftovers’. I also found it frustrating because visitors
would inevitably say to me, “Oh he’s so much better than I though he’d be.” In other words I felt I was being perceived as a liar or, at least, an exaggerator.
This is exactly to the letter, what Al does when there is company here. exactly. it makes me so mad because when they leave he is back to crying and whining and depression
Well at least there is now a name for this weird phenomenon – I think it is still an area of research – dunno. All I know, just like you know, it is real and it happens. Thanks Terry!
I can get this… even with me, I used to be able to generate enough hormonal rush in certain situations to fake it. I had to do it some today actually (service for my friend who passed)… I could only do it for so long though before the pain overcame me. Very interesting that their is a medical explanation… Wish it could have holding power… xo
How amazing that you were able to do this for your friend today, Robyn, but I think, with you it is inner strength as well.
I, too, wish the paradoxical kinesis thing had holding power – if only! Juliexxxx
I’ve never heard of that before, but I guess, really, we all rise to the occasion when company is coming or we want to impress someone. It must sap a lot of Anthony’s energy, though.
Once, he slept nearly 20 hours after one such visit – it was alarming!
so interesting! i think there is also something about parkinson’s patients climbing challenging paths, like rock climbing, something like that. your theory is good about a kind of fear that works in anthony’s favor.
thank you for your kind comment on brokenlightphotography.
Brokenlightphotography is one of my favourite blogs, despite the pain of many of the posts, but I am never sure if I am supposed to contact the actual writers so this is great Anna! Juliexx
I would do the same thing with my panic. Suck it up in front of people and then let all my craziness out in front of my family. I think it is a deep sense of not wanting to look stupid or different from society. Funny how it is so deep-seated.
Thanks for this, Artful, because it gives me a bit more insight. J
I’ve never heard of the condition. It is pretty remarkable that the brain would do a U-turn. I can understand your frustration too. I would feel the same way.
Yeah – visitors are like the best china and I’m like the chipped tea-cup – ha! I even told Ants that today and he just said, “so what’s the matter with that?” arggggggghhhhh!
I see they can’t fully explain it yet, Julia: I guess it makes sense that a survival instinct kicks in in response to fear. But to see that Anthony responds more actively when friends arrive: that is amazing. Fascinating post.
Ants and I chatted about it today and had a laugh about it – amazing!
This is extraordinary, truly. I have never heard anything like it. But what the doctor told was a true story, right?
If my Daniel was in this position, I would feel so exactly as you – that the visitors, thanks to this bizarre reflex, got the best of him – and not even HE got the best of him because he couldn’t pull it off on his own. This is truly bizarre, but I believe, deeply, it needs investigation, as in “what triggered” to make things normal again.
Your posts are interesting to me because they are something I have not experienced, yet it can happen just as easily, to me/my son. I really appreciate the honesty in your posts, your openness. I thank you so much for giving me this insight which truly, I cannot imagine where else I could get such down to earth insight.
N’n.
Yes it is a true story and I have been trying to find its original source. Anthony is now 76 so his age makes it very hard for him to combat Parkinson’s ordinarily (unless someone arrives and he rises to party – it is bizarre how it happens). I think Ming (18-yr old son – around Daniel’s age I guess more or less) is a bit scared he will inherit all of Anthony’s diseases but he hasn’t yet admitted this fear to me – I just sense it.
I really appreciate you, your blog and your comment here – thank you so much!
I believe you
Phew!
I understand this completely Julie.
When I was working and barely existing outside working hours due to chronic pain & fatigue, I would rise to the occasion on social events with the help of a couple of mugs of strong black coffee. But see me later that night, or next day, and I would be totally exhausted and suffer from Post Exertional Malaise (or PEM as it is known to us Chronic illness sufferers).
Over time I gradually went downhill in my health due to this constant effort beyond my energy & pain limits. Due to lack of restful sleep, my adrenal glands never got replenished and gradually different bodily functions started failing.
Now I’m not working, I don’t have to ‘rise to the occasion’ and don’t care what people say, so I don’t go out or socialise 99% of the time and am much better overall on a daily basis. I have the time and energy to enjoy my regular weekly photography excursions and pace my day. I rarely go beyond my ‘energy envelope’.
I got fed up with family, friends and work colleagues not believing my degree of debility (just as your friends may not believe what you say about Anthony’s debility.
I believe exactly what you say about Anthony and KNOW exactly how he manages to rise to the occasion. Maybe its an adrenaline surge or something, also.
By the way, daily vitamin B12 injections (& now sub-lingual vitamin B12 as I can’t afford daily injections) has made an enormous difference. I don’t have abnormal vitamin B12 & Folate levels but heard of the beneficial effects of supplementation of this vitamin and can attest to its efficacy. I wonder if it has any effect on Parkinsons and other similar diseases. I suppose one would have to take it early on in the disease cycle, before serious deterioration occurs.
Oh how much I know what it must be like for you when people think you are okay when you are definitely NOT okay. Well, I don’t know for myself, but I know for Ants. Everything you say above is so enlightening but also heartbreaking (for you I mean). I think you are amazing the way you cope with chronic illness, Victoria – you are truly amazing!
Re the vitamins – yeah, been there, done that. Nothing works now that Ants is 76 – alas. J
Happily, I am much improved since I quit my job, Julie.
(that’s been one of my successful treatments – quitting my job).
I really get this!
I have 5 days left of my tenure then I am free (and broke!)
How very odd, and distressing for you.
I told Anthony about this today and he just said ‘what a load of crap’ – ha – gotta laugh!
wonder if, on a much smaller scale, but perhaps the same basic principal….the white coat syndrome? when one is ill and has to see a physician…much of the time, we find the closer to the visit the better we feel? not in actuality of course, but it’s like our fear pushes us beyond our reserve because we don’t want to be seen as sick? i don’t know…just rings a bell of truth. i believe you, 100%, and sympathize with the frustration of it all.
Yes, that makes a lot of sense too. Thank you Rhonda!
Oh dear.. kind of like a kid who is great for the babysitter and the teacher and a monster at home!! You must get so frustrated.. I loved the fire story though.. that was pretty funny. i guess you can be consoled by the fact that his subconscious is not afraid when he is with you and your son.. c
Apparently that fire story is quite a famous one but in googling it all I could find were heavy, academic papers –
I’ve heard healthcare providers say that the difference in responses (in general) may be due to “familiarity”. People you see more often, like daily, get a more subdued response because of the familiarity and frequent contact. The people they don’t see very often get a more excited response because of the “unfamiliarity.”
That makes a lot of sense!
That is certainly an odd phenomenon. Interesting story about the fire. It’s too bad that science can’t figure out a way to trigger that to work all of the time without exhausting the patient.
I think there is ongoing research into it.
I wonder if ‘Paradoxical kinesis’ is triggered in part by a chemical reaction from fear? Fear of the fire? Fear of embarrassment? Fear of losing friends or visitors?
That’s what I think too but not sure what the researchers say.