Has anyone experienced what I call “awakenings?” - a unexplained, out of the blue, one to two day, virtual disappearance of all symptoms, tremor and gait? Then goes right back to usual symptoms. My sister-in-law has these after 15 years of PD, Videos of the difference are mindd-boggling Her doctors can’t explain it nor do they seems to be interested in exploring it. Thanks!
Awakenings: Has anyone experienced what I... - Cure Parkinson's
Awakenings
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garyd11
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wow that’s great. Congratulations. She must be doing something right please elaborate. I’ve had this happen for no more than 20 minutes half an hour at the most.
But not so great because months can go by between incidents and it turns out to be a cruel tease. If only we knew what was going on at these moments that is different from her regular PD symptoms, we may be able to unlock something beneficial for others as well. It does show that after all these years of PD, her body has the ability to spring back to normal, so it’s hard to buy the dying neuron theory.
Yes it's the same for me!... sometimes I get 20 or 40 minutes of total symptom relief. It might be it might happen once a month or twice in 3 months. -- Peter
Thanks Petroa. Do you have any idea what causes these in your case?
No, I'm not sure.
Does your sister exercise regularly or meditate? Is there any difference in her medications, food intake, and other factors prior to the time of the remission. Maybe she could keep a notebook to see if it can be figured out since the doctors seem disinterested.
John Coleman, Bianca Molle, John Pepper examples of addressing symptoms
buzzsprout.com/2042385/1300...
Awesome 👏🏽 thank you.
Does not exercise regularly but should. Absolutely no change in what you mentioned. These awakenings are so far apart that keeping a diary is just not practical. They come in the middle of her “normal”routine and just out of the blue. She doesn’t even feel like she as Parkinson’s at these moments. We have a feeling that it has something to do with the neuro pathways suddenly being unblocked but can’t explain how or why. Thanks for your reply. Appreciate any other thoughts.
A correction to my post. My sister-in-law has had PD for 23 years not 15!
which probably makes the good days a little more puzzling- I don't really have much in the way of any new thoughts however I have seen the difference that a good vs a bad night's sleep can make
Doesn't seem to correlate with sleep, but usually if Dawn has to use the bathroom in the middle of the night, she will have to shuffle there. About a week ago, she just got up from bed, walked to the bathroom and back, with no symptoms. Next day, back to the usual "grind."
I hope someone can figure this out
Bolt_Upright is going to help me find researchers to email.
Definitely sleep quality for me. My husband says he can tell just by looking at my face in the morning what kind of day it will be. On a good day I feel disease free. Seven years in.
Thanks Bandmember. How often do you experience these good days? Do they last the entire day?
It's usually when I've taken a Tramadol sleeping pill, so not very often because I'm scared of addiction. No more than once a week. Yes, it lasts all day. On other days even when I feel I've slept pretty well I feel awful. I try to limit the sleeping pill nights to those before a full-on following day.
Does she take meds on those days and the usual doses?How much meds is she taking?
So she goes one or two days without symptoms? Does she stop medication during this spell? You might want to e-mail some researchers about this. This sounds special. (I can help you figure out how to find researchers to e-mail. Their e-mails show up in studies).
Dear Bolt_Upright. Yes, she goes without symptoms and even without the internal feeling of having Parkinson's, which is why I call them "awakenings." She just returns to virtually normal, unfortunately short-lived. But I would love to take you up on your offer to find some researcher who might be interested in what could be the key to help others as well. I would like to share some of the contrasting videos I have as well. It is an eye-opener. Thank you so much for your interest in help me with this. -Gary
Dear Chartist,
No it isn't related to that, though a good thought. They can be months apart, and then just like that . . . virtually normal. I was just telling Boscoejean that if Dawn has to use the bathroom in the middle of the night, she will have to shuffle there. About a week ago, she just got up from bed, walked to the bathroom and back, with no symptoms. Thing is, she knew internally before making that move out of bed, that she would feel normal. Next day, back to the usual "grind."
my hwp has times like this.
They do seem to come ‘out of the blue’ but, as I am a psychotherapist, I have put it down to ‘attitude’.
If he is not pre-occupied with and symptoms and fear of falling, he can almost forget and enjoys life.
As Garyd11 says below, it maybe about neuropathways, but not getting unblocked, more like different ones being activated. Maybe more serotonin channels. Who knows?
It’s cruel though, I do liken it to the film Awakenings
But it does sometimes happen.
Thanks Lorraine. Her attitude is consistent so can’t logically pin it on that but we think as you do, that it does have to do with neuropathways and your theory does make sense. Just wish there was some diagnostic to test the theory.
There is a phenomenon called paradoxical kinesia, where PWP experience temporary improvement in their motor symptoms in response to certain triggers, such as stressful situations, emergencies, and even external sensory stimulation like music or auditory cues. This phenomenon is not limited to extreme circumstances like earthquakes or fires; it can also occur in less stressful situations.
Paradoxical kinesia has been documented in anecdotal reports, including Oliver Sacks' book "Awakenings," (!) where he described how familiar music can induce temporary awakenings and improve motor function in individuals with severe akinesia.
Although the exact mechanisms underlying paradoxical kinesia are not fully understood, several hypotheses have been proposed. One hypothesis suggests that the motor function remains intact in people with Parkinson's, but they struggle to access it without external sensory stimulation. Another hypothesis suggests that surviving dopaminergic neurons in the basal ganglia or alternative neural pathways, such as cerebellar circuits, may become activated to improve motor function.
Understanding the mechanisms and neural circuitry involved in paradoxical kinesia is still an ongoing area of research. However, it highlights the potential therapeutic value of external sensory stimulation, such as music or auditory cues, in managing freezing of gait and akinesia in PD patients.
For more detailed information, you can refer to the study titled "Paradoxical kinesia noticed in patients with Parkinson's disease" published a year ago in the journal Reviews in the Neurosciences
degruyter.com/document/doi/...
If necessary, you can perhaps approach the authors. Their address details are listed at the end.
Garyd11 thanks for sharing this special experience!
I visited a friend who has a climbing gym several times and watched. One day I asked Brian if I could try it. He got me shoes and coached me, 5-6 friends watched and were cheering me on and taking pictures. I was exhilarated. For the next 18-24 hours I felt terrific with normal gait and loss of stiffness.
My theory? I had an adrenal-dopamine rush that freed me from PD symptoms. I climbed again several weeks later - no cheers, no pics, no rush, it was hard and felt dangerous, so it wasn't the activity itself. Probably doesn't apply in the case you describe, but that's my experience...
wall climbing
I got exactly that skiing (under protest, I might add--I was really worried I would fall). But once I got up on the mountain with my husband and daughter and an instructor shouting encouragement, it was amazing, like I forgot I had PD completely.
I put it down to muscle memory. I was so busy thinking about the snow and the turns and my form and what-have-you I forgot to think about anything else and some hidden past part of me just took over. It was weird.
Hi SuuSuu. Does seem to make sense in your case With my sister-in-law there was no external stimulus. She just got up and was “normal.” Thanks!
maybe it’s something like the bravado teenagers feel when they do crazy things with seemingly no fear or thought of the consequences when friends are cheering them on whereas if by themselves they would be cautious and unable to do it.
When this happens has she been engrossed in an absorbing activity that gets her into a flow state? Or focussed on solving a problem or planning something so she forgets her situation?
I do get these divine days regularly. Once in 3 months.
I also have peculiar changes in levodopa requirements on different days. Most days need total 500mg per 24 hours but can vary from 300mg to 750mg per day (in small doses of Sinemet in divided doses).
I also have excellent examples of paradoxical hyperkinesia (when I can run for a bus); but I am a bit cautious after developing hip joint capsulitis which is exquisitely painful in some movements. Now that it is slowly improving I find it is still there.
Likewise being engrossed in activity at work with a difficult patient that I can make a breakthrough or a very positive patient with good news can trigger a rush that lasts for a day.
I think the article on paradoxical hyperkinesia suggests that some brain cells that do not usually produce dopamine can fire up on demand for short periods of time.
The things I do is:
I walk a lot (by incorporatining that in a commute to work) and soldier up and down stairs when I have the energy to (about 12000 steps of walking most days ; if I am off and start shuffling I consciously lengthen my stride.
I have always liked new experiences and I try to learn something new. Life long habit.
I still take on the challenge of urban areas like going to a restaurant /certain venues in London where access is not excellent.
I figured that after 6 decades of living I could figure out a solution.
Take some risks when I am with those friends who can cope with a reasonable mishap.
Am less embarrassed t display my disability in public.
Yoga and transcendental meditation are hit and miss but I breathe better (previously I hypoventilated ); not very anxious by nature but had bouts of moderate anxiety when bradykinesia set in.
I also try to get off the floor with no support evry morning and night when I am off dopamine. Have succeeded every time.
I take very few supplements
Vitamin D (brown skinned in sun poor Britain) for last
Fish oils recently for antiinflamatory value (recent)
Vitamin B complex 2 times a week ; has some B12 in small amounts (last 5 years)
Thiamine 100 mg 5 times a week (cant tolerate more than that); last 3 years
Lots of fruit
Mixed diet (not vegetarian but eat lots of vegetables)
Reasonably generous carbs (mostly wholegrain ) 3 times a day , full fat milk in coffee / tea twice a day and butter (not everyday); full fat yogurt
Raw high quality olive oil 20 mls poured over food (last 1 year); courtsey MIND diet
Some coconut oil (my ancestors cooked most of their food in coconut oil)
I still have sugar in some form too.
For me thats all I can manage to do.
Dear Pearlette,
Thank you for your detailed reply! I commend you for taking all these steps (literally
to conquer your circumstances and would encourage everyone who is able to exercise, exercise, exercise while that window is open to you. Supplement regimen and control of yoit gut also seems to play an important role for many.
I had a huge lessening of symptoms when I was taking a break from HDT B1 therapy due to an overdose. It lasted weeks and returned to status quo. I had started drinking Aloe Vera juice at the same time so I'm still drinking it. Wonder if there's a GI connection to the significant lessening (not curing) my symptoms.
Hi Zyzgy. A lot of experts seems to agree regarding the gut-brain connection. Thanks!
Yes, I had experienced such a moment (lasting almost 4 days) with my husband. He always fluctuates a bit, but his normal is very stooped (90degrees), severe freezing, needs help to get up from chair (often even his lift chair) and uses a 4 wheeled walker. February last year he spent 9 days in hospital with fecal impaction and unable to void urine. Physio assessed him and felt it was too hard to exercise him, so he was left in bed or bedside chair.
After 9 days of complete inactivity, I wasn't sure whether he'd be even able to do anything anymore. So imagine how stunned we were to suddenly look out the window and see him out on the street taking in the garbage bins, no walker in sight and his posture nearly upright. When we asked him, he shrugged his shoulders and said that he also turned the pool pump on and winded back the daisy blanket. Over the next 4 days he slowly got worse bit by bit, after 4 days we saw physio, he was still better than before hospital, but went down from there.
I was looking into so many things. Did they give him his medication at regular times? No, because I remembered they often arrived very late with an apology. We thought it may be lots of sleep (night and large chunks of day) so the brain got rested. I sometimes even doubt the supplements we're taking at home or something in the environment. Food is the other variable of course as is the clearing of the fecal impaction. Anyway, we could not replicate this amazing recovery, even with long sleep and daytime naps and constipation control. But like you, it drives me crazy knowing that it would be possible to get to near normal if only we found the way back. Happy to share with any researcher and give access to the hospital file.
The greatest gift is you sharing this info and people replying with their own stories, because it may open another door.
I have been diagnosed with PD for 15 years and had DBS about 2 years ago. Prior to DBS, I had occasionally experienced better coordination and improved general function usually in the mornings (aka morning benefit). So I started to keep track of certain supplements taken the night before. After collecting about 2 years of data. I found out that this phenomenon usually occurs on Friday. On Thursday nights we would go to trivia at our local bar and I would enjoy a few beers (IPAs). The hop content of IPAs is more concentrated than regular average beer. So I did some research on IPAs and found out that hops are full of phytoestrogens...which are neuroprotective (and taste good!). I experimenting with various brands, I found "LaGunitas Maximus beer to be most effective. Does your sister-in-law drink beer? If not, then disregard this paragraph.
Or maybe it was the fun and intellectual stimulation associated with your outing?
So do you.drink this beer regularly now with similar improvement?
H Dean,
How fascinating! My sister-in-law doesn’t normally drink beer but wouldn’t be opposed to it, I don’t think. Certainly worth a try. I believe there are also hops supplements. Have you tried that as well? Would you say in your case that usually 3 beers does the trick? Might also be weight related regarding beer dosage.
Yes at least three 12 oz bottles. I've tried chewing Simcoe hops and concentrating the beer by boiling it down to a viscus syrup, but the taste was so bitter, I could not stomach it.
If your sister is not a beer-drinker, it must not be the beer that is giving her the good days. I have often wondered why some dementia patients can all of a sudden become lucid for a few mintes and speak intelligently before reverting back to the demential state. This has happened to the father of a co-worker. I believe all the memory files are still there, but the processor is messed up.
It wasn't a complete disappearance of my symptoms but more like a 90% improvement for only one day. I woke up feeling good and decided not to take any supplements or medication that day. This happened 3 years ago on my birthday and there were no other instances of this before or after that day.
Weird and frustrating, right?
I am fairly recently diagnosed, but I have experienced fleeting hours of "recovery" and one symptom-free episode that lasted almost 2 days.
I was officially diagnosed in November 2023, have had symptoms since 2020 or so. I have not taken any of the regular PD meds. I do mess around with B1 (it's hard to find the correct dose) and I take magnesium threonate. I recently finished 12 weeks in the Inhibikase tyrosine kinase inhibitor trial. I'm in the washout period now. I will find out later this week if I took the drug--Risvodetinib (IkT-148009)--or a placebo.
For at least 6 months, I have been jogging every other day, for about 30 minutes at a time. I walk another 30 minutes or more. On the other days, I walk at least an hour. I try to do my PT exercises every day. I am often very miserable while I am jogging, but I shuffle along anyhow. After I am home and showered, about 2 hours after my "run" I usually feel very good. About 50% of the time, a few hours after a run, I am free of tremor and fatigue for a couple of hours. I don't get that good feeling from just walking; I seem to need to really get the heart rate up for a sustained period of time. I've tried to run back to back days, but I just get too tired/ haven't had the energy or will power to do more.
About a month ago, I felt exceptionally good after a very unremarkable jogging session. I felt a lot of motivation, enthusiasm, focus. I was suddenly very interested in socializing. I had no tremor, no gait problems. I woke up the next day and started my physical therapy exercises. I could do them with so much ease--no stiffness, no strain. At some point the next day though, the tremor and cramping started up again. I have since had brief "highs" a couple hours after vigorous exercise, but I haven't had a lovely, symptom-free day again.
Hello. 13 years in and this has happened to me on several occasions. At a point where I was supposed to be off, I was on without taking any meds. It lasted from half a day on one occasion, to just going on to two days on my best occassion.
It made me wonder at the time if this was some kind of divine intervention...a miracle of some kind...until the symptoms returned and snapped me back to reality.
At the times that they occurred, the only thing that I could think of that i was doing differently, was experimenting with the reduction of my dosage of c/l, which at the time I was thinking was too high. I did end up with an overall lower dosage after those episodes.
I completely empathize with your experience. My sister-in-law had the same thoughts as you the first time around. Thanks for sharing your experience. It is so frustrating.
for me this has fleetingly happened when traveling... when I am high on the scenery or just really satisfied on some level. And sometimes momentarily I hear myself thinking "oh I forgot to have pd"! But it's getting more and more fleeting 2 years after diagnosis. And I definitely believe it has to do with how I feel. The story about the climbing wall is a great demonstration because it's the support of others that makes it so great. Also, used to feel this a bit when going to a really good dance class. But now I have frozen shoulder and can't dance sadly. I don't take any meds but have been taking mucuna almost every day for a few weeks because of the shoulder and the rigidity and cramping. I do know that trauma is not what happens to you, but when you FEEL alone with what happens. And I am pretty certain that being repeatedly traumatized leads to all sorts of dis ease.
Dear Gomelgo,
Sorry to hear about the shoulder keeping you from dancing but try to keep some form of exercise going. Macuna is a great idea. My sister-in-law does the same with pure macuna powder which keeps the Sinemet dosage low. Dosing can be tricky though. How do you dose it?
was she on any meds at these times?
Yes, she does take Sinemet, but we still can't explain this miraculous recovery for a day or two in the midst of her daily medication routine. We've tried to look at every angle, and our instinct is that it's not something external, i.e., sleep, medication, supplements, etc. but internal as in a blockage or re-firing of some neuropathways. I wish there was some kind of diagnostic that can be performed on the day she has the awakenings to see if there is any difference to the same diagnostic on a routine day. But what that diagnostic would be, I am at a loss and can't seem to find a doctor interested enough in exploring.
Last May I had a wonderful day at a friend's house where I tasted some mulberries from their massive tree. I had never eaten mulberries before. The next day I felt totally normal. Couldn't figure out why but I was ecstatic. Then I thought maybe it was the mulberries. I'm waiting for another month or so to indulge again. More than likely it was the stimulation versus the berries. It was wonderful for the one day duration.
Research indicate that mulberry fruit has neuroprotective effects in in vitro and in vivo PD models, and that it indeed may be useful in preventing or treating PD. 👍
this thread is wonderful and informative and I really wish garyd11 would respond to the questions about meds, please.
Thanks for all the wonderful replies and suggestions. I will try to reply to each that require and answer. I should have also mentioned that my sister-in-law has had two DBS surgeries; one long ago for her left side and one recently to control a seizure-like tremor on the right. They both have worked well to control the tremor, but gait is still a big problem, interfering greatly with her quality of life and requiring either scooter or wheelchair. However, she had these awakenings long after the first DBS, and also after the second DBS, so that doesn't seem to have anything to do with it.
My sister-in-law’s first DBS was 16 years ago.
Great thread. Has your sister-in-law noticed any foods or supplements that makes her symptoms worse. I have noticed that foods high in oxalic acid ( e.g. spinach) or monosodium glutamate (e.g. Takis chips or Accent flavor enhancer) makes my symptoms worse for about a week.
Actually all the excitement of this topic has given me a symptom free period for almost 7 hours without any L dopa ( I variably dose when the first quiver of my toes is felt prior to the curling) .
I have only had 2 doses of 25/12.5 Sinemet today. Thats my lowest dose since Day 2 f starting treatment in 2017 . I have also walked for 4 hours today and could not stop smiling.
Yday I had 650 mg ! and miserable .
Wonderful Pearlette. Keep those good thoughts going. The mind is very powerful!
pearlette . What you experienced, is likely a function of the body self regulating the plasma level of the Levodopa and compensating for the imbalances. This happens more frequently during the first 5 to 7 years after going on Levodopa. However, there comes a time when that stops working and the correct dosage for the optimal plasma level for Levodopa is simply a matter of luck. Unfortunately, there is no mechanism available for precise dosing of Levodopa and it is just a matter of estimation by the doctor.
You probably got lucky and yes, you need to enjoy it when it happens. Other factors like food and exercise can also affect the experience through the day and if you find a repeatable pattern, you might be able to replicate the result.
In my case, I have a guaranteed way to live on cloud 9 for an entire day and it is entirely within my control. I feel like a normal person and people can't tell that I have the disease. It works so well that I feel guilty not applying every single day. What is it?
It is fasting. Total abstinence from food and going on a water only diet for the entire day. It is painful in a different kind of way, but I find myself choosing between hunger and the misery of Parkinson's. But, it is an option that I like to have for important occasions.
Oh absolutely. I know it is temporary. I even have various permutations and combinations of symptoms that remit for several weeks which is even more fun.
I was diagnosed 8 years ago but a geriatrician colleague of mine recognised my Parkinsonism atleast 2 years before that.
Historically I have had leg and finger dystonia as a child but did not realise that it was unusual so I did not mention it to an adult.
I have had intermittent balance and gait symptoms as a medical student and then they disappeared after I was 30 . I still managed a bit of freestyle rock climbing and hiking.
Since my 40s I have had Achilles tendon dystonia which I wrote off as plantar fascia and practically supported the heel orthotics industry.
After developing writers cramp like symptoms at 51 , I continued to function as ER type of doctor performing highly skilled interventions until I developed a full blown shoulder capsulitis at 54 . I finally saw a neurologist when I ground to a halt a year later. He was the first doctor I saw since I was 30 (apart from minor elbow surgery when I chipped a bone)
My DAT scan showed no activity in both my putamen and globus pallidus areas in 2017. Technically that means there is no receptor activity.
So my theory I have had the disease from childhood. I also have rather stunning paradoxical hyperkinesia. Makes for some interesting looks from security staff in shopping malls who see me almost wooden and shuffling and then run to rescue a breakable item that some one had knocked over.
There are some suggestions that other areas of the brain where dopamine can be made on demand. I personally think that the speed of response in paradoxical hyperkinesia makes that implausible. That is more likely to be some sort of reflex stimulation of a receptor site.
There are many other mechanisms that could be postulated like up and down regulation of receptors which constantly takes place in the body naturally.
I don't really dwell on my disease or health (except in the last few months when a hip joint capsulitis linked to dystonia caused tremendous pain) . I am too busy living life but have a pragmatic strategy which includes arranging assisted dying arrangements, affordable continuing care in India where I will retire to while adopting any reasonable lifestyle change that shows a tangible response.
I have not tolerated fasting well in the past. It makes me edgy and dyskinesia prone. It als destroys my fragile sleep pattern. But I do have an eating pattern with 6 to 8 hour gaps between meals.
It just nice sarig good news too.
garyd11 . I think that when everything seems perfect and when we Parkinson's patients experience a period of bliss, it is most likely due to the plasma concentration of the Levodopa being at the right level.
Right now, there is no testing and measurement mechanism or protocols in place to measure Levodopa under dosing or over dosing like for example, diabetes.
It may simply mean that the Levodopa levels are in the optimum range. I am convinced that most of the problems that we face are due to the medication and not the disease.
There are too many variables in consider in order to reach a particular conclusion.
I applaud your efforts to solve the many mysterious ways of the disease.
Thanks, pdpatient. I will confer with my brother regarding this. But I think my sister-in-law has had "awakenings" both on and off medication. But I will check. It's not just the symptoms that go away, it's that internal feeling of PD that also disappears, like she no longer has the disease.
I have experienced that. Lasts 1-2 days. It’s glorious and I have not noticed a pattern. Diagnosed a year ago but of course looking back three years there were signs.
I had similar experience for 4 days in a row. In April 2020, I woke up in the morning feeling full of energy and didn't bother to take any medication or supplements. On the day 3, at night I woke up from horrible noise in my ears, and it increased the following night. On the day 5, I woke up tired and rigid and had to take my usual pills again. Interesting fact, during that month, there were "5G" network upgrade works going on in my part of London...
5Gwakening? Or 5Gachening?
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