Guys. Levadopa has never failed me. Sometimes its slow to do it's job but ober the last few days it's not doing so well. I used to say that when I was off it felt like moving in treacle. Levadopa freed me from this but very recently has delivered me from treacle and stopped at water. The libertaing qulaity that it used to offer is slipping away seemingly. Im diagnosed 9 years ago. Any views? If its just disease progression I'll have to take it on the chin I guess like we all do. But I thought that the effectiveness was pretty constant?
Wow. Advice needed please: Guys. Levadopa... - Cure Parkinson's
Wow. Advice needed please
hi jeeves19, has your diet changed in any way?
Not really but I went veggie about 6 months ago and for the last week have been eating within a 5 hour window. Thanks for the thought.
stress could be a factor too....
Yes I’ve experienced This before but don’t feel that I’m stressed apart from this wretched issue! 😂
try high dose Glutathione injection or Tongkat Ali.
ncbi.nlm.nih.gov/pmc/articl...
are you supplementing Magnesium? There are many other methods, but what works for one may not work for the other.
From what I've read, physiologically, the body is under stress during time restricted eating. I can't do it myself; it triggers my adrenals and internal tremors - same with lower carb diets. Might be worth looking into?
That's one of the MOST interesting comments I have read and totally agree. Stress isn't given enough credit for the things that it makes go haywire in the body.
...and laughter and relaxation aren't given enough credit as healers! I was so struck at a recent PD summit by a speaker saying that at any one time, mitochondria are either in fight/ flight mode, or [relaxation] (can't remember the term used).
I think stress is hugely relevant in PD - we're generally blind to the background stress of feeling a bit driven, the sense of "need to get on with things," the stress of reading the news or even reading about Parkinson's!
I've practically forgotten how to relax and am trying to coax my nervous system out of its habitual driven state. I'm sure that's what's led my body into this desynchrony.
An interesting point. Never considered myself an Alpha male though etc. probably a bit neurotic.
A comfort, it especially helps with Beta male to break free from the negative spiral. You have to turn the tide!! You don’t necessarily have to meditate or do Qi gong. Sauna, watching a good movie, enjoying healthy food and 🍷 with nice friends, doing fun things, getting rid of that constipation, avoiding annoying people, taking a sleeping pill, exercising, do it with a smile, sing your favorite songs out loud, and you see the ☀️ again, even in 🇬🇧
I'm not a go getter, far from it - but our nervous system is always either in various degrees of fight / fight / freeze, all of which are adrenalin driven and toxic for the body, or in the wellbeing and relaxation of social engagement (ventral vagal) or deep rest and repair (one branch of dorsal vagal). The latter two states palpably feel good. It's good to get curious about how we're actually feeling, where we are at, and what can nudge it into wellbeing. I woke up yesterday plagued with internal tremors and a doom laden mind about where I'm headed, and I couldn't shift it, so I picked up my phone, opened Facebook, and played reels of the Graham Norton show Red Chair stories. Instantly I was laughing and feeling good. I stretched like a cat and triggered yawns and sighs and discharged the excess energy that was pent up in my nervous system. The tremors all subsided, I felt good, and I fell asleep again. Of course we're all different but for me, watching Graham Norton and things that evoke laughter and wellbeing is hugely helpful.
I think there is a lot in what you say. My wife is a PD sufferer and I've just past you post onto her. For myself, not a PD sufferer, I do know that if I'm feeling down, going onto YouTube and watching Bob Mortimer on Would I Lie to You (or similar) provides an instant cure.
I absolutely love Would I Lie To You! Any other recommendations?
We laughed so much at Schitt's Creek and Community.
A variation on Bob on WILTY is the two young American guys reacting to him. American humour is very different to British as you know but these guys kind of get it and are in awe of him and their reactions are very funny. Where to begin with recommendations? Blackadder obviously, Fawlty Towers, anything with Spike Milligan!!! I also agree with Ashti who replied to you below: Music is a great healer. Pink Floyd, Mark Knopfler, Ry Cooder, Alison Moyet .................... the list goes on!!!
Is that on Youtube, the two young American guys? Do you have a link? Thanks
Reetetitio: You’ve just described me to a “T”… I always need to be accomplishing something when I’m “on”, and even when I’m off at least half the time [which leads to fatigue and pride that I’m able to do things and (perhaps illusory) triumph over the will of the PD]. It’s nice to know I’m not alone, but it’s true that another result of pushing through the off stage is a certain amount of stress.
But the other thing I’ve noticed is this: if I don’t have a half decent sleep, the Levadopa wears out sooner, every time. How is your sleep, jeeves19?
My husband just learned yesterday that if he plays head banging music (from his youth) while working on reports at his desk, he can completely ignore annoying symptoms and get immersed in his work. It might be from dropping the stress of feeling annoying symptoms replaced by the relaxation/joy of hearing happy music?
Wow I love that. I'm curious to know whether the symptoms also reduce or whether he's simply better able to ignore them - which is in itself fantastic? Kind of makes sense to me that more activating energetic feel good music helps in this situation where's there's a fair amount of sympathetic nervous system arousal , plus of course all the good past memories / states it evokes.
Can't agree with you more Reetpetitio...... I am the caregiver here of my husband and I am ALWAYS in fight/flight mode - or always 24/7 on alert for the next fall, next call when he is out alone....... uff - it's not easy and I do believe - not good for the body to be always sitting in this state......
It really isn't good for the body Bunny, I agree... I wonder, what could you do for yourself to shift this, even if only a little? I think as carers we (I helped care for my mother with PD and my father) get programmed to be selfless and revolve around the other. Yet, if we burn out or get depleted or God forbid, ill ourselves, it has a terrible impact on the PWP. Maybe considering self care as being actually indirectly caring for the other, can help shift things?
And actually as we are always influenced by others nervous systems, the more you can relax or laugh or feel wellbeing, the more he can co-regulate with you and be drawn into that state. Win win! Sometimes it really is as simple as consciously choosing funny shows on TV. Sending love and care your way 🙏🏼
Can only agree with you again. You know both sides. Very hard to turn off the 'giving to my loved one' in favour of myself - ugh - but absolutely can see that I MUST do some of that to ensure my own health and fitness to be able to give him the support he absolutely needs and will need later on. I'm no good if I can't be there for him.
It is absolute also, that when I am happy and in balance, he piggy backs on that, something I have only learned in recent months. Uff - that is a heavy burden in itself in some ways..... but maybe easier to do than I think.... Win Win as you say. x Love to you too.....🐰
12 years in, I've had to space my levodopa and any meal further and further apart. I'm at 4 hours minimum now. May or may not apply to you...you will have to check yourself.
Just offering my experience.
Good luck.
levodopa is known to lose its effectiveness over time, some PwPs can take it for decades, but it's absolutely normal to increase Gradually. what is it not normal is a sudden decrease in effectiveness. It may be an indicator of the deadlier Parkinsonisms,
Hi Jeeves, you talked very visually about your constipation problem the other day 😉 Could there be no relationship with the effectiveness of your medication?
‘Failure of the stomach to empty in a timely fashion may also impair or delay the effectiveness of PD medications, especially levodopa. Levodopa is absorbed from the small intestine and cannot get to its destination if it is trapped in the stomach.´
parkinson.org/library/fact-...
A second factor that really needs to be fine is enough sleep, but you didn’t write anything about that.
Forgot to mention. You probably already take this into account, but as a vegetarian, you often need some extra nutrients. Most of them can be obtained from a good diet, but considering the importance of B12 and the potential B6 deficiency in PWP who take carbidopa or benserazide in their levodopa medication, supplementation may be necessary. At the time, this deficiency caused me that the C/L almost stopped working and the dose had to be increased all the time. Since all B vitamins complement each other, a low-dose vitamin B-complex supplement can be beneficial for this purpose. But I'm sure that has already been taken into consideration! Cheers
hi Jeeves how is your exercise intensity? I work best with drugs+solid work out ( although I’m concurrently managing active AF ) Cheers
This vid is worth a look, Jeeves. Describes her personal journey with Levodopa...but I think there are lessons that many might benefit from. A useful bit of science thrown in too.
Hi Jeeves. This paper might be related to your question. Effectiveness of Levodopa seems to be probably affected by the DBS implants. It seems like the administration of Levodopa needs to change at least after a period of time. Maybe you need to talk to your doctor about dosage adjustments.
I know Macuna is far from perfect, but British Supplements seem to be a pretty good company. Various people in their testimonials are using it for Parkinsons and swapping out a dose of meds for it, to good effect - worth a go? They also do a 2 a day version.
can they adjust your DBS? You still have it, right?
I think its part of the course. I am the same age as you. Diagnosed 7 years ago but obviously symptomatic 9 years ago (mild symptoms 20 years ago). A former colleague (geriatrician) actually pointed it out to me 9 years back.
I am susceptible to some diet changes not necessarily protein.
Feeling of fullness (there is a large collection of D2 receptors in the duodenum)
I have less predictability of going off; which is challenging enough. Would love to try rescue nasal L dopa
Also I found regular trihexphenydyl (taken for painful dystonia) rather than prn helped balance the rigidity in my legs (which gave the treacle effect)
Take 1mg about 6-8 hours apart (not more than 4 mg a say). Nottoo orried re loss of cognitive function yet as I reckon I got lucky on my original quota
(TIC arrogance !)
And still at full time work !
Are you oK on Vit b12
Lovely post and what a great name. 😊. And you’re from the U.K.! I thought ‘nobody but an American would be called Pearlette.
Thanks, but am not American or British. I am an Indian expat rather than Indian immigrant.
As for work , I may get kicked out any day but without the responsibility of a professional job I would go back to live in India and have lots of hired help and curl up and die 😕
Sorry to hear that Pearlette. Must be tough working whilst being symptomatic, Hope you don’t get kicked out.
Thank you. I do contract work so at best someone wont employ me again. In fairness I have had a lot of goodwill and I am kind of good at dealing with " difficult patients." i.e youngsters with drug induced side effects. Their eyes light up with admiration when I provide a perfect rendition of akathisia, dystonia etc. Some of them think I must be on antipsychotics and have tardive dyskinesia
And yes the NHS has no doctors !
This time I have not renewed a contract to take a month off to recover from an unshiftable dystonic right flank muscle. Never known such pain before.
Doesn’t Levadopa help your dystonia?
Usually does a good job but this Right QL seems a little resistant sometmes. Besides I have had irritating dyskinesia within 3 months of starting Ldopa in early 2017. Sometimes it comes on with mini doses of L dopa per 24 hours. At other times I can swallow handfuls of Ldopa and not get dyskinesia.
Oddly the only person who can get a grip on what is happening on the muscle itself is a Feldenkrais practitioner I see. For example she noticed that there is a sweet spot of relaxing / lengthening of different aspects of the muscle that occurs naturally during a treatment session reduces pain . Too little is no good but too much is not good for me.
But working out what degree to stretch / exercise is very challenging. Its now been going on for 11 months and I am tired. In the past massage with L dopa used to work. This was getting worse with massage (so I am assuming that the massage did relax said muscle too much)
Its delayed my last years self care project of improving my muscle mass with ordinary exercises under a proper physical trainer who is rehabilitation oriented.
A 3-4 week staycation is to de-stress and get into disciplined meditation and decluttering a few stressors like certain relationships, pre retirement finances etc. Plus a little down time would give me time to work out the science for myself.
My poor neurologist (MD specialist) is tearing her hair out having has run out of options. I intuitively feel that DBS would be too risky for me (as in unpredictable outcomes).
By the way did you check out your B12 levels . Roughly every 3 months you run out on B12 on a vegan diets. Or atleast your red blood cells so and that may affect muscle supplies too.
Interesting. My B12: ok as far as I know. My dystonia is very mysterious too. It can hit anywhere but seems to have targeted the neck and back more recently. It’s very receptive to Levadopa thanfully But I’ve had some curious moments with it:
1) On the way for DBS evaluation in the car I had terrible dystonia. But I remember that there was a 15 minute section of time whereby I managed to lay in the back of the car and the sun was on me. I felt very relaxed and the dystonia went away for that 15.
2. I’m due Levadopa at 8. Sometimes I wake at 8.45 and because I’m asleep, get No Dystonia. Unfortunately, if I wake up early at 6 am my mind automatically starts wondering ‘how long before dystonia kicks in?’ I just have to think it and it appears: I can tell as my head starts to press itself into the pillow harder than normal. So then I have some Levadopa. What’s interesting is that after about 10 minutes, the dystonia retreats. But then these CL capsules shouldn’t work for 20 minutes? Maybe a bit longer?
Dystonia is a mystery element of Parkinson’s I’d say!
Perhaps there is no mystery after all? In both cases, the (de)stress factor seems to play a very important role.
Sort of but I wouldn’t want anybody to get the impression that dystonia is driven by the mind. I think there’s a lack of dopamine at base level but it might be induced by stress? So what I’m saying is that if I had a full tank of dopamine, all of the stress in the world wouldn’t be able to induce dystonia.
If there is one disease where body and mind work together, it is PD. Stress affects dopamine levels in the brain, and thus the motor and non-motor symptoms of PD, also dystonia. Therefore, the mind can be the decisive factor in the transition phase of whether or not to use levodopa.
pearlette . This type of thought induced dystonia happens to the best of us 😳💁. I have come to realize that I tend to get dystonia when I think about it. Goes away a few minutes after deep breathing.
I think it is jeeveswho has the " thought induced " symptoms.
T
I dose on demand. Best time is when my toes begin to wiggle. Both feet. The next stage is when my left outer foot turns down and inwards. The painful versions have a cycle of their own. Usually in my leg muscles except the calf. probably because I stretch the calf almost subconsciuosly because I used to have bad plantar fascitis from my 20s and guess what it disappeared 1 month after starting L dopa.
sometimes my neck muscles and scalp muscles gripe for a week.
The lower right side of back is a new one. It wakes me up from mysleep when I turn. It is agony to stand up from sitting. Feels like a corkscrew is tearing its way into glutes and lower QL. It is only partially dopa resistant. Also stress heightens the pain.
I have tried magnesium suppements, topical magnesium, clonazepam, baclofen , got as drnk as I could one evening, massage (helpful at other sites), acupuncture , The Feldenkrais sessions are beginning to make aslight dfference but today the pain is abck with a vengeance. Trihexphenydyl helps a little when this severe.
I am even thinking of trying medical marijuana. But it scares me as I work with so many patients with drug induced psychosis.
This might help.
Thank you what prn?
As required medication , which is different from self adjusting doses of regular medication
The PRN prescription stands for 'pro re nata,' which means that the administration of medication is not scheduled. Instead, the prescription is taken as needed.
Latin term literally used in medicine just to keep us mere mortals uninformed 😇
My husband improed greatly when switched to Rytary.
rhyspeace12 . Can you please elaborate on the success you have seen in your husband's condition? Has he faced no challenges so far?
The vast majority of anecdotal experiences we have seen so far in this forum and others are quite negative, including me.
My husband died 4 years ago of "Sudden Death in Parkinson's" It is an actual condition. He was 80 years old. His switch to Rytary made a big difference in his life.He could still walk well. At the end he was in and out of dementia, but still clear enough on some days that he passed his written test at the DMV for his drivers license. He had horrible stomach pain and had to jump into a cold shower to stop it. We learned later that it was a "Migraine of the stomach."
I developed breast cancer at the age of 79.I believe it had at least something to do with being his caregiver and the stress. I'm fine now.
As far as personalities go, after reading these coments, he seems to be typical.He was always striving, rarely relaxing and enjoying his accomplishments from day to day. His cup was typically half empty his whole life. He was successful financially and a good father. We were married for 58 years.
He controlled his constipation pretty well with miralax. I keep following the Parkinson's information. I'm a former RN. I know how frustrating a condition it is for everyone.
Some people have commented on the impact of constipation in the exchanges - i find I have issues with the levedopa not working after a good evacuation of the bowels ie not when im blocked. I dont eat meet but have noted problems when I eat cheese, even when i have left time before/after. Given the water/treacle analogy, maybe you need a higher dose at certain times? How does this fit with the DBS progress? Take care!
Who owns the website?It says:
carbidopa at approximately 70 to 100 mg a day. Patients receiving less than this amount of carbidopa are more likely to experience nausea and vomiting
I usè sinèmet sparingly, oftèn only a 12.5/50, a number it doesnt mention.
I’m speaking to Bristol today. Another lovely name: GoGofloat. Very inventive!
hi Jeeves
I know this may sound weird but I started a carnivore-ish diet and started HDT again and my digestion has improved significantly. Some carbs I can’t give up certain fruits and sourdough bread which I do try to limit. When I was more carb based my digestion was terrible constipation and meds not working for hrs after eating. Also I take a HCL with enzymes pill with every meal to help break down the proteins. Also I take magnesium in powder form every night magabsorb it’s called this also helps with preventing constipation.
If I’m really struggling I blend my medication into water 100mg cocareladopa to 100ml of water this also makes it easier to absorb just a bit tricky with taking exact amounts also I get a bit of dyskinesia taking it like this.
Hope you get sorted soon 👍
Very interesting! Same thing happened to me…right after my insurance company switched prescription mail order suppliers. It made me wonder if I was really getting a good pill. Also I’ve been recently trying to do intermittent fasting…,
Thanks for that Todd. Appreciate it.
I don't take levodopa, but I have been using natural supplements to increase dopamine. However, I have noticed a decline over time. Like many others in this group, I have been conducting research and experimenting on myself to find solutions. I have identified more than 100 underlying dysfunctions and deficiencies that seem to be involved in Parkinson's disease (PD), with each person having a unique combination. One of the most common dysfunctions is dysbiosis, which refers to an imbalance of gut bacteria. From the articles I have saved on this topic, it appears that a significant portion of people with PD have unique strains of gut bacteria that develop in response to an unhealthy gut environment. For instance, individuals with PD are four times more likely to have or have had GERD (gastroesophageal reflux disease). In such conditions, these gut bacteria strains become toxic factories, producing toxins to compete with other gut bugs.
Most of the dietary advice I have come across for PD suggests eating more fiber, which seems logical. However, when I tried this, I felt worse. Furthermore, as I now experience excessive daytime sleepiness, the effects of fiber on my condition are often immediate. While there isn't much research on this specific topic that I've found, a PD clinic reported that their patients also worsened when they tried a high-fiber diet. It appears that when these modified gut bacteria strains consume fiber, they produce toxins that accelerate our condition. On the surface, it might seem logical to adopt a ketogenic diet. However, studies indicate that following a keto diet for more than a week can have detrimental effects. My own experimentation confirms these findings, at least for myself. Additionally, it seems that many people with PD also have involvement of Malassezia yeast, which feeds on medium and long chain oils, producing toxins. Recent evidence also suggests the presence of candida yeast, in my case. These combined yeast and bacterial strains are highly adaptive and can adapt to consuming almost any food within a month, based on my self-testing. This process is similar to the development of antibiotic-resistant bacteria. Antibiotics kill off most bacteria, leaving behind the resistant ones, and the cycle continues. In the case of individuals with PD, the yeast and/or bacteria adapt to whatever we eat, gradually being able to consume almost anything and, in turn, producing more toxins. This may be one reason why the Mediterranean diet, which encourages consumption of a wide variety of foods, is helpful in preventing PD. I apologize for the lengthy post, but these points bring me to the topic of a vegetarian diet. While it eliminates red meat, which studies have shown is a risk factor for PD, it may also increase fiber intake, leading our adaptive bacterial strains to thrive and produce more toxins, if my theory holds any merit. Another consideration for your situation may be to keep blood sugar levels below 105. Personally, if my levels exceed 110, my symptoms worsen. In addition, from my self-testing, I believe that adopting a restrictive eating pattern can help keep candida and other toxic gut bugs in check, allowing our bodies time to heal. However, our bodies still require nourishment, but I have not extensively explored this aspect yet. However, over the years, I have undertaken 3- and 10-day fasts, but as I have progressed, my body no longer recovers as easily and needs a more consistent supply of nutrients. There is much more information available, but this is the essence that may be helpful in your situation, in my opinion.
On a side note, I am currently seeking research partners. I have spent over $10,000 on supplements and foods to test on myself, and I have devoted years to research. I have even hired a research assistant to help sift through the vast amount of available information online. However, I am running out of financial resources, time, and energy. If anyone with similar interests is interested in collaboration, please let me know.
me too brother ditto. My MDS has suggested DBS.??? The more you take to battler the PD the more the Dyskinesia. Go figure.
Movement specialist mentioned constipation reduces effectiveness of PD meds.
the end game (there is always an end game ) it is always played a bit differently than the first part
Change in Parkinson's happens to me now in a non linier fashion. I have noticed as it progresses that I will have a bad day and then again the next day and after about 4 days in a row I know it is not just a bad day but instead the new normal. The amount of change each time has become larger and the rate of change is faster.
Each time I have been able to increase my LD or decrease the time interval between doses but the LD lasts shorter and shorter time. My Neuro said that he thinks I am no longer making any of my own Dopamine. My back neck and shoulder pain is directly related to the PD as I tend to fall backwards and have a lot of difficulty knowing where vertical or my center of balance is located . As in every thing in life communication is the key but my brain and back muscles are not talking to the other.
HOWEVER
Some times the LD does not affect the back pain, it seems to just not kick in. That is when I look at the frequency and success of the bowl movements. This is also confirmed by more pain in the stomach and abdomen and some times kidneys. The LD is sitting in my stomach in line waiting to be absorbed in the upper digestive track and nothing is moving so my stomach hurts and a slight sick feeling.
I eat lots of fibre, drink lots of water and everything I eat is evaluated and much is left uneaten and my meals are small but while it is necessary to do this , the stool does not indicate any problem with what is being past . The problem is I believe that the internal involuntary muscles that move the mass along the system are not being told to do anything and then the subject of bloating with GAS and the pain associated with that becomes important.
More exercise, more prune juice, more gas generating fibre, more attention to the bowls and an emergency plan using enamas as the last resort.
good luck
Brave to make that process discussable here. It seems like a challenging phase to know if what you're going through is a "normal" progression. My PRO-PD app by Laurie Mischley, which shows a nearly straight reference line with a few slight curves, only goes up to 15 years after your diagnosis. This is a reason to refer back to the original research.
mdsabstracts.org/abstract/p...
There the graph shows a straight line up to 27 years, probably because there is no further data, with the transition point from "fair" to "poor" averaging at 22 years. The range of variations is becoming wider. Perhaps it gives you some reassurance that the inevitable "end game" is not yet in sight for Mischley, but it is clear that the battle will be tough. Stay strong! 🍀
Gymsack
The necessity of smaller meals, attendant weight loss, constipation are - as you rightly observe - symptoms of gastroparesis and of an entire disgestive system becoming sluggish.
Prokinetics can help with these things. Prucalopride (Motegrity) is likely the best prokinetic for those with PD (some are not advisable at all eg Metoclopramide).
This MD PhD is a fabulous communicator and an expert on gastro issues in PD.
I suggest that you look at the bottom of the samples or the area under the curve and you see the ones that start off in EXCELLENT , ( because we all do ) ending up in POOR is curving up and not a straight line.
When I mentioned a "straight line," I did not mean a horizontal line. I am perhaps naïve, but not that naïve… 😉 For me, a curve implies an accelerated deterioration, but that is not evident in her research. Again, these are averages and not a guarantee for the future. However, it works both ways. Even in the phase of 20-25 years after the PD diagnosis, there are still scores that fall into the "good" zone.
Look at the area on the chart under the sample points. with the points being the upper edge of the area . It starts in EX and ends in Poor and it is a curve and is valid .Draw a line between the lowest point in each year .
😅I have asked AI to assist here. My favourite subject was statistics in mathematics and a horror was English, so I hope this clears up any confusion.
The main difference between a straight upward line (1) and an upward curved line (2) is the rate of change or progression.
(1) A straight upward line represents a constant and steady increase or improvement without any significant variations. It indicates a linear progression where the value or condition is consistently rising over time.
(2) On the other hand, an upward curved line suggests an accelerating or exponential growth pattern. It indicates that the rate of change is increasing over time, resulting in a more rapid improvement or deterioration. The curve implies that the values or conditions are changing at an increasing rate as time progresses.
In summary, a straight upward line represents a consistent and steady increase, while an upward curved line suggests a more rapid and accelerating change. Mischley’s PRO-PD notes (1) a straight upward line….
never mind you can not see it , forget about lines
I am amazed that you spent so much time with graphs and yet can only look at a graph one way