Some undisputable facts and conclusions following the thread "is levadopa neuroprotective?"
1. Levadopa is NOT directly neuroprotective
2. Long term use of levadopa leaves some very unpleasant, awful side effects
3. Regular rigorous EXERCISES (with a happy optimistic mind) IS neuroprotective and slows down progression
4. "Drugs holiday" do not improve the efficacy of levadopa or reduce it's side effects
In that thread i asked "what would be the difference in 20 years between a PwP taking only C/L and a PwP not taking anything?"
So based on these 4 points, my conclusion to this question is-: if PwP NOT taking c/l can be motivated sufficiently enough to get involved in full regular rigorous exercises, as a starting point, then a "feel better feedback loop" is sufficient to make these PwP do MUCH BETTER than those taking c/l after 20 years because they won't have the added long term awful side effects of levadopa which, on it's own right, people consider an illness
Someone said "you only do better on levadopa because you feel good enough to do alot of exercises". But can't we find the motivations to do as much exercise without levadopa... in other words getting the best of both worlds... Not good news for the drug companies
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Grumpy77
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What of if they begin the regular rigorous exercise at very early stage of PD, before they begin to freeze up. I'm not saying PD would still not progress, but suggesting it would progress more slowly and you will be able to get on top of it if started early enough.
Not disputing your point entirely, but just a path of action I'm suggesting PwP (whatever the subtype) to consider
I love the idea of finding the motivation to exercise without levodopa, and this may be possible for some PwP whose dominant symptom is tremor. My dominant symptom is slowness of movement. I physically cannot sustain repetitive motion without medication. Although I could walk outside, my arms would not swing, my trunk would be stiff, and my steps would be slow. It would be impossible for me to walk vigorously--outside or especially on a treadmill (which forces you to maintain a pre-set pace).
My neurologist doesn't recommend PwP using a treadmill or walking a dog {large enough to pull you over}. Apparently, the idea is PwP need to be able to control the exercise without being pushed out of control.
Excellent advice, that I have been given, by my movement disorders specialist, too. I use an elliptical exercise machine, not a treadmill, and I have a small dog, that i can control well, on a leash, when I walk him, and we get our walking exercise, together!
I will give the same reply I gave to park_bear, because essentially you are saying the same thing, yours is just a longer version... i e
.....What if PwP begin the regular rigorous exercise at very early stage of PD, before they begin to freeze up. I'm not saying PD would still not progress, but suggesting it would progress more slowly and you will be able to get on top of it if started early enough.
Not disputing your point entirely, but just a path of action I'm suggesting PwP (whatever the subtype) to consider
How are you defining 'very early stage of PD'? For me, that would be pre-diagnosis. The inability to sustain repetitive motion at the same speed, not being able to control slowing down or speeding up (festooning) while walking, are the symptoms that drove me to the doctor to find out what was wrong. So by the time I was diagnosed, I could no longer do rigorous exercise. I used to run 2-3 miles everyday and had already reduced to walking, which I was finding difficult.
To be precise, I was not 'freezing up'. I cannot sustain repetitive movements at a brisk pace. I think what you suggest is doable for a small percentage of PwP.
Not taking drugs motivates me to exercise. Living çlose to my condition, without drugs, makes me want to understand its effect and then challenge it.I think being on full dose cl I'd be more complacent.
PDGal, when I was diagnosed two years ago at the age of 66, I walked like something out of Jurassic Park: a bent, knuckle-dragging, frozen-faced, shuffling, Neanderthal. My hands were like paddles and I couldn’t wave or write or even brush my teeth with ease, let alone speed. It was crushing but I took the medication (Ropinirole) because I reasoned that until I felt stronger I couldn’t help myself physically or psychologically to move forward. I then read The New Parkinson’s Disease Treatment Book by J Eric Ahlskog which is, (in my view), an essential read for those with no prior knowledge of PD. Anyway, he emphasises the importance of rigorous exercise and so I upped my game and my neurologist/movement specialist is impressed. A year ago he expected to see a ‘marked decline’ and 11 months on he was surprised again to find that I am stronger and more balanced than before.
I take 8mg Ropinirole and that’s it for now but I know too that things can change (rapidly) but for as long as I am able to I will exercise as hard as I can. And when all I can do is wiggle my toes, then wiggle I will!
While I agree exercise is more important that levadopa, levadopa is still important for the current options. Known is that as PD advances, it takes too much levadopa to control PD symptoms without adverse effects. Suspected is that oxidized levadopa might contribute to PD advancing. The evidence is overwhelming that exercise slows PD from advancing. It is yet to be showed that exercise can completely stop PD from advancing.
You are a fortunate person indeed if you can exercise without carbidopa levodopa!I would be in a wheelchair at this point without the meds. When I was diagnosed in 2013 just going for a short walk had become a painful challenge. I do not have tremor dominant Parkinson's and if my meds are working I can walk a fair distance...as long as nothing else is bothering me, like my knee.
As the disease progresses there are fewer and fewer receptors to take up the dopamine that we are taking orally. Thus we suffer from dyskinesia. People seem to forget that it is progressive. You will get worse and it does not necessarily have anything whatsoever to do with your meds. They just simply cannot work as well when the disease has progressed to a certain point.
I think we're in the same boat. Though I'm tremor dominant I still suffer from the classic PD problems:: very slow movements, painfully slow hand writing, massive difficulties when phone texting, no right hand swing, right leg drag, difficulties while walking, uncontrollable tremors when speaking or mildly stressed... and I'm only 55... I don't see where the luck or fortunate thing comes in. Yes I'm still able to do rigorous exercises WITH the aid of levadopa, But I think that is sheer determination and maybe also because I'm only about 4 years in. Also the exercises has in turn been helping me feel relatively better
If you dont take levadopa, i reckon you would feel a whole heap better if you did.
This is the reason why i question claims and misinformation, some people make decisions based on what they read here and it is not always accurate or helpful for them.
I still take madopar, but very low dose and currently trying to wean myself off it
Also even though I'm able to do rigorous exercises, up till some few days ago I've been very lazy keeping it anything close to regular (I wrote about that laziness somewhere else)... It's only a few days ago... after I read some things in the other thread that the idea of finding the motivation to make it more regular occurred to me and I bought more exercise equipments and have determined to make it vigorous and regular now. So there is still room for improvement
No not tremor dominate. Currently taking 3x100/day, sometimes only 2x/day just for walking really. Can’t decide whether to take more and go for max relief, or accept some downtime and take as little as possible in the hope that it will prove better in the long run. No one seems to know for sure!
Hi Grumpy, I was diagnosed at 55. Tremor dominant, no right arm swing, stiff and pain through my entire body, I found my optimistic attitude and “step out the door” mantra wasn’t enough by the time I was diagnosed. I had suffered for at least 10 years undiagnosed. I think everyone’s story has similarities and then total uniqueness. And maybe there is no “one size fits all”. But my body needs the c/l, I believe and I don’t even care at this point what the long term effects or not of the drug are. What I was living before diagnosis and meds, wasn’t living at all and I am taking the relief for however long it works? No qualms. I am 61 now.
In my husband's case it was initially the Neupro patch, and when that stopped working after 6 years, Mannitol. It's just a pity I didn't find this site earlier. I think he'd be in a better place physically now if I had.
I wouldnt be so sure he would be in a better place. I have never heard that the neupro patch stops working. I do know that at about 5-6 years many people need to readjust their meds as the disease progresses
Manitol may be a wonder medicine, i dont know. Except for one person I know on it and it isnt doing her much good. But perhaps I should give it a try if it works so well.
My sense was that if it's early enough after diagnosis, it will be possible, but Enidah says even at that early stage, for her, rigorous exercise wasn't possible without levadopa
Unfortunately, as with every disease, the personality and disposition of each afflicted PD will vary. A positive attitude, a fighting spirit and taking prescriptions on time consistently will help most slow the progression. ✌🏼
I mostly agree but I dont think AJ had much choice in his disease progression. This is him after 4-5 years. To add to your list, i think expectations are very influential, if one expects something wont work it often doesnt and vice versa.
Thank you so much for sharing your video. The contrast and effectiveness of the device is astonishing. I haven't heard any mention of this treatment option where I live in the UK ( Devon). Long may it work for you.
I was diagnosed fairly recently. Apparently my first symptoms recognisable symptoms appeared 15 years or so ago. Since then I have worked ver hard, been very very active and just kept going. By the time I was diagnosed all my energy was devoted to just keeping going. I lost count of the number of times I went to the Doctor Much to my horror I even broke down and cried in one appointment.
In the end it was noticed in one specialist appointment that my left leg had a slight tremor when I was anxious. I was asked to give a writing sample and before I could blink I was referred and seen by a specialist.
I see people on here who have been diagnosed and are working full time. Some don’t even need to take medication. How do they do that. By the time I was diagnosed I couldn’t work full time and taking the Levadopa was nothing short of a miracle.
One of the ironic facts about having PD, is that each patient’s symptoms, and rate of progression is different. I think of it, like snowflakes. Each snowflake is a little different, and each person’s journey, with having PD, is different. I had PD symptoms, starting out, subtlety, about 8 years, before I was diagnosed. I worked for 4 of those early years. By the time, I was diagnosed, like you, I couldn’t work full time, and taking the Levadopa was a miracle for me!
Hey smoggy, Each PD journey is different, Levadopa has enabled my husband to keep moving, golfing, exercising. Sometimes comparing your diagnosis to other’s experiences does more harm than good.
Grumpy you are completely correct . Through away those medications, and just go with exercise. That will do it. The others are all wrong. Please let us know how you make out.
You should be able to gather a group of like minded people and form a mutual admiration society because this theme has been voiced many times before. Just keep increasing the exercise , maybe fast walking will do it. Now remember no meds, we are counting on you.
I sense some sarcasm here, but whether that's true or not, I have to say it's only a suggestion and my journey with this experiment is only just beginning. Like you said I'm beginning to wean myself off madopar and the exercises equipment are coming in and I hope to get better without the toxic effects of levadopa
Levodopa is like recreational drugs. You get hooked on and it's hard to detox. . . however, levodopa is a necessary evil, but the less one takes the better. That's what our Vanderbilt MDS doctor said. That was his response when hubby said that he doesn't want to take lots of meds.
The problem with this hypothesis, is that every patient, diagnosed with Parkinson’s, is saddled with different symptoms, and are at different stages, in disease progression. So, one solution, such as vigorous exercise, is not always possible, for all PWP. Some people, are of the understanding, that vigorous exercise is the answer for many ailments. It definitely has been proven to benefit health and to help delay progression of Parkinson’s, according to various clinical studies; and most doctors encourage exercise. So, I have found that, exercises are helpful to me, especially specific exercises, for Parkinson’s patients. Because of severe arthritis, and, also, having Cerebellar Ataxia, that causes serious balance problems, etc. at times, and also, have had childhood polio, I am unable to do many vigorous exercises, safely, well! I modify some exercises to fit my abilities, as the years go by! Also, I have worked with a personal trainer, to help me exercise safely. I have found, that, due to rigidity, and stiffness, that I need to do a good, stretching warm-up, and cool down, after exercising. Sinemet, in moderate dosage, in my case, has been very helpful to me, in the last 5 years, since I was diagnosed with Parkinson’s Disease.
You are correct, we are affected differently and hence we don't have a one size fit all solution. I agree that for some people, a form of combination of c/l and exercise would be best. For these group maybe they should strive to find the minimum c/l dose practicable
From personal experience, my husband, diagnosed 10 yrs ago, has embraced boxing, stationary biking, continues golfing, all with a positive outlook. I can only assume it has helped him slow his PD progression.
1) Supporting Liverpool FC, scrambled eggs, and a warm water shower are not neuroprotective, but that's no case for avoiding them
2) The issue with levadopa's long term side effects relates to the state of progress of the disease.
3) Yup - one from 3 so far, but as many are pointing out, often people need medication to be able to exercise at all. That was the point Marc and I were making. Levadopa for many, enables them to exercise - and that is neuroprotective
4) So what??
Your idea that exercise early enough would prevent or slow progression isn't borne out by experience. Many people who have developed PD exercised long before the disease manifested, and experienced rapid progression. Here's one I was reminded of recently
Agreed, it's just a hypothesis. I could be wrong, the whole hypothesis could be a big BS. Maybe in all cases, despite the side effects of levadopa... After 20....
Levadopa+exercise would better than rigorous exercise only
But I'm volunteering to be the fall guy for this experiment. If it doesn't work it will be a big fall that would cost me everything since I won't be able to reverse time and do the alternative 😫
Sounds fair. I'm still early stage, and exercising, and unmedicated too. But I think your experiment may not work the way you think
As someone said earlier - it's the snowflake disease. Very few pwp will be able to keep exercising for 20 years without medication. Chances are, there will come a point, where we need something to be able to keep moving.
Who knows? Maybe it'll be a new something by the time its needed. But if not, it'll be levadopa
Since you're not using PD medications at the moment, I'd like to ask... How do you feel you're progressing? Are your tremors and other symptoms under control? Do you feel your exercises is curtailing the progression? And finally how would you describe the exercises you do? Thank you
I should clarify. I am no longer using conventional pd meds, but was taking, and may one day again take, pramipexol.
I am participating the SPARK trial, and so I am receiving an unknown dose of cinpanamab (i think. BIIB054)
I am about to go catamaran sailing, i ski in the winter, play tennis and swim. But my main daily exercise is about an hour a day taking 2 German shepherds for a serious walk in the mountains.
I can best describe how I'm progressing with"confused". It doesn't seem to be even. Some things seem better, others worse. I've definitely progressed since diagnosis, but maybe I'm at least no worse than a year ago and maybe better.
I generally feel better after exercise and worse if i miss it, but I've been exercising the same since diagnosis, so not stopping progression
Sounds like even though your PD has progressed, you have still got one of the best deals possible, that is.. the best possible outcome, considering it could have been much worse. GOOD for you.
A curious choice of a video. My best guess from looking at the computers (the monitors and keyboard are one-piece,) the cars and the clips of the surgeon doing DBS, this video is more than 30 years old.
Isn't the sentence, "Your idea that exercise early enough would prevent or slow progression isn't borne out by experience." in conflict with your previous where you say vigorous exercise is neuro-protective? If vigorous exercise is neuro-protective, then vigorous exercise slows the progression before diagnosis (thereby delaying diagnosis) because we have PD, that is, the progression is occurring for a decade or more before diagnosis.
The early techniques of DBS are really quite scary. The surgeon pushing in the electric probe with no guidance at all, having little idea where the other end of it is.
Are you watching the same video? This was about a stunt man. Who was exceptionally fit and exercised regularly and still developed PD which developed rapidly. Extacy enabled him to be significantly releaved of his motor symptoms exercise acrobatically like he used to.
But exercise itself neither reversed his condition nor (as you have speculated about your running) did it prevent it starting.
That doesn't mean it's not neuroprotective. It is somewhat neuroprotective. Like spf6 suncream is somewhat solar protective. But it's not sunblock, nor even spf50 or spf30.
Yes, I watched all 49 minutes of it. Ugh. I thought it was going to be mostly about the effect of exercise on progression pre-diagnosis, but 45 minutes of it was about the street drug Ecstasy and how that led to DBS and the speculation that serotonin may be a key to curing Parkinson's, which also dated the video.
The only point I was making is that if vigorous exercise is neuroprotective after diagnosis, it's neuroprotective before diagnosis because diagnosis comes long after the progression is underway.
His progression was rapid probably because he was of the young onset cohort. The video also said he was taken ecstasy for a long time before diagnosis (if he was taking ecstasy, most likely he was taking other illegal drugs (because who in their right mind self administers ecstasy) what else was he taking and what affect does being a druggie have on the rate of progression?) His taking ecstasy may have caused his Parkinson's and probably contributed to his rapid progression.
But, if we are going to draw conclusions from an example of one, a couple years after I stop my long distance running, my very tremor showed up, so it may well of been that my vigorous exercise delayed the time I was diagnosed.
Could well be that both me and the stuntman would've been diagnosed much sooner had we not been vigorously exercising. Eh?
Could be. I think my point was neuroprotection is not binary. Like all suncream is not spf50, and not every person is fair skinned. All the research we quote for our mainstream assertion that exercise helps Parkinson's shows it helps.
I think often that is misinterpreted as a total remedy or total halt to progression. And it's not
Well you're certainly correct for the vast majority of the cases, but (and I think it was) Grumpy (forgive me if I'm wrong grumpy) was trying to make the case that very vigorous exercise very early on may stop progression in a (very) few people and I agree with that.
But, then, I've always maintained the unpopular position that there are a few exceptions of PWP who are virtually symptom-free because of their (exercise) routine.
Once again I will look. I was watching the video of a medical doctor doing a briefing who had PD and was completely undetectable that she had PD. Too bad I didn't save it. But, for you, Hikoi, and posterity I will find 3.
By his own admission he Doesn't have idiopathic PD. He also did vigorous exercise at the gym for 90 mins day for many years and it didnt help. I believe from reading his symptoms over many years he has essential tremor not PD.
Personally, I’ve found it doesn’t even have to be “vigorous” exercise to have a positive effect. I’ve noticed a marked difference in general in my ability to function - gait, strength, energy level, even attitude - when I have exercised on a regular basis. In my case, it’s never much more than 10-15 min. a day, but it DOES make a difference. Maybe vigorous exercise would have an even greater impact, but this discussion has at least inspired me to get back to it. So, thanks for the nudge, Grumpy. (I’m about 15 years in, but only diagnosed four years ago.)
I'm glad this thread is impacting on you positively. On the other hand being only 4 years in, i probably have to learn from you also on how you have coped with PD over the past 15 years
Grumpy77: That’s a lot of time to cover. I’ll try to keep to the shorter version.
Sometime around 2006, I became aware of a shaking in my right hand that I’d never noticed before. At the time, I attributed it to an auto accident I’d been in two weeks earlier. I was rear-ended on the Interstate. It was a very minor accident and I had given it little thought at the time. Certainly Parkinson’s had never entered my mind. I did see a neurologist about it, just in case it got worse & I might need to file an insurance claim. That neurologist gave me a very brief exam and promptly proclaimed it to be Parkinson’s Disease. I thought she was crazy. I had no other symptoms of PD at the time.
I continued in my denial for several years. With me the progression of the disease was very slow. But after the little hand tremor became a whole arm tremor and gradually worked its way over to my left side, I decided maybe a second opinion was in order. By then I had other symptoms as well — my right leg sometimes dragged, my toes curled, and I had micrographia (tho at the time I didn’t know my tight little scribbles had a name).
The next neurologist I saw gave me a very thorough exam and a list of meds a mile long, then announced that I “did NOT” have PD. I didn’t believe his diagnosis either. By then I was sure I DID have it. I decided it wasn’t necessary to give it a name; I wasn’t planning to take meds for it anyway. (I’ve always been a little skittish about pharmaceuticals — maybe too much so at times.) I’d done a lot of reading about PD by then and felt that eating healthy, exercising, and keeping a positive attitude would be my medicine. (While it may be true that a healthy lifestyle never hurt anyone, I probably would have been wise at that point to just take the medicine!) It was when the PD began affecting my ability to function at work that I finally arranged to see a Movement Disorder Specialist in St. Louis. (I had to wait a year for the appointment, but it was worth the wait!)
I’ve been on Carbidopa/Levodopa (25/100) for a little over four years now and am very much aware I’m coming up on the dreaded five-year ‘anniversary’ (which seems to be a turning point for those on C/L). I’ve been fortunate the disease has progressed so slowly with me, but I’m also aware that will not always be the case. So, I continue to explore these boards and keep my ears open to see what works, and doesn’t work, for all of you — and even try to contribute a little something if and when I can.
My current obstacles are a voice that is becoming more and more quiet - squeaky even; very, VERY vivid dreams/nightmares, trouble getting the words in my head to find their way down to my mouth (not always a bad thing!), and insomnia.
Good to read that c/l is working well for you and your PD progression is slow. At least for taking it you're in better shape. Hopefully with time you will overcome the remaining obstacles.
I agree with your post, however the areas people look at for improvement will not happen in those areas.
I believe moving every day is crucial, but in my experience more should be done than just doing cardio at a optimal level.
Is my firm belief that a PWP should also do functional weights or strength training as well as boxing and Cardio or the like. It's working for me, I'm still on meds but they remain stable and I'm on less than originally first prescribed.
I go to the gym each day without any meds as soon as I wake up and I go for 1.5 hours before work.
Attitude is everything also, the mind body connection is very real, realising that this has to be a part of my life every day is something I have taught myself
So yes both exercise and meds at this stage work together for me
if PwP NOT taking c/l can be motivated sufficiently enough to get involved in full regular rigorous exercises, as a starting point, then a "feel better feedback loop" is sufficient to make these PwP do MUCH BETTER than those taking c/l after 20 years
That's a very strong "conclusion" to reach based on the evidence at hand.
I personally am concerned about taking levodopa, and I am very attentive to its problems, but I'm also a trained scientist, and it bothers me to see such overextended reasoning.
At best, what you've got is a hypothesis.
However, I don't mean to be a bee in your bonnet. If you've got the gumption to do the exercise, and if you can stay off of levodopa, I very honestly and truly say: more power to you. I will celebrate your success!
Something that occurs to me as I read all these posts is the key is earlier diagnosis. Like everyone else, I had symptoms unrecognized for years prior to diagnosis. I had foot dystonia when I walked; my GP told me to stretch my calves first. That was 2 years prior when I also attributed moving slower up and down the stairs and when dressing to growing older.
Going back 8 or so years before diagnosis I noticed problems swallowing certain foods; mentioned to GP at several yearly checkups. No indication it was anything to be concerned about. I also couldn't smell; figured wore out with age like eyesight.
If I'd been diagnosed at an earlier stage perhaps vigorous exercise with no meds might have been possible. I did run 2-3 miles a day. Maybe it did slow down progression pre-diagnosis; maybe not. There's no way to measure.
I worked for 5+ years after diagnosis in a high pressure, demanding work atmosphere and spent 3 years after that winding down my business. Still have a few things left to finish up. Not sure how I did it, in retrospect, but could not have done without C/L and when I did recognize I could no longer keep up with the work, it was a difficult decision. I loved my work and was very good at it.
I can't contribute to the discussion here - I just don't know enough - although if I was in this position, In think I'd really want to do as much exercise as I could and avoid levdopa as long as possible. I did want to say that it is a pleasure to read a discussion in which people listen and are respectful of each other in a world in which these qualities are often missing.
Grumpy77 your post is really not appropriate Judgmental and inaccurate. I understand that you are hurting and you’re trying to figure it out. But to imply what others need or don’t need based on your experience is really insensitive.
My post IS appropriate, NOT JUDGMENTAL and NOT INSENSITIVE. I've got PD symptoms like a typical PwP but I'm NOT hurting. I have the right to express an idea, suggestion or opinion... which is what I did.
qazwsx11 if you feel my post is inappropriate, please feel free to press the report button., You should really report an inappropriate post to HU admin
If your brain is able to respond to levodopa in a predictable fashion, the risk of dyskinesia is greatly reduced. The idea is to maintain a low dose of levodopa long-term. AADC gene therapy may do just that.
I have had PD over 20 years. I tried every exercise and forced myself with every ounce of my being and kept my medication as low as possible to still exist and alternately as high as the doctors prescibed. There may be a time that my options are take the medication or die , the worth of exercise at that point will be not much . My muscles deteriorate regardless, my balance is gone , my sensitivity to pain must have increased.
Extreme exercise gave me momentary short periods of relief the next day and nothing more ,
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Agonist versus Levadopa
what medications other than c/l work for tremors? (Dads 6 month follow up is in 2 days, in need of advice) 
AtreMorine
This what my neuro dr. told me today
Husband's neurologist is weaning him off levadopa carbadopa to put him completely on pramipexol. 
