better to start with sinemet (cardidopa l... - Cure Parkinson's
better to start with sinemet (cardidopa levodopa) or dopamine agonists? what ones can one function best on?
I am not qualified to provide advice so please take my comments in the spirit they are intended, which is to provide a peer opinion based upon my own experience.
I started out with Sinemet. It worked great to alleviate PD symptoms. Except that over a period of many weeks I gradually succumbed to increasingly painful dystonia in my right lower leg/foot. My Parkinson's nurse recommended increasing the dosage to counter this. And the dystonia got considerably worse, my right foot turned into a claw.
One day in the middle of last year I meaningfully "forgot" to take my Sinemet. And 24 hours later the dystonia was gone. Instantly fed back to my PD nurse and she changed me over to rasagiline - which I've been on ever since. I still have some dystonia but nothing like as aggressive as that I suffered with Sinemet.
The moral of the story is that only your specialist can recommend what's right for you. No-one else can. And in my case her advice was wrong - and I had to take matters into my own hands to get that sorted. There are no right answers which work for everyone and you should consult with your specialist to acquire what is right for you.
Hi Grapes6. I would venture to say, better not start with any medication, as all Parkinson's medications have serious side effects, which can be worse than the Pd. It would be better to start doing regular energetic exercise, particularly fast walking, for up to an hour, three times a week. If you have not exercised for a long time, then be sensible and start walking as fast as YOU CAN, for no more than 10 minutes. Rest the next day and do the same every alternate day. Take one extra day off every week so that you only walk three times a week. Measure and record how far you walk each time and get the psychological benefit of seeing how your condition is improving every month. After two weeks of this regimen, add five minutes to the walking time. Then every second week add an additional five minutes until you reach one hour. Don't fall into the trap of telling yourself you cannot do it. Unless you have some other condition that would prevent you from doing it, just bite the bullet anf start walking! Walking has been proven to be able to reverse Pd. NOTHING ELSE HAS BEEN PROVEN TO REVERSE PD!. For more info, visit my website - reverseparkinsons.net. Good luck
John
John . it was the walking that was my husbands main problem in the first place and nobody pushed himself more not to give in . A man who had never been ill didn't know what a headache was never took any pills .
He didn't know that he had AF at the time and I am not so sure how much that impacted on his ability to walk , we blamed the Parkinson's .
John i have wanted to ask in a long time, you make these claims that this reverses symptoms and your experience shows that but who else? You say it is proven so please can you tell us how many people you know have followed your regime and now have stopped medication and continue well like you? I know many here feel encouraged by your positive approach and I don't want to change that but I for one need more proof than your word. The references to exercise having potential benefit I have read., I am
interested in peoples experiences.
I hope you don't mind the question, its just that you have written so often about no taking medication and exercise reversing symptoms.
Hi Hikoi. I have been demonstrating my walking to hundreds of people ove the past ten or more years. There has not been one single person who was unable to walk properly, when I held their arm, to prevent them from falling, and showed them how to consciously walk properly. As I don't see any of them again for long periods of time, I am unable to follow these demonstrations up. I have to be brutally honest and say that only about twenty percent of them continue to practice the walking. When I ask the others why they did not continue doing it, they can never tell me. If I were to stay with them every day and walk with them, which is impossible, they would probably get used to it and continue under their own steam. Most Pd patients hate walking. Don't ask me why! Pd is a movement disorder and it is understandable that any movement might be more than just a control challenge. I have many 'patients' who have continued the walking and some have been able to reduce their meds, while others are too scared to do so. Many of them have increased their walking distances and times and have felt a general improvement. I have never kept records of all this, more is the pity. I can give you emails from many of them to confirm what I have said. Please let me have your email addresses and I will send them to you.. Have you looked up Dr Beth Fisher's website for the results of the walking studies on humans?
Kind regards
John
John - I exercise every day but have never got to the stage where I can do without medication. You are the only PwP who makes this claim that I know of and I think you are giving bad advice telling PwP not to use medication. It is true exercise helps and the more exercise you do, the better you will feel and your mobility can be enhanced but we all need the medication of one sort or the other and it is becoming increasingly obvious that the body of medical opinion is swinging towards medication earlier is better for the quality of life of PwP
Hi Froggatt55. It took me ten years of walking 24 kilometres a week (15 miles) before I was able to come off medication. I did not do it wthout medication and I did not come off the medication until I was able to control my movemens (walking, bringing food to my mouth, writing etc) properly. To use the old expression, "Rome was not built in a day". If you had read my book you would know the full story. I am sorry I cannot tell the whole story in a blog like this, but for a few bucks, it is yours and everybody else's to make of it what you will. I am the first to say that we are not all alike. No two people have the same set of symptoms, no two people react the same way to various drugs. I have told my story to the world, at no small expense to myself. I share everything I can, free of charge with whomever asks. What more can anybody do?
Regards
John
Thanks for your response John - It puts your experience in a different light knowing you spent 10 years achieving it. I'm going to buy your book now
Regards
Bob
Hello John, when I have been out and perhaps had some difficulty with waking, sometimes a well meaning person will offer assistance perhaps by holding my arm.
This business of gait freezing is rather strange and is particularly likely to occur in places where space is restricted, e.g. a doorway.
Now those people trying to help by holding an arm come quite close and I have found that such a person offering assistance in this way makes the problem worse as their close proximity suddenly creates a restricted space where perhaps there was none before. I have experienced this only a few times but has caused me to feel unsteady almost to the extent of falling.
This a bit awkward as the people offering help are unlikely to appreciate this problem, Without previous experience of this, how could they.
John, I wonder,have you had any of your walking "patients" comment on this matter in like terms?
I also wonder if anybody else on this forum has had this happen to them?
Yes I understand completely what your saying. For me it was like stepping into an abyss, crossing a road or wide open space. Another descriptive I use is walking a tightrope cars objects people were like bullets disturbed my balance. I thought it was my blood pressure but that was ok. So decided it was Visio spacial. Tried all sorts of tricks could not overcome it.I was on requip6mg still am introduced a small dose of linemen 5 yrs ago problem dispatched.C'oincidence I don't know but it's not returned yet This is just my experience. I'm not recommending a drug as the answer I've had medication since day of diagnosis.10 yrs on I'm happy with were am I feel better than I did years ago Im more confident at managing and preventing.Best advice s address sleeping problems it's as important as exercise.
while I have not reversed PD, I race walk and run 25 to 30 miles per week and my progression is very slow. I am on Sinemet, butI have been stable for some time. The only time I feel in control of my body is 4 or 5 miles into a run or a race walk.
Hi rch21
Would you mind telling me how long you have been diagnosed and how old you are?
25 to 30 miles running each week sounds incredible. Although I have been diagnosed 11 years and exercise daily, I could not do so much running - do you use a treadmill?
Interestingly, my neurologist said to me last week that I was lucky that the disease seems to be progressing relatively slowly, I wonder how much that is down to my exercise and having read your post I am determined to do more!
Kind regards
Bob
Bob - I am 60 and was diagnosed 2.5 years ago, though it took 2 years to get a diagnosis. I have been running all my life, though I converted to more race walking than running 6 years ago as my knees were a problem and I already coached race walkers. I typically run 2 days and race walk 4 days per week and 1 day off. (I am not super fast with the race walk, but still do a 10K in 1:12 to 1:15.) Distances and type of workout vary. I only rarely use a treadmill, but as I get older, it is more common on cold days. In addition, I do some very lightweight work and some core work.
In addition to coaching race walkers for a local track and field club, I also coach Cross Country and Track and Field at a local private school which helps me stay motivated.
If you cannot run more, I recommend race walking as it is low impact on the joints but as good or better for cardio exercise. Keep going. Rich
Hi rch21. Are you aware that exercising the same muscles every day can cause them to eat themselves up, in order to get the energy they need. This is not recommended. I have been advised by the top sports medicine doctor in this country that I must rest for one day, after any strenuous exercise, in order to give my muscles time to recover. I am not a doctor, nor a scientist, just an old man trying to do the best I can to stay active.
Good luck.
John
John - yes - I cross-train with easy distance runs partly for that reason. I also vary workout types (hard distance, speed and recovery). It is also beneficial to fully stretch after any workout and eat protein within an hour of a strenuous workout to help muscles maintain themselves. All that said, as I get older it is something to be aware of. Thanks. Rich
thanks Rich - we were diagnosed at roughly the same age - I was 59 and am 70 in July. It is impossible to tell when it started - it could have been as early as 1999 or even earlier (ref Helio Braak research) My exercising over the last 5/6 years has been mostly strength based as my left knee put me off cardiovascular
I take your point about race walking and will find a gym that is not too expensive (as I will only be using the treadmill) and make a start. OR I will buy a second hand one .
Best of luck to you
Bob
generally I think most of us are lay people referred to a Parkinson's consultant with very little understanding of what Parkinson's is like in the first place .
The consultant asked my husband to touch his nose with his finger , then took him outside into the waiting room and asked him to walk up and down .
he went back into his too and said yes you have Parkinson's , gave him a prescription for Sinemet and told him to go back in 4 months .
No explanation or advice .
athe next visit I told him there didn't appear to be any difference and he increased the dose . and so on and so on .
as my husband became worse he thought it was the natural progression , I am not so sure if was caused by the medication or progression .
Each time we went I use to write things down for him to read before talking to us but he always said . Oh you are doing good . They don't come home with us do they . We are left very much to our own devices the best Dr is yourself and reading and listening to others in the same position is the best way .
Hi cabbagecottage. Yes! It is all up to us as patients. I don't want to give the impression that I am here to sell my book, but it gives the whole story of how I got to the stage of not needing medication any longer and living a reasonably normal life. My Pd started in 1963 but was only diagnosed in 1992. I have been doing a lot of exercise since 1970 and that has, in my opinion, slowed the progress of my Pd. Double blind studies have proved that energetic walking for one hour, three times a week can reverse the symptoms of Pd. If you want a ton of information on symptoms and treatments etc, then go to my website, which I am bisy ungrading - reverseparkinsons.net. You areb free to ask any questions you wish. I do tell you how to change the control of his walking, from the usual subconscious brain to the conscious brain. You may find this hard to understand, but you don't think about how you walk, you just walk. The control of that walking is handled by the subconscious brain. Pd affects the way the subconscious connects to the muscles. If the messages don't get to the musclesin the legs and arms, then walking is a problem. Fortunately, we are able to consciously tell our legs and arms to move. A simple experiment to carry out is with the arms. When next he is trying to walk, see if both arms are swinging. The chances are that one of them does not swing. All he has to do is consciously swing the arm, as he walks and he will see what I mean by all this.
Best of luck.
John
It is often said how different PD is for each of us. Some of us have faster progression, some slower, some have a tremor, others don't. It just makes me wonder if at least some of your success in eradicating symptoms is attributable to your particular case of PD. Perhaps if your PD were of a different "flavour" then perhaps fast walking very much may have had no or minimal effect or maybe even it could have brought out other symptoms that may otherwise have remained "dormant". Who knows?
Hi cabbagecottage - I agree with you on Neurologists as a whole but you have to "take charge" - this where I do agree with John. You definitely need to exercise - the more the better but you have to take charge of your Neurologist - or change him / her.
When I see my Neurologist or any medical person, I always prepare an agenda and insist we use that for the consultation. I have always researched any drugs that are available and only use those that I am happy with from the tons of literature that is available
I am 70 this year (11 years diagnosed) and have taken up boxing training twice a week both to build up my strength and mobility of my feet and legs and the results are good viewed holistically. I have been able to extend my "on" time by an hour but that is not guaranteed because there are so many things - such as stress which can eat up your dopamine level that make such results to be inconsistent.
If I was living in a monastery with all my food provided as required and only did exercise and watch movies - which sounds very stress free - then I could perhaps be more in synch with John's view but the real world is different
In summary take charge of the condition and exercise to whatever level you can
Hi Drevy. I am nearly 80 years old and am a one-man-band. I am trying very hard to bring an awareness of what we can all do to help control Pd. The cost to myself of doing a professional video is too much for me. I have tried very hard to get my grandchildren to help me do this but they are professional people, as are my children and they just don't have the time. In response to a suggestion from one of the people on this blog, I enquired yesterday what it would cost me to have a DAT scan. Nobody here in South Africa has heard of such a thing. I am sure I could get it done in Europe but doing what I do at the moment costs me all my spare money and those things would not be covered by my medical aid. So my chances of proving to the world that I realy do have Pd is quite small. I am sure that there are many people who will be glad to know this.
Keep trying!
John
John,m
I got to the point where I couldn't walk, so I've been in a wheel chair for about a year. What can I do to start walking again?
i was first on dopamine agonist for 5 years. it workes out fine for me no side effects.after these 5 years i could not use my right arm properly and i noticed that i couldnot coordinate my arms and legs with swimming. tan my neurologist put me on stalevo that is doing well for me untill today.i am also walking evry day and taichí and pilates i am happy!
Hi grape6 - I am a fellow PwP and cannot give you objective medical advice but I can give you my experience
I was started off on Ropinirol (an agonist) which I now take as Requip XL but the Ropinirol did nothing for me except make me sick. I then read about Amantadine which I asked to try and this did nothing for my Symptoms but it gave me a boost. I then took Sinemet which did help but it wasn't until I took Azilect that the whole cocktail suddenly came to life and I felt wonderful and I have taken this cocktail for 6 years (11 years diagnosed) and still feel great in the mornings and afternoons but tend to dip in the evenings unless I have a nap later afternoon
If I were starting again, I think I would start with Azilect - which I and many other PwP - believe has Neuro protective capabilities - and before adding Sinemet I would include Amantadine which I - and many other PwP - believe has "anti-dyskinesia properties. Indeed there has been recent research published that confirms it's efficacy against dyskinesia.
I still take, as I said Requip XL, but I often question it's efficacy. I don't sleep without it and it does seem to be effective against RLS but I have changed the taking of it several times to see when is the optimum time and will no doubt start cutting it down in the future
I have survived for so long because in addition to my medications I regularly (like every day) exercise and try to get a decent night's sleep and AVOID STRESS LIKE THE PLAGUE - easier said than done I know!
Goods luck with whatever you decide
Two simple facts... No two people are alike. Exercise or lose it.
thanks everyone for the feedback and advice .
In hindsight , I believe my husband had been struggling with Parkinson's for many many years . He is a stoic man , still is . As I am sure you all are .
He swam daily and wouldn't take the car if he could walk anywhere . But bit by bit thingS must have got worse . If were out once we were walking if we met a friend he found it difficult to stand and talk to them , he would change the subject as well . I would even get a little embarrassed when he walked away , he said he couldn't keep his balance and felt unsafe . Wouldn't go anywhere without me , most unlike him .
It got much worse and even a short distance would ask me to hold his hand and let him walk on the inside of the pavement he became weaker as his legs started to give out . .
It wasn't until this point that I managed to get him to see the GP . John asked him if he thought he might have Parkinson's . The GP took his blood pressure and have him BP medication . It took a further re years of agony for both of us for them to diagnose .
All that time he was exercising we would even throw a ball back and forwards to each other to help the balance When out walking I would check his arm swing and make him sing and we walked . Nobody could try any harder .
Too be honest I can't say that the medication has made any real improvement .
He is eighty now and has be taking the meds since he was seventy . I wish I had spoken to people such as yourselves in the first place . I would have had a much better understanding .
He is chair bound now has been for quite some time . We were unfortunate to have lost the consultant we first had , he retired . I have been hoping that the new man would be younger and more enthusiastic but they are a very long time in replacing him . I have Been
waiting for a Parkinson's nurse to get back to me but have to wait such a long time for everything to happen .
On top of all that he has had two knee operations
Keep moving , use it or lose it quicker is correct
Maybe if he hadn't been as stubborn he might have got worse very much sooner .
Although you all have the same illness no two people are the same and it's such a complex illness Johns brother who is eight years his senior also had Parkinson's but is more able , he manages to get around in a buggy , I am not so sure he should !!! But nobody will stop HIM he is other stubborn one .
At his last appointment the new man we have seen said he will look at trying something else , he thought the Sinemet was flooding the brain! Whatever that might mean . He had to see him in two weeks time . .
.
No absolute answer. Once a day drugs are usually agonists or azilect and the patch. Ldopa Keats means several times a day and instant response but shirt acting
I wish that we call could be given such definitive answers as your question seems to be looking for...but PD is not a "one size fits all type of proposition". PD presents itself in almost as many ways as there are people who have it. It would be convenient if your question could be posited in such a way that you were able to acquire a meaningful size group of people to provide you with good guidance to such an answer. Alas this site does not offer that either. (Last I heard we were indeed upwards of 500 members (but with an unfortunately low percentage of those participating regularly.)
I will attempt, nonetheless to be of some help with this question. First let's mention three gold standards" for dealing with our PD symptoms: In the pharma world we find one of them which is Sinemet (and its generic counterparts). Outside the world of pharma we find the most impressive plus is indeed staying very, very active...with exercise and numerous other forms of activity. Next you shall likely hear about surgical/"electromechanical (?)" technologies the gold standard amongst which seems to be Deep Brain Stimulation. (DBS)
While they are indeed considered to be best in dealing with our symptoms, they do not work the same for every PD patient any more than it would seem any non-"gold standard treatment does. On this site you will, if you watch it carefully or if you search the previous conversations find all kinds of well meaning individuals some of whom insist that their way is the "best way" or maybe even a "cure" or "reversal" of PD. (Note, I intend no offense to any such folks...if they have found a "cure" for THEIR PD symptoms FANASTIC and huzzah!) Just be sure to keep your medical professionals involved as you undertake your search - you know the ones to which i refer to here as being open minded and yet mindful of and committed to your well being. In short, the experts agree that there is NO ubiquitous cure for PD available at present. If there were we'd be deafened by the thunder of all of us, and our care providers, making a mad rush to the door to avail themselves of the cure.
Please allow me to recommend that you continue your investigation on a level headed pursuit for what works best for you as judged by you, your loved ones and your caregivers. Use the opinions of others at best as indicators of alternative channels to investigate and at worst with as a indicator of the dreams and hopes of those among us who find it comforting to have followers as they undertake their quest.
Peace, love and best wishes,
Steve
(Bisbee, AZ)
PS: Diagnosed 11 years ago, had DBS implant 4 years ago, still walking 2 miles a day and taking Sinemet.
Steve would you mind telling us what dose and how often you take your Sinemet . My husband was started on the low dose and rose to the Sinemet plus x4 daily along with the cr259 at bedtime , once tried the Sinemet 275 but he shook badly and reverted back to the Sinemet Plus .
I started to notice that he became worse a while after taking the Sinemet and felt it was too much so we reduced it . He also wears the Neuro patch 6 mg after few hours he might get a little better then it's time to give him his next one . it worries me .
The last time we went they persuaded me to increase the Patch but then he was switched off most of the day drooling . This when he told us he will look at something else next time . I couldn't pin him down to what . He mentioned then that he understood and something about it flooding the brain !!
He is very sensitive to some of his heart medication and had to stop taking them even . They mad him very delirious . I am afraid that is the case with a lot of the medication he is taking might be the . same thing is happening with his Parkinson's meds .
He is perfectly lucid otherwise and still had his wit .Thats is on his better days of course . I often wonder how he would be if not on anything at all .
I do understand there are many differ t sorts of similar illness but they insist he has Parkinson's . I don't think it is one of the easiest condition for the professional to deal with or treat .
Currently i am on 3 Sinemet per day and 1 extended release at night before bed.
same as my husband but he also uses a neupro patch . Glad it seems to be working fir you .
Hi Grapes6. If you have been in a wheelchair for a year you will have very little strength left in your legs, because what you don't use, you lose. However! Others have overcome this before. You are still left with muscles, albeit, very small ones. You should get a professional to give you exercises to start working on, to build up muscles, before you attempt to walk again. I must tell you how to walk differently to what you have been doing all your life. You have to realize that Pd takes away the ability of the subconscious brain to communicate with your body. At least, that is what I have found with my own brain. You have always been able to walk without thinking about what you are doing. THAT DOES NOT WORK ANYMORE! You now have to consciously put your weight on one leg and lift the other off the ground and PLANT the heel of the other foot onto the ground in front of you. Then you have to put your whole body weight onto that front foot and lift the back leg off the ground and continue the process, while all the time, concentrating on what you are doing.
I was showing a patient yesterday, how to do this, and he just could not understand what I meant by his conscious brain. I best illustrated this to him by drawing his attention to his arms. They were not swinging at all. I said to him, "Concentrate on swinging each arm in turn, while you are standing still, and he was able to do it." Then I explained that he was able to do it because he did it consciously. Then I said to him, "Concentrate on thinking about planting that heel on the ground, nothing else". When he did this, without thinking about anything else, he did it perfectly. However! He kept on stopping (freezing). I then had to explain that he had let his subconscious take over again and he had to wrest the situation by concentrating on putting his weight on the one leg and then lifting the other leg off the ground and getting back to planting that heel on the ground in front of him. Before he left my house yesterday, with his daughter, he was able to concentrate on getting through my front door and all the way down to my front gate, without stopping once. That was an enormous improvement on what he was not able to do at all, when he arrived at my house. His daighter could not believe that he could si=uddenly walk again, in matter of a few minutes, when he had been unable to walk at all. He just froze and had to be helped to walk a few shuffling steps at a time. I am going to get her to send me an email and I will put that on this site for all to see. I have been doing this for many years, but not many patients have been mentally strong enough to carry on doing what I have showed them what they are capable of doing. I don't know why that is!
Try doing this and see what happens. You maybe want to try it with someone holding your arm, so that you don't fall.
Good luck
John
I read somewhere that before 40 it is better to start with antagomists, after 50 - with levadopa and between 40-50 it doesn't matter
There is no right or wrong here. Some neurologists prefer the agonist as first choice as there is no decrease in intervals of dose as time goes on as there can be with l-dopa. But the gold-standard of therapy is still l-dopa even with all its problems. At the same time, there is a growing groundswell of evidence that forced, repetitive and complex exercise can reduce not only some symptoms but may even slow the development of the disease,something no drug at present can do. The exercise should be started immediately after diagnosis when symptoms are at their mildest. Exercise is not a cure, nor is it an alternative for any medication, but medication and exercise should be used together for best results. What sort of exercise? The best results appear to be with non-contact boxing exercise. If you are in the USA, Canada and Italy look up Rock Steady Boxing on the internet. It leads the world in what it has achieved. In Australia, check out Punchin'Parko's or PD Warriors. Boxing may not be your cup of tea, so any exercise will be better than none, but the more it is forced (takes you out of your comfort zone), complex (where you are performing two or more movements at the same time) and repetitive, the more neuro-plasticity of the brain is generated leading to a decrease in symptoms and even reversal of same! Recent evidence has shown that people who regularly do vigorous exercise live longer (a bonus!).
