Time and tide wait for no man (or woman)

I was diagnosed over 11 years ago and it is only recently that I seem to have lost my 'get up and go'. I have recently been diagnosed with Acid Reflux and am finding the medication I take for this is interfering with the efficient management of my Parkinsons. My meds are not lasting from one dose to the next and also 'going off' during the night. It seems these two illnesses are both wanting to have the upper hand. Has anyone else found that meds for two quite different problems do not sit easy together? I will ask my Parkinsons Team for help, but am not sure if I want to change my meds as, until recently, they have suited me well. I am now not awake most of the night with Parkinsons. I am coughing myself silly with reflux. Think I prefer the Parkinsons!!!!

52 Replies

oldestnewest
  • Hi, I am also 11yrs into diagnosis, although I don't suffer with any other ailments. I have the same problems with going off at night, I can barely move at times. My medication should also last longer, I take 9x25/100 doses of Sinemet, this is not enough, plus 1mg Rasagaline. I had the DBS operation September 2015, so something is going wrong. I will be seeing my neurologist on Tuesday 21st, I will let you know the results.

  • I was diagnosed with parkinsonism secondary to a growth of their brain 11 years ago March 9th. and I am having problems similar to yours. I am taking two 25/100mg. Tabs of levodopa five times a day. One 200 mg tab ofentacapone four times daily and one 4 mg tab of roprinerol hydrochloride three times a day. My meds take 20 to 30 mins. or longer to kick in and wear off a good hour before I can take them again. But when I am asleep it is as if my phone is dormant and I am almost fully functional for about the first 10mins when I first wake up,then the first thing that goes wrong is it get stuck as if both of my feet are glued to the floor.

  • This seems identical to my own symptoms, I am having as much off-time as on. When I am on, I completely functional. this is quite frustrating. I'll keep you informed of my developments.

  • Thank you and I will do likewise.

  • My visit to the neurologist was mixed today. It appears that the right side electrode has been inserted in the incorrect location of my brain, therefore it is totally dependent on medication. The left side electrode has been inserted correctly. The result of this is that I have to take more medication than I should have to because the right side electrode is ineffective. This causes dyskinesia on my left hand side as more medication than needed is being taken than required, and balance problems because the left and right sides are not synchronised. I cannot have an MRI scan to determine the correct location of the right side electrode in my brain, because of the metal already installed in the DBS operation. Therefore my neurologist and surgeon will have to examine previous scans to determine what, if anything, can be done. This results in the following scenarios;

    a) Surgery will be needed to relocate the right side electrode to the correct location, so that it will work properly. This will be the best case scenario, as less medication will be needed. Dyskinesia will be greatly reduced, and my balance will be improved.

    b) The right side electrode has been inserted in the correct position, and the brain is or responding to the electrode.

    c) The correct location of the right side electrode cannot be identified from previous scans, therefore nothing can be done.

    Obviously, I am not keen on having a second brain operation, however this is my best choice, as the operation will have been a waste of time otherwise. My neurologist has said I will have to “muddle along” until they decide the next step. Meanwhile he has adjusted the controller to give me maximum control of my left side, to improve my mobility during my off-time, and overnight “freezing” when I am fully depleted of medication. This has helped a little.

  • I am truly sorry to hear that. I will keep you in prayer praying they figure out the best course of action soon and everything goes well. Please keep me up-to-date.

  • Thank you, I remain positive.

  • Also, I hope this helps with your own situation.

  • You do know that you want to prolong Increasing your dosage of the sinemet as long as possible because they saythat at 1800 mgs that it starts causing dementia.

  • My husband with Parkinsons takes Nexium on doctors orders for his re flux. His esophagus got swollen and a piece of meat got stuck in it and had to be surgically removed. The Nexium doesn't seem to have caused any problems with his other medications and keeps the esophagus from being irritated..

  • Hi Court. What Pd medication do you take? Are you aware that no Pd medication does anything to slow down the progression of Pd? Do you know that your body produces a natural protein that actually repairs the damaged brain cells, which is caused by Parkinson's? You are therefore able to get your brain to produce more of that chemical so that you can actually reverse the symptoms of Pd. You cannot cure your Pd, but you can reduce its symptoms to the point where you don't need any Pd medication, but in order to be able to do that you have to do some energetic exercise.

    Perhaps your Pd medication possibly causes the acid reflux?

  • Yo Pepper... Unless and until you earn yourself some medical credentials, you really need to stifle your insipid, incessant, and UNQUALIFIED preaching about what people should and should not be doing for the management of their particular set of symptoms. This may come as a shock, but this is a community of thinking adults - most of whom have been managing their lives and making their own decisions quite well without some self-righteous guru wanna-be regularly popping up to assert that anything beyond fast-walking (buy my book! buy my book!) is invalid. Time to put a lid on it...

  • Hi Whack-a-mole. Had it ever occurred to you that different people read each item and I have every right to tell everybody what has happened to me and what can possibly happen to them, if they so wish. It is difficult to tell my story in tiny little chunks so I refer them to my website, where they can either read bits and pieces in various articles or read the whole story at a very reasonable cost. I cannot print, market and deliver, postage paid a book for less than what I charge. I make nothing on selling the books, which makes it a service to interested people.

    I can understand some people, maybe like you getting bored with what I say here, but there have been hundreds of people who have been absolutely happy with what they have learned and what it has done for them.

    If you have a vested interest in seeing people continuing to take medication and not getting any better then you make me sick. So why don't you declare yourself?

    You are not forced to read what I write, you can just skip over what you seem to know what I am going to say!

  • Hah! I have a vested interest in seeing people take meds? I personally continue to use only natural supps and regular exercise for my PD.

    I do have an interest in helping people avoid fraudsters and charlatans, however, and find it especially troubling that you consistently fail to point out your original diagnosis of Essential Tremor - not Parkinson's - and your consistent failure to respond to levadopa/Sinemet (which serves to confirm the original diagnosis) as you persist with your fast-talking, fast-walking, anti-medication evangelizing to people with actual Parkinson's. Your sermons really need to be delivered with disclaimer attached.

  • Hi Whack-a-mole. I would make sure of my facts if I were you before calling me any of those names. My original diagnosis was, and still is, Parkinson's disease. well after the day of diagnosis I asked my neurologist what type of tremor I have and he told me it was an essential tremor. He never changed his original diagnosis. There are more than one type of tremor you can have with Pd. Resting tremor is not the only type of tremor. When Dr Norman Doidge inspected my medical files in the doctors offices he found that I was initially prescribed Sinemet and Symmetrel, which I did not remember when I wrote my book ten years later. He also told me that I reacted well to those medications, according to the neurologist's files. In a later edition of my book I rectified that mistake and apologized for it.

    When I wrote the book ten years after diagnosis I did not have records of everything that had happened to me. I am very open to everybody about that.

    I would suggest that you apologize to everybody about the accusations you made!

  • I'm guessing an apology isn't likely to be happening anytime soon, JP. I've followed your erratic tales (as well as such tales can be followed) ever since your first "Reverse Parkinson's Disease" book debuted a few years back (yes, that same farcical, unqualified, unsupported tome that earned you the boot from your position as "National Chairman of the South African Parkinson's Association" and a warning from credentialed medical professionals to cease sales immediately).

    You're truly a fast-walking, fast-talking, whirlwind of contradiction - so much so that you appear incapable of keeping pace with yourself. For starters, essential tremor - YOUR malady - is NOT Parkinson's disease: webmd.com/parkinsons-diseas...

    Four years ago in a moment of unscripted frankness to 'Hikoi' you confided: "I do not have a resting tremour, but I do have an essential tremour. I have found that I am unable to help those people with the resting tremour. I must assume that their Pd is therefore very different to mine... I have been able to help a lot of people with walking problems, and freezing problems. I must therfore assume that we have something in common. However! Those who have a walking problem and a resting tremour I have not been able to help. How do you understand that?" healthunlocked.com/parkinso...

    Just over a year ago to 'Metacognito' you acknowledged, "When I was diagnosed in 1992 my neurologist said that my tremor was called an essential tremor, weaning [sic] that I shake when I try to do fine motor movement. That is the opposite of the resting tremor, which only happens when not doing anything.[note link above for differences between essential tremor and Parkinson's disease]" healthunlocked.com/parkinso...

    Nowadays, however, in order to maintain a convincing front for your "Reverse Parkinson's Disease' farce and for the recent incorporation of your tale in Doige's book, (and to get back at those evil conspirators from Big Pharma who seek to stifle your magical "reversal") you choose to deny your essential tremor diagnosis in preference for one of Parkinson's.

    Contrary to your current stance against meds, a few short years ago you wondered in your post why all doctors didn't prescribe Mao-b inhibitors (drugs that worked for you at the time) as opposed to Sinemet (drugs which only work for people with genuine PD) and boldly proclaimed, "MAO-b inhibitors are capable of slowing down the progression of Pd. No other type of medication can, to the best of my knowledge, achieve this. As a non-medical person with Pd, I would like to know why this is not the best way to deal with Pd?" healthunlocked.com/parkinso...

    Nowadays, you incessantly rail AGAINST any and all drugs while constantly pointing to yourself as an example of someone who has "reversed" their "Parkinson's" disease by exercise alone.

    I'll leave it to others what to make of such a specimen but highly recommend you quickly get to work on that next literary blockbuster, 'Reverse Self-Delusion'.

  • Hi Pd Conscience. I wonder what your reason is for writing this very derogatory rubbish?

    Everything I have written in my books and here on HU is one hundred percent true! I was diagnosed with Pd, before my neurologist told me that my tremor is called essential tremor. Are you saying that he is an idiot and he does not know what he is talking about?

    Does this essential tremor have all the 45 symptoms I mention in my book? If it does then what is the difference between Parkinson's disease and essential tremor? Are you trying, as many people have done, to get other people to take no notice of what I am telling them because it is bad for business?

    You keep talking about my current stance against meds. What is my current stance against meds? Is it, "Stop taking meds, regardless of how much you think they are helping you?" or is it, "None of the Pd medication do anything to slow down or stop the progression of Pd?" I always advise, "if the medication you take does not do anything for you, then stop taking it". That sounds like good advice to me! If it is not doing anything for you then why take it if it isn't slowing down the progression of the Pd? Many patients get temporary relief from one or two of their symptoms but the Pd continues to get worse, so what benefit are they really getting?

    Facts:

    1.I was diagnosed with Pd by 4 different neurologists

  • Hi Pd Conscience. I pressed the wrong button before I was finished.

    Facts:

    1. I have been diagnosed with Pd by 4 different neurologists. Are you telling us all that they don't know what they are talking about?

    2. I have a tremor which, I have been told by one of them, is an essential tremor. You say that if you have Pd, you cannot also have an essential tremor. Something funny is happening here! I am the ham in the sandwich. You sort it out.

    3. I have been able to overcome my shuffling by learning to use my conscious brain to control the walking, and I have been able to teach hundreds of other Pd patients to walk properly as well, by using their conscious brain to control their walking. Therefore, do none of them have Pd in your opinion?

    4. I have been able to bring food to my mouth without spilling it, by using my conscious brain to control that action and I have been able to show others how to do the same. Am I misleading them?

    5. I am still unable to write legibly unless I write in capital letters. Am I imagining this?

    6. If I stop my fast walking, my Pd symptoms start to return again. Do you think that this is a figment of my imagination?

    7. When I had a meeting with one of the neurologists, who opined that I did not have Pd, without having examined me; I asked her to let me show one of her patients, sitting outside her office, how to walk properly. She refused point blank to let me do this because she said it is not recognized as the proper way to treat shuffling.

    Now this all sounds like what you are doing. You have not met me or examined me but you call me a fraud. You can't have it both ways. Either I do have Pd, as the 4 neurologists have said, or you are just muddying the water to put others off listening to me.

    You must be very deperate!

  • Just curious, JP - in the 25 years since your diagnosis of essential tremor have you ever taken a few minutes to actually examine and consider the distinguishing characteristics between your essential tremor and genuine Parkinson's disease? [see MedMD link above]

    Do the clear distinguishing factors of a tremor that (as you years ago admitted), is most active "when [you] try to do fine motor movement" (versus the resting tremor of genuine Parkinson's that is most active during times of rest) cause you any pause for thought about your entire "Reverse Parkinson's Disease" charade?

    That key difference, together with your consistent failure to respond to levodopa/Sinemet treatment as genuine Parkinson's sufferers do (while proclaiming, "MAO-b inhibitors are capable of slowing down the progression of Pd." - as is typical of essential tremor sufferers), should have served to temper your grandiose claims of "reversal" of PD. Instead, you choose to ignore the obvious in favor of keeping the charade alive.

    A few years ago you admitted, "I have found that I am unable to help those people with the resting tremour. I must assume that their Pd is therefore very different to mine.?" [link to original text above]

    Whatever happened to THAT version (the honest version) of JohnPepper?

  • Hi PDConscience. We are never going to settle this one until you accept that my diagnosis, by my original neurologist was, and still is, Parkinson's disease.

    The fact that the original neurologist said that my tremor is an essential tremor does not change the original diagnosis.

    I have read about essential tremor but that only talks about the tremor, it does not talk about all the other symptoms, which you also ignore.

    I am not a neurologist and don't pretend to be, which you appear to do. I still go on what they tell me and not on what other tell me.

    You ignore Dr Doidge's report on his investigation into my case was. If he is satisfied that I was diagnosed with Pd and that I reacted well to the sinemet, then where do you come from with all your spurious accusations and claims?

  • Take it easy John! Relax, go for a walk. stress is toxic!

  • Hi advancePDguy. Thanks for your interest. I am very used to guys like PDConscience and others, who are desperate to throw doubt into the minds of other people. I may be hurting a few chemists and drug companies, and possibly a couple of neurologists, who do not have their patient's interests at heart, but fortunately there are not too many of them about.

    Let him make all these allegations. What does he think I get out of telling people my Pd history, at great expense in time and effort? Even if I only get to help around one third of those I speak to, that is a large number of people. He should just see all the letters and emails I receive from people who have enjoyed a great deal of benefit.

    Business is business and we don't know who he is and who he works for. We just have to put up with people like him, if it is a him.

  • Doidge is not a neurologist either. He's a psychiatrist who writes books. He had a publishing deadline to meet and a book to sell. He's not likely to let some diagnostic ambiguities get in the way of a good yarn and yours fit his story-line convincingly.

  • Hi PDConscience. We can all see what a nice person you are! If I were to send this post to Dr Doidge I think he would be greatly annoyed. He is a very fussy man and he would not have gone to all the trouble and expense he did in order to check out my story. I suppose you have the same opinion about my doctors. Are they also i bit iffy?

  • I notice you have yet to answer my simple question: What ever became of the JohnPepper who once admitted that he was "unable to help those people with the resting tremour"... that same JohnPepper who once extolled Mao-b inhibitors as the only drug "capable of slowing down the progression of Pd"???

    This is a SERIOUS question about a mind-boggling 180° shift in your stances on both the value of drugs in slowing PD progression, and on your stated inability to help those with resting tremor attain a similar "reversal" of symptoms as you yourself supposedly experienced (by virtue of your fast-walking crusade).

    Short of a brain transplant, how do you account for such a radical transformation?

  • Hi PDConsious. Sorry about that! I was so busy defending myself I forgot that question. I have been able to help people with resting tremor to walk better and to overcome many of their other symptoms but I have not helped them to overcome the tremor!

    The item on MAO-b inhibitors, I am sure I said that the manufacturers of Selegiline claim that it is "capable of slowing down the progression of Pd".

    I have stated quite clearly all the thongs I ave done to get to where I am right now. They are: Fast walking, taking an MAO-b inhibitor, having a positive attitude, Getting rid of harmful stress and doing lots of mental exercise, in the form of puzzles and and learning new skills and a new language.

    If you really were interested in what I have done you would have first read my book and then attacked me but you prefer the fistycuffs stuff!

  • JP, Appreciate your reply and the attempt to spin your endorsement of Mao-b inhibitors a few years back. Anyone interested in the actual facts of the matter, however, may view your post in its entirety via the following link (it's YOU making the claim with no mention of the drug manufacturers): healthunlocked.com/parkinso...

    RE Your suggestion that I read your book(?!) - reading a book titled "Reverse Parkinson's Disease" by an "author" without any medical qualifications whatsoever (one who was, incidentally, warned against releasing a book based on such fraudulent pretext, and one who was subsequently relieved of his position as Chairman of the S.A. Parkinson's Association in the wake of its publication) has yet to surface on my list of priorities.

  • Hi PDConcience. Don't you just love having the chance to vent your poison.

    Perhaps you can tell me who warned me against releasing my book, or did you just dream that up?

    Your accusation of writing a book on a fraudulent pretext is just another opinion, based on lack of knowledge on your part.

    If you would like to know the accusations made against me by the committee of PASA I will happily give them to you. They were as false as your accusations, but like yours, they were meant to put other Pd sufferers against what I am telling everybody.

    I did not know that I had to have a medical degree before I could white a book on my experience as Pd sufferer.

    I hope you are being paid a lot of money for doing this hatchet job.

  • JP, The name and contact details (solely for confirmation purposes) of a single individual who has actually succeeded to "Reverse Parkinson's Disease" as a result of either reading your book or of attending one of your fast-talking, fast-walking sermons will silence me forever (...anxiously awaiting).

  • The thought of not ever hering from you again is very thrilling. I am not able to send other people's names and email addresses on this website. If you contact me on my website - johnpepper@telkomsa.net - I will write to a few people and ask their permission to give you their details.

    I would have nothing to do with you if I were them, but it is up to them.

  • So, I want to make sure I understand you correctly - you're claiming that there are in fact people diagnosed with genuine Parkinson's (not essential tremor or other non-Parkinson's condition) who, by virtue of reading your book or attending one of your fast-talking, fast-walking sermons, have successfully managed to "Reverse Parkinson's Disease"... but they may be to shy to share such a miracle with the world?

  • Hi PDConscience. You are ducking and diving. Either you really want to have people tell you their Pd history to the whole world, but you don't want to reveal yourself to me and them?

  • John. This was originally a question I posted. Will you please stop using it as a personal battle ground. Thanks.

  • JP, Surely you're not so juvenile in your faculties of reason as to try accusing ME of "ducking and diving", in order that you yourself might duck and dive a simple reply to the question asked above.

    Once again, are you - the acclaimed "Reverse Parkinson's Disease" guru - claiming that there ARE in fact people diagnosed with genuine Parkinson's (not essential tremor or other non-Parkinson's condition) who, by virtue of reading your book or attending one of your fast-talking, fast-walking sermons, have successfully managed to "Reverse Parkinson's Disease"... but they may be to shy to share such a miracle with the world (a simple 'yes' or 'no' answer will suffice)?

  • Hi PDConscience. This is going nowhere! You are abusive and only interested in making wild and abusive accusations. You are not looking for for proof of anything you are just stirring. I will not be responding to any future attacks.

  • PD is by definition a progressive neurodegenerative disease. Initial diagnosis is frequently wrong because the initial symptoms can be insidiously mild. Anyone who has not progressed in 10 years does not have PD. Otherwise, anyone can claim to have beaten any disease!

  • A natural protein hat repairs brain cells?

  • Hi Boyce. Have you not heard about GDNF? GDNF stands for Glial Derived Neurotrophic Factor. Glial cells are the cells damaged by Pd. all cells in the body produce something called 'Growth Factor". Growth factor is there to regenerate that particular cell, in the event of damage. When we cut ourselves these growth cells replace the damaged skin and when the scab falls off we see that the damaged skin has been miraculously replaced. We the same thing happens in the brain with those damaged glial cells.

    Scientists have spent all these years since 1991, when GDNF was discovered, trying to find ways of getting artificial GDNF into the brain to repair our damaged brain cells, but so far they have not been very successful. They should have spent all that time, and a lot less money, finding ways to produce more GDNF naturally, as I have.

  • Are you sure that your acid reflux meds are interfering with your Parkinson's meds? Or is it possible that your Parkinson's meds are wearing off faster? That is the case with me. I take my levodopa every three hours and it only lasts for about two now.

  • Yes, it is possible that my Parkinsons meds are wearing off faster. I take Stalevo every 4 hours. Sometimes they last over 4 hours and others they go off after 2. I do not want to increase or change my meds unless it is absolutely necessary. I am due to have a three monthly appointment with my Consultant soon so will see how I am getting on then.

  • Hope this will help you but I find cider vinegar really good for acid reflux

  • I take apple cider vinegar. Sometimes, it helps other times it doesn't. Acid reflux is horrible, isn't it?

  • Hello

    I have suffered with acid reflux for several years and the thing that helps alot is not to eat anything 3 or 4 hours before going to bed.

    I am careful not to take antacids or Omeprazole within 4 hours of taking my Sinemet.

    Hope this helps!

  • I never eat for at least 3/4 hours before going to bed, have the bed raised, am careful what I eat and am waiting to see yet another Consultant. Thanks for your reply.

  • I actually started getting B12 shots that have stooped the reflux. I take 1mg Rasagaline once a day and 25/100 doses of Sinemet every 2.5 hours

  • Now this interesting. I have B12 shots every three months. However, I accidentally let these lapse and my GP thinks this is the cause of my reflux. I have lost a lot of weight as all food tastes peculiar and I find I feel full quickly. I am waiting for yet another hospital appointment!!

  • Thank you to everyone who took the trouble to reply to me. However, I did not expect, or want to be involved in personal differences. These have nothing to do with me and should not have been posted. I am saddened that people cannot respect different opinions and will not be posting for a long time, if ever.

  • Well put Court! Whatever works for you....works for you. This blog page simply represents all who have found their own solutions that for whatever reason work for them..... No one here should proclaim to have a fix for all. It that was the case they would be published on a big pharmaceutical website and have as many letters behind their names and $$ signs front of them. One has to have a shred of common sense when reading here. The fact two people complain about a hangnail doesn't mean PD causes hangnails!

    I am thankful I don't suffer with acid reflux, because I eat extremely hot foods simply because I can distinguish the "burn" and let my brain remanufacture the taste and smell. Many people would be far better off being grateful for what they still have or can do.

  • Thanks for this. I agree that everyone is entitled to an opinion, but that these opinions are their own and should not be forced upon others. I am disappointed that some people have put their personal likes or dislikes before the person who originally posted.

  • I was in a similar situation two years ago. I had gastric surgery for the acid reflux. This was very effective- it stopped the reflux and the coughing, leaving me to deal with Parkinson's. I suggest you talk to a gastroenterologist about this.

  • Thank you for this information. It is really interesting as I did not know there was surgery available for acid reflux. I will speak to my GP. It is also refreshing to get a reply that actually relates to my post!! Thanks again.

  • Hi Court. I only fight when attacked. I have advised my attacker that I will no longer respond to his accusations or any other article he posts. Sorry for the altercation.

You may also like...