Parkinson's and Mishaps!

Mishaps are no doubt compounded when you have a mobility problem. My crowning glory today was reaching for a cereal box next to bottles of cooking vegetable/olive oils. (On the top shelf!) Guess what decided to come out, bounce on the kitchen top and open out all over the kitchen floor? That's right, it wasn't the breakfast cereal! It is a warning perhaps to place 'dodgy' packaging and ingredients on a low shelf. Has anyone written top tips for dafty parkies? It's probably a useful project!

24 Replies

  • Cereals next to cooking oil? Maybe it's time for a complete rethink about kitchen storage!

  • Well, I beat you to it! I have a wooden pine cabinet with glass doors. I fell

    head first into the door. The glass pushed in, thank God, but a word to the wise: USE YOUR WALKER! Particularly if you are "careful" walking 3 steps to the refrigerator. I was lucky, because my DBS "expensive" head wasn't damaged. The dogs headed for the high country and that was all but I got a

    caregiver lecture.

    Watch your steps!

  • Hi Lizzie. I am not a great believer in any Pd Medication. We are all aware that all Pd medication has serious side effects, but many of us do not know that NO PD MEDICATION HAS ANY POSITIVE AFFECT ON THE PROGRESSION OF PD!

    When we have these side effects we often think they are symptoms of Pd, but sometimes THEY ARE NOT! Very often these medications do not even have any affect on any of our actual Pd symptoms. I therefore ask the question, "If the medication you are taking has no positive effects on your Pd then WHY ARE YOU TAKING THEM?"

    I am not against taking Pd medication, but if it is not doing anything other than giving you serious side effects then you should not be taking them.

    I don't want to interfere with your management of your Pd, but only to make you aware of what we face when dealing with Pd.

    One of the ladies in one of the Support Groups I regularly visit has been cutting down on her Pd medication because she was taking over 10 tablets a day and was in a very bad way. She decided to cut down on her medication and she is now down to 1 tablet a day and feels a great deal better. She told her neurologist what she was doing and he was not happy about it, but she said she was not getting any better so was going to do it anyway. He said that Pd is a degenerative condition and she must expect it to get worse. She mentioned my name to him and he was not amused.

    She has lost 14 Kilograms in weight and is now able to exercise again. I also know of several other Pd patients who have cut back on their medications and they have all had beneficial results.

    I hope this will help you deal with your problems.

    Good luck

    John Pepper

  • Thank you for your reply John but I think you might be responding to a different post than mine as it does not appear to be related 😀

  • Hi Lizzie. It was responding to your post, although a little obliquely. I meant that certain apparent Pd symptoms are not related to Pd but to medication. If you are not a Pd patient I apologize.


  • Oh, but I never even mentioned symptoms or side effects. It's all about a mishap that I experienced yesterday, I'm confused

  • Hi Lizzie. My apologies! It just goes to show how we all read things differently. I thought you were bemoaning your clumsiness.

    Never mind, Nothing has been lost.

    Kind regards


  • May I ask HOW we know if medication helps???My husband has Parkinsons and is on medication PLUS blood pressure meds and heart Crestore!Are you saying his Parkinson meds are not any help??How do we tell? Thanks

    Susie F

  • Hi Suzzi. I answer your question as a patient and not a doctor.

    Other than MAO-b inhibitors, all the other Pd medications are aimed to mask some of the symptoms. As they don't tell us which symptoms to watch out for, we are left to simply take them and that is what we mainly do.

    If we knew which symptoms they are trying to mask we could easily tell, within a couple of days, whether they have been successful. Many of us believe that the medications are supposed to be helping to slow down the Pd, but NONE OF THEM DOES THAT!

    My advice is, if the medication you are on is not making life easier for you, then STOP TAKING IT. IT IS NOT DOING YOU ANY GOOD!

    Of course, the manufacturers won't like this, but that is tough.


    I know there must be many Pd patients who are unable to walk at all, but that cannot be helped. If you only think you are unable to walk but have not really tried to do so, then because it is so very important, START TO WALK AS FAST AS YOU CAN FOR ONLY A FEW SECONDS OR MINUTES.

    When you have done that and have made a note of how far you walked and how long it took. That is very important, because as you get better at it, you will get a great deal of benefit from seeing your fitness levels rising.

    It does not matter if you were only able to walk for 2 minutes before you were out of breath. It does not matter if you only walked for 20 steps. The whole point is to build on whatever you are able to do.

    Don't walk every day, walk every 2nd day. Make a note of each walk. at the end of 2 weeks, try to walk a bit further. I normally recommend adding on no more than 5 minutes to your walking time. Whatever you do, don't walk every day! Only increase your time every 2nd week.

    Within a month you will be able to see enormous improvement in the distance and time you walk.

    Give it a try, it works!

    Good luck!


  • Oh dear Lizzie! So Back again to your original topic. Seems you have a name for the book perhaps you could write it! ?

  • John, My husband has Parkinson's not me but the Sinement does help with the stumbling and balance so guess he should take it.Just diagnosed April 2013 from agent orange in Vietnam they say?He asks me what if i stop meds well when Dr upped to 2 sine-met a day he does not have the stumble &trip with walking so that is how I am guessing it does help him. That is only medication he takes for Parkinson s. Has blood pressure and heart meds also.thanks for your reply.Just take it one day at a time and he seems to be doing okay now.

  • Hi Suzzi. Let me explain about the stumbling and balance. The medication merely connects the subconscious brain to the muscles in the arms and legs etc. That is only for a short while. Then he has to take more medication for another short while. Slowly, the body gets used to the medication and we have to take more of it. While that is going on, the side effects of the medication slowly build up until the side effects are worse than the Pd and the medication has no further affect any more on the symptoms.

    Meanwhile, we all have he ability to use our conscious brain to control our movements. All we have to do is learn how to consciously move our arms and legs. He must forget about the medication and start learning to use his conscious brain to take control of everything. Don't just come off the medication, do it slowly!

    Just to illustrate this to you, let me suggest that you stand next to him and hold his left arm in your right arm, so that he will not fall. Then ask him to see how far he can lift each leg up in front of him. He has to place his weight on one leg and lift the other up in front. Then ask him if he can still stand up on his toes, while still holding his arm. Then let him stand with his feet apart and see how high he can swing his arms.

    You will both find that he is able to put his legs up quite far in front and he can still stand up on his toes and swing his arms very high. So why is he not able to do these things when he walks?

    The answer to that question is that his subconscious brain is not able to connect properly with his limbs, but when he consciously moves them he can still do it properly! The conscious brain has no problem communicating with the limbs.

    So how do we put this into practice? Now we have to consciously think of placing our weight on one leg while consciously lifting the other leg off the ground and moving it forward and placing the heel of that foot FIRMLY ON THE GROUND. That gives us something to concentrate on - LIFTING THE ONE LEG UP AND STICKING IT OUT IN FRONT AND LANDING ON THE HEEL OF THAT FOOT.

    Normally we just WILL ourselves to walk without having to think of how we do it., but now we can no longer will ourselves to walk we have to move one leg and arm at a time.

    It takes lots of practice, which slowly gets easier as time goes by.

    Then, we can start to walk as EXERCISE!


    I will be making a video of this very soon and we can all see just how simple it is to start the process of getting better.

    Good luck


  • Sorry off topic Lizzie. But can you please Include the references for the claims when you write them John. I know you may have in the past but I think if the info is repeated link to the research is necessary to support what you say.

  • Why is it always olive oil?! It sure has a wide "splatter reach." I now reach for it with the respect it deserves -- ever since I had to repaint a kitchen wall, heh.

  • It's no problem Hikoi. I'm not too happy about Mr Pepper's dominating presence on this thread but at least he is not directing a vulnerable person to his paid content which is how I came to know of Mr Pepper's perspective. I've no doubt that Mr Pepper has helped himself and others greatly through his observational work and I don't really mind that he 'goes against the grain' of standard medical practice which does focus on medication but this has to be done responsibly. I'm hoping that if John Pepper's methods do work then ultimately the medical profession will take note and use them. Proof that they do work will be harder to come by because the methods or the responses might be painstakingly slow. It must take quite a long time to use the conscious brain to control movements when throughout our lifetimes this has been completed automatically. When a patient undergoes a program of treatment for anything really I suppose, they are under the care, monitoring and responsibility of their medical professional. This cannot be done when a layman gives advice, etc.

  • Hi Lizzie. I appreciate your comments. You are correct in what you say. It does take a long time for anyone to overcome the affects of Pd, by doing what I have done. It took me 10 years.

    My feelings are that if I can persuade other patients to go this route they will start to slowly return to 'normal' rather than slowly continuing to get worse.

    I have only had a few people who are on their way back to 'normal' and I have had quite a few letters from one or two of them, which I am unable to post on this blog. You can see them on my website, which you feel uncomfortable about me mentioning here. They are not all on that website as I don't have the time to keep it current. If you would like me to send them to you personally you can email me at

    Good luck


  • I was somewhat alarmed when John Pepper made the claim of 'reversing Parkinson's' which has connotations of a cure but if he feels that he had achieved that through his own methods then that is brilliant! Can your own doctor verify that this has occurred Mr Pepper or do you now ignore the medical profession entirely?

  • Hi Lizzie. When Dr Norman Doidge came to South Africa to investigate my Pd history, he spoke to my GP and 2 of my neurologists, before talking personally to my family. After he had satisfied himself that I was telling things as they are, he went with me all over SA and spoke to many people I have been able to help.

    I recently went to see one of the top neurologists in South Africa to ask him if he thought that I still have Pd. He gave me a thorough examination and he said that there is no doubt at all that I do still have Pd. He has personally been aware of what I am doing and saying, but he has to be cautious telling his patients because not all Pd patients are alike. That sounded like a cop-out to me, as nothing I tell them to do can possibly harm them. Other than possibly coming off medication. My feelings about that are that if the medication is not doing us any good, other than possibly masking one or two of the symptoms, then not taking it can't make our condition any worse.

    You may not be aware that when I first wrote my book I was the Chairman of our national Parkinson's Association. I gave copies of my book to several neurologists and heard nothing back from any of them. Then I was suddenly removed from my position as chairman by a 'lady' who asked me not to stand for re-election again for the 5th or 6th time, as it is not good for any association to have this. I agreed to that and when she took the chair, she immediately asked me to resign as vice chairman because she claimed that I was using the association as a means of selling my book. In fact, the association had asked me if they could sell my book, to which I had agreed. They received 40% by doing that.

    At the next AGM, 2 of the top neurologists attended, which is most unusual, and the chairperson got up and lambasted me and my book for: 1. misleading people 2. for claiming to be cured, without the use of medication, 3. using the association to sell my book. I disputed these accusations but one of the neurologists then got up and supported these claims. I asked her how she could say that because I mentioned over 50 times in the book about the medication I had taken and at least 20 times that I WAS NOT CURED. I asked her also who else I should sell my book to other than Pd patients? She responded by saying that after reading my book the reader is left with the impression that this was the case. How can I fight that one?

    Wherever I go, I meet this opposition from neurologists, other than one, who actively tells his patients to contact me.

    I think that neurologists find it difficult to listen to a layman and accept that what he is saying actually works. Other than my book, I am not selling something from which I derive an income, I am merely trying to spread my message to patients, at my own expense. I talk to hundreds of patients every year and have updated my book 3 times. In 2006, at the 1st World Parkinson's Congress held in Washington DC, Dr Beth Fisher announced the results of her studies on the affect of exercise on Pd patients. She claimed that FAST WALKING produced the best results and that it repaired the damaged brain cells.

    I was convinced that the medical profession would have taken note of that and have started to tell their patients to start doing fast walking, but that never happened!

    What is your reaction to all this?

    You will see from the above why I am so negative about neurologists, but I am not against what they do. I am against prescribing harmful medication before even trying to start doing exercise.

    Dr Norman Doidge has also come up against a fair amount of opposition from his fellow doctors, who refute his 'neuroplasticity' theories. So I am not alone in this effort to change the thinking of the medical profession.


  • John, I'm very new at this blog and already got blasted because I used the word "God" once and the word "joy." At least two persons said that I was sermonizing and one accused me of thinking that there is joy in Parkinson's. Strange world we live in! We are all adults here and we should all know that Parkinson's has a myriad of symptoms and of treatments. With respect to the doctors, I want to say that they can quite possibly learn a lot from the sufferers and/or the caregivers! My husband has stopped reading for a long time. When I mentioned it to our very knowledgeable young PD doctor, she said that Parkinson's does not affect vision. The very NEXT PD bulletin had a whole page about vision changes like the words "bouncing off the page" just like Louis described. Also, Louis had a severe bout of akathesia. He was put on Stalevo. When he had his last bad hallucination/delusion, they pulled him off the Stalevo. Then he had bouts of hot and cold all night. So...they put him back on Stalevo at night (Sinemet during the day) with Remeron and NUPLAZID for his hallucinations. Doing better now at night. So...I will not stop Louis's meds because of what helped you. But I will take note of what works for others, knowing full well that we can learn from each other! Keep sharing. I appreciate all I can learn!

  • Hi Josephsimon. I don't understand what you are saying here, "I will not stop Louis's meds because of what helped you". Has he started doing fast walking? Is he still on Sinemet during the day and the others at night?

  • Lizzy, it is common knowledge in the Parkinson's community that exercise is very helpful for patients. My community in Austin, Texas, has a group known as "Power for Parkinson's." They conduct at least 2 one-hour classes a day, 5 days a week throughout our city. I also attended a MJFox conference recently and exercise was mentioned many times as a helpful thing to do. The Phenny (misspelled) Foundation for Parkinson's also places primary emphasis on exercise because the founder was an athlete. (I am in the United States, so I am mentioning US Foundations).

    It is only in the few decades or so that we have decreased the amount of exercise that we do. I am a psychotherapist and have been for 30+ years. I have always encouraged my clients to exercise for mental health reasons. It is also very common for a psychotherapist to recommend "mindfulness". That is: paying attention to what your body is doing and let go of all the "thinking" or "judgments". This is, I believe, what John Pepper is recommending (but using other language). So please "don't throw the baby out with the bath water".

  • Sorry for my very late reply. Thank you for your responses John. Your methods really are very interesting. I think that i'm in the throes of Parkinson's apathy unfortunately. A whole new regime that could break through this procrastination would be a miracle. I don't object to you mentioning your website, not at all, my objection at that time was that you referred a very vulnerable man on the site to your paid content and I did find your claims a bit astonsishing after what I had learned about Parkinson's. I hope only good things come from those who follow your work and I wish you well.

  • Well. Hi all, I'm new to this site. My husband has PD (16 years now). I write/investigate about all things PD.

    As in all things related, it's the comments that reveal so much. From Lizzie's initial question down this meandering road to JohnPepper's beliefs and back again!

    Just a thought: before Levadopa (in all its various compounds) came to be used, the life-expectancy of a Parkinson's patient was 20 years. 20 years. In fact, back in 1967, when Hoehn and Yahr first published their scale, their seminal study stated ‘the average disease duration for patients with Parkinson’s as 9.4 years’.

    Now, I'm not a great lover of is a bitch,'s what we have at present. The reason life-span was so short was because, as you know, PD is a very BUSY disease and they plum wore out.

    But, there's hope finally on the horizon for better pharma offerings - a lot to do with the aggregates formed by Alpha-Synuclein.

    Oh, Lizzie....seeing as you bumped into that bottle of olive oil? Take a good swig....good way to lube and tube!! :)


  • I am 62 and in my 9th year of PD have taken many drugs. They all help I have found that a combo of meds and exercise works best for me. I take my meds as Rx and do crossfit 3 to 5 times a week. I have been doing Crossfit for 9 months have lost 30 pounds look 10 years younger have more energy i also worked 40 hours a week. I just retired and do things all day long.

    the exercise is great I no longer stumble around stiffness in my arm is gone. I still have some down time but not much.

    My doctor is open mined and listens to every thing i say.

    To say one thing is the is the way to go is wrong.

    The human body is so vast we will never understand it all.

    just keep positive and open minded and don't let pd control your life.

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