Parkinson's Disease affects movements, which are controlled by the subconscious part of the brain. Walking , bringing food to the mouth, writing, throwing a ball can all be done, consciously, as against subconsciously. In order to do this, we have to concentrate on each action, as against trying to persuade the body to carry out the action.
How many Parkinson's patients know th... - Parkinson's Movement
I don't agree with the way you are stating the fact that the brain has no problem getting the body to do what is needed. The muscles of the body are the ones that cause the problems. I think all PWP's know this. You sound a bit like a doctor. Are you one? Caregivers as myself, even know that a PWP has to concentrate on each action they take. It is very difficult at times to do these conscious actions. Most of time they can only do one action at a time.
Were you trying to encourage people with this information? Just a suggestion, take it or not, but if you don't talk so much like a doctor maybe it may help.
I did not say, "the brain has no problem getting the body to do what is needed". I said certain movements can be done "consciously".
No! The muscles of the body are not the ones that cause the problem! The brain causes the problem! The body onlt does what the brain tells it to do!
No! I am not a doctor! I am a Pd sufferer! I can only explain things the way they are, not the way I would like them to be.
Forgive me for sounding like a doctor! However, there is s big difference in: 1. Trying to persuade the body to walk, and 2. Consciously lifting the leg up a little and then stretching it forward and then placing the heel firmly on the ground! Try it, it will surprise you!
I spend my whole life trying to persuade people to take control of their Pd, but I know it is not easy!
I find this very interesting. Could you elaborate on how this works. Thanks.
If it were that simple none of uswould have a problem. When I concentrate on writing it is either readable or not what I intended. PD is much-needed more than movements, tell my intestinal tract to work, how do I tell myself I don't have ortho static hypotension. If you can find away to takeaway all the things that can't be controlled by conscience thought you wouldn't be posting here you'd be seeing people at Johns Hopkins. You may beable to handle a couple movement problems be sheer will, but definitely not the many many other things. Yours I think is a simple minded approach to an extremely complex disease.
I hear anger in your reply. If you slow down and look at what I said, I was talking about 'movements'. That did not include bowel movements. I must apologise for not making my claim all that clear, but in the limited number of characters allowed in the question does not allow this.
I was talking specifically about walking, bringing food to the mouth, writing and throwing a ball. All of which I have been able to overcome to an acceptable level. I walk perfectly normally, while I maintain my concentration. However, when I lose my concentration, even momentarilty, I drag my right foot and often have near-falls. The rest of the time I walk well.
When eating, I hold my fork firmly, and bring it to my mouth, while concentrating on that movement. At the mouth, I place the fork on my lower lip, before I tip the contents upwards into the mouth. I hope I am describing this properly.
When drinking out of a glass, I hold the glass very firmly, in order to maintaim my concentration on that action, and slowly bring the glass to my mouth, while maintaining that concentration, and again, place the glass against my bottom lip, before tipping the glass up, into my mouth.
When writing, I write in block letters, thereby bypassing the subconscious tendancy to write in my usual script. I have written in this way since 1968. It works well.
When throwing a dart or a ball I have to concentrate on letting go of the object at the right moment. This is far more difficult,but with lots of practice, it gets better. Just make sure that nobody id standing close to you, either in front or even behind.
With other autonomic nervous system problems, there are things we can do to improve them. Such as walking, to help the constipation. Also, while on that subject, I have found that if I gently massage the rectum, while holding the toilet paper firmly against the skin, but not being abrasive; I get the muscles to relax and a bowel motion becomes activated.
I have overome regular chest infections, also by walking and by keeping my chest clear of phlegm by 'manually' clearing my throat and chest regularly. This is not nice for others to have to listen to, but they do understand, if you tell them why you are doing it.
Depression is also helped tremendously by walking and other exercise!
I hope this helps.
I'm sorry, but I beg to differ with you (but agree to a degree - if that makes any sense). Yes, there are movements such as walking, writing, brushing teeth, etc. that, in theory (and many times in practice) can be consciously "willed" to happen. There isn't a step I take that upon its initiation I don't begin a silent instructional command - "left foot forward, heel down first, long stride AND right foot forward......" It often helps to sing a marching song to get me along. This is a very conscious effort for EACH AND EVERY STEP of each and every day of my life". But sometimes (and I think you probably experience this too) no amount of "willing", "cajoling", "singing", etc. gets the first step to begin, or the beginning is not just perfect and a stumble ensues. PD is definately all about conscious thought for everything we do and the functions that are controlled by unconscious thought to a degree can also be mastered.. For instance constipation - a more nutrional diet, fiber, fluids, etc. For insomnia - an exercise routine that YOU can tolerate - no caffeine, alcohol, etc. But in the end, we often fail and need to be encouraged to keep the vigil of conscious thought active. It is very intense, the daily living activities are consumed with conscious thought processes and I am not surprised that many of us become depressed. But that too can be mastered.
I guess thereis a bitof anger here, not so much at this or any single post but in total. This disease effects each and everyone differently, for me walking is a challenge to overcome gravity. As my name implys I was once for a very large part of my life a pilot. I have about 25000 hours aloft. I flew at the end a 4 engine british built passenger jet. I flew regularily into on of thd most difficult airports in thd US. Aspen Co. with all the beautiful people. In my carrier I had to force my mind to overcome the effects of vertigo each and everytime I flew intl a cloud. Now my difciculty walking is from balance problems. If I ever had to do a field sobriety test from a policeman I could not pass it. My reaction time has slowed so much I rarely drive. I can eat pretty except I have a real problem with swallowing, both liquids and solids. That I must concentrate on all 3or4 tries it takes to get food down with out choking.
If I took what you seemed to say in the totality of you posts wrong I apologize but my impression was if we.just try and think and concentrate we can overcome this damn disease . We all need every bit of concentration we can muster just to function, brisk walking is now just a memory. My wife and I used to hike t in the mountains.in Colorado. With my balanceba walk through wal-mart is a challenge. If it works for you great, however this thing effects each of us so differently.that no blanket statement covers anyone but the person making it. When our support group mets it is an amazing thing but it is so evident that that is true. We all have the samd disease, but no 2 of us are the same. Things that work for me maby totally do the opposite to another. As bad as my typing here id it would be unreadable if I didn't get the word suggestions af the top of the keyboard.
In your posts you seem to say you can thimk and concentrate your way out of this and if you walk brisk enough you can walk right out of this, and that levadopa is the only answer. All of which I think is false. Those things can omly help and only for a while. If they work better for yoi.Godspeed
I first of all must say that I am guilty of not telling everybody that what I say and do, does not necessarily work for everybody. In fact, I would go further and say that I have not had much better than a 10% success rate with all the people I speak to at the various Support Group meetings I attend. However, 10% of all those people is a lot of people.
Flying is in my family. My brother was a PPL and my son is a ccommercial pilot. He does not yet have your total hours, but he is getting there. I have done a lot of flying in my time and have even flown into Aspen, for a skiing holiday, with my family. (Scary!) My balance is not good and has not been for a long time. When I walk, I find it hard to stop, I want to fall over.
There are two elements involved in this balance problem. The 1st is strength. It is much easier to stay upright, if you go off balance and you are still strong! The 2nd is sense of balance. When we go off balance, our inner ear tells the brain. Because we have Pd, the brain does not react quickly enough to the problem. If we are physically weak and we lose our balance, we have no hope of stopping the fall. If we are still physically strong, we do have a chance of avoiding a fall. Today, I went on a hike; the first of its kind in over 20 years. We went up a hill to a cave, which has historical importance. I had one bad experience, climbing up a steep path, consisting only of big boulders. At one point,, I stood upright and overbalanced, backwards. There was nothing to grab hold of, and I had to go down on my left hand onto a lower rock. Fortunately, I did not break anything, and the only injury was to my pride. I am 78 and having Pd did not help in any way. I will remember next time, not to stand upright.
I hope I have not made other people think that I have completely overcome all my movement problems, I have not! Nobody would ever know that I still have Pd! But they don't know what is going on inside my head! My balance is not what it used to be; I am not as strong as I used to be; My typing leaves a lot to be desired; I cannot access the most simple words; I also still choke, but not all that often; I am still constipated; I still sleep badly; I still get very stressed in certain situations. That is not all my problems, but the ones that come easily to mind.
I have got so used to concentrating on my walking, every second day, for an hour. I only walk 6 Kilometres, 4 miles, in that time, which is not bad for my age. When I lose concentration, I am immediately aware of the awkward steps I take. I sometimes trip, without falling. This past year I have had two falls, hurting my arms and knees, but not breaking anything.
I definitely do not think I can walk or think my way out of Pd. Nobody can! Because nobody would ever know I have Pd, it would be very easy for me to say that I am cured! I wish I were! It can only help others if I am honest and tell them what I have done and how I have done it. I am sure that, if I did not tell the best neurologist in the world, about my not-so-obvious symptoms, he/she would not be able to diagnose the Pd.
I often knock things over on the dinner table. Break crockery!Hhit various parts of my body against other objects, like the corners of various pieces of furniture. I dribble on the pillow at night, I get confused very easily. Does this sound like a normal old man or a Parkinson's patient?
I hope I have answered all your questions.
I don't mind you disagreeing at all. I just want to talk about the difference between willing something to happen and actually making it happen. As a non-medical person, I have made the statement that all the movement problems we have are related to movements that are controlled by our subconscious brain. In other words, things that we learned to do as children, which have been committed to our subconscious brain, so that we don't have to think about HOW we walk, when we are walking, we only have to think about WHERE we are walking. You don't think to lift a leg and stretch it forwards before placing the heel onto the ground! Your subconscious does that. If you are a knitter, you would not have to think about each stitch, while you are knitting, you do it without thinking. ALL movements controlled in this way by your subconscious are prone to having problems, if you have Pd.
I have found that if I do something differently, to the way I normally do it, then I have no problem doing this. I spoke about handwriting, elsewhere, and said that I have written in block letters since 1968, because in that way, I do not have any problems. However, I have noticed that it does still get smaller, as my normal handwriting does, but the actual writing gives me no problem at all, and everyone is able to read it.
Yes! I have heard that a drumbeat or a rhythmic tune does help PwP's to walk better. I think it has something to do with engaging the conscious brain, while walking, because I don't think the subconscious can be directly involved. I am not a scientist but that is my understanding of this phenomenon.
When we freeze, I suggest to others that they stop trying to will their feet to move but rather concentrate on lifting the guilty leg up towards the body and then taking a step forward. It seems to work all the time. What actually happens here is that you consciously make a movement, instead of urging the subconscious to do so. Again! I am not a medical man but the problem with the brain is that it is not producing enough dopamine, which is a neurotransmitter, in that area of the brain. That stops messages getting past the substantia nigra. Whereas, I have assumed that, in my brain anyway, messages passed directly to the area of the brain that actually causes the muscles to move, don't go via the substantia nigra. I have no proof of this, but, in my body anyway, if I think about each physical action, I have no problem at all, when walking. If I don't concentrate on each action, I immediately start to shuffle. It is the same brain but not the same movement? I have to add that I don't have to think of every movement, but only of the part of my movement which is giving me problems. In my case, my left heel does not lift off the ground, at the point where the front foot hits the ground. This means that the body is not lifting up enough for the right foot to pass the left foot; causing the right foot to touch the ground as it tries to pass. All the other movements still happen subconsciously.
I agree on diet, when talking about constipation, but exercise does hel a lot with this problem. I have dealt with this suject elsewhere.
Depression, likewise, improves with exercise!
In classes we work on this. I find with instruction I can walk heel toe (such as Alexander Technique) left to my own devices I cannot. With music my gait improves 100%. So overall I agree with you.
Well John, you seem to have hit a nerve with some people. I have had PD since 2001. I too have healed myself by mind control and exercise. In 2010, I could not walk, button my shirts, drink without a straw, stand without swaying & bouncing into walls, get out of bed by myself, type, and much more. I pray every day all day. I thank GOD for my healing. i thank GOD for the power he has giving to me to heal myself. I am grateful for my retirement. I look at pain as weakness leaving my body. I believe that exercise relieves my stress, plus I look good. When I have bad moments, I do anything to change my state of mind. IE: Exercise, eat chocolate smoke pot. Anything that will change my state of mind.
I am very pleased that you have healed yourself. You do seem to give the impression that you still suffer from the symptoms. What am i missing?
Forgive me if I misled you. I have not 100% healed. I am still challenged with the reason I have PD. Which is lead poisoning from pumping gasoline when it was leaded. I choose to be the victor not the victim. I choose to live a life with an attitude of gratitude. Every day I am getting better & better. Although we all have those real bad days or bad moments. I believe this is a test of faith and beliefs. I used to have days that were OK or bad. Now I have good days and great days, with occasional days that are so bad. These bad days come less frequently as time passes. There is a lot more reasons for my healing, including but not limited to my wife Donna, who thinks she was put on this earth to care for me. GOD bless YOU.
Are you certain that it was caused by pumping gasoline? How long after you started pumping gasoline did your Pd start? Have you, by any chance, had any teeth filled with amalgam? That is the shiny metal filling, If so, how long before your Pd started?
I am 100% positive it was the gas. Remember, gas tanks were under license plates and nobody turned their car off when refueling and we were full serve with no latch to hold the nozzle in the on position. The most common sale was $1. Which they received 2-4 gallons. Today that equivalents to $8-$16. I pumped gas at my families gas station at Boston University from the time I was 13 until I was 21. I was also tested by a homeopathic MD and the test came back that my lead level was 8 times the max recommended for human. I have had over 100 chealations. 40 hyper bar rick oxygen therapies. Lead attaches to your bones and nerves.
As far as how long I have had PD, who knows. Tremors did not start until I was 50.
Teeth are fine. No amalgam.
Please excuse my sense of humour but that was an unusual way of putting on weight! Your answer appears to be quite convincing, but where does it get us?
Knowing what caused our Pd does not help at all.
I have read, just this week, that someone thinks that Pd is caused by our body's inability to protect us from the effects of toxins. In other words, our kidneys, and liver are not working properly, when these toxins get into our organs.
Now that is a thought! this came from Robert Rodgers, Ph.D. [Robert@ParkinsonsRecovery.com]
Where do we go from here?
I think that John Pepper is wanting to share with fellow sufferers what he has learned that has helped him deal with PD. It seems that he has diligently tried to make life better while dealing with this disease. it would do us all some good to read his experiences, which he describes to us and apply it to our selves. It's certianly better than popping a pill or spenidng time feeling sorry for ourselves - both of which I am guilty of.
I have fallen twice while walking my dog. Both times it was while holding his leash and absent mindedly talking to someone without concentrating on the act of restraining him. He lunged at other dogs while I wasn't paying attention. This last time my tibia was fractured and I am having to deal with a leg brace and cane. The good part of this is that it has taken attention away from my usual Parkinson's symptoms and issues. lol.
Anyway, I am going to pay attention to what John has to say to see if I can help myself more besides nutrition, qi gong, and water aerobics. Concentration and meditation is hard for me but much needed. Thanks, John and thanks Norton for alerting me to the postings.
Thanks for your kind words! Lack of concentration does not only affect Pd pateints, it affects everybody over 65. If we don't watch what we are doing, especially when walking, we tend to fall of bump into other objects. Most of the broken bones in my retirement village have been caused by the patient not concentrating on what he/she was doing.
It is so easy to be wise after the event. We all do it.
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