Life

[Beckey]

If one finally does stumble upon a drug that works at dimming the symptoms, however temporarily, is it possible to live independently?

[JohnPepper]

Hi Beckey. No! I really don't think so, for the following reasons: None of the current medications have any affect on the progression of Pd. That means that we will continue to progressively get worse, regardless of which medication we take.

All medication is toxic to our systems, and most, if not all, have serious side effects.

If we take any medication we must therefore expect to not only continue to have Pd but to also have to deal with the side effects. The medication we take to deal with the side effects also have side effects and so we go on.

WE do know that MAO-b inhibitors help us to get more use out of the dopamine we already have in our brain, and those medications are purported to be neuro protective. So that is the route I was lucky enough to have taken and together with the fast walking I have managed to overcome the movement symptoms of Pd.

I personally don't think that a cure for Pd will ever find its way onto the market, as there are too many vested interests in businesses making a lot of money out of selling useless treatments.

So you pays your money and you takes your choice.

Good luck

John

[JeanieBeanie in reply to JohnPepper]

Which MAO-b inhibitor do you take and what dosage?

[JohnPepper in reply to JeanieBeanie]

Hi Jeanie. I have not needed to take any Pd medication since 2002. I took Eldepryl, otherwise known as Selegiline, for 8 years before that.

John

[sharlacher in reply to JohnPepper]

How are you able not to take any medicine and can you explain your walking routine

[JohnPepper in reply to sharlacher]

Hi sharlacher I have managed to reverse my Pd symptoms! I have not been cured! I have to walk 3 times a week for 1 hour at a fast pace. I avoid all stress and I have a positive attitude towards Pd. I also keep my brain very active.

If you want to know more about what I do, which is a fairly long story, you should go to my website - reverseparkinsons.net and read all the info I have put there.

Kind regards

John

[racerCP in reply to JohnPepper]

John, are you saying I have a limited amount of time to live independently? I'm one year DX, living independently, exercising, traveling frequently, not taking medication. I also live on the third floor of a brownstone in a large city. Do you think I should find living accommodations with more assistance like an elevator and a concierge? I love my present home, location and the entertainment and cultural activities within easy walking distance. But I think planning for a smooth transition is best done early. I get the impression you live independently or aat least feel capable of it. Of course I exercise a lot as you know through our previous communications.

[JohnPepper in reply to racerCP]

Hi Racer. I cannot say what your personal prognosis is. I am not a doctor. I am only passing on to you, my knowledge of Pd medication and what can and does help Pd patients to manage their Pd better.

Living upstairs has a distinct advantage for Pd patients. You have to climb stairs, which is very good exercise and very beneficial for Pd. Not taking any Pd medication is also good, because no Pd medication does anything to slow down the progression of Pd. They all have side effects, which may or may not affect you personally.

Only when you find that you are unable to climb those stairs should you consider moving home. I live with my new wife in a retirement village, which has assisted living facilities and frail care, for when I may need it. I am 80 years old no and am looking forward to many more years of healthy activity. Try to understand the logic behind the walking regimen I have recommended to everybody.

Kind regards

John

[racerCP in reply to JohnPepper]

John, you know I fast walk three to four miles at least 3 times a week plus, plus dance, exercise classes and swim. Since DX a year and a half ago, with no meds nor any suggested by my neuros, I do notice a slight progression in tremor, lack of concentration and small-motor skills. I guess I should not project into a future that fills me with trepidation. Your response to wait until I feel less able to keep up with my busy life makes sense, especially because I love where and how I live right now. Thank you for responding and your encouraging words. Have you read that late age onset PD progresses more rapidly than early onset PD?

[margie in reply to racerCP]

It took many years before I was diagnosed correctly in 2004, but I began with PD symptoms since 1987. I will be coming up on my 66th birthday. Exercise and medication taken on time has helped me considerably. I have very mild tremors and shuffle a little. I ride a 3 wheel tricycle, meditate, and exercise on do tai chi and to look at me you would think- she doesn't look like she has PD. I haven't been able to smell for years and I loose my balance. I joined a choir, I love to dance and I also golf some. I do everything that I can. By the way I had a stroke in 2004 ( after PD diagnosis) and was paralyzed on my left side. It took a year of physical therapy to regain 99% of me back.

I try to remain cheerful and do as much as possible. I also have dystonia of the feet and calves and get botox injections for that every 3 months. I always try to be upbeat and live as best as I possibly can. I feel Blessed to be alive. I have bars in the shower and tub area for safety, I have a power wheel chair when needed. I use a cane. I live in a one level home, no stairs. No carpet, no rugs unless taped down.

Margie

[soup]

Beckie is your question about a cure or about independent living?

[Beckey in reply to soup]

Oh, I know a cure isn't in the offing, but I'm wondering if I stand a chance at a decent quality of life once I get stabilized med-wise.

[soup in reply to Beckey]

I am assuming you are still in the early stages of trying medications so, if you have the correct diagnosis Beckey, it most definitely will improve you quality of life.

It looks as though your mood is very low which can be a symptom of Parkinson's and you could also get help for that.

Once you are properly medicated your improved mobility will allow you to increase your exercise and get back into the swing of things again. Don't despair, keep trying till you get a result.

[Beckey in reply to soup]

Thanks so much.

[paddyfields]

On diagnosis, when I asked my neuro what the prognosis was he said "10-15 years" by which he meant the time the drugs could militate against the symptoms. It rather depends on your age, general fitness and the Individual's make up anyway what state they are in at any one time and how well the drugs work. Make sure your neuro specialises in movement disorders. It has been called the designer disease because of the varied way it presents itself, e.g. people think of tremor but 30% of people never have tremor.However, I have heard the saying "honeymoon phase" meaning 5 years during which for most people their symptoms are pretty well controlled. There are some who go down hill quickly, some who remain in the first stage for 10 years or more, and 25% who after death are found not have had PD at all but some other similar disease which must skew the statistics.. Then there is deep brain stimulation - more commonly performed in the US than UK - cynics say because insurance finds it cheaper than long-term meds

Regular exercise such as fast walking, cycling and tai chi or yoga all help with the various effects of PD.

Its a personal judgement as to when to start meds but I think in terms of taking as little medication as I need to continue with the exercise. Its harder to unlearn negative habits than to keep them at bay.

.Having said that, if you are of a certain age and are in a position now to make sure your home will cater for any eventuality it can l give the peace of mind to make the most of however you are.

Best wishes

[Hidden in reply to paddyfields]

Previous to walking four miles, 3 to 4 X per week, I could not brush my teeth with my right hand. (freezing, weak, no control). Now that is not the case. I can brush my teeth normally, but still weak. Greatly improved condition.

I am past two years DX. I take no medicine. I have tried: diet, ketogenics, coconut oil, vitamins NO improvement. My wife says she noticed slight improvement when I took CO. I stopped CO and turned to exercise.

Copy from post by JohnPepper:

GDNF (Glial Derived Neurotrophic Factor) was discovered way back in 1993. In 2005, a study was carried out on human beings in Bristol, England, on 7 patients. One of those patients died from an unrelated heart problem but the condition of all the others managed to improve quite considerably. This story about GDNF has been on and off ever since 2005, with the manufacturers stopping manufacture of the GDNF and the stopping of all trials. Then pressure was brought to bear on the manufacturer to start producing the GDNF again and then new trials continued, but with no promising results so far.

In 2006, at the 1st World Parkinson's Congress, held in Washington DC, it was announced by Doctor Beth Fisher that human beings produce this GDNF, in the brain, when they do certain types of energetic exercise. The studies carried out by Dr Fisher proved that the condition of all those taking part improved considerably, due to the damage to the brain cells being repaired by the GDNF.

[Beckey in reply to Hidden]

Would that be any kind of vigorous exercise that stimulates production of GDNF -- brisk walking, treadmill, running, etc?

[Hidden in reply to Beckey]

yes

[Beckey in reply to paddyfields]

Thanks, "Paddy." Yes, I am finding tai chi very helpful -- also yoga. I'm experimenting with aerobic exercise that doesn't stress my woebegone knees.

[JohnPepper]

Hi RoyProp. Thanks for passing this info on to others. I don't care whether my name is mentioned or not, it is the message that is so vitally important.

As far as medication is concerned, I work more on what I have read about it than on what I have learned through usage.

All medication is toxic to our systems. As such, we should avoid taking it whenever possible. If the medication works for you then take it, but it should be after you have tried doing fast walking and it did not work. When I say tried, I mean for at least 6 months and at your Highest effort level.

I know that many people are loath to do walking. It is an old-fashioned way of getting around and it is boring. But hey guys, our lives are at stake here! It means the difference between living a normal life and going downhill at varying rates, depending on your own circumstances.

Why not give fast walking your best shot, for at least 6 months, and better still for a whole year. If it does nothing for your Pd or your overall health, I will be very surprised.

Good luck everybody

John

[DebiChris in reply to JohnPepper]

How can you do this when the person freezes sometimes. My boyfriend was getting dyskenisia so he meds were reduced. The dyskenisia stopped but now he is stiff and sometimes just stands in place for 15 minutes or so. I told him about the walking fast thing so we are going to do that. He rides a stationary bike 3 or 4 times a week and also has a home gym type weight machine he uses. He is starting to get down and wishes sometimes that he would die He was diagnosed 8 or 9 years ago and it still working as a auto mechanic but it is getting harder for him to do things.

[Hidden in reply to DebiChris]

DebiChris, say to your boyfriend that we here at HU/PM are here for him. I hope his desire to die was a casual remark. I was a Telephone Crisis Counselor at one time. Direct his attention to self-direction. Discuss, get him talking about his options and what he may do for himself. Riding a stationary bike must be at certain level of effort and time. Continue to be understanding and supportive. Not being a director or trying to order or force him into a direction. Walking is a positive. His condition sounds like Tremor Dominant version. He may very well have many years of mobility and reasonable health.

[DebiChris in reply to Hidden]

Thank you RoyProp. He is feeling better I think so anyway!

He has a stationary bike and does use it often and also a at home gym. He does not have tremors but is ridged. We are going to try a new doctor that was recommended by a friend. This Doctor is a specialist at Rush hospital in Chicago. They have one of the best care for PD. This doctor is a movement disorder doctor and also a researcher

[Hidden in reply to DebiChris]

He was diag 8-9 years earlier. I have learned that a minimum of five years from first diag might the neuro estimate, predict future. I have only read that each patient's experience and outcome are vastly different.

That is not what I want to hear. I want a 'handle' on what to prepare for.

Not a recommendation, only my thoughts on his situation.

Ask the neuro to help him prepare. Money may better be spent. Ask: Do I have the PIGD form? Based on symptom history, what, where and when should I expect? If the best I can expect from meds is already done that,, been there,, exercise is my best use of funds. Saving for the future is now paramount.

God bless you, your husband and all us shaky (or stiff) disciples.

[JohnPepper in reply to DebiChris]

Hi Debbie. I assume you are talking about him freezing, which is his brain's inability to get his legs to move.

I am not a doctor but I have dealt with this very often at Parkinson's support group meetings.

What I do is first of all, hold the patient's left arm in my right arm. Then I ask him to show me how strong his muscles still are. I ask him to stand up on his toes. They normally can all do that. Then I ask him to stand on his right leg and put his left leg straight out in front of him, as high as it will go. Then I ask him to do the same with the other leg. I then ask him if he will show me how far up he can swing his arms.

After that, both you and he will know that he is capable of moving his arms and legs in every way he needs to do when he is walking.

The difference between moving his arms and legs independently and walking normally is that the walking is controlled by his subconscious brain and the other movements were controlled by his conscious brain.

The subconscious brain is no longer capable of communicating with his legs. But the conscious brain is.

When he freezes he should first of all relax and stop trying to WILL HIMSELF to walk. He should then CONSCIOUSLY place his weight on his right leg and lift his left knee up so that his left foot is off the ground. Then do the same with the other leg.

That will have shown him that he is capable of doing everything with his conscious brain. So what he has to start doing now is to walk, preferably with someone holding his left arm so that he can't fall, and then proceed to place his weight on his right leg and then lift the left leg off the ground and move forward and place the left heel firmly on the ground in front of him, and then lift the right leg off the ground and move it forward as far as possible and place the right heel FIRMLY on the ground. He is now CONSCIOUSLY WALKING. He must continue for the rest of his life consciously walking in this way.

It is a nuisance I know, but it is better than not being able to walk at all.

I have been doing this for the past 20 years and it is almost as if I am doing it the old way, but I am not. The moment that I stop thinking about what I am doing I revert back to shuffling and tripping over.

Try it and let me know how it goes.

Good luck!

John

[DebiChris in reply to JohnPepper]

Thanks John, I just read this post now. I will print out your advice and show it to my boyfriend

[JohnPepper in reply to DebiChris]

Hi DebiChris. Good luck! Don't stop practicing the 'Conscious Control' of the movement. He has to practice it every time he walks, in the house, outdoors, EVERYWHERE! It must become second nature to him from now on because the Pd is not going to go away. But the more he practices it the stronger he will get.

The ideal for him will be to WALK AS FAST AS HE CAN FOR 1 HOUR 3 TIMES A WEEK! Obviously he will not be able to walk very fast to start off with, nor will he be able to walk for 1 hour, non-stop! He should start to walk for 10 minutes, and build up by a further 5 minutes every 2nd week until he reaches 1 hour. That is the GOAL!

Good luck

John

[JohnPepper in reply to DebiChris]

Hi Debi. Your boyfriend needs to learn how to control his walking by using his conscious brain. I have done this many times at Parkinson's Support Group meetings.

I 1st of all I tell the patient to relax. Then I hold the patient's left arm in my right arm. I then ask him to show me how fit he still is by asking him to stand up on his toes, which everybody has so far been able to do. I then ask him to place his body weight on his right leg and then lift his left leg straight out in front of him, as far as he can. Most people do it better than I am able to do. Then I ask him to do the same with his right leg, remembering first of all to put the left leg back down first.

Then I ask him to show me how far he is able to swing his arms up and down. Everybody so far has passed these tests.

Then I point out to him that he is now aware that there is nothing wrong with his arms and legs; the problem is that his subconscious mind is unable to communicate with his limbs properly. When we walk, we use our subconscious brain to control that movement. We learned how to walk when we were small children and all the control of those movements was committed to the subconscious brain. Now that brain cannot function properly with the Pd.

Fortunately we are still able to use our conscious brain to control any movements we want to make, but that is not as easy as doing it subconsciously. We have to get used to this new FACT OF LIFE. We have Pd and any movement that is controlled by the subconscious brain is likely to be affected by the Pd. Writing, running, skiing, bringing food to our mouth, chewing food, swallowing food and many other movements are all controlled by the subconscious brain and they are all likely to give us problems.

Next I want you to hold his left arm in your right arm and ask him to relax properly, which you will be able to feel from his arm. When he is relaxed I want you to ask him to consciously put his weight on his right foot and lift the left foot off the ground and push the leg forward and land hard onto the LEFT HEEL. Then move the right leg in the same way, landing hard on the right heel.

I have not had one single person, man or woman, being unable to do this. If he cannot do it it will because he is still trying to will himself to walk. He must consciously lift each leg up and move it forward and land on the heel. If he just thinks about placing that heel on the ground he will manage to do this. He has to stop willing himself to walk and concentrate hard on placing htat heel firmly on the ground.

As he practices this he will also have to remember, at some stage, to swing his arms etc.

Good luck. Let me know how it goes.

Kind regards

John