What will be my predominant symptoms in the next six months? In the next twelve months?
As you can see I have tremor dominant form of PD (right hand and arm). I was diagnosed 18 months earlier. I do not take any medications. These other typical PD symptoms I have are easy to live with. What will progression of this disease do to me in the near term? The long term? When will medicating my symptoms become mandatory?
Hello Roy Prop, although nobody can tell your fortune, it does rather depend on you. You have a condition which will progress and access to medications which will alleviate the symptoms of the disease. As well as all the good work you are probably doing with a balanced diet, supplements, reducing stress and taking exercise I must turn the question back on you.
What will you be prepared to do to help yourself in six months time? Will you start the medications which will help you to stay active and part of the community?
Well unless you can find the cause,which would halt your progression,its highly probable that you will get worse.Perhaps you would be better able to help yourself,by introducing supportive medication.My choice, well I would rather be able to jump on the bus ,than have to sit on the couch all day,for me its as simple as it is complex.You make your own choices.
There's two schools of thought. One is that of your first replier, which is to take medicine to maintain an almost normal life style. The second is, "less is best," taking only what you need to function at an acceptable level, because the medication may bring on side effects, such as dyskenisia. My wife had Parkinson's, and in retrospect, I wish we had subscribed to the "less is best" theory.
I posted earlier in a reply but for some reason it is no longer here, did anyone read it?
no, did not see your comment
I agree with you . . Though I was diagnosed with PD in July 2010 ; I was perfectly alright with my daily exercise, walking & yoga without any medicine till Dec 2012. You know PD affects differently with each individual.
During Jan -Feb -Mar 2013 , I started having walking difficulties , fatigue ,numbness, slight tremor in left hand whenever I am under stress and pain in the hip region . I consulted many Neurologists , each one telling me different problem & solution ; some Dr; told me that it is MND , some told me it is MS , some told me Spine problem etc etc . One Neurosurgeon categorically told me that it is just PD , not to waste time going to multiple consultation and advised me to go for Ayurvedic Treatment for the time being ; avoid / delay allopathy as far as possible . He advised me to go to Vaidyaratnam at Thrissur in Kerala ( Land of Ayurveda) INDIA ..
Infact I got admitted in Vaidyaratnam at Thrissur in Kerala on 1st May 2013 ,visit : vaidyaratnammooss.com/ , took Ayurvedic treatment for 26 days .Shirodhara, Bundle Massage , Pilchill etc . Here I came across Kapikachhu ( Mucuna Pruriens ) & Ashwagandharishta . Infact I thank that Neurologist & vaidyaratnam for bringing me back to life . You can order directly on Vaidyaratnam ; they would courier worldwide by DHL . Infact many American & European PD patients come here for treatment every year .
There is also ON & OFF -time with Ayurvedic Medicine , same as Allopathic L-Dopa ; L-Dopa study study shows that it damages nerves & kills cells : docroberts.com/ar-26-c-8-na....
For your Info :
By the grace of God ; I can still drive car , scooter , ride bicycle on public roads to nearby work ( Banks, post office, vegetable market, grocery shops etc ) / Gym-cycle with rowing cross bar for 15 Min in the after noon , 2 Kms walking in the morning & evening , regular 13 Surya Namaskara & stretching Yoga ( one Hr each ) during early morning and evening. But becomes stiff ; by late evening onwards ; so I sleep - off , by 9.30 PM ; wake up 4.15 AM to free exercise , yoga , walking ; then I will be more normal.
I am on following Medicine :
*** Important : Always Kapikachhu should be taken in empty stomach ; allow 30 Min - 60 Min ( depends from person to person ) to start action.
Ayurvedic : Kapikachhu : 1TBS One hr before Breakfast 8.00AM -1TBS One hr before Lunch 12 Noon- 1TBS One hr before Dinner 5.30 PM
I feel perfectly normal till 10.30 AM ; there after slowly stiffens ; After Noon dosage works till 3.00PM ;, 5.30 PM dosage work for max till 7.30 PM ; .slowly stiffens,
15ml each mix of Ashwagandharishta , After Breakfast & Lunch.
If you need any more info , please don't hesitate to write to me. ramanath.tarekere@gmail.com
GOD BLESS YOU & YOUR FAMILY
Again I see Doc Roberts quoted but I would like to know which of his qualifications is the doctor part and does that make him medically qualified?
DC / QME = Doctor of Chiropractic Qualified Medical Evaluator
Is a medical evaluator qualified to give medical advice across the whole spectrum of problems including neurology or only with their speciality?
What does he know about things other than chiropractice
I need to do more research on QME, for now I assume he is like an insurance adjuster. If it appears to be a broken arm, that is what his report will say. If it appears to be a virus or bacteria, that is what his report will say. Anybody else know the answer?
The idea of Sinemet bringing on side effects such as dyskenisia is not a proven fact and is in fact refuted on other PD sites, what in fact happens is that the patient refuses to take the sinemet untill later in the disease when the disease itself is causing Dyskenisia, in other words they wait until the medication has less effectiveness because the illness has gotten worse.
As I said, there's two schools of thought. And as is so often the case, people think their side is
right, and nothing else matters. Spend a little time doing research. It's out there. Then come to your own conclusion.
Hi arwenmark. I dispute everything you say here. Pd does not cause dyskinesia. If I am wrong, I will willingly apologize. If you can tell me where it has been proven that Pd causes diskinesia, then please do so!
John
So, my tremors are not attributed to dyskinesia. After I start medication I can call it dyskinesia and blame the med.
Tremors and dyskinesia are different. Take a look at this reference. It might help you make decisions.
parkinson.org/Patients/Pati...
A very simplistic analogy to dyskinesia was given to me at the World Parkinson's Congress. Imagine your brain functions a bit like a once for dopamine. When you still have relatively good function, the excess of dopamine derived from L Dopa medication is buffered by the functioning cells, like a sponge soaking up water. However, as the sponge gets smaller it is less able to soak up the water ie the dopamine levels go too high and dyskinesia is the result.
The way I look at it is if you wait until your sponge is very small you will get dyskinesia sooner after beginning treatment than if you had taken it earlier. It is a function of the disease, not the treatment.
The real life situation is more complicated than just that but the analogy holds well. Also, not everybody gets dyskinesia, it's only a proportion. As yet they can't predict who will and who won't.
6 of one, half a dozen the other. Simply a description of uncontrolled body movement. Medication or no medication.
But what other symptoms could treatment help you with?
If it is just an annoying tremor at the moment then, of course, treat when you are ready and not before. But your original question asked about the future and a future with drugs included would seem less bleak than one without.
Hi Soup and RoyProp. Dyskinesia is not a tremor. It is unwanted movement of the limbs and head, Tremors are shakes, rather than movements. It is not nit-picking. Tremors are more like vibrations of the hands, mainly. A person with dyskinesia can't control the movements of his/her arms, legs and head. They go every which way, until the oversupply of dopamine has been used up.
I like your analogy Soup, it is easy to understand.
I question the need to take an overdose of levodopa medication, when it causes dyskinesia? is it necessary in order to get any benefit from it? What do you do when you cannot take enough levodopa to get any benefit? I would rather battle on without levodopa medication, only using an MAO-b inhibitor, which allows you to retain the dopamine you already have. I suppose you do get to the stage where you just don't have enough dopamine to be able to move properly, but at least you would not have the dyskinesia.
Hard walking produces GDNF in the brain, which repairs the damaged brain cells, which keeps you going a lot longer.
John
There is no need to take an overdose but in order to get the therapeutic dose without going over that is a tricky conundrum. That is why so many Controlled Release preparations, dou-dopa infusions, small but frequent doses and all manner of variations are tried.
I understand the benefits of all the things you mentioned but I have also spoken to several patients who count the dyskinesias as a small price to pay for being free of their other symptoms. It all comes down to personal choice after all.
John, I'm assuming it takes some time to get the optimum effects out of walking.
Hi Marion. Yes! You have hit the nail on the head. There is no quick-fix for Pd! When I started walking fast, after having been going to the gym for 90 minutes every day and seeing my fitness levels continuing to get worse, you cannot believe what it did for my self-image when I realized that my times for walking had actually improved! Up until then, my performance at everything I had done, got worse.
That was the turning point in my Pd story. Up until then, none of my symptoms had got better. I had not yet found ways to overcome any of my movement problems, but I had suddenly seen HOPE ON THE HORIZON. Yes! It was that hope that got me thinking that I could beat this thing. If I was able to improve my walking performance then I was able to find ways of solving my problems. IT IS THE LOSS OF HOPE THAT MAKES US GIVE-IN.
Start walking fast for as far as you can go! Then make a record of how far you walked! Then record the time it took you to walk that far! Then look back at that record, three months later, and see how you have improved, then you will see HOPE facing you strong and clear. You will never give up after that!
Good luck
John
I walk with a friend and we were walking for one hour--unfortunately our one hour trip is now taking only 50 minutes to walk the same distance and route--I'm going to have to convince her to increase our walk to get back to 1 hr!
Hi Marion. Well done! That means you are getting a lot fitter! Please don't overdo it. How long have you been walking for one hour?
John
Soup, thanks for this great reference. It has been a great concern of mine if I was making things worse by taking sinemet. I feel a lot more comfortable about it now!
I don't know if you visit this site or not forum.parkinson.org/index.p... But the feeling of Dr. Okun there and the site overall is that sinemet is not toxic and is not responsible in most cases for the worsening of symptoms but rather the disease itself is. That is what I was trying to get across. By the way I dispute all the things you keep posing on here about reversing PD etc.
Let no one be confused, I never post "posing on here about reversing PD"
I was replying to John Pepper, not you, sorry if that was not clear. I find it odd that he also says ,"Don't think you have to do as other people tell you." When someone says JUMP, don't ask HOW HIGH? Ask WHY? While he is telling people to do quite a few things.
I knew who you referred to but for the casual reader, let not one be confused.
If anything reversed PD, the halls would ring with the shouts of joy and we would read many statements from those affected.
Just this last week, I saw a posting (not HU) claiming to have a cure dating back to the '40s.
For me, 1940 is too hard to believe. But I do take "with a grain of salt" some OTHER advice (what if they were right, and I had not), Exercise, Coconut Oil, MCT Oil, Low Carb/No Sugar, Modified Ketogenic Diet,
For me, I have added back into my diet the carbs and the sugar but with moderation. While strictly low carb, no sugar I lost a lot of weight.
During my annual exam and blood work, doc asked how many calories a day? I said I did not count calories. Since reverting back to a more palatable diet, carbs and sugars in moderation, I have not regained weight. Well a little and the gain stopped at my body's set point for normal weight. Body mass be damned.
Hi RoyProp. There is no cure available for Pd but it can be reversed. At the 1st World Parkinson's Congress, held in Washington DC, Dr Beth Fisher announced the results of studies done on Pd patients doing various types of energetic exercise. The best results were obtained by walking hard for one hour, three times a week. The brain produces a substance called GDNF (Glial Derived Neurotrophic Factor), which repairs the damaged brain cells, which then start to produce dopamine again. You can get the results of those studies on Google.
If you look at my website reverseparkinsons.net you can read all about this news about GDNF and why it has never reached the market. I sincerely believe that doctors and the pharmaceutical industry do not want a cure for any illness as it would be very bad for business. You cannot blame them, it is their livelihood. How many cures have come onto the market, ever? One would have to assume that the scientists were not very good, if you judge them by their results.
John
Hi arwenmark. This is a forum, a place to air ones views. I merely give you my own personal experience and what I have been told, or have read, as to why my Pd has been reversed. It is all fact, not imagination. If you have read my book, it tells the whole story. I do not write here in order to sell my book, I give everybody some idea of what CAN BE DONE, if you so choose to do it. What you do is your choice!
The medical profession are very touchy about side effects of medication, and saying that Pd is the cause of dyskinesia is like blaming the car, when the driver goes too fast.
My remarks about medication relates to many patients being over-medicated, because that is what the doctor told them to take. If the medication does not help you, but makes you worse, then stop taking it. The doctor can make mistakes! You have the right to question your doctor. He is not God, he is a human being. He makes mistakes the same as we all do!
John
Hi RoyProp. I am not a fortune teller, nor am I a doctor. Why don't you make a decision to take your future into your own hands and start a new lifestyle, beginning with a regimen of exercise, medication, stress management, healthy diet and attitude adjustment. All of these, I believe, have a direct influence on the progression of Pd. If you feel that you are unable to do any exercise; or you MUST take whatever medication your doctor prescribes; or you cannot do anything about the things that cause you stress; or you have no control over the food you eat; or you think your attitude is just fine, then I cannot help you. Read up all you can about exercise and its affect on Pd. Read up on GDNF and how it repairs the damaged brain cells. Read up on MAO-b inhibitors and how they help your brain to retain more of the dopamine it already has, rather than take levodopa tablets to produce the dopamine you need. Read up on LCHF, low carb high fat diet. I have had a lot of benefit from all these things. We are not all alike, but none of us is totally different. Your future is in YOUR hands! Don't think you have to do as other people tell you. Look at everything and make your own decisions. When someone says JUMP, don't ask HOW HIGH? Ask WHY?
John
Fortune telling is contracting your future to a stranger,who knows nothing about your life,your character,your problems.
Just suppose.
Good fortune,there will be a cure for PD,even better, its entirely in your hands.Suppose that were the case.Your not given a pill your given your life back, ownership is yours,all you have to do is eat the right food and exercise.Its guaranteed to work,how many people would be cured.
Most posts about medications are seeking help advice support,few if any are about the miracle of medication.Your future is in your hands. You've got an illness that more than many others can benefit from self management.
Excer what,I cant spell it ,never mind be bothered to do it.Gyms cycles swimming pools,dance classes. I've got PD ,every day is a struggle,isn't that exercise. I've got to look after myself,I don't want to have a heart attack.
I’m joking ,not intending to undermine the value of any of these contributions, but ultimately we are talking about Self -Management .Finding the right path for you and the right people to look after you is the hardest part.
Medication or remedies, it’s what works for you that’s right for you. Sharing what you believe in is a good thing and everyone should be encouraged to do that.
Pill popping is necessary support for most of us, but it has been shown that above everything else exercise has great benefits for PwP. Now I’m not a particularly good example as I tend to be inconsistent but my attitude to exercise is ‘something is better than nothing’. I have to make do with the urban gym it’s free and we all have access 24/7. Go get the paper, walking up / down stairs rather than taking a lift or escalator,
travelling on a bus – try going up stairs when it’s moving, great for balance don’t phone a friend pop over and talk face to face. Go for a lunch-break walk. You get the idea, something is better than nothing.
Keep on moving! When you can! and in whatever way you can safely do so.
Your body is actually great communicator of what it needs we all need to improve our listening skills,to understand our health theres much to learn about living well with illness with hope for the future.
YES I am still on Coconut Oil, aka CO
40 Hz physioacoustic vibrations improved motor impairments in Parkinson’s disease in a double-blinded randomized control trial.
Hell yes, I'm a parkie! R-U-1-2?
Mucuna questions
Hi, I may be bored with the questions but I know I will get the answers here.
