Does anyone have information regarding natural remedies and their success rate ?
there are no 'natural' remedies.
My dad uses the ketogenic diet promoted by Dr Perlmutter in his book Grain Brain, that is helping him a lot with his symptoms and he feels it is stopping his illness progressing. Dr Perlmutter has a lot of videos on youtube and his own site on the internet. We purchased his book from Amazon. Good luck!
try eating less processed foods and reducing sugar . chemical cocktails of house hold cleaners, ,nail varnish remover, bleaches ,air spray, hair spray, and depressing stay in bed day,try fresh air ,wind in your hair,less care
The cells involved in Parkinson's Disease produce dopamine entirely by natural means. It is when these natural means are not accounted for that people end up using artificial means such as drugs instead.
I agree that diet and exercise are very important. Less stress and a positive attitude help as well.
I have decided to take the 'natural ' method of controlling my PD symptoms and do not take any conventional drugs prescribed by neurologists. I DID try them, but found the side effects too scary.
I have a teaspoonful of Chia seeds each day, which stops my constipation, cramps and muscle spasms. I take Mucuna Pruriens, (natural Levadopa), three times a day, with a cup of strong green tea, half an hour before food. I also have one capsule of Lithium Orotate a day, to reduce stress and anxiety. This type of self medicating seems more beneficial to me than when I was taking Elderpryl and Ropinirole. They're not free, obviously, but don't cost a fortune to buy. Some will argue that conventional drugs have been tried, tested and standardised (true), but they still contain a cocktail of ingredients which long-term do potential harm to different organs of the body and can cause horrible side effects. I'm sticking to my way, for now, at least until a drug that can cure this wretched disease is found.
Hi everyone, my GP sent me a letter informing me they were making a small change to my meds i.e., Ralnea Ropinirole XL slow release (been on these for six years) to a more cost effective meds being Eppinix Ropinirole XL slow release . No problem I thought try to save money for NHS - but no......... Started to take the meds on 20th March but oh boy! one week into starting this med I felt as if I had taken two steps backwards in my parkinsons, the effect on my body was not good, walking, balance, light headedness, meds wearing off too quickly etc., GP has now returned me to my original brand of Ropinirole - vast difference. If anyone else has had similar problems, don't feel obliged to accept the 'cheaper' version of meds!!
Has anyone heard or tried ayuverda treatment in kerala india?
Would like to know where did you get the information from regarding the natural things you take and the evidence to support it, please.
I worked as a complimentary therapist for a number of years and have an open mind and am willing to learn of different methods.
Changing the slant a little I spoke to a Chinese herbalist on board a ship he was lecturing on. Explained my circumstances and he said there is no known cure in this country but in China they use the poor tiger. No wonder they are nearly extinct
Looking forward to a response from you
Thank you for your interest. Firstly, I have never really liked taking conventional medication for any length of time, as I believe there are always long term effects on organs in the body. I worry about the neurotoxicity of the Parkinson's meds. On saying that, if there was a pill to cure Parkinson's then I would take it!
I did months of research on the Internet about Mucuna Pruriens. Unfortunately there is very limited medical information out there and I could only find one controlled human trial ever done with Parkinson's patients.. It has been widely used in India for centuries. (Some may argue that is because they couldn't afford to buy expensive drugs). So, armed with all the facts I could find, I began my experiment with MP. Five months on and I'm still tweaking the dosage and recording the results.
As for the Chia seeds......my sister recommended these, for constipation! They also seem to ease the terrible muscle spasms I used to get and also cramp. Just a teaspoonful a day, seems to do the trick.
The Lithium Orotate was not researched properly and I no longer take it, as it can damage your kidneys. Someone on the forum pointed out the danger to me..... my fault for being sloppy and not looking into it thoroughly enough!
I was interested to hear about the conversation you had with the Chinese herbalist. Won't be going down that route though!
As we all suffer in different ways with PD and the drugs can only ease the symptoms, I feel we HAVE to take a certain responsibility for our own condition and find out for ourselves what works and doesn't work. As long as it's done sensibly and you let your GP know what you're doing......fortunately mine is willing to support me, with my experiment.
I'm afraid I haven't supplied you with much scientific evidence for what I'm doing, but if you trawl through medical journals on the Internet, you will be able to find some interesting reading.
Best wishes to you.
Sadly, I have found that after 16-18 years since diagnosis ,zero alternative methods work ,earlier in the disease many forms of non medical treatments do help acupuncture, Natural levodopa from beans ,nordic walking sticks even small trampolines with sidebars that make one move to and fro as well as magnetic stimulation devices , I have heard about them all and my wife has tried many alternative forms of treatment , now the honeymoon period is over and she is very ill mostly from her inability to move and freezing, it is all too sad.
We do have 5 hospitals treating Parkinson's as a speciality disease if you will, in my city and so far zero chance of her getting better .we exercise ,avoid protein at pill time and hope for a better treatment down the road meantime we have to watch chewing, eating & swallowing for her as to not choke.
I wish I could be more optimistic about that type of PD that DBS can not treat aka the non shaky type.
Do all stay on what ever helps you ,as to the fear of leva dopa(Sinemet) with additives or not ,my wife has been on the same dosage for over a decade and does not have any side effects from it ,other then it does not do what it used to do in her earlier course of treatment.
That being said Suduko puzzles and reading seem to help her mind stay sharp and she also has not gotten that Parkinson's lack of facial expression that many acquire. By the way when she is in a freeze walking Ican help get her legs in a trot and she can move quite fast ! She is also able to legally drive a car which makes me feel that parts of the brain still work unfettered by PD ,her testing for response time is as if she has no PD.
An incredible disease and quite unique to each person .
Yes ,I know of this diet if it is the one where one eats certain regulated fats and low carb intake and must weigh all food by grams it includes eggs ,I think even bacon ,those patients in my support group who have stayed with it have been helped in reducing their symptoms ,but because of the way one must eat they dropped out of it probably due to habits ,when one wishes to return to carbs.
Carbs & sweets are so much an addictive much a part of our diet .
I have read most of your posts over the last few months - your wifes PD sounds very much like mine. No tremor, main difficulties being freezing and gait inititation, both of which are gradually becoming more of a problem, and result in some unpredictable falls, especially around the house, when turning etc. Madopar doesn't make much difference to this. I take 100/25 with Entacapone every 3 hours plus CR at night. I have tried adding Rivastigmine pills and patches, and Azilect, but both had bad side effects (mainly nausea) and neither improved this.
I think my driving is OK. On a good day I can win at Scrabble against my partner - we are very competitive! Yes, and exercise - We walk our dog together about an hour each morning and half hour in the late afternoon, my walking outdoors is OK as long as I don't have to stop. We are keen cyclists - currently cycle every other day about 20 miles and do a longer ride once a week when we have a dog-walker.This is only about half the weekly total miles we used to achieve, but we did not have a dog then! It is quite hilly here, so that adds value to the miles. When cycling is the only time I feel "normal".
I am curious as to how you help your wife overcome her freezing. You said. . . "when she is in a freeze walking Ican help get her legs in a trot and she can move quite fast ! "
Does your wife have trouble with handwriting ? This was my very first symptom. But, I am an artist, and can still paint and draw. Different parts of brain used, as these are not automatic movements. However, I can only do this when Madopar is working fully, so very limited durations. I started calligraphy classes a few months ago and have gained some control of my writing again, as long as I think about the shape of one letter at a time. Very very slow, it looks different, but is legible!
It is good that you are able to do as much exercising as you and your friends do ,sadly at this moment we seem to be at a point in time where we have few options as her PD has finally taken off and is hurting her without mercy.
She is approaching this upcoming October ,16 years since her PD Dx and as you are, she is a very accomplished artist and continues to paint for short spurts of time throughout the day.
She did have 2 prominent areas of difficulty that helped us get to the Physician that eventually led to her Dx of PD.
The first was her right arm did not move in concert with her left arm when walking ,the second is a curiosity as to why she could not get up out of a chair and had an unusual hesitation before she could move from a sitting to a standing position.
We do as much exercise as we can (we also have to climb 102 steps to access our home) and she loves crossword puzzles and advanced Suduko games.
Her mind,and it;s cognitive actions is not affected by PD ,her voice even with LSVT training is low recently I think Apple have created an Iphone or smartphone application device which I have seen in trials here at our hospital in New York City that listens to your voice and when it is to low and NOT understandable by others a beep appears in an earbud attached to a patients ear that alerts them to the fact that they cannot be heard.
It always surprises me as well (I do not wish to appear negative) how much she is able to do as compared to other patients in the 3 PD support groups we attend every month at hospital.
Driving so far is not an issue, but no longer is it possible for her in our large city. We drive on visits to her mom in a small city far away from New York City with little road traffic.
My wife has used her strange calligraphy related to PD which looks quite like Sanskrit to her advantage in her artwork. a kind of Scraffiti .
Thanks for communicating with me on this forum , we go to a very top notched PD Neurologist in a week it is at the same facility that many international folks go for PD treatment who are very familiar with my wife's history and I am happy to report back here what we may all come up with.
Yes! her PD which as you have mentioned about your self creates no tremors ,shaking or dystonia but stops movement without warning & falling ,thankful for us she sleeps all night but with the oft mentioned nighmares and mild hallucinations, forgotten by her ,upon waking up.
Good wishes to you in the UK from the start of our war dead Memorial day holiday here is the States,
I forgot to add that my wife is just about on the same medications & dosage as you are taking.
Hi Twinks and Mike
Thanks for letting me know what your regime is when using complimentary therapy. Most of the things that you use I have never heard of but they will be out there albeit if in the ethos.
I was interested in what you said about dopamine and how it has given over the years and amazingly the same strength. You also sound a very caring and supportive man towards your wife. I have been diagnosed for three years now and I try and get my husband involved because I think he needs to understand how and in which way if affects people. My only problem is that my husbands coping method is to ignore the problem - like when I told him I was in labour - he knocked out a fire place! (I liked that fire place!) i do not think for one minute he doesn't care. His mind just, I suppose protects him until such times he can cope with the problem. I am just the opposite. If I saw someone drowning I would be the first to dive in; not that I would be much good. I am not a strong swimmer and would probably drown them in my attempts to save them. Well, we are all different and the marriage is still going after 48years so it cant be bad.
Thinking of you both
I had applied to your comment earlier but so far my reply has not appeared, I will wait a few days to see if it does appear . If not I will address your comments once again.
Recently my wife was given a 100% raise in her dopamine medications as well as being put on several new medicines for extremely low blood pressure problems which forced her to be 19 days in hospital, till she was adjusted ,we are both going through this together and of course trying to figure out if new problems as side effects of the new drugs are at all worth it..
I am sad to say lately Parkinson's has been showing us who is boss at year 16 since Dx.
I am optimistic we will find a good balance in the drug protocol and Physical Therapy plus my wifes great attitude not to give in to PD will have her doing well..
Mike from NYC
Sorry to hear your wife is going through a bad patch at the moment and hope you can both get through it quickly, more meds always seem to bring new issues but hopefully they won't be to bad or last to long.
Live well. Cc
Hello to the Cheshire Cat,
My wife due to advanced PD is losing the bodies natural ability to regulate blood pressure ,the treatment for extreme low blood pressure is in my opinion quite primitive in it's nature , a steroid to retain water ,salt tablets and increased water intake. The raise in sinemet however has seemed to stop her PD related nightmares & acting our dreams. I shall report on her progress from time to time as this issue is common for Parkinson's patient .
She remains weak and is using a wheelchair till she regains strength.
Thanks for your concern,