if so, what are the improved symptoms and what was the alternative therapy?
Has any person with parkinsons experience... - Cure Parkinson's
Has any person with parkinsons experienced a significant, sustainable reversal of symptoms when trying an alternative therapy?
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Norton1
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No. But i am trying Bowen therapy.
I'm trying a number of therapies, also starting Bowen this week.
This is a monster in my brain disease. It is not going to be easy to evict him. So I'll throw everything I can at him and hope I can unseat him.
I take 3 Sinemet 3 times daily with 1 REquip 6mg also 3 times daily
Some other therapies I do:
Acupuncture- both for pain and sedation
Chiropratic- same, with some cranial work to increase O2 flow.
Nutrition- supplementation with enzymes, vitamins, antioxidants, herbs-Mucuna Pruriens, aminos, Omega- DHA
Energy - REiki- Charkra- balancing, Tai Chi
John Colemans' protocol- rehydration
Consistent Exercise and a conscious diet
meditations- various intents
Journaling, I tend to write weak tea poetry to calm the tension...
Does it work- well I still have symptoms 8 years on, sometimes I think I'm cured sometimes I think I'm dying rapidly and welcome it. When I feel good I feel good, when I feel bad no Rx helps
Does it cost a lot? No, I ask for reduced prices and usually get a median starting rate but after chatting about leaving for lack of funds, most therapists will help....
Hello,
i have to say that i am impressed with your determination to feel well again. However, when you say somedays you think you are cured and others that you are dying rapidly the thought occured to me that by trying so many therapies at the same time it would be difficult to know what is working and what is not. would it be better to take one therapy at a time? may i ask what symptoms you have and can you connect the good times with a therapy?
thank you for an interesting input.
Norton
My symptoms are: rigidity, slowness, "brain fog", insomnia, dyskinesa(?), depression, severe fatigue...Or in layman's terms I am Stupid, Slow And Awkward.
Yes I agree I would like to determine what causes my good days, but I don't know what causes my bad days, so? Just like my Neurologist I'll try anything to feel better.
I am not a clinical trail, I'm just trying to live a productive and somewhat happy life.
When I can think clearly, I'll let you know
thank you for your interest!
Thank you for getting back to us with with your symptoms. I hope that your good days increase at the expense of your bad days.
Regards
Norton
Never heard the symptoms described like you just did, Stupid, slow and awkward. But sounds like a good way to describe my symptoms to anyone who asked. Love the humor in it and easy for non-parkies to understand. No offense, non-parkies out there
at present I am taking my husband who has both parkie and dementia to a naturopath. Honestly I can really see a small but positive improvement. So will continue even though we know there is no cure - but better than seeing his deterioration. Joan
Hello jjmoore,
What a wonderful way of looking at your husbands situation. Whilst there may not be a cure a slowing down or stopping its progress would be a marvellous acheivement. Please keep us informed, because surely nutrition must be at the heart of matters.
Norton
There is another question on this website all about an alternative treatment - in fact 2 treatments that are being promoted by someone with he username "annh", These do at least sound interesting.
Also annh is a PD sufferer and claims benefit from one of these treatmenmts (Low Dose Naltrewxone) to have been effective for her. She has yet to try the other known as "Microdose Therapy"
The question on the Parkinsons community is :-
"Has anyone heard of "Microdose Therapy", by Dr. Stenberg of the Helen Foundation? It is too good to be true."
I checked out the Website and its appears that they discovered when treating people for arthritis who also have PD the cortisone they where administering had a positive effect on the PD symptoms (in short). LDN is something different again. I want to try something - annh has offered her advice but I sense a bit of a cautionary note from the community. I liked her explanation for the cause of PD due to inflammation and the brains inability to correct it. I'm new to this site and looking for answers and solutions (aren't we all) - I value your input - cheers.
no on the contrary
accupuncture--sustained tear in hip joing
something similar--sustained hernia requiring surgery
I could go on
thank you for reminding us of these treatments expressed elsewhere on this site. The LDN I well documented as helping MS sufferers, but I am not so sure if it helps those of Us with Parkinson's. I shall have to do more research on this. As for the micro dose treatment, I wonder it is within range of financial boundaries of us with low incomes.
Norton
When I was diagnosed five years ago, it took the MDS no more than five seconds to tell me I have PD. A year later, after one month of cycling at 80-90 rpm for an hour or more 4-6 days per week, he told me that if he didn't know I have PD he wouldn't diagnose it. We have also reduced my meds from 8mg of ReQuip XL to 4 mg and stopped taking Azilect. He tells me that he expected that after this amount of time he had expected I would be at stage 2, but I'm still firmly in stage 1. After climbing Mt. Kilimanjaro in 2011 and to Annapurna Base Camp in Nepal in 2012, we are tentatively planning to hike the Inca trail to Machu Picchu in 2013, health permitting. See pedalingforparkinsons.org
Hello NanCyclist,,
What a truly heartening post in reply to my question. Clearly, the cycling is of paramount importance in your reversal of PD symptoms. Do you actually cycle in the open or do you use an exercise bike? Bearing in mind there are many symptoms in parkinsons and we all differ, may I ask what your prime symptoms were/are? Given such a positive reply, it is likely that you are careful in other aspects. For instance, do you follow a particular diet, does it include wheat/gluten?
Thank you for sharing your reversal story with us.
Regards
Norton
Hi Norton,
Good questions. I cycle both in the open and in the house on a trainer. When we go traveling (I have been away from home 129 days already this year), we put my bike on the back of the vehicle and take my trainer with us. If there is a path or paved road, I ride on that. If not I set up my trainer and ride in place for at least an hour. Dr. Alberts from the Cleveland Clinic has photos of me in his talk that are titled "First I bike." and "Then I fish!"
Symptoms before I began cycling: Physical symptoms: tremor in right arm and hand, shuffling/stumbling walk, arm frozen at my side, right hand curled and cramped, recurring cramps in foot and leg, inability to turn my head more than 90degrees, nausea, constipation, great pain putting on seatbelt, minor balance issues. Mental symptoms: depression, could read but not recall what I read or who wrote it, incomplete and grammatically incorrect sentences, couldn't follow conversations, slow reaction time to questions, etc. Most of those issue have been resolved since I started biking in the spring of 2009.
I'm terrible at following a diet although I eat very few processed foods. I've found that starting the day with granola that includes pumpkin seeds has eliminated constipation. (Major breakthrough!....pardon the pun). I use a self hypnosis technique of sitting or lying quietly and concentrating on saying silently "peace" and "quiet hand" as I breathe to control the tremor.
My PD has definitely progressed over the five years, but very very slowly and I am no where near as affected as I was when I was diagnosed. Obviously I can read and talk sensibly again and I often give seminars on Pedaling for Parkinson's.
Hope this helps.
Nan
Thank you NanCyclist for such an open and full response to my request. We need to hear more of these uplifting stories. You have met your parkinsons symptoms head on and abated them at the very least. What I admire about you is the amount of time you spend cycling in the open and on your exercise bike which takes consistent effort.
Your reduction in medication mentioned in your previous message give all of us great encouragement.
Thank you too, for explaining your diet which, I feel, is complementary to the exercise and can not be ignored.
I would love to attend one of your seminars on peddling for parkinsons, they sound like fun!
Thank you again.
Norton
The sort of funny part of the seminars is when people tell me they don't have enough time to bike and I muse that they'll have a lot more time when they're in a wheelchair. I also show slides of our grandchildren and say I don't want them to have a bobble head granny. It may sound cruel but I don't mean it to be. Many of us, Most of us, do have a choice but it takes a lot of hardheaded "want to" completely change our lifestyles to accommodate the cycling program. But hey, PD has changed and will continue to change our lifestyles anyway.
I just looked up the Machu Picchu trip we've signed up for and it's four days of hiking 7-9 hours per day at 11,000-14,000 feet. Wish me well. The training begins...as does the anticipation.
Thank you NanCyclist for once again putting PD life into perspective if we want to lessen its insidious effect on us.
You are an inspiration to us all and of course I give you my best wishes for a successful Manchu Picchu trip.
Norton
What do you think about intense wallking for 1 or 2 hours a day as opposed to bicycle workout? On the other hand what do you think about spinning classes? I also think that some of my 'dementia' symptoms are because I'm getting older, I'm in early 70s because I often stop in the middle of a sentence because I can't think of the relevant word. Do you take meds? I'm hoping to avoid meds.
I would like to get intouch with you do you have email
Nan.little@comcast.net
Check out FightingParkinsonsDrugFree.com So far three (3) people have been totally cured by following the Parkinson's Recipe for Recovery provided at no charge on this web site. I just started the recipe and am improving daily.
Hello MagicMax,
Your post gives us much hope and thank you for sharing the information with us.
Please keep us informed with your progress which hopefully will continue to reverse your symptoms.
Regards
Norton
Howard, who invented this recipe, and I have viewed his medical records, does charge if you need coaching. It runs about $500 per month. But, he will answer a limited number of questions at no charge. He is currently giving workshops at $100 per person (an all day affair). The workshop starts at 10:00 AM, ends at 5:00 PM, and it includes a paid 2 hour lunch and illustrated Parkinson's Recipe for Recovery manual. The workshop covers everything in great detail. I just completed his workshop that had 32 people attending and they all loved the workshop. It is the only cure for Parkinson's offered with proof it works in the entire world. Well worth spending one day and $100. The workshop schedule is listed on his web site.
I have only just seen this question. The answers are very interesting. I can relate completely to good and bad days. Sometimes on a good day, I can almost forget that I have Parkinsons. Whilst on a bad day, I really struggle. Also, I have been trying to find a reputable Bowen therapist in my area, with limited success so far. Another also, I have just got an exercise bike, although I have found that this increases my tremor. But I will persevere.
I now intend to find out about the Recipe for Recovery diet as I do believe that this could also be the way forward. At least I am a 'trier'. So glad I saw this post as I need positive thoughts at the moment and also inspiration. Thanks.
Hello Court,
Thank you for your input. May I ask, are you taking medication for your PD, if so, could your 'bad days' be connected to failure of the medication to be absorbed optimally through your digestive system? I know nothing about the Bowen therapy, it sounds like some form of physical manipulation. Is it that? If so, how does it work to make up for the dopamine deficiency that we have or is it an 'add on' therapy to the medication?
Regards
Norton
My husband lost most of his ability to walk when he was taken off Mirapexin after dementia started to set in earlier this year. He saw a homeopathist and she prescribed something containing a minute amount of Mercury. His mobility has improved to the extent that he now walks around the house unaided, and can do small distances outside, whereas before the treatment could only move around using a walking frame. Unfortunately his tremor also got much worse after stopping the Mirapexin, and to date the homeopathy has not solved this problem.
Hello Superjanet,
Thank you for your contribution to this question. I have been wary of homeopathy in the past, because I could not see how it could work, but your husbands experience is a delight to read; Long may it continue. Tremor is one of my main symptoms and I can only lessen it for 2/3 hours whilst the Sinemet is being effective. I have tried Mucuna Pruriens in the past, but without much success. Sorry to read about the dementia setting in, have you investigated if 'nutrition' can help?
Regards
Norton
Hello Norton
I agree that it is hard to see how homeopathy could work, but we went for it on the basis that Parkinson's UK suggest it, our insurance covers it, and it's hard to see that it could do any harm!
Thanks for the tip about investigation the nutrition angle re the dementia. At the moment John has been on his new anti dementia drug, Galsya for just over a week, so we are waiting to see how that settles down before starting anything else.
The other thing I did not mention before, which I suppose is vaguely 'nutrition' rather than alternative, is that John had started to freeze badly round about spring/early summer. I read that Vitamin K might help, and he has been taking this as a supplement for several months. He has not had a freezing episode since.
Onward and upward!
Janet
Hello again Superjanet,
I enjoyed reading about the vitamin K experience with your husband. I seem to recall that this vitamin is in cabbage and other greens. Kale is particularly nutritious. I used to blend it with frozen berries and an orange and although I do not 'freeze' I found it far from unpalatable and only stopped eating it because I was rather lazy. However, if my symptoms worsen I shall be back on it 'two,six'.
I recently read a good book by Jonny Bowden called something like 'the 100 best natural cures'. He is an expert on nutrition and the was quite a lot about 'the brain'.
Lastly, have you heard of the spice CURCUMIN? It is a derivative of tumeric and many PwP take it daily. There are many research papers on this spice which claim many health benefits have been observed.
I realise that you can not do too many things at once, but please read up on CURCUMIN, you will be surprised.
Thank you again for your contribution to this thread.
Norton
Norton
Thanks for this thread, interesting. I am a skeptic until I have proof, that is I don't prescribe to the approach that if I believe enough a treatment will work, or conversely if a treatment is not working it is because of my lack of belief in it. I want evidence, it doesnt have to be rigorous scientific experiments but peoples experience.
Superjanets comments are interesting and when first diagnosed I started curcumin but I havent been diligent about continuing! Do you take it ?
Nancyclist you are an inspiration. Im sure exercise is vital (so why dont i do more instead of hanging out on forum!).
I haven't yet noticed anything else i have felt great confidence in from the replies. Personally i have used acupuncture and it is wonderfully relaxing and did help i think especially mood and muscle aches. It is hard to be sure about the benefits as they are subtle and said to be cumulative. Still nice experience just wish it was cheaper.
Hello Hikoi,
Thank you for your input. Pleased you like Superjanets comments as much as I did. Yes, I still take CURCUMIN capsules daily. No, I can not say that I have noticed any difference, but the evidence for them is so great in many health conditions that I would rather continue than drop them.
Like you, I would rather have conclusive evidence before trying anything, but I am at an age where time is not on my side and in any case I do not want to give all the responsibility for my health to my doctors. I need to try things out and I take full responsibility for their outcomes, good or bad. I think diet is essential and whilst there are many the one thing which seems right to me is that we should be eating non processed food at the very least. As for accupuncture I had a course once and found it painful and not beneficial. Furthermore, I am a wimp!
I hope you continue to contribute as I feel you have important things to say.
Kind regards
Norton
Norton
Whats the hurry, you are still in the youth of old age!
I too think we are responsible for our health and health providers are there to give expert input which we may or may not follow. A collaborative approach, the Participatory Medicine model. Of course the ideal has quite a long way to go to meet the reality In my experience.
Thank you Hikoi.
I've never heard being 66 yrs of age described as being in the youth of old age. It has quite made my day!
It took me several years of maturing before I stopped putting Doctors on a pedestal. I have a good relationship with my GP and consultation is the right word, I listen to what he has to say but do not always accept his advice. A case in point, his only answer to my insomnia was to offer me sleeping tablets and I have accepted them in the past, but not any more. I found out through my own devices about cognitive behavioural therapy which I am trying right now. Once I am satisfied that I have hacked it I shall write up about it on this forum.
Regards
Norton
I have been using The Drug free Cure by Howard for 4 days now and I feel better, not much but noticeable improvment! It requires a lot of work, concentration and time, but what else can I do that is better... nothing. We shall see if I continue to improve. I feel good about that!!!
Hello DeparkiePoet,
Thank you for sharing with us the improvement you are experiencing by following the Drug Free Cure no matter how slight. You are right to see if you continue to improve and I ask you to consider writing a blog of your findings on this forum in say four weeks time. I think that if you were to write a post under this thread it might not be picked up by some people. I looked at your earlier post when you listed your symptoms and I ask when you do write again that you list them again hopefully comparing results. If you are able to cure your Parkinson's no doubt it will take much, much longer to do than four weeks, and I for one will consider it like a miracle, but we live in hope don't we.
Best wishes
Norton
Try this therapy, don't know f it works but its better then going to China for stem cell therapy...
Helen Foundation introduces Microdose Therapy
Microdose Therapy by the Helen Foundation teaches patient self-administration of hydrocortisone to treat cortisone-responsive chronic pain conditions. This method results in dramatic relief from symptoms and virtually eliminates side effects. We have successfully treated chronic pain for more than 10 years and have done so with phenomenal results, without the use of narcotic medications.
Conditions in which corticosteroid use are indicated include: endocrine and rheumatic disorders, collagen and dermatologic diseases, allergic states, ophthalmic diseases, respiratory diseases, hematologic and neoplastic diseases, edematous states, gastrointestinal diseases, to name a few. The “Dosage and Administration” used for patient self-administration of hydrocortisone is within the scope of accepted use described in the PDR and supported in peer-reviewed published medical literature.
Microdose Therapy teaches patients to quantify their symptoms daily using a simple, comprehensive system that assists in precise treatment decision making and tracking of symptom response.
We trust you will find this sample of statistics using our protocol impressive:
Disease Patients Average Relief, %
Fibromyalgia 530 77
Osteoarthritis 516 78
Rheumatoid Arthritis 225 77
Arthritis, undifferentiated 143 75
Polymyalgia Rheumatica 31 79
Chronic Fatigue Syndrome 23 56
Parkinson’s disease 22 85
Irritable bowel syndrome 20 70
Multiple sclerosis 13 70
Physicians and patients alike are often frustrated with the inadequacy of common treatment options available for these conditions and other chronic debilitating conditions. The Helen Foundation recommends that you try patient self-administration of hydrocortisone for your most difficult cases.
We provide the protocol and treatment instructions. We work with the physician and patient, carefully track their response to therapy and give the recommended dosages individualized for each. In addition, we perform the time-consuming, one-year patient education.
microdose.com/how-microdose...
Home
How Microdose Works
No Side Effects
Why Microdose Therapy Works
Microdose Blog
How Microdose Works
The first three weeks of the program is dedicated to reducing patient symptoms to a minimum state. During this time, the patient is to take hydrocortisone tablets daily in tapered dosages while avoiding ingesting foods identified to be allergenic by a blood allergy test. A repeat three-week induction period with a tetracycline antibiotic (usually doxycycline) might be necessary in a few cases wherein the response is sluggish. This family of antibiotics has been helpful in controlling rheumatic disorders (Endresen, 2003; Kloppenburg, 1993; Tilley, 1992). Food allergies have been proven to contribute to the pain of rheumatic disorders (Panush, 1986).
As a consequence of the induction period, one of six patients will lose most or all symptoms within one week, four of six will do so in three to six weeks and the remainder, one of six, will not respond and must be discontinued. A satisfactory minimum symptom state is 75+% symptom reduction from baseline. The Helen Foundation Clinic will recommend the hydrocortisone dosages for you that are customized to patient parameters based upon its data bank of patient histories.
The next three months is dedicated to teaching the patient to self administer a customized dosage, five-day hydrocortisone regimen to quench reoccurring fibromyalgia flares and test the foods determined by the laboratory to be allergenic. The patient will be educated weekly by the Helen Foundation Clinic education staff in a classroom setting if local to the Helen Foundation Clinic, or by telephone, email and mail if at a remote location. Each patient will receive a copy of the Patient Education Manual. You will also receive a copy of the Physician Manual. Your patient will require a prescription for four five-day hydrocortisone regimens per month. They will average 3.3 fibromyalgia flares per month (Stenberg, 1992). The Helen Foundation education staff will educate the patient but not give medical advice. Medical issues are referred to you.
The final nine months of the patient education program consists of regular monthly sessions with the Helen Foundation education staff. At anytime, a patient being educated may telephone in to the education staff for advice via a toll-free line.
For more info: microdose.com/
Wow. There's a lot to think about here.
So many alternatives! And so few objective
scientific studies. If only MJF or some more-or-less
reliable national organization would weigh in and summarize what is
known about the best alternative therapies.
Hello Schmarkinson,
Thank you for your thoughts. Like you, I wish all these alternative remedies were compiled in a single, easily accessible volume, but I find PwP are generous in sharing their successes with others on threads and sites such as here. Although scientific assessments are the ultimate, I find it stimulating to read others experiences and trying the most promising out myself.
Regards
Norton
in reply to Norton1
Hi Norton,
Hope you had a great Christmas w/ you family. I am continuing where we left off on 12/24. Can you find the reply I wrote to finlander - which is along the same lines. Also as to your wish that alternative remedies were compiled togehter........there is a pretty good book that I bought called "
what Your Doctor may NOT tell You About Parkinson's Disease" by Jill Marjama-Lyons, MD - a Holistic Program for OPtimal Wellness. Sorry - I'm all over the place - haven't had time to figure out this blog yet. Hope you're getting this message.
Norton1 in reply to
Hello Allnatural,
Yes, I've got it's post from you, thank you for getting back to me, I shall check out your reply to Finlander to check out what you have to say. Since following your 'other' posts on using mucuna pruriens and sinemet I have checked out what somether PwP have been doing along similar lines and there is some interesting stuff out there. I think that this topic needs a more appropriate thread because what you are trying needs to be discussed further. Do you have a suggestion as to where?
Regards
Norton
I have started Low Dose Naltrexone with very positive results. LDN at low doses blocks your opioid receptors for several hours at night and tricks your immune system into overdrive, your body starts producing endorphins like crazy. I am never depressed anymore and my rigid muscle pain has decreased 50 to 75%. I am hoping it will halt the progression ......it is also a dopamine agonist. The problem is it is not FDA approved at low doses because it is already generic at high doses....used to treat alcoholics and heroin addicts. Drug companies don't want to spend millions on clinical trials if they can't make any money. First you have to find a Dr. to prescribe it and then a compounding pharmacy because the regular dose must be reduced and mixed with something. I found out about it on Robert Rogers Road to Recovery Talk Radio ( for Parkinson's). However, they are doing clinical trials now for LDN and MS. It treats all autoimmune diseases.
Hello bmakla54,
Thank you for your positive and informative post. The bit I like in your reply is that LDN is considered a dopamine agonist and of course that you are never depressed anymore. Clearly, LDN is a treatment to seriously consider for many PwP and hopefully you will stop the progression of the Parkinson's.
Thank you again for your input and I am sure many of us look forward to hearing from you again.
Season's greetings from the UK.
in reply to bmakla54
Hi bmakla54,
i am very interested in LDN and had ordered a couple of bottles a while back. I have not started on it because I has started mucuna and didn't want to get the benfits and results all mixed up. I will start on it after the mucuna experience. It's working well, but I would like to know how you do on the LDN. Hope you'll keep us posted. How long did it take for you to start noticing the difference. Does it help you sleep? Do you tke it before you go to bed - and are you taking any other medicaiton with it? Thanks for your post.
bmakla54 in reply to
I started taking LDN over 6 mos. ago. I obtained a prescription for it from my family Dr. It has to be compounded because it is FDA approved at doses of 50 mg and to take the low dose it is 4.5mg . I go to the apothecary and I made sure they were compounding it with the right filler. I take it at 10pm... I noticed benefits immediately. I could sleep in instead of getting up the minute I awake because of stiffness. My muscle pain decreased from 50 to 75% and I felt euphoric....still do. It is the best antidepressant I have ever seen. I am slowly titrating off my meds. I take azilect, requip and sinement. I am reducing my requip first. I now take 41/2 mg requip. 1mg azilect, 3 25/100 sinement a day. I am going to get off requip slowly and see how I feel. I would like to get to the losest dose of sinement.....before LDN I was taking 21/2 mg requip 4 times a day. My goal is to slow the progression of my Parkinson's and I believe LDN will help me. It will also protect me from other immune issues.......my immune system will be working at its optimum. Go on Youtube and put in LDN and Parkinson's. .....a good source of info and Robert Rogers Road to Recovery Talk Radio for ( parkinson's).......Good Luck allnatural
Hello again bmakla54,
This post of yours re LDN has got me thinking over the Christmas break. My question to you is this 'do you believe that LDN is all you need in respect of treatment for symptoms of PD?' Also, As you state, it is a dopamine agonist, but can you tell us, does it give some people obsessive compulsive disorders like the more mainstream Agonists can sometimes do? For anyone contemplating starting LDN, I feel this is an important question. I do hope you can find time to reply.
Kind regards
Norton
Hi Norton,
I don't know all the answers. However, I do believe LDN therapy is capable of slowing the progression and maybe even more.....it works on the immune system and is an anti-inflammatory. I am reducing my meds to see how far I can go. I think in the long run I will have to combine LDN with Parkinson's meds. However, I am concerned with the side effects of sinement, namely dyskensia. So if I can reduce my meds for as long as possible, I could delay the side effects. As far as compulsive disorders, I have always been an obsessive personality anyway.....but I try to stay with positive addictions. You might be interested in the book, " The Promise of Low Dose Naltrexone Therapy" by Elaine A. Moore and Samantha Wilkinson, ISBN 978-0-7864-3715-3 I hope this helps.
Bmakla54
Thank you Bmakla54 for your contributions to this thread. Intuitively, I think you are being realistic in aiming to only to reduce your Parkinson's meds as opposed to dropping them completely. Why do I say this? Well some time ago I read a book that had a title something like 'up the creek with a paddle', it was mostly about MS, but the author mentioned her uncle and his experience with LDN for his Parkinson's. Thank you once again, all the best for the New Year.
Norton
Norton, I am famliar with the book' up the creek with a paddle'. I have not read it but did read the parts about LDN. That is why my goal is to make my journey with Parkinson's easier if possible. I am dissatisfied with the mainstream medical community that has such a negative outlook: no cure and definite progression. When you start reseaching there are people all over the world that are recovering from Parkinson's-
not being cured, but making their journey easier. A Dr. in Australia who became nonsymptomatic with "aquas" a formula that hydrates the body in combination with Bowen Therapy. A woman on "Road to Recovery" Talk Radio that made her symptoms tolerable with less Parkinson's meds on LDN. The silver lining in all this is my life is actually better and more fulfilled since I have been diagnosed......I started a business and am proactive about taking care of myself.......my goal is to keep it that way.
Thanks for listening and Happy New Year to you and your family
Bmakla54
Thank you for your positive reply bmakla54. May your health improvements continue and I hope you business flourishes. Your attitude is great.
Regards
Norton
Deparkiepoet
Which enzymes do you take? I can't gain weight after breast cancer, chemo, and Parkinson's. I lost 30 pounds and can't hold steady. I wanted to try this enzyme (super papaya enzyme plus).
If you search my name you can see this history. Currently I have increased my consumption of MCT Oil over CO.
I have also stopped my modified ketogenic diet and increased my carbohydrates. (note - not a cure) Over these last four days I have observed marked improvement in my fine motor performance. Tremors, no change from normal. I am not taking any medications. I am in Stage I of Parkinson's.
Hello RoyProp
I appreciate your adding to this thread. I have a couple of questions for you, because I'm not sure of the rationale behind your making the changes. First - why the change from coconut oil to medium chain oil? Second - for what reason did you introduce more carbs into your modified Ketogenic diet? Third- did you sleep well on the Ketogenic diet? Fourth - do you sleep well with your current regime?
I hope that you don't mind me asking these questions as from my own experience they are important.
Kind regards
Norton
in reply to Norton1
If I was not watching the forum closely I would have missed your inquiry. The reason I like this forum: questions, answers, news, updates, stories of personal experience (results or no results). Your (or others) questions are welcome. My questions have a "sounding board". This journey is a long difficult road. I want to garner all the information I can. I want to hear opinions about my choices and my experience as I experiment with diet. (food and supplement choices). I am "thirsty" for reports of others as they journey this road. When and what symptoms? Did they choose medication at the get go? How are they doing without meds? How long might I expect live w/ P before medication is very necessary? et al Note here: 1. I am holding off until Neupro turns generic. 2. I am waiting for Ultrasound Surgery to be approved. 3. I am hoping (with tremor dominant P) I can live a full, remainder of my life W/O meds.
First - why the change from coconut oil to medium chain oil?
For the 100% med chain triglycerides
Second - for what reason did you introduce more carbs into your modified Ketogenic diet?
I went off the mod keto diet, I was not getting the results I wanted, that I am now getting under my regular diet (I have learned to be careful in selection of foods and sugar)
Third- did you sleep well on the Ketogenic diet?
As well before, during and after.
Fourth - do you sleep well with your current regime?
Yes.
I am self employed. Knowing that self employed people normally do not ever have a fully restful night.
Thank you RoyProp for your interesting replies to my questions. Your openness and honesty in your responses throughout this HU site is welcome. I must confess that I did not realise that not only are still working, but self employed as well. Another question for you. If you were able to pinpoint a single cause of your developing Tremor Dominant Parkinson's what would it be?
Kind regards
Norton
in reply to Norton1
When replying, use the 'Reply to this' button on the/my comment, not the original Post. That way HU will notify me of a response.
Answ:
0. Distant relative with PD
1. as an adult, severe case of GERD ~ gastro esophageal reflux disease Or other severe stomach aches, so painful events left me rolling on the floor
2. as a small child, running through the mosquito fog spray truck. (other suggested/reported this also)
Norton1 in reply to
Thank you again RoyProp. GERD eh? To me, that is as interesting as you running through through a mosquito fog spray truck as a possible cause. If I recall correctly the medication usually prescribed are a class of tablet called proton pump Inhibitors. Did you take any of these for a prolonged period? I know that they reduce the gastric juices in the digestive system, thus reducing the amount of nutrients being absorbed, possibly leading to nutritional deficiencies. Bis this your understanding?
Regards
Norton
in reply to Norton1
Not for prolonged periods and not daily but only as needed. I thank my doctor for that advice and the cure to my GERD. He does not take credit. He was more surprised that I no longer suffered from severe GERD
racerCP in reply to
RoyProp, I am interested in your journey and determination not to use medications. I have been diagnosed 4 or 5 months ago with tremor-dominant form which surfaced after a major surgury which I recovered from very quickly with no pain but I was extremely anxious before receiving lab report to clear existence of any malignancies. I am using CO but concerned about artery effects so how does MCO differ in cholesterol???? I do lots of exercise and keep busy but this is early stage and don't know the future.
in reply to racerCP
Of the two forms of P, tremor dominant and PIGD, tremor dominant is the one to have.
MCO and cholesterol, I think you will not have a problem that can be connected to use of either CO or MCT oil. (as I have read)
Wim Hof breathing exercises to boost your immune system helps me. Meditation helps me too.
Thank you for your response, it's the first time I've heard breathing mentioned but I can see the point just as I can with meditation. Anything that reduces stress has got to be good for a PwP.
Regards
Norton1
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