Are some or any of the Alternative Therapies beneficial in relief of PD symptoms

[Blondir]

I'd be interested to know whether anyone has tried some or any alternative therapies for help with symptoms / side effects of PD . What have we tried and did it have any effect for you

[Kadie57]

I have had pd for 12 yrs, I m now 56 it has been along road...then following list is what I discovered over the years.

**stay calm the more stress cause my symptons to go into high gear

**don't pity your self

**go and get busy.

**If your looking for sympthay it is in the dictionary start there.

**please realize people do care they just tirer easily when you wine-cheese n crackers works good here.

** All funniness aside Parkinson stinks but it is up to you to let NOT OWN YOU!!

**I use 100% oils for cramps (lavendar) engery( (Pepperment),

**no sugar that really is a big one.

** ALWAYS DRINK WATER WITH YOU PILLS

**real coffee is good for you 3 x a day --- CARBINATION IS NOT- ESPECIALY DIET SODA..

** Being over tired makes me twitchy and I fall down easy.

**I find wider shoes help, to tight seem to be HARD TO balance.

Hope this helps some, I also thank God daily for helping me be survivor, I had DBS surgery 2011, and particpated in the world wide Parkinson Conference quilt project. I had 5 2ft by 2ft blocks shown there.

TAKE CARE AND GOD BLESS, KADIE57

[Blondir in reply to Kadie57]

kadie57 - what can I say - what a reply I'm stunned - it was just what I needed it doesn't answer the question but that doesn't really matter - don't pull your punches - tell it as you see it - Fantastic I can be positive some of the time but I think I could learn a thing or two from you

[Pete-1 in reply to Kadie57]

Hi Kadie57,

That's very interesting, I mean the bit about always taking water with pills. You have emphasised this by the use of upper case. Why is this especially important?

Pete

[Kadie57 in reply to Pete-1]

because pills don't dislove and work as ther should I was amazed when I had slowed response time to meds, whenI was aksed if I drank water every time I Took them .I said no I take so many per day I was chewing and sallowing. I was reprimanded by my nurse and I now carry a wter bottle or ice tea, it help alot.

[Pete-1 in reply to Kadie57]

Hi Kadie57,

Yes sometimes it seems to take ages before a dose of levodopa takes effect (normally 1 hour). I suppose sometimes it is a case of a watched pot but then again perhaps it is due to not taking any or enough water. Must try and keep an eye on that one. Thanks..

[PDbedamned in reply to Pete-1]

I found that the "plenty of water" approach to be necessary for a couple of reasons.. First and foremost, it makes them easier to swallow, they just go with flow. It also gets the tablets out of the mouth and down the hatch so they don't start dissolving in your mouth, which can lessen their effectiveness. And the water is refreshing for those of us that have dry mouth problems.

[landman in reply to Kadie57]

Great post, like your attitude. I agree and you taught me a couple of new ideas. Thank you GOD Bless

[Kadie57 in reply to landman]

I find teaching is my goal, learning to live with PD is all our goal because I do not planning on giving in to this nasty disease. I full believe I have this to help someone else see a way to surve this. Don't know who our how or where But I keep trying to educated. My 8 yr old grandson took me to show n tell for 2ND grade at the end of the school year, (I have a rechargeable battery implanted in my right shoulder for the energy formy DBS Feeds. I charge once a week) So I brought a tulip coloring page for 30 kids to color and took questions, one litle boy was worried and thought I could give pd o my grandson, so I hugged Lane andexplained the best thing theycould do is learn how to help and maybe some day find a cure.

[MaggieMae1223 in reply to Kadie57]

Hi Kadie 57, I just have to say I love your positive attitude👍🏻 and thank u for sharing with us. May God continue to bless u in this journey u r on...

[honeycombe3]

When first dxd I was helped through 2 yrs of alternatives by my med team but the time came when meds became necessary alongside other approaches.

There's a lot of criticism of alternative therapies/treatments at present but having tried a number I've continued with hypno & 5 Elements acupuncture. Although I've been dxd for 9 years most people I meet don't realise I have PD so I must be doing something right.

At present I have 5E acupuncture, hypnotherapy & deep tissue massahge as needed along with Tai Chi.

[Kadie57 in reply to honeycombe3]

I also used acupuncture several years ago, It was help for my back, seems since I don't stand as straightas I should my back always aches. It helped the arms cramps also, If the practioner is an ostio adjuster the ins will pay for acupuctnure.

[maryalice]

I've tried several alternative treatments. I've had PD for a little more then 15 years. Right now I'm doing Bowen Therapy every other week that does help with some of the pain. I'm also taking coconut oil (3TBS. a day), but really haven't seen much of a change from it yet. The prescription drugs I'm on are Mirapex and Amantadine. I've ordered some Mucuna Pruriens and plan on trying it soon. I think it's important to try things one at a time, so you'll know the effect it's having on your body. There's a lot of alternative treatments available. Try doing a google search. Hope this helps. Blessings.

[satwar in reply to maryalice]

Hi maryalice,

Regarding your coconut oil dosage, have you tried higher amounts ? The books I've read recommend a battle plan of 6 tablespoons a day. My personal experience has confirmed that 6 tablespoons gives more relief from symptoms than 3 tablespoons per day. I admit gaining weight is a concern, but I have been carefully trimming back unnecessary carbohydrates and I'm starting to finally lose weight.

[maryalice in reply to satwar]

satwae,

Thanks for the information. You're right 6Tbs. seems to be the amount to achieve.

I am building up to 6Tbs, but slowly. How long did it take before you saw some improvement? Are you taking any prescription drugs or doing any other alternative theripies?

[satwar in reply to maryalice]

Hi maryalice,

Lots of non-PD health improvements came within the first month. Improved eyesight, clear headed thinking, more positive mood (it was like the sun came out), reduced swings in blood sugar (no more cravings), fixed my borderline cholesterol (all blood work numbers went off the charts in the right direction), amazing recovery from cold in 3-4 days (used to hound me for weeks), it was almost an out of body experience.

PD symptoms then started. I lost my Parkinson's frozen face (has expression again), drooling stopped, never feel dizzy or out of balance anymore, morning wake-up feel refreshed and energetic (used to feel like I'd ben hit by a truck), never require day time naps anymore, don't get tired while driving long distances, my toes are no longer numb and tingling sensation, significant reduction in hand tremor, right foot no longer drags when I'm walking.

Hand tremor is my dominant symptom, and still flares up under stress. Miraculously I have gone whole days without any tremor at all. It will be interesting to see how far this will improve, especially since my neurologist says there's nothing she can do, when I was almost disabled by my tremor.

I am still taking prescription drugs, but have not increased for two years (I've been on coconut oil for 4 months now).

I found Terry Wahl's book (Minding My Mitochondria) on the importance of 9 cups of fruits and vegetables every day very inspiring. I now eat large servings of Kale, Broccoli, Red Cabbage, and Carrots for every meal.

I just started reading "The Art and Science of Low Carbohydrate Living", in order to learn how to avoid putting my body into insulin resistance.

[maryalice in reply to satwar]

Thank you so much for answering my questions . I'm going to continue taking coconut oil and get up to 6Tbs. Your answer gave me hope. I'm not on Sinemet, because I am weary of the side effects. Have you tried or heard of mucuna pruriens?

[KERRINGTON in reply to satwar]

Hello ! 5 years later, I'm wondering if you are still on coconut oil, and if so what do you think it has improved. I'm desperately looking for energy.

[satwar in reply to KERRINGTON]

Yes I’m still on coconut oil (actually caprylic acid) @ 8 tbs per day, and I still walk 5 km in 50 minutes every day. I have noticed some progression of symptoms in the past year, but I can compensate by taking ketone salts.

For me, the most problematic symptoms was the tremor, which the medication couldn’t solve.

[KERRINGTON in reply to satwar]

It takes me 30 minutes to do only 1 mile now..and that's it.

Ketone salts are new to me..I'll read about it, thanks..yes, tremor for me is almost constant.

[satwar in reply to KERRINGTON]

I forgot to ask if you have tried a ketogenic diet. You will get better results over a longer period of time. Removing carbohydrates from your diet will lower insulin levels, which allows higher levels of ketones to be achieved.

[superjanet]

My husband was diagnosed at age 60 and is now 74. His PD was controlled pretty well by Madopar and Mirapexin until last year. In the spring he started "freezing" badly, and it could take about 3 or 4 people to get him out of his seat and out to the car (to the extent that he appeared drunk to other people). I started him on a daily Vitamin K tablet, and he now only freezes vary rarely. Later last year he started to develop dementia, and had to be weaned off the Mirapexin. As a result he lost most of his mobility and his tremor was less controlled. I contacted a homeopath who came and took his medical history, and initially prescribed a couple of courses of Mercury. As a result of this he regained an enormous amount of mobility. In August 2012 he had to use a rollator to get round the house, and had to be taken in to see his neurologist in a hospital wheelchair. He can now get round the house without any walking aid, and he uses a stick outside (the rollator sat in the garage for months, and is now on loan to my 82 year old mother who has cracked her pelvis). When he went to see his neurologist this month he parked his buggy outside outpatients, and walked up to the seating area outside his room. When he was called, he got up out of the chair unaided and walked into the room. His neurologist is very pleased with how he is doing. He also takes 2 x tps coconut oil a day, and he is now on Galantamine which is controlling his dementia very effectively. So we swear by a mixture of pharmaceuticals and alternative therapies! The only thing we haven't been able to solve is the tremor. Despite further courses of homeopathic treatment the tremor is stubborn, but the mobility remains excellent.

[Kathleen in reply to superjanet]

What doseage of Vitamin K does your husband take , I take B-12 injections weekly , Parkinsons depletes B-12 .I have a time with freezing . I use Apokyn injections and it works within 10 minutes but if Vitamin K works thats wonderful .. .My motto is 'KEEP ON MOVING'

[Kadie57 in reply to superjanet]

I had been reading about coconut oil. seems you have a good handle on this your husband is lucky to have you. I know I have good luck with oils.

[hilarypeta]

I follow only natural therapies, 7 years on, .i recommend the book Road to recovery from parkinsons disease,refs and info

I am following Howard Shifke ..google ..fighting parkinsons disease drug free. Mainly qi gong, meditation,veggie diet. He recovered in seven months. He runs workshops and mentors.

Others who have recovered by alternative methods include Bianca Molle, john coleman, dr.walton hadlock

Adrenaline control is necessary to produce dopamine , a good digestive system. And detoxfrom all pollutants...my opinion.! Good luck, we are all on the same journey.

[ldq1997]

I took 1200mg CoQ10 daily, go to the gym for an hour of exercise at least 3x a week and never take prescription drugs. Previously I suffered from depression and something like chronic fatigue syndrome because I was always tired and exhausted. My program has virtually eliminated the depression and greatly improved my energy (although I am still no ball of fire). However, balance and moving around remain problems, although they are certainly no worse. Now, I learned that my liver enzymes are elevated, which is no doubt from all that CoQ10. I intend to cut back to 300mg daily. I also take coconut oil, but have noticed no benefit .

[Lepseny13]

My husband has had Parkinsons for three years and last November started having acupuncture - it has really helped his movements and feels so much better afterwards and has no pain. The treatment lasts about 2 weeks before he starts to go back to how he was. He still takes his medication of Ropinrole and Sinemet but this has been great for him. Good luck

[satwar]

Coconut oil therapy has been working for me. I have been taking for 4 months now, at a dosage of 6-8 tablespoons per day(morning, noon, dinner). I have had very significant improvement in symptoms and enjoy a slow progressive improvement. I actually look forward to the future again. You really should read at least one book (Stop Alzheimer's Now, or Alzheimer's Disease: What if there was a Cure). The only side effect I have had is that at 6-8 tablespoons, I have trouble controlling weight (130 calories per tablespoon). I believe a low carb diet is complementary to coconut oil therapy but requires care in implementing. I have ordered The Art and Science of Low Carbohydrate Living to study before trying. Terry Wahl has an excellent book Minding My Mitochondria which explains the need for a diet rich in vegetables and fruits when battling chronic neurological disease.

I might add that there are no easy fixes, and each approach poses considerable challenges. I must say that you should consult with your doctor before starting any therapy, although it is you that must take responsibility for your health and make the final decision. I have always stayed in contact with my doctor, although I have chosen not to reveal the details of my diet. At my last physical, several months ago, my doctor told me he sees no progression in PD since I saw him 2 years ago and my blood work was excellent (my cholesterol was concerning before taking coconut oil and would not respond to statins). He finally said that what ever I am doing, keep doing it, and that I have his support. My neurologist is more guarded in her assessment, but says my symptoms are quite good considering I was diagnosed with PD 13 years ago and I noticed something was wrong even 10 years before I was diagnosed. I have not increased my medication for several years, although my tremor was almost disabling before I started taking coconut oil.

[Kadie57 in reply to satwar]

do you use a certain brand of coconut il or buy at a certain place?

[satwar in reply to Kadie57]

Hi Kadie57,

I buy mine at Costco. You should make sure it is raw (virgin) organic cold pressed.

[Hidden in reply to satwar]

first dxd a little more than a year ago. Soon after I decided, after neighbor recommended and after my research, to start on coconut oil plus a high protein (meats), low cholesterol, NO sugar diet. My wife and I both noticed a marked improvement. Also, I lost weight such that this week when I bought trousers, two less inches in the waist.

I also believe the coconut oil reduced the size of my prostate.

I am still experimenting with diet as keto diet did not make me too happy. I have increased the variety of foods, a little more carbs and can I say, a little more sugar. I plan on going back to no sugar. Got out of the diet during the holidays.

I find taking two tbsp. of co three times a day very easy. I fill a coffee cup, one third with coconut milk, the coconut milk containing 6g sugar tastes best, heat for 38 sec in radar range, add two tbsp. co and in a minute I have a sweet smooth tasty drink.

I am glad I came to this forum to glean ideas and learn of others experience.

[hanifab23 in reply to satwar]

HI Satwar

what is the brand of coconut oil you take i have really bad back pain and muscle stiffness

[satwar in reply to hanifab23]

Just try to find coconut oil that is certified organic and is cold pressed.

[hanifab23 in reply to satwar]

Thank you Satwar

[bigmama53]

I was diagnosed 09 years ago and was on Mirapexin from the word go. Five years or so later was given Madopar and Stelevo in addition but now no longer take Madopar. I function normally (as though I don't have PD) when medication kicks in. It gets a little tough when it wears off or a couple of hours after waking. Sleep is an issue. Am trying to get into a healthy pattern - to bed by 10.00pm. The only thing that I feel well from is exercise. The drugs seem to come into effect quicker if I am active as opposed to being sedentary. I swear by Yoga, Gym and Putkisto (a Finnish exercise that really stretches your muscles - a combination of Yoga and Pilates). I did try two weeks of concentrated Conductive Education ((invented by Dr Peto) at the Institute in Birmingham. I'm not sure if it would have made a difference if I could remember the techniques. It appears to have made a difference to children with cerebral palsy.

[fwes]

I sincerely hope that you can find something that works for you.

I have gotten amazing benefits from Coconut Oil.

Some Do, Some Don't and I can't explain it, but I would like to understand!

Perhaps you can find my blog on "non-clinical trials" under Research

I have made several posts about my experiences, and they tend to "age off"

So I have copied the most pertinent onto my website:

tending-the-iris.us/

I used to shuffle, freeze, have a lot of pain. blank facial expression

Now I can walk normally, even run a bit, no freezing, no pain.

Normal active facial expressions.

Two doctors have pronounced my recovery "Amazing"

Coconut Oil Works for me! Wish the best for you.

fwes

[Blondir in reply to fwes]

Hello there

Looking at the number of PwP's supporting Coconut OIl I'm off down the Pharmacy for my monthly wheel barrow full of medication and while I am out I will see if I can get hold of some this elixir -

I was diagnosd with early onset PD in 2008 (age 59) but had probably already been affected 9 or 10 years before that. I am currently 'experimenting' with my medication ( with GP agreement - he says I know much more about PD than he does ) . I have had a bit of a short sharp decline in medication efffectiveness and I am looking for anymeans to avoid increasing medication further if I can get help from else where - its a mean condition is PD - what has amazed me is how much support there is in the PwP population - Thanks to everyone - and keep the responses comming in please

[fwes in reply to Blondir]

Blondir:, I am CO fwes and poet fwes that wrote the response to 'no laces' that you put to music so delightfully. Please post a link to your final version for us all to enjoy.

[KERRINGTON in reply to fwes]

Hi !... 5 yrs later...is coconut oil still working for you ?

[wifeofparky]

Hubby found massage therapy helped him with stiff muscles. He also kept well hydrated (8-10 glasses of water a day) , took B complex vitamins from Shaklee and did daily stretches.

[Partner]

Hello

My partner, who is a sufferer, has tried Mucuna and Coconut oil to no effect - but perhaps has not yet had a large enough doses of Coconut oil.

What has made a huge difference is homeopathy - he no longer has a tremor or rigidity for example. Amongst other resources (including the web) we found the following booklet useful, although it is badly laid out and quite hard to disentangle -

Parkinson's disease and homeopathy

by Rajeev Saxena, B Jain publishers

Would recommend looking at it with a professional homeopath -- in fact always seek advice from a professional! Note this book assumes use of more than one remedy at once, which many 'classical' homeopaths are not comfortable with, but disparate PD symptoms seem to need different remedies.

It's good to see that Superjanet hasn't attracted the rather aggressive objections that appeared when I last mentioned homeopathy on this site!

Good luck

Partner

[landman]

To start I was diagnosed in 2001. I have lead poisoning from pumping leaded gasoline. As to alternative therapies. Chealation, HBOT, Accenture, massage, exercise, and the best is praying and living a life of gratitude.

[Kadie57 in reply to landman]

I had severe Lymes disease un diaganosis for 6 yrs, I had IV treatments for 1 1/2 yrs 2hrs aday 4 days a week. Then the nerve damaged settled in, ENTER STAGE LEFT--- the Parkinson. it's been along 12 yrs

[scottyt]

Medical Marijuana is legal in California so I bought Marijuana oil and I have been ingesting orally. I sleep better and my Parkinson tremors have greatly improved and i have cut down on my Sinemet. I will not submit to PD without a fight.

[Blondir in reply to scottyt]

Hi scottyt sorry I took so long getting back to you - I was thinking of jumping ship and heading for California- unfortuntely the UK authorities don't take too sympathetically to anyone claiming 'medical use for Marijuana - but I'm not sure about oil ? I've tried coconut oil but the texture makes me feel sick and how anyone can get it to mix into cereals I've no idea - The people of Holland make cakes with Marijuana - does Moil have the same effect I wonder as cake made in Amsterdam

Regards

blondir

[scottyt in reply to Blondir]

You mean to tell me Medical Marijuana is not available in the UK, Have you mentioned this to your Dr. There must be some program available for PD patients, It's barbaric if there isn't.

[angel777]

Glutathione is amazing! Intravenous gets really costy. Well glutathione is expensive, but it can be nebulized and used as a nasal spray. There is a link between PD and glutathione deficiency.

[AmyLindy in reply to angel777]

R u still on Glutathione? Results?