[Max19BC]

Recovery is possible......
I’ve been holding off writing this for awhile now, I wanted to be sure, that I’m recovering from Parkinson's and not just my imagination. When I last saw my doctor, he couldn’t believe how well I’m doing. I even showed him some one footed Yoga poses (Eagle Pose and the Standing bow Pulling pose) that I’m able to do now. 3 years ago, I had to use a walker (with great difficulty) to see him. I couldn’t even stand unassisted. Today I can go though a 90 minute HOT Bikram Yoga class like any normal person. I’ve been kayaking, cycling, and hiking all summer. I’ve even started dating again. Mind you, I still need a little bit of herbs/meds to function normally. I’m not fully recovered yet, but I’ve improved dramatically in the past couple of years. I only take my meds during the day to function fully. I average 16 hours unmediated in the evening. This gives my body a break and forces it to use its own natural dopamine. During that unmediated time, I’m a bit slow, but still improving.
At 48 years old, I was diagnosed with PD in 2001. First of all, I never believed what the western medicine’s approach is to treating PD. They believe it’s incurable and that you’ll have to gradually increase your meds, until eventually the meds itself will give you more problems then your PD. They’re not even really sure what causes PD in the first place, WHAT DO THEY KNOW.. They sure know a lot about prescribing drugs and DBS. I refused to accept and fall victim to that.
In my case I believe it was decades of abuse to my body (poor diet, lack of exercise, lots of stress with my digital imaging business for the advertising industry, way to much coffee, not enough sleep, lots of amalgam fillings in my teeth, no joy or real meaning in my life, decades of accumulated toxins in my body, etc. etc.). It got to point where my body finally said: “Enough is enough” and it decided to force me to shut down, so it can recover. That’s right recover. Like a wounded animal, it just wanted to hide and rest. Like all of us, this didn’t happen over night. It was a gradual decline. But once it (pd) crossed that tolerance point of what my body can handle, it was all downhill for 5 years. During that time, I’ve decided to stay away from all pd drugs. I wanted to try natural alternative treatments: I took lots of vitamins, antioxidants, was eating way better, practiced Chi-Gong breathing, did visualizing techniques on my body healing itself, tried a variety of energy techniques on me, eliminated stress the best I could, had acupuncture done on me, exercised the best I could, even did Ti-Chi for awhile ‘til I couldn’t do it any more , etc. etc. etc.. I eventually had to shut down my business ‘cause I couldn’t work any more, I’m sure it all helped, but eventually I couldn’t take care of myself anymore. By February of 2006, (5 years later) I was ready for a wheelchair and was extremely depressed, even suicidal. I couldn't take it any longer, so I regrettably*broke down and decided to try Sinemet. In about a week, Sinemet started to work. And in a couple of months, I was a completely different person. I could walk, got my balance back, started to gain back my normal weight and I could even ride my mountain bike again. But in only 6 months of taking Sinemet, I found it was taking longer and longer to kick in, not lasting as long and sometimes it wouldn't kick in at all. Sometimes I would take 1 1/2 tablets of Sinemet CR 200/50, at a time, with no effect at all. Talk about being scared all over again. I knew getting on Sinemet would be a limited ride, but I never thought it could be this short for me. Remember, this is my story, everyone’s response is different.
About that time, I heard about mucuna, an Ayurvedic herb from India used to treat PD and other ailments. The first time I tried it, I felt some improvements. After a couple of months of gradual improvements, I continued to reduce my Sinemet and replaced it with mucuna. Today I’m taking only 1/2 a tablet of Sinemet 200/50 with 1/2 tsp. of mucuna 3 times a day. Maybe my body was finally ready to start the recovery stage after 5 years of changing my lifestyle for the better and this herb was just what I needed to tilt the scale towards recovery. Whatever it was, taking mucuna was definitely helping me and continues to help me today (3 1/2 years later). I can function almost normal, except for my handwriting. My handwriting was small and weak 3 years ago, now it’s big and sloppy. I used to be a fine artist, I’m still hoping I’ll get back that fine motor skill one day. Might still take another year or two. It took years, maybe decades, of abuse for my pd to show it’s ugly head in the first place, it’s not going to go away in a couple of months. Looking for a magic pill (including mucuna) or an operation isn’t going to make my pd go away. It’s a change of lifestyle, putting joy back in my life, and most important believing that my body can cure itself that will make all the difference.
and patience, lots of patience.

Enjoy Life......
Max

P.S. I wouldn’t recommend Bikram yoga unless you’re in pretty good shape. But for me it’s the best thing in speeding up my recovery. It’s in a room heated to 104 degrees and you have to have good balance. It’s removing toxins from my body, improving my flexibility, strength and overall well being. For more info you can check out:
http://www.bikramyogananaimo.com/

[BEMM]

Hallo Max, I really like what you say, and I want to agree with you. I have always willed myself to believe that i will get well, that the neurons are dormant, not dead, that they can regenerate and mend. I am much older than you and have had PD much longer than you, but with minimal amounts of PD medicine - after 11 years plus years of denial, I take 12 mg Requip, 2 of the 25/100 carb/lev pills and 100 mg Amantadine per day, and I take Curcumin and Flax.
But most of all I refuse to give in and give up, and I feel very, very lucky that I have had no depression so I can be jolly and merry and laugh a lot and enjoy life with a limp and a tilt left (fortunately my sympathies are all to the left, it would be all wrong if my body tilted right) and occasional tremor and shuffling. Mindset is medicine.
Good luck and keep hoping and smiling. We will get over this ..................

[girija]

Max,
It is wonderful to hear such a positive experience. Thank you. I was happy to see my symptoms being stabilized with a switch over to alternate meds, yoga, acupuncture, positive attitude and doing what i enjoy. I never thought of regaining whats lost;
Now there is a new goal to reach.

Other than yoga, do you follow any other ayurvedic practices such as Panchakarma and diet on a regular basis?

girija

[Max19BC]

Originally Posted by girija

Max,
It is wonderful to hear such a positive experience. Thank you. I was happy to see my symptoms being stabilized, never thought of regaining whats lost;
Now there is a new goal to reach. Other than yoga, any other ayurvedic practices such as Panchakarma and diet on a regular basis?

girija

I posted my PanchaKarma experience awhile back, here it is again.

* I would like to share with you my experience of going through a "Pancha Karma". This was a 10 day cleansing to remove toxins out of my body at an Ayurvedic center in California. Pancha Karma is considered the single most powerful healing therapies utilized in Ayurvedic medicine.
* * It all started on May 22, 2007 with my initial 2 hour meeting with Dr. Marc Halpern, D.C., C.A.S., P.K.S. in Grass Valley, CA. He is an Ayurvedic practitioner and started the ayurveda college and healthcare center there. He wrote the following article on PD. * http://www.ayurvedacollege.com/articles/parkinson.htm
** * During this initial visit he was able to determine my constitution.* Constitution is the fundamental and unique balance of three basic energies called doshas. They are Vata, Pitta and Kapha. He also went over my medical history, how I live, act, habits, and how I go about my daily life. This initial meeting could of been done over the phone, but I wanted to meet him in person.
* * He started me on a very strict diet. For the next 10 days, I could only eat Kitcheree. Kitcheree is mainly rice, split mung dal (bean) with some specific spices. If hungry, in-between meals, I could have nonfat diluted yogurt with water (50/50) and raw unsalted sunflower seeds.* I was allowed to add a little maple sugar to the yogurt, if I got light headed. Didn't think I could do it, but I did. He also gave me some herbs to help loosen up my digestive track.
** I came back 10 days later to start my treatments. Same strict diet, with some new cleansing herbs added.
Mt treatments consisted of the following:
** Every day started with an Abhyanga: This is a two person choreographed warm herbal oil massage that is designed to bring nourishment to the tissues, deep relaxation to the muscles and calmness to the mind. It also helps in the removal of toxins from the body.
** Every other day I had a Shirodhara: This is a simple, yet profound treatment that works specifically on balancing and stabilizing the activity of the mind. Warm, dosha specific oils and herbs are streamed over the Ajna Chakra or third eye taking me on a* journey deeeep within. So far so gooood. I was in heaven.
** On the other days, I would have a Nasya:* A beautiful face and shoulder massage is followed by a heat treatment using warm packs and hot towels to open the pores, improve the skins luster and clear the nasal and sinus passages. My head was tilted back for the administration of dosha specific oils to the nasal passages to normalize the absorption of prana and lift the spirit. I could actually feel the oils going behind my eyeballs even though it was administered through the nose. A very weird but calming feeling.
* * Next came my daily enema.... They alternated from a water enema one day (herbally decocted with Dashmool and Triphala. Meant for cleaning toxins from colon.) to having an oil enema (Sesame oil, herbaly infused with Ashwagandha and Gaducci. Meant for tonification of the colon, the home of Vata.) the next day. Finally, it all ended with a hot steamy tent over me and a well needed shower.

** While I was there, they explained to me how important it is to remove the accumulated toxins (ama) from my body and to do my best in preventing it from building up again. Ama is toxins caused by what and how we eat, pollutant / toxins in our environment, stress in our life, from how we think, live and act, etc. They believe, for pd'ers, that ama is really in there deep. It has to be, in order to effect the nervous system that severely. Marc, believes that if I change my lifestyle, my diet, way of thinking, habits, etc. that my pd will stabilize and could even start reversing itself. So it really up to me now. It’s a lot more than just taking "mucuna".
They also talked about how important it is to meditate, do yoga, respect and appreciate the food you eat, proper breathing exercises, how to live in the present with joy, avoid stress, etc.
I’m just about finished with my cleansing diet now, I’m in my fourth week. I lost 15 pounds, never realized how much I was full of it. They also gave me my "Vata / Pita" (my constitution) food program.
In their bookstore, I picked up a great cookbook called: "The Ayurvedic Cookbook" by Amadea Morningstar. It also has lots of info on Ayurveda. and it lets your know which food is best for your constitution. Speaking of books, my favorite book on meditation exercises for health, well-being and enlightenment is called: "The Healing Power of Mind" by Tulku Thondup.

** So it's been a couple of weeks now since I finished my Pancha Karma. Has it been worth it?* Definitely, I feel a whole less toxic, my skin is healthy, no longer have cravings for McDonald's or Starbucks. I feel GREAT.* My meds are a lot more effective, lasts longer, my mind is calmer and I’m enjoying life more. I’m even able to do my morning walk unmediated now, couldn’t do that before.
Oh one more thing, Marc is having me take two additional herbs to help rebuild my nervous system. He wants me to take it with my mucuna. They are:
Ashwaganda: A well-known rejuvenating tonic used in Ayurveda for stress-inducad fatigue, nervous exhaustion and general debility. Strengthens and nourishes both mind and body.
and Brahmi: Traditionally used in southern India as a rejuvenate for the nerves and brain. believed to increase mental clarity, promotes memory and intelligence.
I’t’s only been a couple of weeks, but I can already notice improvements in my mental capacity and clarity.

** * Marc gave me lots of info to read. This is my favorite and maybe the most valuable is this:
** * How you eat your food is even more important than what you eat. In fact, Ayurveda understands that eating is one of the most sacred experences we have. After all, when we eat our food, we are taking in the atoms and molecules that have been around in different forms since the beginning of time and asking them to become part of us. If we eat our food properly, with awareness and respect, the food joins well with our bodies. If we do not, the food has difficulty joining with our bodies causes gas and other digestive disturbances. The end result of poor digestion is ama (toxins formed from bad digestion) and this leads to disease. Hence, in Ayurveda, we try our best to make eating a form of meditation (to eat in peacefulness and with awareness).


This Pancha Karma treatment really wasn’t that hard on me. I had to rest and take it easy. No TV was allowed during these 10 days. Marc wanted me to keep my mind, spirit & body calm and relaxed. I meditated, did proper breathing exercises, read calming books, Yoga, peaceful walks in the forest, etc. He even had me do “NO TALKING” a day of silence. It was a very pleasent experience. It has helped me turn to a new page in my life.

remember: * stretch, exercise, eat well and meaningful, meditate and most important of all: Enjoy Life.........

The Ayurveda Healthcare Center I went to is located at:
117A East Main, Grass Valley, CA 95945
530-274-9100
www.ayurvedacollege.com
info@ayurvedacollege.com

[Conductor71]

Max,

Thank you so much for sharing your experiences with us. It is fantastic that you have reduced your meds in such a dramatic way. I am in awe that you practice Bikram yoga- I started practicing Vinyasa flow prior to my PD diagnosis and even then it kicked my butt.

I truly believe that the meds actually make us dependent in a sense; I think they intensify our symptoms as our brains and bodies frantically look for something that all of a sudden isn't there as drug wears off or is fully metabolized. I'm not sure if it's the drug itself or the fact that it peaks-crashes and has systemic effect. I truly feel worse the more I use and the longer I've used it.

I have a few questions. I am currently seeking a new neurologist and looking for someone who has a more holistic approach.

* Does your neurologist support and/or guide you in using Mucuna or any other herbal supplements?

* How long did it take you to reach your current levodopa daily therapy? Did you schedule a taper off of Sinemet over the course of many months?

* Do you practice yoga daily?

* Do you still work?

* Do you take any other supplements?

Thanks again,

Laura

[oyster]

thank you, i love your story and the message that it is possible to recover from pd, very inspirational. it doesnt sound easy though, having to change habits, attitudes,diet, goals, letting go of addictions old and new. yet your journey rings with truth.

i feel a certain reluctance to throw myself fully into a dire struggleforr recovery as i am prone to crutches and i am fond of attention that comes from loved ones even if it is attention because i am unwell. as i get sicker with pd my i can see my priorities changing.


those brikam girls look very healthy!

[Max19BC]

Originally Posted by Conductor71

Max,

Thank you so much for sharing your experiences with us. It is fantastic that you have reduced your meds in such a dramatic way. I am in awe that you practice Bikram yoga- I started practicing Vinyasa flow prior to my PD diagnosis and even then it kicked my butt.

I truly believe that the meds actually make us dependent in a sense; I think they intensify our symptoms as our brains and bodies frantically look for something that all of a sudden isn't there as drug wears off or is fully metabolized. I'm not sure if it's the drug itself or the fact that it peaks-crashes and has systemic effect. I truly feel worse the more I use and the longer I've used it.

I have a few questions. I am currently seeking a new neurologist and looking for someone who has a more holistic approach.

* Does your neurologist support and/or guide you in using Mucuna or any other herbal supplements?

* How long did it take you to reach your current levodopa daily therapy? Did you schedule a taper off of Sinemet over the course of many months?

* Do you practice yoga daily?

* Do you still work?

* Do you take any other supplements?

Thanks again,

Laura

Hi Laura,
I'm pretty much on my own as far as my meds/herbs goes. It has been trial and error on my part. My doctor & neurologist never heard about these herbs, so they can't prescribe or guide me. They're curious but can't really help me because mucuna is not available here in Canada. You can get it in the States, I get it directly fom India.
Over a couple of months, I've gradually reduced my Sinemet and replaced it with mucuna. After about a year I was able to reduce both meds/herbs together. Everyone is different, but let your doctor know what you're doing and keep a detailed record (amount, time, before / after meals, what you ate, effect, etc.). Mucuna is just as powerful if not more so than Sinemet. Don't just add it to you meds, you have to reduce some of your current drugs at the same time. I'm not a doctor or trained in any way to guide you. Just take it slow and be patient.
I go to my Bikram Yoga every other day and meditate daily.
I'm not working right now. Rebuilding my body is a full time job.
Besides my Aryurvedic herbs, I occasionally take a multi-vitamin or a Mind Care tablet. I prefer to get my suppliments from eating healthy food.
It's important to enjoy life and not get stressed. Joy releases natural dopamine into your system. Stress releases adredaline.
So keep positive, try doing some brain gym or Somatic muscle exercises, believe in recovery and exercise the best you can.
It couldn't hurt.

Max

[JoeM]

I've been recently diagnosed and have posted about it here a few days ago. I'm just taking Azilect 1mg/day and green tea extract.

After recovering from a "why me?" feeling, my 2nd question was "why at 45?" and I think I've come to conclusions similar to yours Max19BC: "poor diet, lack of exercise, lots of stress".

And though I think medication is working, I do believe an important part of my current improvement is due to two main factors: exercise (walking 1hour 6 days/week, pilates once a week) and a change towards a positive attitude.

I have clearly identified that my PD symptoms worsen whenever I'm stressed at work and whenever I don't sleep well. When I think about it I realize that I now become stressed much more easily than a few years ago, so maybe stress is a PD cause that has turned into a PD symptom. This is currently my biggest challenge: to become emotionally detached from work (without medication, of course), so that it doesn't affect my PD condition.

Conclusion; I also believe that I can beat PD and will keep doing my best to stay optimistic about it.

[Bob Dawson]

And don't forget dance and music.
Acting, too, amazingly enough. The show must go on, and as The Mysterious Anuket sings, "I could be anyone." She has PD and cannot dance, but she sings: http://www.youtube.com/watch?v=YuVv3MRkngU

[Ronhutton]

Hi Max, many thanks for your very detailed account. I agree with what you say and conclude, since I have been through a very similar journey. I was diagnosed in 1991, 10 years earlier than yourself, and older, (I am 73 next month). I was a research chemist, making unknown and new chemicals whose toxicity was not measured. I was a keen gardener, and used paraquat extensively on a plot of nearly one acre. I had a stressful career, ending with running a hazardous chemical factory for 10 years, (we made the same chemicals as used by the London bombers, but we made it in ton batches, not kilos!).
The one point I would warn you of, is that you have had PD for 8 years since diagnosis. During that period, I progressed very slowly, indeed, I ran the factory for 6 years after diagnosis until 2007. I hardly showed any obvious symptoms. I was frequently able to go without sinemet for months at a time. However, your experience rings true of a real recovery, rather than a slow progression.
In those days, you were put automatically on sinemet, as soon as you were diagnosed. After about 8 yeaes from diagnosis, my symptoms worsened, I was seduced by sinemet to function more normally, and my intake climbed. I reached a max of around 800 mg per day of levodopa, and unmedicated, I was dreadful at about the 10 year mark.
I then started in earnest to really study the disease, and tried many supplements. I credit curcumin and CPD choline with giving the most improvement. I got out more, got more exercise, and tried to reduce my sinemet. After a year or more, I had reduced it to around 400 mg,
By 2006, I read about the research into helicobacter pilori erradication to improve PD, and met the research team. They tested me for HP and treated me to remove it. I am now on around 200mg on average, after 18 years of PD. Much more and I suffer terrible dyskinesia. My body rejects it. Now I sometimes take the dog a walk totally unmedicated, whereas 8 years ago I could not walk. Today, I had a dental appointment.
I drove myself unmedicated (to avoid dyskinesia in the dentist's chair!!), for half an hour, 45 minutes drilling, then drove myself home.
I have added other supplements, like omega 3 & 6 oils, garlic, manuka honey, and ginger. From the research group, I learned the need to avoid constipation. I take 2 sachets of fybogel per day, and add all bran to my cereals.
I recognise what an impostion all this is, but recovery, as you say, is possible. But only recovery in my case, not yet a cure.
Ron