Archive for the ‘parkinsons’ Category

Lucid dreaming – a road out of Parkinson’s dysfunction?

Friday, November 17th, 2017

If you are going to have a chronic disease at least find it amusing!

The last month I have been doing a lot of lucid dreaming when I am moving into wakefulness in the morning. If you don’t know about lucid dreaming it is a state where you are conscious but dreaming and can navigate through your dreams with full control and awareness that you are in the land of dreams.

The interesting thing is that I can move back and forth from lucid dreaming into full awake consciousness and back into lucid dreaming again. When I am lucid dreaming I have no Parkinson signs but as soon as I move into awakeness my tremor starts and as soon as I move back into lucid dreaming it stops again. I can consciously do this as long as I enter the plane of lucid dreams, although I don’t always lucid dream. My question is how do I bring this into my waking life??

Yesterday I had a preview of this. I woke up and was awake and fully conscious but still in bed and with my eyes closed. I had no tremor and I could move my left hand and arm completely normal (these side is normally slow, dysfunctional and shaky). This lasted for about 10 minutes – my body was normal! Then the shaking and dysfunction returned.

So is my lucid dreams trying to lead me out of my disease state? Is this because my amygdala is suppressed during dreaming so my body is not in a heightened state? If so compassion meditation practices helps regulate the amygdala. Lucid dreaming creates more dopamine production in the body than REM sleep because the dorsolateral prefrontal cortex is active. I notice after a period of lucid dreaming my symptoms are better even after awakening.

The other night I slammed my left toes into the door jam enough to really hurt but for a few hours after that my toes moved normally and I could spread them apart which I have not been able to do in three years. In a few hours the new normal function had ceased. My body was shocked into normal function for a time.

My conclusion is that my body still knows normal. My inhibition and initiation systems are abnormal but all the nerves are still connected and functional!

I went back to see Dr. Farias today and had another wonderful session with him. I have a bunch of new exercises and systems to work with. The focus being on my tongue, eyes, and lumber spine to release my neck and regulate my vagus nerve and parasympathetic system, more on that soon!

Using Nicotine to treat Neonicotinoid pesticide induced Parkinson’s disease

Saturday, September 16th, 2017

Nicotine, I’ve wanted to talk about nicotine for a long time but wanted to finish my experiment with it first. This post is mostly going to be about using nicotine to repair neonicotinoid pesticide damage in the brain but I want to get another post out there on the studies related to Parkinson’s disease in general, so stay tuned.

So I need to stop here and say I am not giving medical advice, I am not suggesting anyone addict themselves to nicotine without talking to their doctor first. I do want to share my experiences.

We tend to think of nicotine as bad, addictive, and deadly but it’s only one of the three. What if I told you nicotine was one of the most neuroprotective drugs out there especially to dopaminergic neurons and was being studied to treat both Parkinson’s and Alzheimer’s disease. What if I told you it was the strongest cholinergic drug and was awesome at pulling your body back into a parasympathetic state from sympathetic overload. Tobacco has long been sacred to Native Americans, it is the opposite of the evil we associate with it. If used with respect and properly it can be amazingly helpful and healing.

Nicotine is one of the most studied drugs. Years ago doctors and scientists observed that people who smoked rarely got Parkinson’s disease, in fact when it was looked at closer they found that people who smoked had a 50% reduction in Parkinson’s and those who got it progressed slower than non-smokers. Yes smoking protects you from Parkinson’s disease but of course causes cancer. Nicotine also makes the body make more dopamine and has been shown to reduce PD symptoms. However nicotine itself does not cause cancer unless applied to the same area consistently, i.e. lungs, mouth. Nicotine can increase heart issues in people prone to heart disease as it can increase blood pressure but that is about the only negative health issue if not delivered to the body in a way to cause cancer.

When dopaminergic nerve cells (the cells which stop working in PD) are exposed to neurotoxins, if nicotine is added to the system, they don’t die. It protects them.

When I was diagnosed with Parkinson’s disease I did a ton of research to figure out how to cure myself.

One of things I think contributed to me getting this disease so young, beyond my two genetic mutations, was that I had massive neonicotinoid pesticide exposure in my 20s. These pesticides, which are commonly used in flea medication, permanently bind to the nicotinic acetylcholine receptors on nerve cells and are linked to causing Parkinson’s disease.

I spent about six months trying to find some way to kick these chemicals off my receptors but as I said they permanently bind and that is final. Nerve cells in your brain also do not regenerate so I could not grow new properly working nerve cells. Yet I was convinced these cells were not dead, just not able to function properly because some of the receptors were damaged. So was there a way to make new receptors? In fact there is a heavily studied way to make new receptors called addiction. When we use an addictive substance we create something called tolerance. This means our body wants more and more of that substance to feed the addiction and our body does that by making more receptors for the addictive substance to bind to.

Nicotine addiction works because nicotine binds to the nicotinic acetylcholine receptors, the receptors that were permanently damaged in my brain. As more nicotine is given to the body, more receptors are made. These receptors are permanent; they do not go away even if the nicotine is withdrawn. That is why people who have had addiction can very easily become re-addicted to a substance if they use it only once or twice after stopping for a long period of time. I suspected I had a way to replace my damaged receptors; I had a biological hack around my pesticide damage!

So yes I was going to addict myself to a highly addictive substance but an addictive substance that actually had been proven to protect my brain and slow the disease I had been diagnosed with.

I started with 7mg patches of nicotine, working backwards through the stopping smoking system, and moved up to 14mg patches after two months with occasionally using 21mg patches to sleep at night when the stress from my divorce got bad. I found 21mg sedated me too much for daytime use but gave me excellent sleep. For you who have never smoked, nicotine, at least for me, was a lovely drug. It made me calm, happy, and increased both my energy and brain processing speed. Nicotine combined with the other 10 brain enhancing supplements/herbs I take made my brain work at a crazy speed but with a calmness that helped me process even better. I felt like a happy supercomputer!

After about 3 months of using nicotine, I started having horrible patch reactions where my skin would get bright red and swollen under the patches and itch like crazy. It would take about 3-4 weeks for the redness and itching to completely go away and I had to use massive control to not rip the skin over my thighs apart. Imagine having 21 giant mosquito bites on your thighs. It became clear to me that my body was done with nicotine and that I was going to end up with scarring if I continued to use it. So I stopped it two weeks ago after five months of use. The interesting thing is I had no withdrawal. I suspect that is because my experiment worked. I now have the normal number of receptors again but not the more than normal number you would get with addiction. Because of this the normal acetylcholine I make can bind to these receptors again and start to get my brain cells back to working properly. In fact in the two weeks since I stopped the nicotine I have seen improvement in the PD like symptoms I experience. I’ve had enough ups and downs in the journey to cure myself to not make assumptions too early and so need more time to see if the nicotine has caused permanent improvement but I am very hopeful! As an added note it also helped my dystonia symptoms, especially storm activity.

I’m hijacking this blog to share my work on movement disorders

Tuesday, June 6th, 2017

So I am officially hijacking my own blog for a while to talk about Parkinson’s disease, dystonia, and my journey in healing from these disorders as there is no longer any doubt that I am getting better. My left thumb started working last night after two years of being pretty dysfunctional and I am officially off all Parkinson drugs. The two last times I took them they didn’t do anything because, guess what, I’m making enough dopamine again!

Over the past two years I have spent countless hours digging through pubmed studies, tracing chemical pathways in the brain, reading everything out their about neonicotinic pesticide toxicity, LRRK2 mutation and neuroplasicity. I’m on to something for me and like in the animals I treat, if something I figure out is working, I want to share it. If I can cure myself from this I want to take as many people I can along with me to their own cure. I realize that Parkinson’s is a snowflake disease, like cancer, and everyone’s disease is different but even if what I’m doing doesn’t help someone else maybe it can fuel their curiosity to seek what they need to get better and fuel the hope that progressive diseases can be curable!

If the discomfort, anguish and fear I experienced over the past couple years can lead others to heal it will all be worth it for me. My own healing is in full swing and I feel like one of the most blessed people in the world right now. None of us can walk this path alone! I have had amazing helpers alone the way, my wonderful naturopaths, Laurie and Sam, my body workers Camille and Kim, Katie my counselor, Angela Ross who came up with the dystonia diagnosis, Jo from SANCA who decided teaching PD people tight rope was a good idea! , and of course Joaquin! If you have a movement disorder I highly recommend everyone of these people, they have been my backbone! And the endless support of my amazing clients and their animals who have not just stuck with me but supported me in this journey! And of course my friends and family both people and animal. See it’s still a path with paws!

So begins a new journey for me to inspire people with movement disorders to heal and share all I’ve learned from my amazing community, my own research and journey. Maybe this will become book number two! So stay tuned!

And yes I promise to throw in some animal stories along the way!

2 -Rehabilitation from Parkinson’s disease – music is magical!

Sunday, June 4th, 2017

Music is magical! A large part of my rehabilitation work involving dance, walking and other movement to music with 120 beats per minute. Music allows us to bypass the frontal cortex and reconnect lost neurocircuitry. With my functional paralysis this is extremely important. Because of my Parkinson’s my body also tries to inhibit movement, music helps me bypass this inhibition. We don’t know actually what is so special about 120 bpm but those that work with music in rehabilitation have found it seems to be the best for inducing neuroplasticity. It’s funny but a lot of the pop music I love but am kind of embarrassed to love is 120 bpm. It’s like our brains are evolutionarily tuned into that beat. There is an added benefit to listening to music from a time in your life when your body was normal as music is excellent at taking us back in time both emotionally and physically.

The rehabilitation program Joaquin Farias set up for me has five basic goals

  • Wake up my muscles that are hypotonic and reestablishing brain connections to them
  • Get rid of the rigidity in my body
  • Reconnect my left and right brain
  • Help my body stay in parasympathic most of the time
  • Help my body to make it’s our dopamine again at normal levels

This is done through

  • Mirroring – using my functional right side to re teach my left – if both sides are abnormal you can mirror another person
  • Passive movement – in my case this can be someone else moving my body or my right hand moving my left side
  • Active movement – dance, walking, and reputations of exercises that help to remap my nervous system. Many of these are done in repetitions of twenty, six to twenty times a day
  • Exercises that increase my heart rate
  • Stretching

My program is individual to my body and symptoms but I do want to share as much as I can, as I believe it is helpful for others with movement disorders to know there are options out there.

So one of the most transformative parts of my rehabilitation plan is something Joaquin calls forced walking. With my disease my brain tries to inhibit my movements, one part says go forward and one part says stop at the same time. This makes walking feel like sludging through molasses. By using music and walking to the beat the body is able to bypass my brains inhibition. So every day I walk for forty minutes straight to the rhythm of 120bpm music. This was extremely difficult at first and required intense mental and physical energy. One of my arms has no swing anymore and walking fast caused extreme pressure to build in my shoulder so that it burned and felt like it would break. Joaquin says this is a good thing and the burning is my nervous system rewiring and mapping my arm. I also get extreme tremor as that arm is pushed to reprogram. Joaquin says as we move into normality again the tremor will increase and to always allow the tremor.

At first my walks were hard the whole time but over a week they have gotten easier. Now it only takes a block or less before my body kicks into fairly normal walking. The burning is now in my shoulder, elbow, wrist and sometimes fingers. This is a good sign that the mapping is moving down my arm. I now ever get a small arm swing for most of my walk, only an inch or two but I’m confident that will increase. The wonderful part is that after the walks I feel almost normal. At first this was just for 10-15 minutes but now it is for 5-7 hours.

My walks work better than drugs! They naturally help me make dopamine in addition as remapping my functional paralysis side. I can feel it happening and often times break into a smile – something that is hard when you have Parkinson’s. I now have a choice – walk, dance, or Sinemet. I usually only need to use Sinemet about every 40 hours and just half a pill.

Odd things are starting to happen as my hand remaps. It will put itself into odd positions. Yesterday and today it would start playing the violin which I have not played since I was twelve! Today I went with it and started bowing with my right hand to match until I got a very weird look from a guy watering his yard. My hand is starting to remember again!

Last night I was with some friends and brought out my 120 playlist to show them. As soon as I started playing one of the songs I could feel my dopamine increase. I’ve become like Pavlov’s dog in less than two weeks – the music alone can now trigger my cells to make dopamine!

The magic of neuroplasicity is amazing to me. This is just the beginning for me and I’m excited to see where it will take me! We CAN reprogram our brains to heal and music seems to be the key that unlocks the magic!

Thank you Joaquin Farias!

How to find music with 120bpm

Joaquin Farias’ book Limitless

Rehabilitation from Parkinson’s disease – yes permanent healing is possible

Sunday, May 28th, 2017

Did you know that if you have dystonia, typing is easier if you are listening to music with a 120 beat? Many of my exercises involving moving to music with a 120 beat as music causes us to bypass our frontal context to do movement.

This last week I traveled to Toronto to work with Dr. Joaquin Farias who specializes and in fact has dedicated this life to work in helping people with dystonias and similar movement disorders heal through neuroplasticity movement exercises. It was a life changing experience and today I am typing this completely off Parkinson’s medication.

For the first time since coming down with Parkinson’s two and a half years ago my body is still and comfortable without medication. I have tremor in my left hand still but some of that is my body trying to rewire my hand to my brain where the connection has been lost. In fact he says my tremor will get worse as I start to rewire and heal and loss my rigidity. I have gotten back a very small amount of my arm swing in my left arm since the beginning of the week and I am confident with work I can have normal arm swing again. Today I was able to throw a beanbag cow with a wrist movement where before this week I could only throw with a shoulder movement and had a hard time releasing to throw. These may not sound like much but Parkinson’s is supposed to be regenerative, getting worse, not better. And my body is not supposed to be able to heal and make dopamine again. But I never believed that and neither does Dr. Farias.

He believes I have a secondary dystonia to my Parkinson’s and a partial functional paralysis on my left side where my brain’s frontal cortex has disconnected from my body. This can be rewired with exercises similar to someone who has suffered a stroke. The dystonia can also be worked with through exercises that help stimulate the parasympathic nervous system. Luckily our brain holds an incredible neuroplasticity potential to be rewired and relearn function that has been lost. I also have a number for exercises to get my brain to make dopamine again, the neurotransmitter lost in Parkinson’s disease. If I can help my functional paralysis and dystonia, my Parkinson’s may actually be asymptomatic or very close to it!

I know this will be a long journey for me to get better including about two hours of exercises throughout the day, everyday, and small steps. I will probably still need medication some of the time.

I have so much more I want to share about my experience and will over the coming weeks. In the meantime, I highly recommend Joquin’s book Limitless.

Healing

Saturday, April 29th, 2017

I can heal, I do believe this. Yes I know Parkinson’s is progressive, yes I know I have a mutation that causes it. I’m a doctor, I’m aware of what my brain scan shows, I’m aware that I am l-dopa responsive. But I am getting better and it’s not just because of my drugs because I haven’t changed them yet I get better ever month. Anyone who has seen me recently can see this. I can type again, slowly but I am typing. I barely shake anymore. I forgot sometimes that I have this. I’m comfortable, I no longer feel like my skin doesn’t fit me. I can smile easily again – believe me this was hard a few months back. I have a bit of an abnormal gait and my left arm doesn’t swing but I can twist, turn and balance better than most 20 year olds.

Yes, I take over 30 pills a day; yes I make exercising every day a priority. But in many ways my health is incredibly good. My naturopath has a scale to measure quality of life. When I was diagnosed in October I was an 800. Normal people are below 300, excellent quality of life is below 500, good below 1000, fair below 1500, and above that is poor. Wednesday I was a 57. Yes 57! That’s better than most normies. My left side is still slow, I tremor a bit but that is it.

I don’t know what beating this looks like but to me it means staying under 500 for the rest of my life; learning how to do that and sharing any knowledge I gain with others with this disease. I think I will always be prone to get bad again if I don’t take care of myself, if I live in fear, if I stop living and enjoying ever moment. My Parkinson’s will always be there to remind me how to live and how not to live.

I’m going to Toronto in a few weeks, with my best friend, to work with Dr. Joquin Farias who specializes in working with movement disorders and neuroplasticity. I believe that I can make my dysfunctional cells work again.

Meanwhile I’m so happy to be walking, dancing, loving my animals and work and smiling! An incredible thank you to naturopaths Sam Evans and Laurie Mischley for sharing your knowledge. And every animal in the past 12 years who has showed me that nothing is impossible. Little did I know that in helping you I was helping myself.

For those of you with Parkinson’s see Using Supplements to Treat Young Onset Parkinson’s. I’ve recently updated this.

Using supplements to treat young onset Parkinson’s from LRRK2 mutation

Saturday, February 18th, 2017

As some of you know who frequent my blog, I was recently diagnosed with young onset Parkinson’s. I also recently learned that I have a genetic mutation called LRRK2 which is responsible for my disease. Over the past few months I have been working with an amazing naturopathic team (Thank you Dr.Samantha Evans and Laurie Mischley!) and doing my own research and I am actually getting better and feel like my brain is starting to heal! I want to share what I have been doing and also find a way to connect with anything else that is helping other folks, especially with LRRK2. I’ll get back to the animals soon!

My natural parkinson’s protocol for YOPD 8 (LRRK2 mutation) – click on the names for Amazon links

  • Sinemet 100/25 1/3 pill three times a day. This is the standard drug for Parkinson’s disease. I’m on a very low dose! I know my Sinemet helps my symptoms but it is really everything below that is healing me and keeping me on this low dose. That being said my naturopath firmly believes that Sinemet be started early and that it will actually slow progression by keeping the dopamine receptors from dying. It should only be reduced when the body’s need for it is less.
  • Niacin 500mg 2 capsules three a day . Niacin completely got rid of the severe anxiety component of my disease and decreased my fatigue symptoms significantly. Niacin helps with blood flow to your brain and helps preserve mitochondrial function. It converts to NAD (Nicotinamide adenine dinucleotide) which is showing promise for neurodegerative diseases.You need to take real niacin, not flush free and you will go through flushes. See The Niacin Flush I started with 500mg a day and slowly moved up to 3g a day. I rarely flush now and when I do it’s mild. There was a recent study on niacin and its potential benefit for genetic parkinson’s to slow disease progression. People with forms of early onset PD may benefit from Niacin.
    I followed Bill W. (who started AA)’s protocol.
  • Lion’s Mane 3g (6 pills) a day . I saw significant improvement in my fine motor control and bradykinesis with this dose. Lower dose didn’t help me. Lion’s mane contains NGF which helps repair nerves. This mushroom is pretty amazing. See Anti Stress Lion’s Mane Mushroom and Parkinson’s Disease. It also enhances cognitive ability and lowers stress. The dose I take sometimes causes mild itching.
  • Glutathione – I can’t say enough about glutathione. I get immediate improvement from the injections. We know that PD patients have reduced glutathione. We know it improves symptoms. Us LRRK2 folks don’t make it properly. It is a powerful antioxidant and reduces oxidative stress. I take a liposomal product orally which is now thought to work better than intranasal. To have it work orally you need a liposomal product. I use the LivOn labs packets as air and light cause a rapid loss of potency. Here’s a couple pubmed studies
    Glutathione and Parkinson’s disease: is this the elephant in the room?
    Reduced intravenous glutathione in the treatment of early Parkinson’s disease
  • Citicoline 1g a day has been shown to improve the effectiveness of l-dopa drugs like Sinamet. See Citicoline in the treatment of Parkinson’s disease . It seems to have some ability to repair the brain as well. My Sinemet doses last a long time, I think this is why.
  • Fish Oil 2g a day – helps increase dopamine in your brain and reduce inflammation, need I say more. Make sure to use a product that is tested for heavy metals and high in Omega 3s. Many people with Parkinson’s are low in stomach acid and don’t digest the capsules correctly in the stomach so use a liquid product. My naturopath is convinced that fish oil will prevent dyskinesis from Sinemet and allow you to take the drug long term.See A Simple Intervention in Parkinson Disease?
  • Vit D/K2 – vitamin D may slow down Parkinson’s progression. Most of us are deficient in it anyway. See Study shows vitamin might be beneficial for parkinson patients with certain genetic makeups
  • Vit B multi – Sinemet can make you deficient in B vits so I take this to compensate.
  • Ginkgo is an antioxidant which increases dopamine and blood flow in your brain. I take a supplement with gotu kola, ginkgo and Siberian ginseng, 2 pills a day. Gotu kola also increases dopamine production.
  • Magnesium with calcium and vitamin C This supplement almost guarantees that I will sleep well! Magnesium lowers stress and relaxes muscles. If you have issues with constipation it also helps there. If I forget my magnesium my sleep is off. Sleep is what let’s us heal!
  • Coenzyme Q10. My naturopath has found that this with fish oil and glutathione are the supplements that slow progression. I take 400mg a day. Chew the tablets as long as you can to get buccal absorption.
  • Nicotine – I use the small 7mg patches. This drug is deserving of a whole article which I will write soon. However it is the only thing we have that we know without a doubt reduces your risk of PD by 50% and slows progression. It is highly neuroprotective to dopaminergic neurons and makes your cells release dopamine. I also have a theory that it can reverse the damage caused by a neonicotinoid pesticide I was exposed to in my 20s. Of course it is also highly addictive.

This protocol is working well for me. If you have something to add that has helped you please let me know!

And so begins a new chapter in my own journey with chronic disease

Friday, October 28th, 2016

Today will be my last day not being on a drug that I will take for the rest of my life. As of tomorrow I will come to rely on a drug so I can move the left side of my body normally again. But with this comes hope that I’ll be able to use my body in the way that I did before my nervous system decided to stop working a year and a half ago. I look forward to dancing normally, doing yoga, typing with my fingers (Yes I’m dictating this with my voice), and I look forward to walking without people asking me why I’m so stiff. Already with an herbal called Mucuna I’m getting a hint to what it’ll be like. With taking a small amount of this herb, I have energy again and feel like myself. My skin is no longer too tight on my body, I no longer feel so twitchy and out of sorts and I’m not as painful because of the rigidity in my muscles.

Three days ago I was diagnosed with early onset Parkinson’s. It didn’t come as a total surprise, I’ve been having symptoms for almost two years, although I’ve been hoping for a long time that I have a disease called dystonia, which isn’t so great anyway. You would think with this diagnosis but I would feel sad and fearful. But really I don’t, I have found that I’ve smiled more in the last few days than I have in awhile. This came as a surprise to me also, I had no idea I would respond to this outcome like this. In many ways it is freeing to know what I have, it’s an illness I share with many many people in this world. There are treatments for it and there’s promise that there will be better treatments and even a cure for it within my lifetime.

And I’m finding that I don’t want to fight this but I am convinced that it can be cured or kept in check by embracing it. I think the key is actually accepting it but not letting it take over my life.

In my cancer book I wrote “And in embracing life fully, I found that these dogs and cats didn’t progress into death. Once we have embraced death fully there is nothing left but to live. And live they did!” While I do not have a death diagnosis I feel the same. I plan on living fully! I look at the animals I treat that have cancer who live a long time and in many cases they aren’t in remission but their body has learned how to live with the cancer within it and it is not the cancer that kills them or even makes him sick. Many of them died of normal old age changes and live better lives than if they had not been diagnosed with cancer. So I think the key is finding peace within my body, within the fact that I will have to take drugs probably for the rest of my life. I think the key is opening my eyes to each day and not regretting anything that I don’t do. I think how to live with this disease, is to find happiness in every step of the way and to appreciate everything in every moment. To not say I’ll do that in 10 years, to let go of all resentments, to take ownership of living my own life in the best way possible. To find joy and move towards joy. When I am eighty someday, and no Parkinson’s does not kill you, I want to look back and not have any regrets of the things I didn’t do, especially the things I didn’t do while I could still do them. This is really no different for any of us whether we have a chronic disease or not.

Everyday I plan on telling my dopamine producing cells in my brain how much I love them and care about them. I plan on getting myself in the best physical shape possible and everyday making a conscious decision to move towards joy. I get to dance again!

I have not been me for a long time, if it takes a drug or two to make me me again, that’s okay. I look forward to what the future holds and I’m ready to meet it with open arms.

One last thing, please don’t feel sorry for me. I don’t and you being sorry for me doesn’t help me. This is part of my journey and I plan on learning and growing, loving and living!

Blessings!