A Path With Paws

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

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.

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.

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 Usually 1/2 pill 3-4 times a day. This is the standard drug for Parkinson’s disease. I’m on a very low dose! I also will vary the dose I take based on feeling into my body. And yes my naturopath who manages my medication supports me doing this. 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.
• Lithium I take 40mg a day. We have misfolding of proteins in our body and brain. This can be corrected when we sleep but only if we have enough lithium. In addition lithium helps dystonia symptoms. If you live in the pacific northwest there is no natural lithium in our soil, possibly a reason our rate of neurologic diseases is higher than other places.
• Nicotine – I use the lozenges (usually 2-8g a day) because I had to many skin reactions to the 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!

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!