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My ongoing experience with energy healing

Eight years ago, when I was newly diagnosed with Parkinson’s, two things happened that would change the course of my life forever: first, I met a like-minded soul who viewed exercise as medicine. He had been diagnosed ten years before me and looked pretty great. I said, whatever he’s doing, I want to do it, too because he’s staying ahead of the curve. Second, several of us attended the “Recovery from Parkinson’s” conference in Santa Fe.

For 3 days, we heard story after story of people who had reversed or overcome their Parkinson’s symptoms. I attended sessions with a friend’s mom. We had virtually nothing in common, other than a Parkinson’s diagnosis, but we left each and every session exclaiming: “They were talking about ME! That story is the same as MY story!” We were convinced that we needed to spend the summer in Glenwood Springs to get equine therapy, (which,by the way, is wonderful and magical) that we needed to go to a sound healer (I spent $500 to spend half an hour with headphones on, listening to a refrigerator hum), that there is a “Parkinson’s personality” and more likely than not, the disease can be traced back to childhood trauma, and that we needed to find someone to prescribe low-dose naltrexone. The very last session, on the very last day, was QiGong Master Mingtong Gu. I left not knowing what exactly QiGong was, but that it made me happy, and that Mingtong Gu was the happiest person I have ever met, and Bianca Molle says she was cured of Parkinson’s through QiGong.

The bottom line is, people can reverse a myriad of symptoms, but they were all one-time things, they couldn’t be replicated. These people truly believed they had found the magic bullet.

Nine years in, I say- More power to them! No matter how diverse our symptoms are, recovery is possible. Energy healing, complementary therapies, whatever you choose to call it, there just might be something there.

A big part of this disease, after all, affects mood and cognition and other ‘non-motor’ symptoms, all of which are hugely affected by stress, and these therapies work at overcoming stress.

The Davis Phinney Foundation has a lot to say on the subject- here and here and you can even watch a video of Movement Disorders Specialist Dr. Benzi Kluger here.

The high cost of living well with Parkinson’s

As I was inserting my credit card to pay the $668 co-pay for 30 days of my Parkinson’s medication, I thought about how Michael J Fox had said that the average Parkinson’s patient spends an average of $16,000 out of pocket on their healthcare each year. The entire pharmacy staff scrambled to find me any kind of coupon that would lower that amount, but no luck. That number seems high, but then I mentally calculated how much I spend, and how quickly that number can rise, and I see the urgent need for us to speak up.

Exercise is essential for people with Parkinson’s. For some, exercise is so effective that they consider it to be  like just another medicine. You don’t miss a dose! With health club costs so high, many are faced with a choice: find a full-service health club and hope they have all the classes you’ll need, or pay high drop-in fees. The typical drop-in for a yoga or spin class, for example, can be from $15-25 – while annual membership dues average $100.

 Not everyone is lucky enough to live in a city like Denver, where PAR (Parkinson’s Association of the Rockies) underwrites many classes, so the cost to us participants is free.  It used to be $10 a class. Considering that many people with Parkinson’s attend multiple classes every week, this can become very expensive. For instance, Mondays I dance, Tuesdays I take QiGong in the morning and PWR! class in the afternoon. Wednesdays and Saturdays I go boxing at the Power Punch class offered for free by  PAR. Thursday is my day off, and Fridays I take another PWR! class. At $10 a class, I spend $40 a week for dance, QiGong and the Friday PWR! class . Add in the Peloton app at $12 a month, and the online subscription to Qigong, and I’m spending $135 per month.

Many don’t have the dizzying array of options that I have, and that’s a good thing.  Parkie’s are the definition of “paralysis by analysis.” By the time I decide on which of the 3 classes to take, it’s too late to make it on time to any of them. 

I also see a Functional Medicine Doctor, which averages $150 every 2-3- months. Then there are acupuncturists, physical therapists, massage therapists, and chiropractors to consider. Our budget has become so tight, with me not working, that we had to give up our monthly house cleaning service. Our house is so filthy, because I am unable to keep up on my own, that I won’t let them come for the occasional deep-clean, either. 

The cheap knock-off running shoes I’ve been buying hurt my feet. I’ve come to the realization that I have to invest in a good pair of shoes, the kind you buy from a running store that puts you on a treadmill so that they can analyze your gait. Then there are various supplements, probiotics, essential oils and  high CBD oil. 

And I try to eat organic foods, in order to limit my exposure to toxins. Organic foods are expensive!

Add in my $4,000 insurance deductible, and I’m right within range. So it’s not such an unbelievable number, after all. When you consider disability payments are sometimes the only income people have, Parkinson’s can quickly become a very expensive thing to have.

 

 

My experience with CTFO CBD oil

I admit, I was pretty skeptical.

I ordered the highest CBD oil they have, which is 1500mg, and I have to say: it kicked my butt!

The CBD oil completely knocked me out, and I slept more soundly than I have in years. However, it made me feel groggy in the morning and gave me a headache. So instead of taking the recommended 6 drops, I took 3 drops and that was just right.

The problem is that I am still supplementing with marijuana that contains THC.

Things I am learning from Kelsey

Kelsey Phinney’s podcast for The Davis Phinney Foundation is excellent. Kelsey is Davis’ daughter, and she graduated from college with a neuroscience degree. She interviews the most fascinating people for her podcast!

Listen to her interview with Dr. Trevor Hawkins on CBD here.

And I’m learning a lot that I didn’t know. Or I knew, but not in this context.

Like:

  • REM Sleep Disorder is actually caused by medication.
  • Forced exercise can decrease Parkinson’s symptoms by 35% – those are better results than having DBS surgery!

What is CBD oil and why is it good for Parkinson’s?

What is CBD?

CBD, or medical marijuana, is all the rage these days. Just type it into YouTube and you’ll see the miraculous effects for yourself. Personally, I use CBD, or medical marijuana, successfully to (a)sleep, and (b) treat and prevent dystonia.

The human brain has receptors for the Endocannaboid system, which CBD or cannabadiol is a component of. There are hundreds of cannnabanoids in the marijuana plant, including THC, or the psychoactive part of the marijuana plant, the part that makes you high. Cannabanoids can reduce inflammation, calm spasms, treat nausea, reduce cramping, and many more uses.

Where do CBD’s come from?

CBD comes from marijuana or hemp plants.

There are marijuana plants, which CBD oil is derived from. Marijuana plants have been bred to have higher or lower ratios of THC to CBD. Most marijuana plants are bred to get you high, or have higher ratios of THC. Charlotte’s Web is an example of a plant that has been bred to have lower ratios of THC and high ratios of other CBD’s that have been proven to help epilepsy. This is the type of plant that is safe for even children to take. It does NOT make you high.

CBD is also derived from the hemp plant, which is a marijuana plant with all of the THC removed. To be considered hemp, the plant must contain less than .3% of THC.

For Parkinson’s, anecdotally CBD can help with sleep, dystonia, preventing tremors, helping with rigidity, pain relief, anti-anxiety, and more. But you don’t know if it works, or how it works on your symptoms, until you try it.

What form of CBD do you take? How much?

To clarify, I do not smoke marijuana.

To sleep, I take a tincture infused with CBD oil. It’s from IoVia, and I get it at a Dispensary on Colfax Avenue called GroundSwell. It’s like the Apple store of Dispensaries: clean, modern, everyone is super helpful and they don’t make me feel like a total rookie, or the oldest person in the room, which I am.

For dosages, you’ll want to experiment to find just the right dose for you. Consult your doctor. I have to say that, but if your doctor is like mine, they don’t prescribe it and will give you an earful of how not enough research has been done, so really, you’re on your own. 10-40 mg is gonerally the dose to stay within.

It takes about a month to build a “tolerance” to THC, so my dose might be different than your dose. The rule I’d stress is to start slowly. Nothing’s worse than taking too much, and realizing it too late. I used to take a high CBD blend – 200 or 500 mg, meaning that the entire bottle contains 475 mg of CBD and 25 mg of THC, and there are exactly 50 doses; Now I take a 1 to 1 ratio blend, or 1 mg of CBD for 1 mg of THC. Each bottle of IoVia comes with a pre-dosed dropper, so I know how much one dose is, and that one dose remains consistent whether it’s the beginning or the end of the bottle. I drop the tincture directly under my tongue, to let the CBD directly enter my bloodstream and bypass my digestive system.

To treat and prevent Dystonia, I use a transdermal cream on the legs. I don’t know why they work differently for me, but they do. The cream works immediately on my calves, and within about 20 minutes, my whole body relaxes. I use the 5/5 blend, or equal amounts of CBD to THC. Each bottle contains 30 1 gram doses. 1 pump equals 1 dose. I used to suffer from dystonia, where my right foot turns It use inward, making it impossible to walk. It used to happen 3 or 4 times a week, now it happens once a month   or lessl

Is CBD legal?

Marijuana is legal recreationally in Colorado, California, Oregon and Washington. Other states have laws that allow marijuana in certain medical circumstances. In states where recreational marijuana is legal, you must purchase it from a Dispensary.

Hemp plants, on the other hand, are legal in all 50 states.

Not all of us are lucky enough to live in states like Colorado, where marijuana is legal. And you CANNOT take marijuana across state lines. So in those cases, the best option is to take CBD derived from hemp. Like this CBD oil.

Does CBD need THC in order to work?

No.

However, CBD oil works more efficiently with a little THC. It’s called the entourage effect, where all the endocannaboids work best when they’re all present, but they’re not required.

The way I understand it is that a little THC “wakes up” the system, and without it, you just need more CBD to work. And CBD actually slows down the absorption of THC.

Personally, the LAST thing I need is to be high. I don’t need to be any slower than I already am, and so ‘I want to have as much THC bred out as possible.

What’s so great about sublinguals?

To take a sublingual, you must hold the tincture under your tongue for at least one minute.  The blood vessels under the tongue can absorb cannabanoids,where they take effect immediately. If you swallow it too soon, it can be uneffective at worst, or diluted at best. Sublinguals are intended to be absorbed directly into the bloodstream. They are designed to bypass the digestive system entirely, so it doesn’t matter whether you ate a burger for dinner, where the marijuana is slowed down by the protein, or a bowl of spaghetti, which digests more quickly.

 

 

 

 

For us mid-stage Parkies

Doesn’t it seem like everything written for Parkies is directed at the newly diagnosed? For those just starting out on the journey who need to research still? For those wondering, does exercise really work? (Yes, it does.) What are the common side effects of all that medication? (Sleep, constipation, to name a few.) Is DBS in my future? (We need to shift our mindset to think of DBS as just another weapon in our toolbox. It’s a stepping stone in out treatment.)
I was diagnosed with young onset Parkinson’s Disease in 2010, but the tremor in my left thumb emerged three years earlier, just 6 weeks after the birth of my first son. I was diagnosed with Hashimoto’s Disease, or post-partum thyroiditis, and given beta-blockers, which effectively squashed the symptoms for another 3 years, until I stopped breast- feeding my second son and my hormones took a dive, creating emergency on Planet Me.
There is a picture of me from this time period at the Downtown Aquarium, which I did not buy, because, to my horror, I was posturing with my left hand in the shape of a pistol.
How many of us have had the experience of catching ourselves with our elbow up, wondering, “What am I doing? How did my arm get like that?” Yet another side effect of too much dopamine medication.
Anyway, those are my credentials. I was an Ambassador for the Davis Phinney Foundation, until I had two emergency surgeries back-to-back (not Parkinson’s related) and needed a full year to recover from those. I acted as a Guide for the Manual, Every Victory Counts, and strangers will recognize me from that. “You look so familiar. Have we met? Oh- I know- you’re from the Davis Phinney Manual – the woman who walks backwards around the park because of your dystonia.”
Yeah, that’s me.
I’m full of stories like that. Sometimes you don’t know what’s going to resonate with people. That one does, so I’m running with it.
There just don’t seem to be any voices for us middle-of-the road Parkies, who have had the disease too long to be considered “newly diagnosed” and not long enough to be considered “advanced stage.” Those of us whose Parkinson’s advanced gradually, and then suddenly.
My own experience is that I lived for a long time in the world of “This sucks a little bit,” where my kids didn’t believe I actually had Parkinson’s, to “Oh-Shit-ville” where my kids treat me with kid-gloves. And I went off the cliff suddenly, in a matter of a summer.
Suddenly, all that exercise seems for naught. I caught back up with those who have NOT spent the past 8 years spinning and boxing their hearts out, caught up in some Faustian bargain where you must exericise to move to exercise to move to exercise.
I live in a world where dance class has replaced Spinning, and Tai Chi has replaced CrossFit, and I can no longer keep up in a regular yoga class, where falling asleep on a PEMF mat has replaced pilates.
How things change.
And yet, I still hold out hope that these energy healing modalitites can stop or reverse the progression of my disease. That Qi Gong will eventually suspend me from further deterioration, that CBD oil will work its magic, that there is a common Parkinson’s personality we all share and sound healing has the ability to unblock that energy and let it flow freely. (Micromanaging sound familiar?)