A healthy body needs tender mercy

As I have looked for insights into how a person with Parkinson’s or any illness should eat, I found the article Eating “Healthy” Destroyed Me VERY insightful. In the article by Ema Hegberg (found at Medium… link to article is at the end of this post.) Ema said: “I was doing everything right but it felt so wrong

“It was a gloriously golden, warm September afternoon and I was crumpled up in the fetal position on my bedroom floor, ugly crying. I had nothing left in me. I was a twenty three years old, newly married, employed, financially alright, plant-based vegetarian, and for the six hundredth day in a row, I felt horrible.

I was supposed to be packing for a leisurely weekend camping trip but I could not muster up a shred of mental, physical or emotional energy to pack or prepare. In frantic texts to my new husband, I described myself as “drained,” “zapped,” “dried up.”

Somewhere in my exhausted tears there was frustration. This should not be happening to me. I had been a vegetarian for a decade; for the past five years, I had been eating a “clean,” plant-based diet. I took a B complex, I didn’t have anemia, I drank vegan protein shakes almost daily even though they made me cringe, I drank enough water, I slept well. I should be ok. Yet here I was, crying at 2pm because I felt like zombie.

And then a strange thing happened. I had not had animal protein in ten years and I hadn’t craved it in nearly as long, but suddenly my body instinctively called out for meat.

A few days later, I ate chicken. A week or so later, I had sausage. I was a carnivore again. Slowly, I regained strength.

When I gave myself permission to eat meat again, I started to look at all the many other foods I had demonized and just how sick I had become.


Meat had been the first thing I nixed.

After that, I whittled down the list of “safe” foods more and more.

I would allow no processed foods; everything had to be in a form that my great-grandmother would recognize. I had read that on a wellness blog somewhere;…………….

I wouldn’t eat granulated sugar, because sugar “lights up” your brain the same way cocaine does. (As it turns out, so does sex and laughter.) All sugar had to be “natural:” honey, maple, coconut.

I severely limited my dairy…………………………………..

Gluten was of course suspect. It seemed to be like the tobacco of our time; everyone was doing it but silently it was killing us…………

Eggs were questionable. ………………

I’d never picked up a coffee habit, which was good because coffee could shorten your life. Green tea was better. No sugar, no milk.

Vegetable oils were just downright bad. ………………………….. So I only ate olive oil uncooked. But that was ok because I had coconut oil, a gift from the gods.


What did this leave? What was “safe?” Fruits and vegetables, beans, lentils, nuts, coconut products, olive oil, oatmeal, buckwheat, lentils, quinoa, yoghurt, honey, maple syrup.


I can come up with that list very easily because that is pretty much all I ate for four years. Seldom did I “cheat.” It wasn’t worth it and I knew it. Eat one of the forbidden foods and I would kick myself for hours or days afterward. Psychosomatically, I would feel uglier and fatter after slipping up and eating something made with canola oil, or a small piece of dark chocolate with refined sugar.

This is what I ate everyday for four years:

  • Breakfast: Oatmeal or “overnight oats” with smidgen of coconut milk and smidgen of honey (maybe), topped with walnuts and a banana.
  • Snack One: Apple or banana.
  • Lunch: A very large salad of organic spring mix with beans or sprouts, dressed with olive oil only.
  • Snack Two: Fruit, raw fruit and nut bar, a spoonful of nut butter, or a homemade smoothie.
  • Dinner: Another salad the same as the first, or perhaps quinoa with lots of cooked vegetables.
  • “Dessert”: Another large bowl of oatmeal, nearly identical to the first. Perhaps refined sugar-free banana bread slathered with coconut oil.

And every day, after eating like this, I felt so righteous. I did yoga almost every night. Each day, I walked all over my college campus with a twenty pound backpack. I got eight hours of sleep. Frequently, people commented on my weight and how delightfully “skinny” I was (five foot seven, 125 pounds). I was doing everything right; I was being so very good.


About three years into being stringently a “clean” plant-based eater, I started to have severe chest and stomach pain.

It felt like the food I was eating would get stuck in my esophagus. ………………………………….. I stumbled onto some research about b12 deficiency in vegetarians — something no doctor had warned me about — so I started taking b12. The pains abated.

Then my energy levels plummeted.

…………….. I tried a naturopath, who if nothing else recommend an elimination diet to figure out what food sensitivities I had (because I must have at least one). …………………………..


What I now know:

Daily, for at least four years, I had a deficit of several hundred calories. This did not cause me to lose any weight because my body had gone into starvation mode. Functionally, I had no muscle. The only micro-nutrient I got all of my daily value of was fiber; everything else I lacked, but specifically I wasn’t getting enough protein. I got maybe a tenth of the protein I needed, and it was never a complete amino acid profile. My total cholesterol was, at its lowest, 113mg/dL. There is research to show that cholesterol as low as mine increases risk for depression, anxiety, suicide, cancer and heart problems.

Other curious things from this time: ……………………………….. All of these things have resolved since my eating got broader.


I was devoted to several. Their promises of health equated to enlightenment in my eyes, because I’d never felt fully well. (In retrospect, I’d been severely anxious since age five and had very low self esteem.) The bloggers —almost entirely white females — were beautiful, glowing, thin, confident and they accomplished great things. They published books, the jetted off to Bali and Spain, the wore amazing clothes and did yoga in the sunshine. I was a sad, quivering American teenager who was homeschooled and friendless. Wellness blogs played upon every insecurity I had.

I’d found myself in this place, in no small part, because of wellness bloggers.

…………….. I believe I had an eating disorder, just not the kind everyone talks about. Mine was called orthorexia, meaning I was eating “too well.”……….

Although I’ve nearly always had anxiety, my depression, I believe, was largely sparked by my “healthy” diet. While people praised how saintly an eater I was, my body was begging for more nutrients. ……….. When I started to eat meat again, my depression began to fade.

I remember every detail of the first time I ate a processed food again; I had Late July brand tortilla chips. A very kind new boyfriend (now husband) accepted my issues with food and patiently walked me through the stages of my guilt. The same day we had dried organic pineapple rings that were lightly sweetened with granulated sugar. It was a big day for me.

Reconditioning myself to be ok with the foods I’d categorized as “bad” has taken time and there are moments when my twisted perceptions of eating creep back in. Now I eat just about whatever I please. My diet is still composed of mostly fruit and vegetables, and I am the most clear headed I can recall being. For the first time, I have muscle and I can tan.

What the wellness bloggers portray is no longer what I’m after. Yes, they look lovely but I’ve no way of telling if they actually feel present and strong. That’s what I want now, and the only way I can get there is if I care for my body in a way that it understands. Deprivation is not its love language. It needs bounty; it needs grace.

https://medium.com/@emahegberg/eating-healthy-destroyed-me-ac0abc546445

MISPERCEPTIONS

This presentation was given by Joseph H. Friedman MD at the May 29th, 2018 World Parkinson’s Congress

“We all misperceive things. A common example is the sensation that the world is turning after we spin ourselves quickly around and then stop suddenly. It can be so severe that we may even fall down. In Parkinson’s disease (PD), there are a number of misperceptions that may occur as part of the disease, and may seem puzzling to the person with Parkinson’s (PWP) and the family. The misperceptions usually affect the person with PD, but there are misperceptions by others concerning the PWP.”

……I went through the LOUD protocol… but my psyce makes it very difficult for me to shout… I find it exhausting!

“Perhaps the easiest to understand is speech. Some PWP perceive their speech as being louder than it really is. This, of course, increases communication problems, and may contribute to the soft speech of PWP. In most cases of soft speech the patient is aware of the softness, but simply can’t muster the strength to make the vocal cords vibrate adequately, but in some cases, it occurs because the PWP thinks she is talking louder than she really is. The problem can be remedied by teaching them to talk louder than the PWP thinks is “necessary” because it isn’t as loud as it seems to the speaker. These PWP need to talk to the world as if they are all deaf.”

……I totally relate to this next paragraph. I blamed my poor spacial perception on my eyes…and double vision.

“Many PWP do not perceive spatial relationships as they did before the onset of PD. This occurs in a number of settings, and is particularly important for driving. It is not rare for a spouse of a PWP to complain that they are never in the center of the lane, but always to the right, or to the left, or sometimes too close to the car in front. When confronted, the PWP will disagree and confidently state that the car is, in fact, in the middle of the road, even when it isn’t. This occurs because of changes in parts of the brain that process visual input, which causes a distortion in what is perceived as the middle, or up, or down, causing the PWP to argue, because, to the PWP, the car is in the middle, but it really isn’t. It is difficult to convince PWPs of problems such as these when their own personal and repeated experience indicates that they are in the middle of the road. A similar problem occurs in PWP who think they are closer to a chair than they really are so they sit down, and almost miss the chair. Sometimes people will actually miss the chair, and injure themselves.”

…... I don’t use prescription drugs, so I don’t think this next paragraph relates to me.

“One of the most surprising misperceptions concerns dyskinesias. These are involuntary movements that may be fluid or jerky. They may involve any part of the body, face, head, hands, legs or trunk, and cause the person to look fidgety, like they are dancing in place, or uncomfortable. Michael J. Fox suffers from this, so you can see what these movements look like on his TV shows, or you can watch a You Tube video of PWP who suffer from these movements.  These are side effects of long term use of L-Dopa and are very common. They are not uncomfortable, although they may look like they are. The surprising observation is that people with this type of movement disorder, whether in PD or any other condition, often perceive the movements as much less than they really are, sometimes not recognizing that they are present at all. Even more surprising is the observation that when patients look in the mirror they do not see the movements, even though they are present, but when they see themselves on video they are usually quite surprised by how prominent the movements are. For unknown reasons, the brain perceives the movements only when they are not occurring at exactly the same time as they really are, so that the video is perceived accurately, but the live movements are not, even with a mirror. Of further interest is the observation that PWP almost always accurately perceive their tremors.”

……this one really surprises me.

“PWP often feel that they are weak, most particularly in the legs. In a study we performed, 40% of PD patients thought that their legs were weak. Sometimes they felt that their legs were “heavy,” “encased in concrete,” “made out of lead,”, “dead, “ “wooden,” etc. Yet the legs were not weak. The brain perceives the reduced motor control as being weakness, even though the problem is really reduced control.”

…...as mentioned in the Laugh post.

“I have never heard a PWP report that they move less than other people. In fact, PD patients are almost always “akinetic” to some degree. This means that they have fewer spontaneous movements than other people, which is readily seen in the blink rate. PWP blink less than normal people, contributing to their facial “staring” expression. They also swallow less than others, which is why saliva pools in their mouths, leading to drooling. Thus, PWP do not realize that their immobility is a difference between them and others.”

……..and also in the Laugh Post

‘In addition to PWP misperceiving themselves they are also not perceived properly by others. This has not been properly studied but the few papers published on this topic indicate that people, including health professionals, have a more negative impression of PWP they haven’t met based purely on their facial expression, viewing them as depressed, angry, less socially involved, less interested and less pleasant based on how “masked” their facial expression is. These impressions were completely unrelated to what the PWP actually was like. This unfortunate problem may underlie difficulties PWP experience relating to people who don’t know them.”

…….the link to the original post is below:

There are a number of other misperceptions that seem to be more common in PWP than in the general population, and understanding that we all perceive the world differently, and that these differences reflect not only our genetic makeup and our specific experiences in life, but also the changes that take place within our brains as a result of aging or disease processes.

https://www.worldpdcongress.org/home/2018/5/29/misperceptions

Smile

Image

People frequently say to me…”Smile… Things can’t be that bad.” I can be laughing on the inside, but it is like I forgot to tell my face. It makes me wonder how long I was experiencing symptoms prior to the official diagnosis, When I met with the movement specialist, she told me I had a clasic Parkinson’s mask.

The following paragraphs are excerpts from tomorrow’s post on Perception,

“In addition to PWP (person with parkinson’s) misperceiving themselves they are also not perceived properly by others. This has not been properly studied but the few papers published on this topic indicate that people, including health professionals, have a more negative impression of PWP they haven’t met based purely on their facial expression, viewing them as depressed, angry, less socially involved, less interested and less pleasant based on how “masked” their facial expression is. These impressions were completely unrelated to what the PWP actually was like. This unfortunate problem may underlie difficulties PWP experience relating to people who don’t know them. “

“…………This means that they have fewer spontaneous movements than other people, which is readily seen in the blink rate. PWP blink less than normal people, contributing to their facial “staring” expression. They also swallow less than others, which is why saliva pools in their mouths, leading to drooling. “

Describes me exactly. I’m pretty sure my body produces extra saliva… I feel like a drooling machine.