Parkinson's Disease

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I'm new here!

Hi, my name is becchae. I've been diagnosed with Ehlers-Danlos-linked Dopa-Responsive Dystonia. Basically my muscles contract so hard that they yank my joints right out of their sockets. Thankfully levodopa helps enough while I'm awake so that my joints only sublux a bit, not fully dislocate. I am nearly fully bedbound. 6 months ago I was an active and healthy 23 year old. Now I have no purpose, happiness, or peace. I do blame this on the doctors that wasted months, in some cases years, assuming I was a drug seeker or a psychiatric case instead of a neurological case, which allowed my disorder to generalize all over my body and resulted in permanent brain and nerve damage. I cannot feel entire parts of my body and what I do feel is always pain. I will never trust a doctor or a hospital again, not that I ever really did to begin with. I am, however, now a wealth of resources because nobody knows anything about my condition. So come chat with me about POTS, EDS, Dystonia, hell, Parkinson's. I'd love to feel a tiny bit less useless stuck here with everything that has every brought me joy ripped away from me in a few short months by the ignorant and unempathetic.

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Good Mental Health

I think good mental health is wanting to know everything possible (be responsible for your own existence and enjoy the rest of existence) as depression is not wanting to be responsible for anything. This is why they talk of a saint being able to walk through hell without getting burned. He is lost in pursuit of knowledge ('Oh look at that interesting flame!').

It is why my mind is still alive and trying to make sense of the world around it, including symptoms of its own unease /disease, including depression of my own when it arises and what might be Parkinson's disease (personally I think he should keep it as I'm not sure I want it).

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People forget that forgetting is more than names of people, places, objects and even time. It is forgetting sequences, what things actually do (how you operate them to achieve a result you want) and eventually the significance of anyone and everything (who is that person and what is he doing in my house? Is this my house?).

By the way mental deterioration isn't a blanket issue, it is like The Curate’s Egg, good in places, bad in others. My wife still notices things I miss and has ideas I wouldn't have thought of. One symptom I have noticed is that she is literally becoming more open. By this I mean doors aren't shut and windows thrown open, which I think shows this return to childhood innocence and irresponsibility.

Alzheimer's and dementia are about forgetting but in the case of Parkinson's, it is forgetting to move at all. I had a friend in America, whose friend on LSD eventually became nothing more than a child or vegetable through use of this drug. It may remove the veil of perception but it also removes all memories it seems.

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Wrong again?

Last night I stumbled upon a post from here on Pinterest, which covered Parkinson's. I thought various symptoms I had were down to various other factors, like a recent bug, twenty years and more of migraines (brain damage) or the fact that I might be autistic. Now it seems a lot of my symptoms through the years could be down to slowly developing the above disease. Oh well, not pernicious anaemia either. Time for a doctor's appointment to be sure.

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Unable to be there

In the past 3 years I have lost 2 younger brothers and 2 brothers-in-law. They have all lived too far away for us to travel. Both my husband and I are seniors with health issues. This morning I received word that my dear, sweet sister who lost her husband two years ago was taken to ER with chest pain and a mass was discovered that could be cancer. She has Parkinson's and as a result many other issues. Fortunately her daughter's are very close and caring. But my heart is aching to be with her I have so many emotions bombarding me that I feel paralyzed.

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Some interesting Facts from Netflix's New Documentary, 'Hack Your Health: The Secrets to your Gut'

The gut is the center of a biomedical revolution. This whole field is disrupting modern medicine.

Autism, Depression, Anxiety, Parkinsons, and Cancer are ALL related to the gut microbiome

Our gut affects our whole body. The gut is the second brain. Our brains have never existed without signals coming from the gut.

70% of our immune system lives in our gut.

You get your first habitable microbes when you are born out of your mother's womb. We shape our gut microbiome based on our experiences. The relationships you have, the pets you have, exercise, stress, the food you eat. Because of this, everyone has different microbiomes. It is a collection of microbial memories.

Knowing the microbiome is the key to health is key because you can't change your genes. BUT you can change your microbes by simple edits to your diet and lifestyle.

The modern-day microbiome is pretty unhealthy and is pushing up to this prevalent rise in chronic conditions such as hypertension, food allergies, diabetes, obesity, etc. The way we think about disease needs to change.

Changes to our environment. Western diet. the way babies are born (c-section), baby formula, sanitation, and antibiotics, all lead to decreased microbiome diversity, Exactly what we see in today's industrialized microbiome.

Currently, in the states, 60% of the calories eaten are ultra-processed and ultrally refined. This strips it of its natural ingredients and adds in a ton of processed sugars and chemicals.

When you look at quote healthy labels, it is hard to depict what is even in it. Most healthy labels are full of sugars and processed chemical components. Because of this, it is very hard to navigate what you should be eating. The food and wellness world is incredibly confusing.

Current recommendations in the United States recommend 28-40g of fiber per day, HOWEVER on average we are only eating 15g at most in the average American diet. The field of microbiome science is realizing we need to be eating access to 50g of fiber per day. If you don't feed your microbes fiber, they start to eat you. If you stop eating dietary fiber, the microbes need to start eating something. If there is no fiber, it will start to eat away at your mucosal gut lining and spread to various parts of your body, causing inflammation all over. Which can lead to many diseases such as IBD or IBS.

If a gut microbiome is very diverse and has a different variety of bacteria, then it can adapt to what life throws at us. A bouquet of possibilities.

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I'm new here!

Hi, my name is Confused2. I'm here because I had Kyphosis/Scoliosis repair surgery over 11/2 year ago and I'm in more pain than ever. I was referred to Pain Clinic who recommended seeing a Psychologist ( I guess because past trauma is making my pain worse than the normal person) I am so insulted, angry and confused. It wouldn't be the 17 hooks , screws rods etc. on both sides of spine? Then the Surgeons assistant ( he's much too busy to see me) is referring me to Neurology and actually suggested I might have Parkinson's Disease? Please tell me if this sounds as wrong as I do!

#MightyTogether

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