Parkinson's Disease

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40 years on…..

Forgive the length and introspection of the following post…. it has helped me just to write to continue “sorting things” out. The very long story short is that after forty years of a very successful life (and an invisibly (to me) emotionally abusive marriage) I have reclaimed my life. Intensive therapy, the support of friends I didn’t know I had, reminders that I hadn’t always been this way and enough money from inheritance to relieve my terror of financial isolation opened this door. And within ten days of beginning the necessarily secret steps into this reclaimed life, I was diagnosed with Parkinson’s disease.

This community’s candor, trust and sharing are helping me shed the layers of these years’ false lessons. If I can stop defining myself by chronic traumatic stress, perhaps I can work on not being defined by my Parkinson’s.

Now to the gory details….

To start, I will claim a life of privilege - not financial wealth but physical safety, economic security, shelter, food, education. Raised in an inclusive, joyous faith. Ethnically white at a time when that really mattered. Being a woman could have been a barrier, but I was raised to think that gender did not limit me. (My later professional world did not agree with that!) The good news (another ‘successful’ resume) is that I come from an intact family and have had good relationships with family members ( I think. ) Organically, I am very smart (professional ‘IQ’ tests as a child, fast track, etc. ) That does not mean I am smart in the real world. A great professional resume of degrees, job offers, career, earnings. In retrospect, do I see signs of perfectionism? Why did I always feel the need to earn ‘it?’ Well, I was rescued at age 25 by someone smart, attractive, successful, outgoing — did I say, outgoing? As an extrovert, he pulled me (the introvert) into his embrace of the world. Someone once asked me (ten years and three children later) why I married him, I said because he made me laugh. With all my personal success, I didn’t laugh— I was busy achieving.

I’ve had excellent clinical support for a myriad of health and mental challenges since my teens. Living in a large urban area with lots of teaching hospitals and my career in healthcare systems combined with good insurance allowed me to find and rely on good professionals. I was a good patient. I ensured that my clinicians talked to each other. I disclosed my symptoms. I acted on their advice, combined with my own research and second opinions.

And I never talked about emotional distress in my marriage, after all, I chose to be in my marriage.

And I (at age 65) just left a 40-year marriage that was viewed by outsiders as a great success. However my children, my clinicians and even associates in my faith community cheer me on, and wonder why it took me so long it to get here. (I called them ‘associates’. I hadn’t had a new ‘friend’ in 20 years. But I have learned that they really are friends - I can trust them (I think!)) When I realized, after renewed, intense work in therapy, that this wonderful husband was not ever going to be different no matter how hard I tried, and that he was cruel to me, that it wasn’t just me, I knew I had to escape. “Reclaim my life“ as a friend described it. I had already realized some of those things over the decades, but I was literally terrified of financial isolation, that his punishment would be to lock the money up, and to tear our children apart in a vicious custody battle citing my years of “psychiatric care” (as he called it. )

When my engineer father died two years ago at age 92 (my mother having died ten years before,) Dad owned the house where my brother and I grew up. Selling that house gave me, based on my state’s laws, enough money of my own to survive, no matter what my husband did. That freedom was life-saving. And when my husband tried to control that money, I knew I had to leave. I could not resist him. Drawing on all those career skills and finding more friends that I knew I had, I methodically and secretly rented a temporary apartment, a storage unit, movers for the things I owned from my family (grandmother’s piano, etc.,) hired an attorney, moved while my husband was out-of-town, found a long-term rental… and then the other shoe dropped. I was diagnosed with Parkinson’s disease within a week of starting to leave my husband of forty years.

Emotional abuse, chronic PTSD are new words to me, and it’s very humbling to hear the profile of a narcissist, and the results from chronic traumatic stress. Humbling, but now not shaming (most of the time.) Now I have to work hard not to be ashamed of having Parkinson’s. Reading the technical and emotional experiences so generously shared by this community has taken me further into understanding and accepting my own experiences then all those degrees, good clinicians and friends. (Did I mention how well I hid this corner of my life from all these audiences?)

If I can learn from you to not be defined by my chronic emotional abuse, perhaps I can deal with my greatest fear of Parkinson’s, the ultimate need to rely on help. So while the secret is out about my emotionally abusive husband and the results for me, I am keeping the Parkinson’s secret.

Thank you.

#MentalHealth #ParkinsonsDisease #PTSD #NarcissisticPersonalityDisorder #ChronicPain

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Hi, my name is Breeze1. I'm here because I am caregiver to my spouse who was diagnosed with Parkinsons 18 months ago

#MightyTogether

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Hi, my name is wiley1987.

#MightyTogether #Fibromyalgia #Grief #Lupus #chronic Fatigue. I'm from small town Iowa! I have five kids. my whole life revolves around my kids. I live each day for them I have two teens one can be a challenge with her behaviors but I still love her of course I'm trying to help her and get her the best help possible and trying to understand more about these many things that the phycologist says she has going on so I can help her even better. I lost my first husband in 2010 due to complications of Parkinson's disease. I met my husband now and has three kids with him. I have two teens and three younger ones.

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Hi, my name is cmagoffin. I'm here because a friend started taking throid medication 2 months ago and also suspects (NO DIAGNOSIS) they have Parkinson's Disease. They are increasingly depressed and having panic attacks.

#MightyTogether

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Food, Just Imagine….

Imagine having the flu 24 hours a day 7 days a week.....

Imagine never feeling hungry or a salivating mouth or appetite......

Imagine you have just eaten a 3 course meal and you feel so full all the time that you have to vomit to realease some pressure.......

Imagine having intolerable pain in your stomach like someone has repetitively punched you in the stomach and it feels bruised.....

Imagine living off a diet of soup, meal replacement drinks and water, because anything solid will make you feel like you have eaten razor blades....

Imagine being a lab rat and the Drs test drugs in you, just in the slight hope it will relieve your intense pain, but it only makes your symptoms worse….

Imagine telling everyone that you are really sick and no one believes you or tells you it's all in your head….

Imagine being told you are depressed or suffering from anxiety, you are accused of having an eating disorder as the weight falls off your body and reveals the bare bones of you, or even the complete opposite and you mysteriously to some gain weight but what they don’t realize is it comes from the food collecting in your stomach for weeks…..

Imagine being told you have an illness that they can't fix or cure and you might feel like this forever..............

#Gastroparesis #ChronicIllness #ChronicPain #InflammatoryBowelDiseaseIBD #IrritableBowelSyndromeIBS #GastroesophagealRefluxDisease #Pain #ChronicFatigue #Depression #Anxiety #MentalHealth #ParkinsonsDisease #Fibromyalgia #Endometriosis #MultipleHealthChallenges

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