Parkinson's Disease

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I'm new here!

Hi, my name is Emily Hornsby. I am the mindfulness curriculum coordinator for the University of Alabama School of HEalth Professions in Birmingham, Alabama and the programs it offers such as the National Center for HEalth, PHysical Activity and Disability (NCHPAD) and MENTOR (mindfulness, exercise, and nutrition to optimize resilience). I teach mindfulness and mindfulness meditation to those with a mobility disabilty such as MS, TBI, Parkinson's, cerebral palsy, stroke, etc. I have fibromyalgia and sjogren's syndrome. I am interested in learning how mindfulness and meditation have helped those individuals with an illness or injury.

#MightyTogether #Fibromyalgia

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Journeyingwith P

Our journey with Parkinson's began 14 years ago. We had no information on P, and as my husband says you spend an inordinate amount of time on the internet, The caveat he says is without that we would know nothing about P.

I have developed close ties with many on the journey, and e\ndeavour to provide updated, current, and relevant informayion on P.

I am a Canadian Ambassador for the Davis Pninnet Foundation

We are the only boice for Parkonson's in Nova Scotia.

We are in the process of tolding our first support group meeting.

The camradarie we share with oyhers on the journey is a gift

The many challenges we all face on our journey allows us to reflect on what P means ro each an every one of us.

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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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I'm new here!

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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