About

soulfulsilkee

I was diagnosed in the spring of 2009 with a terminal, untreatable brain disease that has various names:   Pick’s Disease, Fronto-Temporal Dementia (FTD), Fronto-Temporal Lobar Degeneration (FTLD).  Typical survival prognosis is 3-5 years after diagnosis.   It usually takes five years after onset to get a diagnosis.  There are several variants of the syndrome.  The decline is inevitable, but erratic, and unpredictable.  It just depends on which brain neuron dies today.

This is just the last straw on top of my other diagnoses:  Chronic pain syndromes — Reflex Sympathetic Dystrophy (RSD, a.k.a. Complex Regional Pain Syndrome CRPS), spinal nerve pain from both collapsing and bulging discs, fibromyalgia.  Celiac (Sprue) disease.  Abdominal migraine.  Gastroesophageal Reflux Disease (GERD) with hiatal hernia.  Epilepsy.  Asthma.  Meniere’s syndrome.  Deep Venous Thrombosis (DVT).  Osteopenia.  Kidney stones.  The RSD and osteopenia are causing all my teeth to disintegrate.

I enjoy music and have played the piano since I was seven.  I used to play Beethoven’s sonatas.  I like classical and Celtic, and have an eclectic taste.  I love to write, when I’m in the groove.  I’m currently working on a novel.

I had a medical education and worked in management and medical quality-of-care audits for many years.  Professionally, I’m a Registered Health Information Administrator (RHIA).

selchietracker

She’s on her journey back to the sea.  I’ll follow her as best I can, down to the shore and then along the sea roads.  At last I’ll have to give her back her skin.  Then her trail will go cold and I will lose her scent.  She will frolic with her sistern in the waves, and I will sit on the shore and listen for her laughter in the roar of the surf.

5 Responses to “About”

  1. Debi Hunt Says:

    I am conducting a study about the lived experience of young-onset dementia and would be honored to speak with you. It’s time for people with dementia to be heard and participate in the planning of resources that might be helpful to you.

    The study consists of 2 conversational interviews about your life with dementia. This study is anonymous. I am talking with people between the age of 35 and 64.

    If you would like to know more, please email me at dahunt@mail.ucf.edu or call my cell at 352-250-0073.

    Thank you,
    Debi Hunt

  2. Bill Howdle Says:

    My heart is really touched by your story. I applaud the courage you are showing by writing and sharing such a difficult time.
    Ypu are in my heart and prayers.
    Bill

  3. tess Says:

    Hi, i’m sorry you are going through this hell.

    i read a story about a woman who had cancer last year and changed her diet. I know this is an entirely different medical disease but maybe all the same it might help. Her improvement within one month was medically astonishing. Her site is tea4life.co.uk and look at the link on the site called sam’s story.
    In addition Turmeric is supposed to be a wonderful spice that has many health benefits and is being investigated for its beneficial effects on the brain (well in combination with vit d, it is thought to clear amyloid beta-the substance that forms plaque on the brain and causes alzheimers (which again I know is not the same disease).

    Just try. you never know.
    dont think about death, think about life. A racing driver once explained how they never look at the barriers as they drive because if they do they will definately hit them. I think this applies to life due to my own experiences.
    i hope you are ok with my message,
    I’ll pray for you today, tx

  4. Delia/Nicole Says:

    Thank you so much for sharing! I would looove to read your novel.

  5. Debbie (Parky) Says:

    I listened to your essay as Imarad read it today at Writer’s Circle. I have bilateral Meniere’s Disease. Diagnosed in September 2005 after first presenting November 2004. I send you good thoughts and healing energy as you continue this journey of yours.

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