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Hi, my name is JJinPA!

JJinPA Community member Posts: 34 Courageous
Really just Jay or JJ.  JJ is easier to type.  :)

I've been looking for a forum for disabilities for a long time.  They're out there.  I don't always care for the format.  I like forums like VBillitin, or MyBB.  They have a logical layout that is easy for me to follow.  Those forums are getting scarce.  We will see here.

I have a motor function disorder.  I have very little fine motor control.  I used to love to sketch.  Now a stickman is hard to accomplish.  I do okay on the computer so my creativeness isn't completely wiped out, but it isn't sketching.

Aside from that I have trouble walking.  Give me a flat straight sidewalk and you wouldn't know I was struggling.  Chane the grad or distract me and I can fumble badly.  I used to think it was proprioception disorder brought on by competing microbe infections, but as I study and reflect I have never been quite right.

Still, I never considered myself as handicapped before I lost the ability to walk altogether.  I'm mostly back now… 20 years later.  But I continue to struggle with motion.

It's hard to face the lack of empathy that comes about when I falter.  No one sees the handicap.

For 25 years I was undiagnosed.  Most doctors settled on somatoform disorder.  "There is nothing wrong with you.  It's in your head."  In 2010 I cot my first diagnosis.  Then another, and another.  In total 5 lab confirmed illnesses and two clinical diagnoses.

Each of these lists motion disorder as a potential symptom.  I still don't know exactly what is causing it, one or a combination.  It doesn't really matter now.  None are correctable.  It is just a matter of coping now.

I'm pretty active, not like in my youth, but I do okay.  One thing that troubles me is I am always exhausted and I wonder if I work too hard or not hard enough.  I want to get my strength back.  I don't see that happening without pushing myself.

There is a lot more going on with me than can be put into even this not so brief post.  Maybe after relationships grow I'll feel like sharing what I consider a fairly unusual life.

I look forward to getting know you all and maybe, just maybe we can help each other cope a little bit better.



  • JJinPA
    JJinPA Community member Posts: 34 Courageous
    Sorry for the typos.  My typing is getting worse.  I tend to leap before I edit.  If there is a way to go back in and correct a post after submitting please let me know.  It's a real need with me.
  • Albus_Scope
    Albus_Scope Posts: 5,149 Scope online community team
    Heya @JJinPA and welcome to the community.

    Please don't worry about any typos, we're not marking anyone on their spelling. The ability to edit posts comes as you climb the ranks,  but if you want me to go through and edit for you for now, I'd be happy to. :)
    Thank you for sharing your tale and I'm sorry to hear things are slowly getting tougher for you, I know it can't be easy for you, but coming from a stranger, I'd say to get your strength back, you often need to rest a bit and not push too hard. 
     Have you spoken to your GP about the tiredness? They may be able to suggest something? I struggle with any kind of gradient too, I'm very happy when the pavement is totally flat.
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • JJinPA
    JJinPA Community member Posts: 34 Courageous
    Thanks for the reply.  I suppose it will take a while to grow accustomed to this format.  I'll click around some and see if I get the hang of it.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
    Hopefully, you will be able to get the hang of it @JJInPA. I tend to use the categories on the home page to navigate. Please shout if there's anything we can do to support you in getting the hang of it  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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