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Saying Hi
Author Message
TenTwo Away
Explorer of the unknown

Posts: 2
Joined: Apr 2018
#1
Saying Hi

Good day to you all. I'm a talky sort. Expect detailed posts. Wink

I've been twelve years old for, oh, about five decades now. I refuse to grow up. I'm a gamer and enjoy toys.

I've had severe health issues since the mid eighties and only recently uncovered causes for it. I have six diagnoses, each involving motor issues. In my search for answers I discovered that, not only do I likely have some degree of SPD but have had it my entire life. While it is currently a self-diagnosis, it's kind of nice to uncover a reason for me being me.

I knew I had some proprioceptive disorder but I've never had a name for it. SPD is still new to me. I've been reading and taking the online tests. I seem to answer about 98% positive for SPD. Still, there are issues with me that the tests don't seem to cover. Then, there are likely complications from other health issues. We have to think of health holistically.

Over the decades I've spent six figures on co-pay and bills trying to uncover my disability and yet I had to discover SPD on my own. Indeed, seven wrong diagnoses. Can I get a refund?

Dan's introduction instructions seem concise so I'll conclude with them. Hopefully there will be time to get to know each other later. I'm here for an education, but also hoping to educate. Perhaps my experience can help others that are only observing someone with SPD. One thing I know first hand is how something like this can effect morale and confidence.

1. What brings you here?
I've had a severe motion disorder since 2001. I would freeze in place and be unable to move without rocking and seeing what I was doing. Back then most thought it to be somatoform disorder. Only since 2011 have I had lab results to the contrary. It's been a tough road. Now that I have an idea of what might be wrong I'm eager to educate myself.

2. What is your relations to someone with SPD? Do you have it?
Reading about SPD has left me to believe I've always had it. It is disturbing that someone can live 60 plus years and discover they've been overlooked.

3. Share a little of your journey if you'd like.
Always the problem child, but not really. I was bored and anxious and needed to know things no one was telling me. Finding answers without guidance can really get you int hot water. I became severely ill in 1985. The pain in my body was extreme. Wearing clothes hurt. Getting a hug hurt. Simply moving hurt. It was a different pain from anything I'd experienced. Since then I've been focused on my health, my needs and their causes.

4. Is there any immediate help you need?
Thanks, I'm good.

5. SPD doesn't run your life! What are you or your child's gifts? Interests?
It doesn't run it, but it certainly has influenced it. I think if I'd had some support growing up that I'd be a different person. I was always blamed for me being me. Mostly I've evolved into interests of a solitary nature.

6. What do you like to do in your spare time? Any hobbies or interests?
I'm on permanent disability so I have lots of time. I enjoy classic cars, planes and motorcycles. I used to be an avid bicyclist but health is now limiting that. I'm a writer, an inventor and a product developer. I tend to think in the energy field and am currently tackling the energy crisis. I believe the word 'impossible' really only means 'we just don't see how' so to do the impossible is only a matter of discovery. No matter what, don't let anyone keep you from your dreams.

Thanks
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Gudetama Offline
Seriously, I can't...

Posts: 54
Joined: Jan 2018
#2
RE: Saying Hi

The problem with SPD is that isn't recognized a thing in the DSM, so a lot of people really don't know about it. I was complaining to my ENT about my motion sickness and other issues that I have (like sound sensitivities and not feeling here all the time), and he's the one who said ohh yeah you have this. @.@ I'm not willing though to take a bunch of drugs, so I just know what to avoid and avoid them well. (That and I abuse caffeine a lot which helps...) Once you know your triggers it helps though sometimes new things can trigger you. People see it as you're like this, so you much be on the autism spectrum, but while there is comorbidity, you can have one without the other. Which is I think the reason why it's not it's its own thing on the DSM. I'm not on the autism spectrum, so I can't speak for that side of SPD. I can only say what it's like for me, which is all anyone can really do honestly. So welcome to the site. ^_^
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