1. What brings you here?

I have Sensory Processing Disorder. I am on a listserve for the condition and decided to check out these forums.

2. What is your relations to someone with SPD? Do you have it? a child of yours? Do you treat SPD kids as a professional?

I have Sensory Processing Disorder. I have relatives with much milder cases than my own. I have friends with mild to severe cases of SPD. One of my friends is a Cancer Survivor and the Chemo triggered her SPD. I have personally had SPD all my life, but it became blatantly bad in 2003 when I could no longer walk around without getting stunned by the light.

3. Share a little of your journey if you'd like.

When I was a kid, clothes would itch and burn. I refused to wear pretty much everything that wasn't cotton, leather, or velvet. As an adult, wearing something besides cotton, leather, or velvet will result in rashes or hives.

I have a lot of food allergies that started as a young child. I develop more and more food allergies over time very quickly. I have finally semi-stablized what I can and can't eat, but the level of severity of my food allergies get worse with each exposure.

In 2003, I noticed that the world was too bright. I wore sunglasses (even in doors with little to no light) for a few years and then even they weren't enough to protect me from the light. I would walk down a hallway only to suddenly stop, paralyzed, and staring off into space. Eventually, I would fall down paralyzed until I recovered and then go on my way. Certain spots at work would almost always trigger this problem. In 2006, I got Irlen Lenses and the problem with being stunned by the light no longer happened as long as no one flashed a light (camera, strobe light) through the side of my Irlen Lenses.

I am extremely sensitive to touch and light touches especially will hurt. I trained my friends and husband to give bear hugs when they want to touch me, because my body will react to that mostly positive.

Certain sounds (the note high C and anyone/anything off key) will trigger an instant migraine. I am a First Soprano, so I figured this out after triggering many of my own migraines. Some music types (like country) will make me violent or upset. Other music types (like Heavy Metal and Opera) will soothe me and make me happy.

I use heavy blankets on my bed year round, but I am unable to tolerate weighted blankets because the weight isn't evenly distributed enough. Heavy weight puts me right to sleep.

4. Is there any immediate help you need?

No. Looking to see if I can help others.

5. SPD doesn't run your life! What are you or your child's gifts? Interests?

SPD does run my life. Everything I do I have to keep SPD and my other medical conditions under consideration.

That said, I am a Gamer. I play and compete in all sorts of games. One thing I like about board games, is they aren't often visually disturbing and in a competitive game the chatter isn't meaningless.

6. What do you like to do in your spare time? Any hobbies or interests?

I Game, help people on the internet, hang out with friends, and walk to the bench in a park 1/4 mile from home. Exercise is tough for me, so that walk is a major challenge to get there and back without falling.

(06-07-2010, 02:59 AM)beck7422 Wrote: I have Sensory Processing Disorder. I am on a listserve for the condition and decided to check out these forums.

Hey, I know you .
Welcome to the boards. Glad to see you've found your way over here. Hope you enjoy the site. Oh, and thanks for noticing the 'how to introduce yourself' thread. Think it's helpful to use this template?

Quote:In 2003, I noticed that the world was too bright. I wore sunglasses (even in doors with little to no light) for a few years and then even they weren't enough to protect me from the light. I would walk down a hallway only to suddenly stop, paralyzed, and staring off into space. Eventually, I would fall down paralyzed until I recovered and then go on my way. Certain spots at work would almost always trigger this problem. In 2006, I got Irlen Lenses and the problem with being stunned by the light no longer happened as long as no one flashed a light (camera, strobe light) through the side of my Irlen Lenses.

As I"m pretty sure I've said to you before, this is an extremely severe reaction to light. There is a 'freeze' response that can happen in primal defense mode, so I suppose it's possible that it really is just an SPD reaction. However, just as a precaution, I would check things out to make sure there isn't some other problem that may be causing this. I assume you've had it checked and these aren't seizures or narcolepsy spells brought about by these sensory reactions....

I'm glad it's more manageable since getting the lenses though .

Quote:SPD does run my life. Everything I do I have to keep SPD and my other medical conditions under consideration.

The reason I write down consistently that SPD does not rule our lives, is that I want to remind people that, while they may be considerably restricted and feel out of control because of SPD, they still have a part of themselves that is them, that is neither defined nor totally ruled by the disorder. SPD may seem to dominate your schedule (believe me, been there), but there are still individual interests and things you do that aren't SPD related. I don't want people seeing themselves as a disorder, or the product of a disorder, but as a functional individual person. If you truly feel as though SPD rules your life, then I would recommend more OT, and lots of it.

Quote:I am a Gamer. I play and compete in all sorts of games. One thing I like about board games, is they aren't often visually disturbing and in a competitive game the chatter isn't meaningless.

Cool . As this site populates, I am sure there will be plenty of gamers on board. I can also understand the appeal of the more traditional board game, though I must admit to being more of a video gamer than a board gamer (call me unoriginal on that one, lol). Remember that you're free to discuss anything of interest on this board.

Quote:I Game, help people on the internet, hang out with friends, and walk to the bench in a park 1/4 mile from home. Exercise is tough for me, so that walk is a major challenge to get there and back without falling.

See what I mean? That's not a life ruled by SPD. That's a life, chosen by you, but effected by SPD. Please remember this, you are far more than that label .


Anyhow, welcome again to SPD International. I hope you enjoy your time here as things get started.

The template was useful for me, but then I am an Engineer and I look for Templates before I spout off...

Actually I have seen close to 50 Neurologists all over the United States, over 10 Optomologists, and 1 Neuroptomologist. None of them could find anything wrong with my eyes except being near sighted with a small stigmatism. The were unable to explain why I got stunned by the light and could no longer READ (devasting for me by the way).

I heard that Autistics had problems with light sensitivity, so then I talked with them and found out about Sensory Integration Dysfunction (otherwise known as SPD). I started researching SPD and talking with people who had that and realized that it would explain the last third of my unexplainable problems. I ended up going back to talking with people with Autism about their light sensitivity and they pointed me towards Irlen Lenses.

I went into the Irlen Lens place as a skeptic (even though independant research scientists were able to back up their results) and came out shocked that I was able to read again (with one of the Irlen overlays). Two weeks later I went back because the Overlay helped so much and got the Irlen Lenses. For the first time I was able to walk down a hallway without walking into a wall in more than 8 years. My reading was even more improved with the Irlen Lenses versus the Irlen Overlay. My light stunning went down. Polka dots and Stripes on clothing and bags were no longer enough to shut me down.

As far as the paralysis aspect of my condition goes, that is explained by my having Hypokalemic Periodic Paralysis. Hypokalemic Periodic Paralysis individuals are extremely sensitive to adrenaline rushes. Adrenaline rushes bind with the Potassium in your blood serum. People with Hypokalemic Periodic Paralysis are sensitive to the smallest drop of Potassium from their blood serum even if they are well within normal limits of Potassium levels.

Right now there are a lot of people with Hypokalemic Periodic Paralysis and Anderson Tawil Syndrome that also have major Sensory problems. There is enough of us, that the researchers are calling our group Hypokalemic Periodic Paralysis - Plus. I am regularly working with the Researchers and other Hypokalemic Periodic Paralysis patients to get this possible condition better defined so that one day I can have a firm diagnosis.

Because I have HypoKPP-Plus, Food Allergies (including inhallant triggers), and SPD, they together completely run my life and every activity. I can't really do more than use the computer without supervision, because my tendancy to fall or have a major allergic reaction are very high. My every movement has to take the HypoKPP and SPD under consideration or my chances of falling go way up. It takes a lot of concentration to walk.

My main labels are Feminist Gaming Nerd. My health problems just end up interferring a lot and remind me regularly to not forget them. Sometimes I through in the Disabled label too. Disabled Feminist Gaming Nerd when I am having a day where I really need accommodations from others.

---

The Neuroptomoligist check the Nerves in my eyes and found them all healthy. I had a really hard time with the tests, especially a chess board test where the black and white squares quickly changed places. However, nothing showed as wrong with my eyes on that test, despite it causing me much physical pain.

(06-07-2010, 02:59 AM)beck7422 Wrote: 5. SPD doesn't run your life! What are you or your child's gifts? Interests?

SPD does run my life. Everything I do I have to keep SPD and my other medical conditions under consideration.

People saying that make the hair on my back stand up straight. People are so much more then just a person with X, in your case SPD. you say it yourself.

(06-07-2010, 02:59 AM)beck7422 Wrote: That said, I am a Gamer. I play and compete in all sorts of games. One thing I like about board games, is they aren't often visually disturbing and in a competitive game the chatter isn't meaningless.

I won't deny that SPD can make a lot of stuff hard. And that you have to conciser it in a lot of things you do. But you are still you and a part of that may be that you have SPD but you are more then that. The fact that you found ways to deal with it only increases that. I admit, I take earplugs, sunglasses and my caps with me nearly everywhere and use them extensively but I don't let it be all that I am. That includes that I at times put myself in places where I know it'll be hard for me.

The only time it really does rule your life is if you let it. I really hope for you can make it so that it doesn't. It improves your quality of life by 10 times at least.

I am not only my poor health. However, if I don't make my various health problems a close friend and treat them well all the time, they will turn my life into a nightmare that is borderline unbearable. I don't have a large window for dissing my health problems and ignoring them.

So when I go to places, I have to ask people to make a long list of accommodations just so that they can hang out with me and my health problems...

At least my friends are so awesome and are willing to accommodate me to hang out with me.