My days are too long......I am 38 and life is tough

by Mike J
(Richmond, VA)

I don't know where to begin.....My left and right do not agree with each other sensory wise. It’s like the data from touch(pressure), sight (balance, orientation, depth), and sound are not processed evening from both sides. When I close one eye, my body leans one way and when I close the other, my posture shifts in a different way. Both open at the same time equals postural discomfort and conflicting depth perceptions and overall sensory overload.




Touch is a big issue. If I wear a watch or ring or just simply putting on my cloths, I will start to tighten on the side that has the most pressure. I hate putting on my socks in the morning. This can take up to 30 minutes just to find a matching pair, pressure wise....Sound.... Well when my eyes are fighting each other, my ear sensitivity to sounds intensifies. I hate water dripping, electronic static, conversations I cannot hear clearly, and all loud sounds especially really low and really high frequencies. These are painful. Plus when the pain develops my body will lean to the most affected side and my vision is affected. The struggle between my eyes is made much worse if a loud sounds occurs. The poor fusion between the two eyes pretty much falls apart and I cannot see clearly.

Also a fun game I play is the lean game with my car stereo. I can change the balance from left to right on the stereo and I can feel head to toe pressure change from left to right reinforcing the postural discrepancy that I experience between my eyes. It rather amusing but painful if left unchecked. I have found no cure.....No doctor that can give me any advice.....I have tried to address the symptoms separately but always resulting is money spent and no benefit to my quality of life. The only thing that works is to change how I live.

I have accomplished a lot but it’s not a life I wish to live.....It sucks.....The worst part of it all is looking at yourself and not knowing who you are. I mean, I really do not know what I really like since my life is dictated by this disorder…..Who am I……this sucks…….Over the years I have learned a lot and have upgraded the pain to only discomfort. I have to allow myself to be completely open to whatever modification my body needs no matter how embracing and I can find a trick to completing the task. Unfortunately, that is very taxing emotionally. I can never relax or just be. I must always fit myself to the environment.



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Mar 13, 2012
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starstarstarstarstar 		Life if tough for me too
by: Nancy

Wow! I have been researching SPD for quite a while and this is the first that I have read of anyone having quite the same issue that I have with an imbalance of left and right. I am very curious to know, Mike; if you are unexpectedly touched, say, on your left arm, do you feel the sensation of being touched in the same spot on your right arm? If so, how do you overcome the sensation? I would sincerely appreciate your input since your issues sound so similar to mine.
Aug 08, 2011
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starstarstarstarstar 		Reponse
by: Mike J

I have been to physical therapists, psychologists, neurologists, audiologists, eye surgeons, and what not over the last 18 years. Over the last 8 years I spent a ton of effort on trying to fix this or at least obtain some help. I have taken a ton of time away from working and opened myself up to all options made available to me through my doctors. It turned out that I got some help but most of my control or improvement had to come from learning what accommodations I need to make for the task at hand. Physical activity has been a key element. It?s been almost 4 years now since I have started working out every week.

Since the pressure of holding a weight in my palm with my hand closed was too much for me, I participated in all the aerobic classes (step, combat, boot camp, cycling). I use to be very active. Actually exhausting my body was the only time I felt right. I would ride my bike to work and back then continue riding it to 9 PM. Then I would collapse and do it again. Working in the yard was the same. I would dig an entire 10 zone sprinkler system by hand. One foot deep trenches all over the place and it felt great. But I had not life and I was always exhausted. Over the years I had to quit certain activities because I my body was rejecting the pressure build up or the overdoing was destroying my body. Then I decided 4 years ago to learn how to work out in a sustainable fashion. It took three years to condition my body to accept the feel of a weight bar in my palm. Now I am doing quite well.

I currently spent 5 hours at the gym and 3 hours at a dance studio every week. I still do step and combat with the new addition of weight lifting but I have also been dancing as well. This I started three years ago and I am not looking back. There is something about the music and movement where I find my freedom. I have gotten to be quite good in tap and now I am adding hip hop and jazz. I also stretch for a hobby. I use to do karate as a kid and had great flexibility. Now I am trying to get this back 25 year later. It?s been two years now since I started this stretching thing and I am able to do the front splits quite well and ok on the side. My kicks are high, practically vertical. Now all this is only possible if I sleep just right so my body does not tighten into a knot. I must eat, watch tv, work, drive, etc just right so I don?t slip into a downward pressure spiral. But the improvement in the gym workout and dance are my cake. It has given all my efforts purpose but life is still rough.
Aug 07, 2011
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starstarstarstarstar 		Try a good OT
by: paulette etcheberry

Hi
If I could have a wand I would relieve you from your pain. All I can advice is to find a competent Occupational Therapist and give it a try. Since I didn't read you went to one that's the only thing that comes to my mind.Try some martial arts as a way of therapy I read that it really helps. Best of luck
Paulette

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