Wednesday, May 17, 2017

Stargardt's triggering emotional stress and other health problems

To be honest, I don't think there's anyway around this.  The emotional depth that one has to go through  with the loss of vision is not something you can omit or bypass as much as we like to.  What we don't realize is the unseen effects resulting from these emotional traumas.

How it started for me?

As I always say, this is my experience, may not be the case with everyone.  I'm writing to help those better understand and be aware of things that may be applicable to them.  

My vision started to deteriorate by the age of 9, I  had lost most of my central vision by the age of 13.  The loss of vision is overwhelming to any child growing up, as if the identity crisis of an average tween isn't bad enough,  Stargardt's is like pouring gas on top of fire.  For the longest time, I dreaded the fact I was alive, but I couldn't bear to hurt myself since it would likely devastate my family. Sometime I'd almost wished something would happen to end all that misery.  It's not a pretty place for a child's state of mind to be in.  And if I had to guess, that is likely triggered some of the other health problems I eventually had.

Health Issues
My guess is the "semi depression" states I went through began to affect my body in invisible ways.  I gained weight, eventually diagnosed (after 15 years) a chronic case of sleeping disorder known as narcolepsy, and hormonal imbalances cause sing other complications.  OK I'm not saying that people with stargardt's will all have these problems, I'm saying that the emotional ramifications of losing your vision may likely trigger other unforeseen health issues.  For myself, the depression like states probably kicked my body into autoimmune like status where slowly my body is killing itself.  

I'm a strong believer in the body mind connection, I believe how your feel and think has tremendous impact on your body's immune system.  And even scientifically we know it has a direct correlation.   

So what am I trying to say?

These emotional episodes may have serious lasting effects on your body.  For me, I'm trying to undo at least a decades worth of emotional baggage that has taken a toll on my body.  The bright side of it is, yes you can do something about it, and no its never too late.  But like everything else about having Stargardts, things are just a bit more harder and complicated than "normal".  If anything, I would say you have to untangle the emotional mess before you can reverse the physical ailments.  

How do you get through the emotional mess?
One day at a time.  I'll write something on this topic another day.  

Wednesday, May 10, 2017

Stargardt's hidden health problems

What you don't hear about with your Stargardts.  

We all know stargardt's is a condition that causes a patient to lose central vision due to the body's inability to clear toxins that build up in the eye and eventually scarring the retina and effecting the vision. But what you likely don't know or heard about is its hidden  effects on the rest of your body.

Physical Effects of stargardt's
Keep in mind what I'm proposing may not necessarily be applicable to EVERYBODY, but I do want to drive some attention to these issues so people can be aware and possibly proactively prevent them before it accumulates.

Not looking straight

Seems like a relatively simple issue from losing central vision.  But there are quite a bit of complications.  See, not looking straight means you are probably compensating to use the peripheral parts of you vision, this probably also means your head is constantly in a tilted  position.  (up, down, or to the sides) to help adjust for the blind spot in the middle.

What I've noticed for myself is a slight tilt downwards and to the right side.  My neck  is tighter on the one side and cracks easily when i try to fix it into "proper alignment".  So why don't I keep it "proper" you may ask?  Well its simple, in the natural position, we are looking straight and directly into the blind spot, and unless you want to be walking or be "blind" most of the time you will adjust and naturally tilt slightly.  It may  seem harmless, but these slight tilts will build blockages in the circulation of your blood and tightness in the muscles.


Be aware and mindful.  A few moments of resetting will go a long way in helping to main and reduce the effects of muscle tightness.  Stretching exercises, meditation, Chinese qigong, or yoga are all great ways to help reset the body  and be mindful of what your physical posture is.  It will also help release the tension build up that can lead to neck shoulder problems and possibly even headaches.  Regular exercise and sports will help too but to a lesser degree because often you are not resetting the condition or you may even be reinforcing it.  Essentially, when you "need" to use your eyes for something, chances are your posture and alignment will be off.


Being a person who works in front of a computer all day, I've experienced serious issue with my neck, shoulder and back due to posture and the "head tilt" issue.  I tried yoga and massage which helps but not been sustainable as in it feels better initially but will go back to the discomforts in 2-3 days max.   A few years ago, I started doing Chinese qigong, it's made me much more aware of my body's alignment, and the circulation of qi.  

What I've realized is my "normal" posture  actually causes a poorer circulation which causes muscle tightness and hte cracking of the neck is restoring part of the circulation but it keep cracking because I keep going into the poorer posture that  prevents it from a good circulation.  Always remember, in our most natural  posture, (upright and loose) our body's blood and qi is able to flow smoothly, our muscles are not tighten or stressed.  But when we are out of that proper natural alignment, (tilted, slanted or imbalance in left or right side) Our muscles tightens up, and circulation is poorer.   A prolonged poor posture then results in certain muscles becoming inflexible and unable to release which will reinforce the poorer posture and circulation and becomes a vicious cycle.  At this point,  trying to do the natural posture will almost feel awkward because your muscles have adapted to the bad posture and  the the balance between your muscles is off.


Like stargardt's, as long as you are still using your eyes, this problem will likely persisted.  Believe me its extremely annoying but it is just another thing we need to learn to live with. Being mindful and trying to reset it will go a long way in preventing it from affecting your quality of life.  No one like shoulder, neck pains or headaches, for some its "manageable" but then the question comes down to do you want to "live and manage the pain" or do you want to not have pain.  The choice is yours.