#eyecondition

When I was 17, I was diagnosed with a rare genetic eye condition called, “Retinitis Pigmentosa.” It’s a degenerative eye condition that leads to severe visual impairment and blindness. The condition is caused by a random gene mutation, and occurs in 1 in 4,000 people.

If you’re interested in learning more about RP, visit:

http://www.cnib.ca/en/your-eyes/eye-conditions/retinal-pigmentosa/Pages/default.aspx

I found out about my condition by accident. Some people may view this as a positive or a negative thing. At this point in my life, I wish I had found out later on…

One day I decided that I should go for an eye exam. I already had prescription glasses, but they were getting too small for my face as I’d gotten them when I was only 10. I hadn't been for an eye exam since, so I thought it might be time to check things out and see if my prescription had changed.

After the eye doctor did the standard eye test, he handed me my new prescription. Before I left the chair, he asked me whether I’d noticed any other changes to my vision since my last eye test. I told him that I’ve always had trouble seeing in dim lighting or outside when it’s dark, but other than that, there was really nothing else I could think of. He put several drops in my eye and told me he was going to do one more quick exam and then I was free to leave. He proceeded to put three drops of yellow liquid into each eye and grabbed his microscope and light to have a look at my retinas.

After pulling away, he told me that there were some black pigmented veins on the inside of my eye, and that I should go see a retina specialist in Ottawa to make sure there was nothing more serious going on with me. He told me he would send it through email to the Eye Institute and that they would call me back with an appointment time.

On the day of my appointment, I was told to bring dark sunglasses and have someone drive me. When I arrived at the department inside the Ottawa Hospital, I noticed that I was the only person in the room under 35, and most of them were over 50. People went in and out of rooms wiping their eyes, being called here, there and everywhere. It was a little overwhelming. Overall, my whole exam was 4-5 hours. We were told that the hospital would call us when my results were examined by a specialist and an appointment time was available. About 6 weeks went by before they called. I went for an appointment 2 weeks later.

At my next appointment, I met my specialist for the first time. He explained to us how the test results showed abnormalities and that I had an eye condition called, “Retinitis Pigmentosa.” I was absolutely devastated when he explained the effects this would have on my vision. I was in denial for a while. I just couldn’t believe that this was happening to me. I had no idea that people even went blind from anything other than a severe injury. And, I thought the majority of cases were people who were born blind.

I knew that this would not happen anytime soon, but it was now a possibility. I did a LOT of research in the weeks following my diagnosis. I tried my hardest to find positive information, success stories, treatment, a CURE! Nothing.

So far there is only one treatment for RP and it’s for people with a specific type. There is no cure, but research is booming right now. There are lots of clinical trials at the moment and things are looking really good for the RP community.

A lot of people ask me what I experience as someone who has RP. On a day to day basis, I experience floaters (loose vitreous), photo-phobia (extreme sensitivity to light), eye strain (lots of headaches and fatigue), flashing lights (when transitioning from light to dark situations), night-blindness (poor overall vision in dim lighting), photopsia (ophthalmologic hallucinations), and early ring scatoma (melting or pulsating areas in my vision). I would consider myself to be visually impaired, but I am still able to do most of the activities I enjoy.

Since getting diagnosed, I’ve come to terms with it a lot. I’m not as depressed, I have a much more positive outlook on life, and I’m finding ways to cope when I do have a bad day. I worry about things that anybody else would worry about if they were in my situation, but really, I try to keeo my mind off of it by keeping busy. Facebook is a great place to connect with other people who have RP; there are lots of groups where you can have conversations from people all over the world who are going through the same thing you are. Just the other I found a girl in Australia who had the same gene mutation as I do. Our type of RP affects only 1% of all RP cases. There are lots of resources for visually impaired people such as the CNIB and the Ottawa Eye Institute. It’s really helped me out having outlets for my frustration.

I hope you liked this post. I’d love to do more posts on RP, so if you’re interested, leave a comment. If you have any questions about RP, please PM me.

Love you babes.

I have been trying to hide this part of myself for 7 years now. I did a pretty good job of that, as I think 3 people even know that I have been dealing with it. I just think it’s time to let people know what is going on with me. I know that a lot of people look at where I am in life and think I am just wasting my life away, or mooching off of my parents and skating through life. Well, I have actually spent most days, in the times that I have been unemployed, trying to find a cure for a disorder. I came down with this disorder after stopping Benadryl, in the winter of 2010, but it got worse when I tried to take it again. I have no insurance and my doctor didn’t know what was wrong. So I have had to spend quite a bit of time trying to find an accurate diagnosis, to work towards a cure for this problem. I firmly believe that what I have is “chronic blepharospasm.” There is currently no known medical cure, there are treatments, which are supposed to provide minor relief, and are not cheap, but there is no permanent cure.

I have tried so many different supplements and herbs. I worked at adjusting, increasing or depleting every neurotransmitter that I could think of, which might have any relation to this disorder. I worked on fluctuating GABA, serotonin, dopamine, glutamate, histamine, and acetylcholine.

99% of all medical research has gone into blocking the action of acetycholine, which is thought to trigger the constant blinking, and/or eye shutting, experienced with chronic blepharospasm, through a dysfunction in the basal ganglia. Through my own research and experiments, however, I have found the opposite to be quite helpful.

In the middle of December of 2016, seen in the left video, below, I was unable to drive, watch tv, read, play video games or do just about anything. Medical websites all state, “this condition will only get worse and there is no known cure,” so I believed that my condition was just regressing, as others with this condition experience. I was beginning to think that I would never be able to work or leave the house again.

I decided to try to read a lot of articles online about exercise and how acetylcholine is affected by it. Three months later, I arrived at the hypothesis that the obsessive exercising that I was doing (for a year) caused a major depletion of acetylcholine, by flooding my brain with an increase of other neurotransmitters, combined with the fact that I had recently changed my diet and, suddenly, I was hardly consuming any choline (the primary precursor of acetylcholine). Enter a high choline diet and my cessation of an exercise routine. I started this high choline diet 5 weeks ago. In addition to my diet of no sugar, no caffeine, and no white flour or dairy foods. The results of this dietary change are displayed in the video, below, on the right, taken this morning. I also must note that I am no longer taking any supplements or vitamins. I would say that I am pretty darn close to a cure!!

Not only have I, potentially cured my disorder, but I have realized that the medical community at large, seemingly disregards this extremely vital neurotransmitter!! It is alarming to me! Acetylcholine can be depleted by so many mainstream, popular prescription and otc drugs! Ten years ago, my doctor had me on an antidepressant, Xanax, Benadryl for cat allergies and ibuprofen for back pain! All of these have anticholinergic properties! I believe pharmaceutical companies should spend more time determining the effects, long and short term, of prescribing multiple anticholinergics, simultaneously. Sadly, for a lot of people, these medications are taken without stopping their use of recreational drugs (like marijuana) and/or consumption of alcohol, which are also commonly known to possess anticholinergic properties.

I have chronic blepharospasm from a compounded anticholinergic effect, but I firmly believe that Alzheimer’s could be a result of unknowingly taking too many anticholinergics, long term. In addition to pharmaceuticals, the most easily affordable and consumable source of choline (primary precursor to acetylcholine) is the EGG yolk of a chicken, which doctors also keep our elderly away from, due to their supposed detrimental effect on cholesterol. (Women are supposed to get 425mg of dietary choline, and men are supposed to get 550mg, daily.)

I am not looking for sympathy or pity. I just know how people must think that I am very lazy or have no ambition. This couldn’t be further from the truth. I was determined to find a cure for this disorder and I believe that I may have, actually, finally, done it; and if I can help, even one person, not develop Alzheimer’s disease, that is an added bonus!

Scott!

You're Scott Summers, right?