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I’m Paul this I’m Matthew behind us can you see him can you guys see Mr Maple Mr M so bright the sun is very bright I feel like it’s putting him into a little dark shadowy cave area back there but Mr Maple’s back there okay everybody this is something a little different today we are headed somewhere aren’t we where we are going to my uh my eye specialist so I’m blind and I have an untreatable eye disease but every so often I need to have my eyes looked at the reason I’m doing it is because I might be participating in yet another clinical trial in the ever NeverEnding quest to find a cure for blindness so you called them up you hounded them actually no you called them up you hounded them I think you even pretended to be me did you say that it was Paul tell me the truth Matthew I don’t remember you did I fed the f God it’s so beautiful here we live in Seattle it’s uh it’s usually not this beautiful but this is the start of like the summer season and this is when it gets really nice so how do you feel going to a new eye doctor oh yeah that’s what we’re talking about well actually really good because I don’t I haven’t had one like a regular eye doctor since moving to Seattle yeah I’ve been part of four other clinical trials that I was rejected from Y and because I did those at every couple of years they you get extensive checkups each time so I never felt the need to get an Opthomologist of my own because I kept getting these really great extensive examinations at no cost to me like free and all these like very elaborate tests were done and I was like great but you know I figured like I don’t want to rely solely on that it’s going to be nice to have a regular eye doctor yeah someone who gets to know you and who can uh probably recommend whatever it is you need so I guess I should say I have retinitis Pigmentosa I was diagnosed when I was 16 years old I started losing my vision before then however I wasn’t aware that it was due to the disease and my family wasn’t either I wore eyeglasses since the age of five thought that corrected my vision but retinitis Pigmentosa affects other parts of the eye not just Acuity but the peripheral the low light vision Etc things that you don’t normally check for so it took my family a while to figure it out RP is inherited however I’m um a less common case where Miles take the exit uh I’m a less common case we found out not as uncommon as we thought but I I created the genetic mutation like myself it’s just it started with me so it wasn’t actually passed on to me by anybody that’s interesting that’s interesting okay yeah what are your thoughts I mean I’m excited um I love the idea of you having a regular eye doctor that you’re going to see and getting whatever what are the benefits tests are needed what do you think the benefits are because like there’s no cure there’s no treatment yeah I don’t know I guess it’s just knowledge yeah I guess it’s just knowledge of like what’s happening you know it’s funny I actually it’s better not to know what was that oh battery I sometimes wonder if the family members of disabled people are more eager for knowledge than the disabled people themselves that could be you could be I’m fine I don’t need a doctor I don’t need to know well it’s like we live with it tell me we live with it 100% of the time tell me that I don’t know right exactly and also it’s sort of discouraging sometimes and then it puts so much attention on the thing that yeah I don’t want to know it’s more loss right that’s a little scary so this I could have told you that doctor and I didn’t go to school but I mean there’s definitely comfort in knowledge as well I just feel like it’s it’s there’s a fine line and I definitely think that you are yeah perhaps a little more um motivated than I am isn’t that interesting well here we are okay let’s go in let’s go Maple you ready to go you ready to baby Meo come good boy [Music] getting close oh they’re very dilated they feel funny they feel like two ball bearings in my eyes because they’ve been themb so we’ve done all the test pre-testing before seeing the doctor himself so now we’re just waiting for the doctor to show up yeah and look at all of the scans and whatnot I realized sitting up there I hate waiting rooms I get all anxious oh really no how’s nle doing he’s good he’s just staring at you where is he he’s over right by me right to my side side um my right side yeah hi ni hi PE okay I need sunglasses oh those poor dilated eyes I can’t open my eyes it’s way too bright I mean you can wear mine but these are prescription it’s okay my eyes aren too dilated it’s too blurry to know anyway you look great all right you look rad thank you okay how was that you know felt good it felt good to do it was there was some like pretty Illuminating information for me like just his perspective on some of those trials you know it was interesting to learn that one of the trials that I was rejected from ended up uh not working and some of the patients that were treated are now experiencing atrophy in their retinas which is so crazy because just before the pandemic I was I was offered a slot in the trial and I was a little unsure about it and I took too long to decide and they filled the spot and now to find out that that could have actually further damaged my eyes it’s just wild yeah I’m like wow I dodged a bullet yeah that must make you feel good obviously well it doesn’t it doesn’t because I was like I was fully trusting them and I was going to do this and I’m like oh my gosh it makes me really really hesit now about future trials potentially I mean it was just interesting to see his perspective like he’s he’s all for trials he’s supportive of Trials but he’s also like you know with ER on the side of caution like if you still have functional Vision like I do if I’m still making a living as an artist consider the fact that doing a trial could result in losing your vision completely yeah do you really want to do that no obviously not so that’s that was that just it doesn’t mean I’m I’m not going to participate in a trial that would have me but especially because he said the injection trials are pretty low risk so but then again that trial with the atrophy that was an injection trial yeah he talked about something that you can take orally yes but it wasn’t available for xlrp he didn’t think it would work for my condition but some other forms of retinitis pigmentos so yeah wouldn’t that be amazing you know for those you know because people out there watching this some of people probably have RP you may not even know what kind of retinitis Pigmentosa you have so first and foremost get your genetic testing done cuz you could be on a list in a couple years to just take a pill that would correct your vision isn’t that wild and isn’t genetic testing free it’s free if you have a diagnosis of retinitis Pigmentosa the genetic testing is free I guess we’re we left there knowing that I’m going to do another genetic test to see so I was tested gen I got my genetic testing done in 2017 uh quite a while ago now 7 years there’s been further advances and in science um they can test for more variables now so actually if you’ve had your genetic testing once and it’s been several years you may want to do it again to see if they could fill in any gaps when I got my test results I wasn’t told with 100% certainty that I have xlrp because my mom didn’t have it my brother didn’t have it uh so the fact that the they said yeah we’re pretty sure like this is almost like this is like 90 you know like they’re like 99% but they don’t know for sure so uh getting it done again to just stay up to date smart smart especially because it’s free if there was an update and things changed it would more information might illuminate things in a different way it could I could have a different form of R speaking too we have I don’t even know it could be like oh wait no you actually have this one okay uh I don’t know I don’t know or they could say with total certainty that it is what it is and they’re like oh yeah we we now know for sure that would just be good information to have especially if I’m getting into trials and then the other thing we’re going to do is head down to Oregon to do more of the field exams some of the the more intensive exams if if if the next trial doesn’t uh happen instead right cuz that would be going down to La yeah okay sir well good job you’re next you did you have you established new care you can finally have a new eye doctor and your eyes feel like little marble b ball bearings yeah well thanks for taking me thanks for being so supportive I was it was really nice to have you and maple there and maple was so good he just except for when he tried to walk me between those two people talking oh it was this okay so it’s this really old lady she was okay feeble and then her like like adult son is trying to walk her to the lobby she’s hanging on to him and Mabel Maple Mabel Mabel Maple wa was the old lady named Mabel Maple tried to knock Little Miss Mabel over by separating her from her son who was the only reason she could stand up no he could have easily gone around easily he was like they’re in the way sorry old lady hope you’re hope you’re recovered our apologies from Maple to you oh no oh and we got recognized at the in the waiting room no we that’s right they she even said I have no idea what your names are guys but she walked I know that this is Mr Maple Maple Maple Maple he’s out he’s like I’m not even going to lift my head for you yeah well he will for a little kble oh here you go baby okay don’t forget to like comment subscribe Tap The Bell the and we’ll see you next time bye byebye [Music] …