I was born blind. And doctors weren't able to help me till last year ,I was given the good news that there was a new surgery available. I have 100% vision now. I had to wait 31 years for my new eyes, but it was worth the wait. Good luck,
I have a eye disease that makes my pupil cone shaped and they want me to wear hard contacts but I'm used to glasses and only wore contacts a couple of times.
About 10 years ago, I got lucky and was in a trial for a less intrusive surgery for a brain aneurysm. There isn’t anything that can fix my eyes due to a combo of MS and a bad head injury, but I’m not dead so all is good.
I have HIV and 3 years ago had meningitis. One of the lovely things it did to me was damage my optic nerve making totally blind in my right eye. I see an opthamalogic immunologist. The specialties around eyes are amazing. I'll cross my fingers for you Paul! If anyone deserves to be cured it's you.
@moonloversheila8238 Thank you! I'd actually say when it comes to HIV I've been very lucky. Meningitis is pretty much the most serious and life threatening complication you have from it, but prior to getting sick I went without medication and was never sick for about 25 years. So I had a good run compared to a lot of people. I feel like with many illnesses that your attitude and outlook on life plays a big part in things. This is one thing I love about Paul. He is so positive and bubbly.
He may not want to be “cured”. It’s such a silly, feeble term. That makes it sound like being blind is a disease… he’s thriving how he is right now. & even if he wasn’t… Just something to thing about (coming from a disabled woman who’s heard this a LOT in my life) love/appreciate the intention, doesn’t mean it always exactly feels good or hits right when being told I deserve to be “cured” Just something to thing about, no hate. 🩷
If you do join a trial, even if it doesn't succeed, you're still helping by expanding the body of knowledge that will bring the researchers closer to finding a successful treatment for RP.
Yes, especially since even very effective treatments for progressive diseases nearly never reverse the damage that's been done so far. Usually what happens is a treatment is found that slows the progression, or the holy grail, stops it. Then as soon as a child is diagnosed they can immediately begin the treatment.
In the abstract, sure, but for someone with enough functional vision to make a living with visual art, even if it's just that little blurry pinpoint of vision, that's a big risk to take, so I'm glad that doctor brought that perspective. It shows he's looking out for Paul's ability to keep living his life, which is important angle for your healthcare team to take, and a big benefit of having a consistent person to see.
@@nikipound Exactly. No improvement or some improvement fine, but worsening the condition, nope. Listen to that little voice in your gut, it is right every time.
@@nikipoundit’s every important that a doctor is considering the patient’s quality of life when recommending or talking about trials. Sometimes doctors don’t present the real possibility it could make things worse. You would hope it wouldn’t since there is usually so much testing and things before hand but the reality is we aren’t exactly the same as whatever they use to test before people and somethings cannot be tested by someone who donates their body to science post life. Since it seems from watching Paul and Mathew’s videos and Molly Burkes videos the disease could very likely at some point take all their vision there may come a time where Paul may want to participate to help others in the process. There is also the real possibility that there will never be a cure or something that slows the process down. There are lots of considerations but it’s definitely good to see a doctor who is for them but looks at them critically and considers how it could impact his patients and presents it to the patient as well.
Hey Paul! Eye doctor here! One of the big benefits is having a regular eye care provider you can rely on for information, and care for the rest of your eye. While your main problem is RP, it is still very important to care for the ocular surface to maintain good comfort. Have you seen a low vision specialist? With your window of vision there may be options to help expand your small central field to help you with your art and other daily takes. Remember, optometrist also serve a very important role in eyecare in the US.
@@HazelHammond1505 I'm not a doctor, I'm not offering medical advice in any way. I am sorry to hear that, but that doesn't mean he shouldn't continue, I don't know what it's called, maintenance care? There are other things to stay on top of. Sam's for anyone else reading these comments. Don't discontinue care because there's nothing more to learn about your main problem. Plus, Luke Paul said, science advanced. It always is.
@@faeriefire99 Thank you yes your right they are finally working on RP. He does go to a specialists once a year. and so far they say they can't do anything for him. he has no cones and rods left. I'm excited for Paul. he's young so he has time. My hubby is 76. he feels like they make an appt for once a year just to get his copay. because they say the same thing and for the last 4years (this will be the 4th ) he has went to different Doctors. each Dr. says this Dr. knows more then he does about RP.and we end up telling more then he knew.
@@HazelHammond1505 that's awful! Even if it's not true (which it sounds like it is) him feeling that way isn't ok! That ypy can go through that and still feel hopeful for someone else is amazing! You're a good person. I'm 43 and sadly, I've experienced knowing more than a doctor about a specific situation concerning my health. I've known a few people that happened to. It doesn't bother me so much if a doctor admits "Hey, you've dealt with this for years. I haven't. " what bothers ne is when the doctor is flat out wrong and refuses to even consider they COYLD be wrong. Egos suck. But in the case of your hubby, I was thinking about how they can check for other stuff based off what they see in the eye doctor visits. Mine (I'm do wear glasses, but its not anything other than being nearsighted) caught a busted blood vessels in my right eye. So my regular dic was abke to do some tests and determined my stress levels arw off the charts. But it could have been diabetes 😬 I know there's some other stuff they can catch with routine eye exams. Not saying your hubby has to worry about any of that. Just that's why it's important people keep up those exams. Now that I've written a novella, thank you for sharing your story and for being so kind. Again, it shows that you are a sweet person. I really appreciate that🩵
@@faeriefire99 thank you. In the beginning they could adjust glasses so he could kinda see TV. I had to buy a 65in TV :). He hasn't been able to see at all sense late 2019 early 2020. He has always loved Star Trek. so that's what I put on the TV for him every night.
My son is blind but we have not seen an ophthalmologist in many, many years. Because of other medical issues, the blindness took a back set to the more life threatening conditions. He is now healthy and an adult and this has been a wake up call for me. This week we will look for a specialist for him. Thank you, Paul, Matthew, and Mr. Maple.
As someone who lives with an incurable chronic disease, I just "cannot" deal with anymore conversations about it with my family. They are lovely well meaning people, but the freaking out and wanting me to go to an ER when I just don't feel well which is very normal for me, or dragging me to another doctor, another seminar, another support group...yes, love you all, love that you all care, but part of what has helped me in life is learning to accept my normal. I don't often complain even when things are bad, I do what I need to health wise, but that constant focus on the disease rather than me as a person, doesn't help me mentally. No I'm not comparing to your situation, just my personal experience, but I wish that is something more people in my life would come to terms with. I'm not healthy, never will be for the rest of my life because I'll always be fighting this disease, but that's okay.
I can totally understand that. For me it's the opposite in a way. The denial and refusal to learn more and accept who I am is incredibly frustrating. I'm disabled and this isn't going away and I wish people in my life would accept that. I think it's like a balance., don't be overbearing or uncaring. I guess put the disabled person first is the easiest way to sum it up. We all just want support in the ways that work for us.
For me, hoping for a 'cure' stands in the way of accepting my chronic illness, and trying to live my best life. I have limited hours in the day, and I'd rather spend my energy making the best of what I have.
They live with your disease too. Maybe understand that you could write the exact same comment for them too. And actually watching someone else suffer can be worse. Maybe have a little more empathy for how hard it is for them too.
@@ohana8535 I don't think they lack empathy because they expressed that they care and recognize their care. They are just expressing other feelings regarding it. Also it isn't really a thing of who has it worse. The disabled person has to live with it and is the one who ultimately struggles more but I agree as someone who is disabled and has a disabled sister, It can be hard to witness them struggling.
Am happy you dodged the bullet of not being accepted into a bad trial. Sorry for the people who DID get accepted and had their eyes further hurt. Best of luck with future trials.❤
I was adopted at birth a long time ago. I was born a month early. My adopted parents were told that I could have brain damage, poor hearing, and poor eyesight. They adopted me anyway. A neighbor girl helped me learn to read the summer I was 5 years old . My right eye started having poor vision when I was in the fourth grade so I was given my first pair of glasses. My vision has plateaued and I am nearsighted so I don’t wear glasses when I read or look at tablets. My hearing has gotten worse since I reached 70 but I worked in a Combat Support Hospital and a MASH when I was in the USAR which have very noisy generators to support their power needs and I never wore hearing protection because I was inside most of the time. I hope that you get in a study because if there is an experimental treatment, you can be in line to get it! It is also wonderful that your quality of life is great with Mr. Maple and your supportive life partner! Good luck! I have only been watching your videos for about a month and I really enjoy them. I am totally retired now so I have plenty of time for entertainment! Good luck!😊💚
I love the videos when you talk about what the idea of more testing, trials and ultimately a “cure” means to you Paul. It sounds like a lot of disabled people have a complex relationship with the idea of being cured that I don’t think most able-bodied people have ever had to wrestle with and truly confront. Thank you for shining a light on this topic.
I never understood that, and was actually surprised to hear people say that. I would LOVE to have my chronic illness cured, but I can also accept that I have to live with it at the same time. It makes no sense to do otherwise for me. But everyone is different.
Im partially paralyzed. Ive been this way since I was a toddler. I dont want to be "fixed". I have no frame of reference for having 4 completely working limbs that I remember. My body is my body for better or for worse But some people want cures. More power to them, its someones personal choice.
I'm slowly going blind and it feels like it is changing how my brain works. It's been 7 years, how exactly am I supposed to go back to fully sighted? It's not my normal anymore. I had to learn walking with the cane, using my hands and feet as info gathers, exact organization of my home. It exhausts me to consider to invest as much effort into being sighted as I had to originally cope. I'm stable this way, and a cure is chaos.
Paul, I think you’re lucky to have Matthew lobbying on your behalf obviously wanting the best for you. Also, Mr Maple did a fine job keeping you safe (we don’t know what that old lady’s intentions were 😅)❤️
i have to say: paul is so real and honest, and matthew is so genuine, with his eye wrinkles and just so much calm confidence. it makes me want to cry. love you, guys, may all families be like yours. a hi from a country that will proudly have families like yours one day. thanks for sharing your stories, it's huge.
People in my family start losing eyesight pretty rapidly due to aging in their 40’s and it’s something I fear as an artist and a very visual person in general. Watching Paul make the most out of life, stay positive, and focus on what he still has rather than getting stuck on what he has lost is comforting and helps me accept what I know is coming in my future.
I know it's not easy to switch mediums, but maybe you can take up pottery? Not the same as drawing but a great creative outlet that I think could be continued even through vision loss. I'm wishing you the best in the future no matter what you do ❤
I'm sorry to hear that. My Mum had Macular Degeneration. She was devestated when she was first diagnosed as she loved to read and paint in watercolour. Her vision deteriorated over the years, but she was so positive and stoic. She learnt to accept and adjust to each change so it became her new normal. The National Council for the Blind here in Ireland were wonderful. They gave her so many low vision aids over the years which they updated as her vision deteriorated, all free of charge. I hope you have an organisation like that where you live. I would suggest you do some research to see if there is and contact them, so you know they're there when you need them. It's amazing what advances have been made in low vision aids over the last 20 years.
I'm so sorry. Even if your vision doesn't seriously deteriorate, the not knowing can be overwhelming. My daughter in law, a former artist and professional photographer, lost her vision due to cone dystrophy and had to pivot. Now, posting as Blind and Bored, she makes videos that are both hilarious and informative (I adore her!). Life can be a be-atch, but thank goddess there are better options for the visually impaired now and in the pipeline. Positive thoughts for you❣️
Hey there! I worked for years as an eye care technician. With Opthalmologists and a Retinol Specialist. So many advances are being made in the treatment of retinol diseases it's amazing! Don't give up!! I have a home just a ferry ride from Seattle. What a beautiful place to live. I absolutely love it here. Prayers for you to get the care that you need ❤
Regardless of whether you get accepted into a trial, it’s always good to get your eyes checked. Even though you’re blind, you still want to stay up to date on any treatments and maintain the health they have.
That first shot of Mr Maple by your feet during the exam 😍 He gave a look like, “no pictures please, I’m working.” He really is the star of this channel 🤣 Love y’all!
I have anterior and posterior Uveitis and secondary glaucoma and recently had a bit of a to do about something that my consultant's registrar had written in a letter saying that I had declined to be registered blind when it wasnt even discussed. With the help of the Eye Liaison Officer at my local Eye Hospital my consultant has now signed the registration papers for me and now life will be less of a struggle. Thanks for sharing your consultation with us today.
The story at the end about the old lady and Maple, LOL I also love how Matthew always makes sure that Mr. Maple is in the video! Paul I wish you all the luck in the world! Love you both! 😎
It is good to hear back about those trials. Scary that that one had a bad outcome. I guess things happen for a reason. It is amazing that people partake with the aim to find a cure. I am sad though for those people who are worse off after that trial. :( Thanks for taking us along to the eye doctor and good luck on the next steps to come.
Sometimes when we have health things it's helpful to have someone with us who isn't exhausted and worn down by having dealt with our expectations being on a roller coaster most of our lives. I always appreciate my SO for finding the energy to pursue new solutions when I'm out of energy. Really glad you have Matthew, Paul. You're both such a great team. Hoping for new science options for you!
Thank you Matthew, for helping Paul find another Eye Dr. Like you say "gathering more information" and keeping up to date for new appropriate trials that may be cutting edge or even more advanced in a few more years is indeed smart and keeping on top of any potential advances. We love all three of you, Paul, Matthew and Mr. Maples. ❤ ❤ ❤ and Thank You for your video's and the joy & love you share with us. Have a wonderful weekend.
I go to QEI in Brisbane for wet macular degeneration and narrow angle glaucoma. It is involved with teaching and research. There is a genetic treatment for AMD, but early stages. We have a safety net in Australia and after ~ $850 out of pocket expenses you get ~ 85% of medical costs back.
Hi Paul, Matthew and Mr. Maple. I love listening to your videos to advocate for disabilities of all kinds, not just blindness. This video struck close to home since I have congenital heart disease. I wasn't in a clinical trial, but my most recent fix in Feb 2024 involved a newer technology that only existed for for past 3 years. If this valve didn't exist, I would've had another open heart surgery to fix my issues. I am doing well and recovering. I was told by my doctors that I'm in the first few thousand of people to have this artificial valve placed and succeed. Lots of love, Tina.
I think this is my favorite video of you guys. You just seem so natural and relaxed, like the camera isn't there, because you're more focused on the task at hand.
Well good luck in future trials! I love watching your content because you guys are so sweet and supportive of each other and it show that even with a disability true love can be found ❤
im glad they are of the mind set "being blind is fine, but having a cure sure would be nice" instead of just being "blindness dosnt need a cure we are perfect the way we are" yes they're perfectly fine. but it would be nice to see again.
It'd be a nice option. People that are born blind often don't have a desire to see and feel comfortable in how they are. Those the have experienced vision loss and mourned that loss could really benefit though.
@@PredictableEnigma my family has a long history of glaucoma on one side and cataracts on the other. and the things we can do against that now compared to before is a comforting thing because i know my grandparents are of a generation thats too late and seeing them slowly go blind is kinda painful. so. anyone who can avoid blindness or even have it reverted is huge.
You're such a loving couple I know that's why God put you together you belong together you're each other's support. Thank you Matthew for being such an amazing person and loving Paul. And Paul you are a such a loving heart. I'm so glad I got to see your stories and learn about your lives. God bless take care you have many many friends out here who care so much about you. P.S. Mr Maples too.
That was really informative. I hope you get that study and/or the field exam. I HATE those eyedrops with a passion! Diluted pupils are horrible, but seeing you have full black eyes was so cool. Thank you for bringing us on your journey. A nice Wednesday surprise post. P.S.: I recognise those outfits from the "Pengroom Plushie Shower" prank 😆 🤣
I can see how Matthew fell in love with Paul; I'm having a hard time from doing the same thing. GOD keep you guys safe, health and happy for many decades to come. LUV YA, LUV YA, LUV YA.............
So happy you went with your gut and not do the trial. Dodged a bullet for sure. If it feels wrong then we do need to stop and think about why we feel that way Good job 👍 Everything is working out for your highest good ❤
HI Matthew and Paul! This was very good! Our 22 year old son, who has MULTIPLE medical eye conditions, is legally blind, and one of his eye's is only partially attached, sees an Ophthalmologist every year. It's important! To clarify for others in case they aren't sure...An Optometrist is a person that usually prescribes eyeglasses and contacts and does have educational background in vision abnormalities. An Ophthalmologist TREATS EYE DISORDERS, so they are more specialized. During our last visit, we saw an Opth. She tried to "talk us" into future visits to an Optometrist (I don't think she felt comfortable because "special needs".) I said NO! and I am glad I did because he needed some additional referrals that I later found out could only be prescribed by an Opth! not an Optometrist. Sorry this is long, but I felt the need to explain both types of eye doctors. ALSO, I can understand Paul's hesitation about visiting the eye doctor. Dilation is VERY uncomfortable and getting more scary news is a fearful situation. It's good you were with him! Also when there are 2 people if one person misses some information, usually the other one remembers it for the future. TG you didn't do that clinical trial!!!! Keep up the good work we love you guys!!!!! :) :)
Always trust your guts. It was a good thing that you missed that trial. I am glad. And it sounds like you are in great hands with the new doc. ... And I only can repeat myself you and Matthew are so adorably gorgeous together. Absolute relationship goals. And your sweet furry son is the cherry on top! Luv you 3
Isnt it so nice to meet consultants who care and give you more information than previously told, that it might actually give you hope and a positive boost . Fingers crossed you get on the right trial soon 😊 I've recently received my results from my Gene test and have more tests next month so I'm somewhere at the start of my RP journey
It’s really good to have a specialist that sees you and knows u I have been going to mine since I was 2. It’s also good according to my retinal specialist to make sure I don’t have other issues like for me I have more than one blinding eye diseases
Thank you for educating us on RP. I had never heard of it before, so each time you explain or give an update, it really helps me to understand your condition. I really appreciate you ❤️
I'm so glad you made this video. I have Glaucoma and I am always bugging friends to get their eyes checked. It's not enough to see an Optician---if you see a competent Optometrist, he or she will refer you to an Ophthalmologist if they detect an issue in your eyes. It's so great that you guys are bringing awareness to a lot of people about eye issues and disabilities. Don't feel bad about Maple being recognized---there are so many people who remember my dog's name but not mine. (See profile pic). 😃😎 I hate the dilation, too, Paul.
Excellent episode! Even if they would only discover something to halt the progression of the disease, it would be super awesome. Thank you all. Be well, stay safe all.😊❤
This was a very informative video. I really, really liked it. I'm happy you now have an eye specialist to see on a regular basis and that will get to know you medically. That's very important. And, as Matt stated, having knowledge is important too. I think the path you're taking for your eye health is a good one. I'm proud of you Paul. Most of all you are dearly loved by Matt and Maple. ❤️
You have no idea how much you're helping people paul and mathew .. I'm from australia and have quite a few loved ones with varying degrees of blindess and mental health issues and I want you both to know how much you are helping people, worldwide!!! I not only have vision problems myself but am trying to get a 'mind dog' here in oz for my mental health... not sure if either of you have heard of them... I know It's not the same as a guide dog like your gorgeous Mr maple ... but 2 of my chosen charities is Assitance Dogs Australia and Guide dogs Australia, whom I've beeen a long time 'giver/supporter' to.. even though I'm on on disability support in oz...and don't have much money myself... but I believe in such worthy cause The reason I'm posting this is because you guys are SUCH an inspiration to others,vworldwide. You give hope and help to so many people, like myself, so your videos are far reaching. So thankyou paul, mathew and Mr Maple. you are amazing!!! Ps - im part of the lbgt+ community myself which I think is how I stumbled across you guys in the ifrst place 🥰
We are all guinee pigs in the world of medical science, always be cautionary and do a thorough background on all in charge. Good luck Paul, I only want you to be happy and it seems you are.❤
Yes, if in doubt it's probably best to follow your instincts. Thank goodness you delayed the previous offer and did not participate in the other trial. Thank you for sharing this with the world. 😊 wishing you all the best!
You have such good support from Matthew and Mr. Maple. Thank you for educating those of us who are not in your shoes. Your artwork is beautiful, I am glad you did not do the trial that left others with atrophy. You can educate so many through your books! 🥰
Im hoping you get accepted and it works for you. As i have a parent who also suffers from RP i wish you all the best, And thanks for having a full conversation with me a while back, that was awesome and i remember it to this day.
Thank you for applying for trials. Even If you have no positive or negative changes what the specialists can learn from you may be valuable to future patients ❤
That was definitely a positive experience for you Paul and I hope that the trial goes successfully for you and Matthew being at your side to help you is such an amazing feeling. In the UK we get free eye tests every 2 years regardless of age.
That is not entirely true. Some people can get free eye tests, but for most adults it's only if you have particular medical conditions or receive means tested benefits.
Paul, please keep thinking positively. In this day and age, anything is possible. With Matthew and Mr. Maple by your side, you're in great hands.( and all while wearing Matthew's prescription glasses 😂). Y'all make me smile 😊 Hugs to Mr. Maple 🐾🐾
Matthew is a great, natural interviewer. Paul, may the perfect clinical trial come along for you. Between you and Matthew, you undoubtedly will make the right decision.
I hve this same disease I hve lost my vision in my left eye first I just see bright lights outta that eye now my right eye is going u are such a inspiration to me thank you
Hey Paul! I had an eye injury a couple years ago and have spent countless hours going through many tests as well as surgeries. When you said that family members tend to be super interested in more information, but you tend to be less interested, that really resonated with me as I feel the same way.
Eye health in spite of prognosis is so important. Changes in the eyes can definitely point to problems in other systems of the body. Love the work you do!💙💙💙
Hello Mr Maple Mr Paul and Mr Matthew 👋 so good to see you all ! I wish I had a relationship like you two have ❤. Best Wishes and Sending Positive Thoughts and Prayers for Paul’s vision to return better than ever !! 🙏 🙏 🙏 🙏 🙏 🙏 🙏 ❤❤❤❤❤❤❤
I love how much info I got from this one video! My son was diagnosed with RP when he was 12 and had seen his eye doctor to watch progression yearly since. Thankfully he has been stable and has minimal vision loss (he is 17 now) but we were never told there were different types of RP or that there was genetic testing. We will definitely be asking about that at his next appointment! Thank you Paul and Matthew (and Mr. Maple) for putting yourselves out there and giving this mom some hope for answers. Side note... I have followed you on tiktok for ages but I just adore your longer videos here on youtube. You can show us so much more than those short videos can. I adore all the info and hope I can get, my son is an artist as well (oil paints) so you can completely understand its hard to not look for anything and everything that could possibly help him keep his vision. Lots of love from Wisconsin ❤ I can't wait to see many more videos ❤
You guys said something that really made me think, I have had multiple sclerosis for 29 years, and I like to keep myself up-to-date with the different things are going on out there in the medical treatments and possibilities, but I do agree that my family probably tries to find out more than I do Sometimes, you guys are awesome, I love watching you and seeing what you guys are up to your lives, your dynamic is amazing, good luck with your trials
Love you guys so much. I've got optic nerve damage from a secondary glaucoma and am familiar with these sorts of tests. Thanks so much for sharing this story and all the very best for your eye health Paul!
I am also a visually impaired artist, and I can relate to that feeling of wanting to know if you can somehow improve what you've got but also being worried that you could make it worse. I am functionally blind on the right, and as I get older the vision on my left is getting not so great...I'd love to have a way to improve it! Hope you find a perfect match study and see better some day!
I had my genetic testing at Casey Eye in Oregon. Completely free when you have a diagnosis of RP. It's definitely good to get yourself retested just for either confirmation or if it happens to be different! Love watching your guys videos. Makes me feel less alone!
That was so interesting! Well I think it sounds like the doctor is very good and if you end up down here in LA in my neck of the woods you should totally reach out. I wish you so much love!
Paaaaauuuuullllll please keep us posted! We love you and hope that this works out! Matheeewwwww we love you too and of course our amazing puppy- Mr. Maple ❤ from South Florida
Prayers your eyesight does improve Paul - what makes me feel your going to be OK no matter what the consequences will be is you have Mathew and Maple - Awww relief for you,,,,
I absolutely love the both of you, I love following you guys. What a no is today might be a maybe down the road will be a yes to cure many things including Paul"s blindness. Hang in there and enjoy life to it's fullest. We only get one shot at this.
