A Cure for Paul's Blindness?

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  • เผยแพร่เมื่อ 20 มิ.ย. 2024
  • Join Paul and Matthew on an intimate journey through the challenges of living with retinitis pigmentosa in the heart of Seattle's summer beauty. As Paul gears up for a potential new clinical trial in the relentless pursuit of a cure, witness their candid conversations about the complexities of seeking treatment and the emotional landscape of navigating a world with limited vision. Don't forget to subscribe and share your thoughts in the comments below. #RetinitisPigmentosa #ClinicalTrials #EyeHealth #Seattle
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ความคิดเห็น • 723

  • @quisnessness
    @quisnessness 20 วันที่ผ่านมา +1030

    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.

    • @ohana8535
      @ohana8535 20 วันที่ผ่านมา +35

      Yeah, that is the really, really important part.

    • @junbh2
      @junbh2 20 วันที่ผ่านมา

      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.

    • @nikipound
      @nikipound 20 วันที่ผ่านมา +76

      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.

    • @kikihammond5326
      @kikihammond5326 20 วันที่ผ่านมา +32

      @@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.

    • @kristalpower292
      @kristalpower292 20 วันที่ผ่านมา +14

      ⁠@@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.

  • @deirdrem8052
    @deirdrem8052 27 วันที่ผ่านมา +1259

    Fingers crossed that you get accepted into a trial as a non-placebo participant and it works.

    • @junbh2
      @junbh2 20 วันที่ผ่านมา +61

      And doesn't have bad side effects or make it worse, like the trial they were talking about in the video.

    • @dlinsk401
      @dlinsk401 20 วันที่ผ่านมา +4

      Amen! 🍀❤️🙏🏻❤️🍀

    • @deirdrem8052
      @deirdrem8052 20 วันที่ผ่านมา +17

      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.

    • @ImeldaFagin
      @ImeldaFagin 20 วันที่ผ่านมา +3

      @@junbh2That’s a lot of fingers ro cross

  • @robertplocke
    @robertplocke 20 วันที่ผ่านมา +1138

    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
      @moonloversheila8238 20 วันที่ผ่านมา +82

      Sounds like you do too, Robert. I’m sorry you’ve had such bad luck. ☹️

    • @robertplocke
      @robertplocke 20 วันที่ผ่านมา +85

      @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.

    • @Belllleb
      @Belllleb 20 วันที่ผ่านมา

      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. 🩷

    • @Miaka1805
      @Miaka1805 20 วันที่ผ่านมา +37

      You are a strong person, Robert! I wish you so much health. Take good care of yourself and stay safe.

    • @yazajag
      @yazajag 20 วันที่ผ่านมา +30

      You deserve the same wishing you the best and hope things work out for you and that you are doing well. Also that was a very sweet comment. 💕

  • @flophilp
    @flophilp 19 วันที่ผ่านมา +443

    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
      @HazelHammond1505 14 วันที่ผ่านมา +1

      my hubby had a regular eye care but they couldn't help stop it. they just told him what he all ready knew.

    • @faeriefire99
      @faeriefire99 12 วันที่ผ่านมา +5

      ​@@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.

    • @HazelHammond1505
      @HazelHammond1505 11 วันที่ผ่านมา +5

      @@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.

    • @faeriefire99
      @faeriefire99 11 วันที่ผ่านมา +3

      @@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🩵

    • @HazelHammond1505
      @HazelHammond1505 11 วันที่ผ่านมา +2

      @@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.

  • @srqlisa7881
    @srqlisa7881 20 วันที่ผ่านมา +300

    Applying over and over again has to take an emotional toll on you mentally Paul. I wish you peace either way.

  • @victoriamiller9308
    @victoriamiller9308 19 วันที่ผ่านมา +161

    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.

  • @traceyanderson7489
    @traceyanderson7489 20 วันที่ผ่านมา +195

    Mr Maple was not interested in getting out until he saw the harness. He’s such a good boy.

  • @Banyo__
    @Banyo__ 20 วันที่ผ่านมา +540

    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.

    • @M00N_IVY
      @M00N_IVY 20 วันที่ผ่านมา +57

      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.

    • @curiousfirely
      @curiousfirely 20 วันที่ผ่านมา +40

      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.

    • @ohana8535
      @ohana8535 20 วันที่ผ่านมา +10

      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
      @ohana8535 20 วันที่ผ่านมา +8

      @@curiousfirely Nah, I can multitask. I can hope for a cure and accept my illness. It's really not that hard.

    • @M00N_IVY
      @M00N_IVY 20 วันที่ผ่านมา +25

      @@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.

  • @nancismith7705
    @nancismith7705 20 วันที่ผ่านมา +140

    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!😊💚

    • @AnnikaAwsome
      @AnnikaAwsome 19 วันที่ผ่านมา +9

      This was such a joy to read. Thank you for sharing!

    • @Authorthings
      @Authorthings 13 วันที่ผ่านมา +2

  • @1998emmal
    @1998emmal 20 วันที่ผ่านมา +167

    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.

    • @ohana8535
      @ohana8535 20 วันที่ผ่านมา +7

      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.

    • @childofcascadia
      @childofcascadia 20 วันที่ผ่านมา +15

      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.

    • @rayf6126
      @rayf6126 20 วันที่ผ่านมา +6

      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.

    • @rayf6126
      @rayf6126 20 วันที่ผ่านมา +3

      ​@@ohana8535Is your illness painful? You can be stable if you're born with one hand, or born blind but being in pain always saps away part of you.

    • @ohana8535
      @ohana8535 20 วันที่ผ่านมา +2

      @@rayf6126 It is an autoimmune disorder, so yes.

  • @EvieVermont
    @EvieVermont 20 วันที่ผ่านมา +100

    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.❤

  • @kathleenchild
    @kathleenchild 20 วันที่ผ่านมา +61

    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 😅)❤️

  • @saywhat4561
    @saywhat4561 20 วันที่ผ่านมา +42

    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!

  • @juliav.mcclelland2415
    @juliav.mcclelland2415 20 วันที่ผ่านมา +55

    Aw, that was the perfect opportunity for a Toph-style joke!
    Matthew: The sun is really bright today.
    Paul: Seems fine to me.

    • @Delcattiy
      @Delcattiy 12 วันที่ผ่านมา +1

      I would've loved to have heard that lmao

  • @user-fm7en9vt8q
    @user-fm7en9vt8q 18 วันที่ผ่านมา +16

    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.

    • @umassigkap
      @umassigkap 15 วันที่ผ่านมา +1

      We all should be loved the way Matthew and Paul love each other

  • @karenkay8928
    @karenkay8928 20 วันที่ผ่านมา +21

    I so love watching Mathew comfort Maple. Our fur babies are the best ❤

  • @EyeKahnography
    @EyeKahnography 20 วันที่ผ่านมา +16

    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!

  • @lori5032
    @lori5032 20 วันที่ผ่านมา +32

    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! 😎

  • @denisemeredith2436
    @denisemeredith2436 20 วันที่ผ่านมา +21

    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.

  • @secret3957
    @secret3957 20 วันที่ผ่านมา +23

    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.

  • @lolabloo
    @lolabloo 20 วันที่ผ่านมา +27

    The most precious couple and puppy on the internet ❤❤🥺🥺

  • @annissa485
    @annissa485 20 วันที่ผ่านมา +23

    Can we take a moment to admire Paul’s outfit. I love how the bag and shoes coordinate perfectly with Mr Maple❤❤

  • @anastasijahabarova1533
    @anastasijahabarova1533 17 วันที่ผ่านมา +21

    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.

    • @PredictableEnigma
      @PredictableEnigma 14 วันที่ผ่านมา +5

      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 ❤

    • @hildakenny513
      @hildakenny513 13 วันที่ผ่านมา +2

      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.

    • @janetweymouth-german9056
      @janetweymouth-german9056 13 วันที่ผ่านมา +2

      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❣️

  • @luvanime4life
    @luvanime4life 29 วันที่ผ่านมา +88

    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 😆 🤣

  • @Percy_JacksonLover
    @Percy_JacksonLover 20 วันที่ผ่านมา +38

    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 ❤

  • @leaper2294
    @leaper2294 20 วันที่ผ่านมา +26

    Watching your videos has helped me be more comfortable with my eventual blindness.

    • @sundiverjl
      @sundiverjl 19 วันที่ผ่านมา +2

      🙏

  • @jeanneprieto5219
    @jeanneprieto5219 20 วันที่ผ่านมา +26

    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.

  • @Raven-nx8ex
    @Raven-nx8ex 20 วันที่ผ่านมา +14

    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.

    • @TheMazinoz
      @TheMazinoz 20 วันที่ผ่านมา +1

      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.

  • @geraldgoyette2676
    @geraldgoyette2676 20 วันที่ผ่านมา +32

    This is FANTASTIC news Paul and Matthew and makes me very happy to hear this.

  • @lizard734
    @lizard734 17 วันที่ผ่านมา +7

    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.

  • @pokestar2508
    @pokestar2508 20 วันที่ผ่านมา +23

    I wish you the best on your journeys. You three (yes I included Mr. Maple) are doing an excellent job.

  • @BSWVI
    @BSWVI 20 วันที่ผ่านมา +51

    I love that the doctor allowed you to video!! Reassuring for many I'm sure.
    Thank you for sharing with us. 😍

  • @joysuewilson7734
    @joysuewilson7734 20 วันที่ผ่านมา +10

    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.

  • @harvestmoon_autumnsky
    @harvestmoon_autumnsky 20 วันที่ผ่านมา +10

    To know or not to know. A real and serious question. Paul you're very kind to do this to give Matthew some peace of mind.

  • @GeoffreyFox-px7wn
    @GeoffreyFox-px7wn 20 วันที่ผ่านมา +8

    I am praying for you. You deserve a beautiful positive solution as you both offer so many good things to the world

  • @megandmauiguidingpaws
    @megandmauiguidingpaws 20 วันที่ผ่านมา +18

    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

  • @trevorb.miller6385
    @trevorb.miller6385 19 วันที่ผ่านมา +5

    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.

  • @debsbiz67
    @debsbiz67 20 วันที่ผ่านมา +5

    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 ❤️

  • @Jenavieve
    @Jenavieve 20 วันที่ผ่านมา +10

    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

  • @Ford_prefect_42
    @Ford_prefect_42 20 วันที่ผ่านมา +14

    I hope your participation helps others have a better life. You're doing great things and we all hope the best for you

  • @olga138
    @olga138 20 วันที่ผ่านมา +13

    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.

  • @maryettadynan4981
    @maryettadynan4981 20 วันที่ผ่านมา +5

    I smile the whole way through your videos! You two make my heart and soul calm. You’re the best…..you too, Mr Maple! ❤❤

  • @scorpion_336
    @scorpion_336 20 วันที่ผ่านมา +6

    I hope good things come from this for you Paul. Your art is amazing and I would love to see you have a long career making art and books!
    Good luck!

  • @lisajahn6839
    @lisajahn6839 20 วันที่ผ่านมา +5

    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.😊❤

  • @Chloe299XxX
    @Chloe299XxX 20 วันที่ผ่านมา +8

    Love how informative these videos are. Thank you Matthew for asking the questions

  • @michellewinkler3985
    @michellewinkler3985 19 วันที่ผ่านมา +6

    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!!!!! :) :)

  • @ludag7798
    @ludag7798 20 วันที่ผ่านมา +7

    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 ❤

  • @Brutally-Honest
    @Brutally-Honest 20 วันที่ผ่านมา +30

    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.............

  • @teghanbrewer1767
    @teghanbrewer1767 20 วันที่ผ่านมา +8

    I really hope you get accepted into the trial!!
    Fingers crossed!

  • @ebonyskin1
    @ebonyskin1 29 วันที่ผ่านมา +11

    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. ❤️

  • @ebonyskin1
    @ebonyskin1 29 วันที่ผ่านมา +15

    Thanks!

  • @user-vc5ro8yh1q
    @user-vc5ro8yh1q 20 วันที่ผ่านมา +16

    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.❤

  • @deborahdufel1664
    @deborahdufel1664 10 วันที่ผ่านมา +1

    Love that you're sharing all this information for others. I'm looking forward to joining your journey. So glad you found this new doctor.

  • @williamstringer6519
    @williamstringer6519 3 วันที่ผ่านมา +1

    What comes across to me is that the love between these two guys is palpable. They are clearly good for one another and II wish them both well.

  • @Miaka1805
    @Miaka1805 20 วันที่ผ่านมา +16

    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

  • @waffles3629
    @waffles3629 19 วันที่ผ่านมา +5

    Matthew sliding a sleepy Maple into frame 🥰

  • @nicksiii
    @nicksiii 13 วันที่ผ่านมา +1

    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 🥰

  • @Kristen-kp6dh
    @Kristen-kp6dh 20 วันที่ผ่านมา +6

    Thank you for sharing this with us. I love being educated by you both.

  • @7mariepierre
    @7mariepierre 20 วันที่ผ่านมา +5

    I love you two so much! I wished I had met someone in life with whom I could have had the type of relationship you two share. 💖💖💖

  • @MissesWitch
    @MissesWitch 20 วันที่ผ่านมา +8

    Even if there's some improvement, It translates to huge improvement in life!
    I really hope Paul finds something that works for him

  • @leaftiger12
    @leaftiger12 20 วันที่ผ่านมา +6

    I really hope the trail is helpful for you Paul! You absolutely deserve it! ❤

  • @mabodeely
    @mabodeely 18 วันที่ผ่านมา +2

    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! 🥰

  • @Sunshinesinthesky
    @Sunshinesinthesky 20 วันที่ผ่านมา +3

    Thank you for sharing your journey. You both have such a warm energy. Going for check ups and tests can be stressful, but you made it look so fun. ❤

  • @mixedmediaartgirl300
    @mixedmediaartgirl300 20 วันที่ผ่านมา +12

    Praying for you Paul ❤

  • @laurenstolkin881
    @laurenstolkin881 19 วันที่ผ่านมา +3

    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!

  • @berthagreen1620
    @berthagreen1620 20 วันที่ผ่านมา +4

    It’s great to see you taking care of yourself. Mr. Maple is pretty awesome.

  • @mikkelborby
    @mikkelborby 19 วันที่ผ่านมา +12

    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.

    • @PredictableEnigma
      @PredictableEnigma 14 วันที่ผ่านมา

      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.

    • @mikkelborby
      @mikkelborby 9 วันที่ผ่านมา

      @@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.

  • @servisquartz6676
    @servisquartz6676 20 วันที่ผ่านมา +7

    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.

    • @TessaAvonlea
      @TessaAvonlea 18 วันที่ผ่านมา

      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.

  • @denisetarabori553
    @denisetarabori553 20 วันที่ผ่านมา +3

    I’m happy you have an opthalmologist there now. And I wish you the very very best in this particular journey. 💙💙

  • @pennysyogaexperience6959
    @pennysyogaexperience6959 20 วันที่ผ่านมา +6

    I have RP, diagnosed at age 13
    as I get older I realize there are other eye conditions that can be caught early and treated to help us keep our remaining vision. My sister was in a trial she feels it made here vision more difficult. I have RHO gene. Good luck ❤

  • @Kimberly-kz2qs
    @Kimberly-kz2qs 20 วันที่ผ่านมา +3

    I love you guys and Mr Maple. I also love Mr Maples thoughts. I know they are always spot on what he's thinking!!❤️🐶

  • @CraftyNeedleworks
    @CraftyNeedleworks 16 วันที่ผ่านมา +1

    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!

  • @greengonzonz
    @greengonzonz 18 วันที่ผ่านมา +1

    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 ❤

  • @angelatester2471
    @angelatester2471 17 วันที่ผ่านมา +1

    just popping in to say thankyou. You both are so cheerful with lovely smiles and Maple is gorgeous. All the best with everything from the UK.

  • @pammansfield4929
    @pammansfield4929 16 วันที่ผ่านมา +1

    You are one of the sweetest couples I know. Praying for your eye sight to improve Paul!

  • @marianruiz48
    @marianruiz48 20 วันที่ผ่านมา +1

    You guys are amazing!!! Your videos are always the ones to watch when I'm feeling down!!!

  • @melissamarble8239
    @melissamarble8239 18 วันที่ผ่านมา +3

    Good luck Paul. I hope your new eye doctor can help you out. Make sure if you have doubts, don’t do it.

  • @zzzz759
    @zzzz759 20 วันที่ผ่านมา +4

    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

  • @messinacox4915
    @messinacox4915 16 วันที่ผ่านมา +1

    You two are adorable! Maple, too. I hope and pray you find a trail to fit your needs! God Bless Y'all!

  • @darianroscoe1017
    @darianroscoe1017 20 วันที่ผ่านมา +9

    So glad you have a regular doctor now. I wanted to ask about your friend who got ousted from a restaurant with their dog in training. Anything new on that?

  • @iagrams9100
    @iagrams9100 20 วันที่ผ่านมา +1

    Best of everything to you! Your attitude and laughter give hope to others

  • @Judymontel
    @Judymontel 20 วันที่ผ่านมา +1

    I'm really glad you have your own opthalmologist now. It's important to have your own go-to person, someone you get along with, build a relationship with, someone who can recommend things to you and recommend you to others as well. Good for you!

  • @halhenryg
    @halhenryg 20 วันที่ผ่านมา +3

    Paul, sending all of my positive Karma and energy, stay strong!❤❤❤‍🩹

  • @celestecolton1638
    @celestecolton1638 6 วันที่ผ่านมา

    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

  • @TNBredRose
    @TNBredRose 19 วันที่ผ่านมา +1

    So glad u went to the eye doctor. Prayers my friend. ❤

  • @Andrew-qv3ug
    @Andrew-qv3ug 18 วันที่ผ่านมา +1

    You two are probably the cutest heartwarming couple I've seen on socials. When Im feeling down I scroll to ur vids to smile a bit 😊
    do u guys ever have a fight lmao 😭 I couldn't imagine you two fighting! It'd be interesting if you made a video talking about how you manage and go through discussions (also if being an interabled couple is ever the reason) since you're so calm and peaceful together! Share your secrets!! 😂

  • @b.wildart
    @b.wildart 19 วันที่ผ่านมา +1

    Thank you for taking us along. 💜😊✌️

  • @ghentsy1
    @ghentsy1 18 วันที่ผ่านมา +2

    I'm surprised that they didn't give you eye protective shades against the UV sun after your eyes dilation.
    But this is very informative . Best of luck Paul.

  • @claireroces3736
    @claireroces3736 15 วันที่ผ่านมา

    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!💙💙💙

  • @HorseLady1109
    @HorseLady1109 20 วันที่ผ่านมา +2

    Knowledge for the sake of just knowing sometimes makes things worse emotionally. Be careful what you wish for. God bless you both.

  • @arelisrodriguez4965
    @arelisrodriguez4965 20 วันที่ผ่านมา

    I love this channel. You guys are so much fun and good for the eyes! Thanks for letting us into your nice life

  • @clairebpbutler2789
    @clairebpbutler2789 19 วันที่ผ่านมา +1

    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!

  • @Bildgesmythe
    @Bildgesmythe 19 วันที่ผ่านมา +1

    Best to both of you in your life journey. You two are awesome people.

  • @mbrow
    @mbrow 15 วันที่ผ่านมา

    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.

  • @MadonnaShatzer
    @MadonnaShatzer 29 วันที่ผ่านมา +11

    Prayers. Universe positive vibes

  • @xanden1
    @xanden1 19 วันที่ผ่านมา +2

    The production and editing of this video is wonderful!

  • @DrMayhamz
    @DrMayhamz 14 วันที่ผ่านมา

    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.

  • @lauriemapplebeck1286
    @lauriemapplebeck1286 19 วันที่ผ่านมา +1

    I am praying for you Paul and I will continue! Love you ALL🙏🏼🎚️⭐️🇺🇸🇨🇦🇨🇦

  • @rebeccadavila653
    @rebeccadavila653 20 วันที่ผ่านมา +2

    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!

  • @rushfan1970
    @rushfan1970 16 วันที่ผ่านมา +1

    You two are such a beautiful couple & sweet Mr. Maple just makes you a lovely family, you always make me smile!!💖👏🏼🤟🏼✌🏼