A Cure for Paul's Blindness?

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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[chantenell]

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,

[robertplocke]

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.

[deirdrem]

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

[quisnessness]

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.

[flophilp]

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.

[Banyo__]

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.

[victoriamiller]

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.

[srqlisa]

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

[traceyanderson]

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

[williamstringer]

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.

[emmal]

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.

[ablueskybluercloudsmyhutandyou]

i dont know how to explain this but i am genuinely sitting here in my bed in the night feeling so warm and held tight straight up because of that video segment in the car. The two of you just talking to each other, setting graciously the best example of health in a relationship and the unwavering support for one another heals something in me.
Lots of Love Matthew and Paul

[nancismith]

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!😊💚

[EvieVermont]

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.❤

[anastasijahabarova]

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.

[КотМурлыка-ьо]

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.

[jeanneprieto]

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.

[kathleenchild]

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 😅)❤️

[EyeKahnography]

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!

[lori]

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! 😎