Paul is a very positive person but we both feel it's important to share real moments like this. Going blind isn't all about pranks and hilarious storirea (althogh we do plenty of both!) it is also sad andheartbreaking at times. BIG HUGS to anyone having a tough day. We will get though this together
Just stumbled upon you guys very recently. I’m so glad I found you both. My partner is also going blind from a (rare) genetic eye disease. We’re a fairly young couple like you guys. I am the sole driver! My partner refuses to use his guide stick. I hope he will be open to a guide dog in the future. We’ve had a lot of struggles with his blindness, but he has such an optimistic and positive outlook. Thanks for being online and sharing your lives with us. It’s reaching the right audience. 💗 Thank you. It’s nice seeing that we’re not the only ones.
Paul does seem like a very positive person through everything you two share, but just because he's a positive person doesn't mean he doesn't hurt and doesn't go through hard times. We only get a glimpse of what he goes through in these shorts and it can be easy to say that he shouldn't be upset because he has a good life. But he should be upset. He has every right to be upset. He's done nothing wrong and feels alienated. I have a sometimes invisible disability and it gets so frustrating. I'm not disabled enough for the disabled people and I'm not able bodied enough for "normal" people. Sometimes you just feel like you don't fit in anywhere and it's disheartening. I'll keep rooting for Paul though. I hope a study accepts him as well. I understand it's easier for them to study less severe cases. Especially with developing treatment. But more progressed cases should be just as important to look at, because we need to know where the disease ends up eventually.
Hi, as a lgbtq blind person with RP, I totally understand. I have only about 7% of vision left and it’s so frustrating to know that this is what happens with our community. I started following y’all because you gave me hope of being able to be in a relationship. Every time I see your videos I smile, even at this one because you love each other so much.
That's horrible. She would be the perfect candidate given the frequency. Some doctors and medical researchers ought to have their licenses and degrees revoked. I hope and pray for her pain to cease ✌️💖
@@audreydoyle5268Unfortunately no she wouldn't have been a good candidate for that specific study. If they took someone who didn't fit the study's paramaters it would kill the study for all participants and make the results unusable which would deprive everyone who could benefit from the study outcomes which includes people who may not have qualified for the study itself. That's why Matt says what he says at the end of the call in this video. It hurts to not qualify for a study or trial you had hopes for, but that doesn't mean anything against the study or those running it.
@@ajo8075wouldn't you want to make the treatment for MORE severe cases (aka the people that actually need it the MOST) rather than less severe cases? The only reason I can see for that is they don't want to do an ACTUAL study on the real issue, and want to falsely improve their success rate by ignoring the more severe cases.
Have you talked to your doctor about nurtec? My partner has debilitating chronic migraines and they gave jim nurtec to try. And he has barely any migraine now and gets relief after 2 hours of taking the meds.
Paul explained it so well. ❤ the irony of being rejected by a study on a cure for blindness for being too blind just broke my heart. Thank you for sharing this moment and your beautiful bond. Thank you for the sweet note pinned under the video, too. You're extending your warmth and kindness to all who need it. I needed to hear a kind word today. Thank you so much.
It makes you feel like you’re too broken to be worth fixing and it hurts so much. I was told the same thing when I tried to join a study on bipolar depression. Was told they were looking for mild cases, I asked “so cases you feel will make your success rate better?”
If it gives a better success rate, then it is more likely to be available as a liscenced medication. If they include the "tricky cases" straight away, and fail to get approval because of that, nobody benefits
@@theninja4137 but if the point is to find medicine that works for all types of cases, then we need more studies that take on severe cases as well. I mean obviously it's good if medicine gets approved and it ends up working well for severe cases, but at the same time, if people don't specifically study the difficult cases as well as the more mild ones, we won't have as good of an understanding of what makes those cases severe in the first place, which means we won't have as good of an idea of how to develop better treatments and help everyone who needs it.
This is honestly how it feels when you have severe clinical depression. Pretty much all treatment is geared towards those with short-term, mild to moderate depression, and it's like... I'm too broken to be considered for fixing. I'm so sorry, Paul. Edit: Normally it would be a great thing to have over 5k likes but I'm really sorry so many people can relate to what I said. I know this is a positive channel so I've considered deleting this comment way too many times already, but seeing people interacting in the comments has made me think maybe I should leave it up.
I have severe MPD too. Have you been rejected from studies or are you talking about treatment in general? I never thought that the main treatments (meds, therapy-> the advice they give in therapy, CBT therapy) were geared for mild to medium depression? Although years of it hasn’t helped me much, so maybe that is the case🥲 I didn’t think treatment hasn’t helped much because it’s not geared for my severity, I thought it didn’t work because I suck & am too broken
Same goes with general anxiety disoder. I get weekly migraines from my anxiety and was referred to a trial that was studying just that. I was apparently too anxious to qualify
I’m so sorry, my mother developed aggressive breast cancer. Even though there were still empty spots in the pilot trial treatment, they denied her because she’d had a tooth fixed a year before.
@@BubblesDahmerthere maybe a whole world of reasons that they could possibly left out, but i can give u an example: if a patient have medication that contains ingredients that make their blood congeal differently and didn’t tell their dentist, pulling a tooth out could possibly lead to death by blood loss. Crazy, but straight from a dentist’s mouth.
An example that isn’t exactly comparable, but can probably give you an idea of how things can affect other things in unexpected ways (to an non-professional) like how eating a pill could make pulling tooth deadly.
@silverdoe9477. My sympathy. I need to have surgery soon on my knee (torn meniscus) and the first surgeon I saw adamantly refused to do it until I got ALL my teeth pulled (I don't have many left thanks to my violent ex Some are broken but at least 7 are completely fine SMH 🤦🏼♀️) and I quit smoking cigarettes. The second (and current he will be doing the surgery) one (first also accused me of being on meth 😭🤬) didn't even mention those factors. There's lots of reasons why they exclude \include. I'm really sorry they did that though.
With some disabilities, like sight and hearing, it's so easy to be both to disabled and not disabled enough. It's painful. Thank you for sharing your ups and your downs.
@@Chaotic_Pixie Chronic pain can go screw itself. So many people think, how bad can it be, I've had a headache. As if that is in anyway comparable. My wife deals with chronic pain as well and I just try my best to be supportive without being overbearing. I do hate to see her in pain. Because it's an invisible thing people think it's not real or not as bad as to cause issues. I wish you all the spoons in your daily life.
@@mrsNmrs-iam thank you. And same to your wife. The sick and twisted part of chronic pain is when you get used to a certain level of pain & then have a reprieve & you question how you ever functioned… and then the reprieve doesn’t last & it’s brutal. That, and when others look at you barely functioning in life & think that’s good enough. Everyone deserves a chance to thrive, not just barely survive… but so many docs have this mentality that if they can’t fix it, they can’t help. Lessening the severity… providing relief in some capacities… it’s so worth it.
That hug had so much heart in it. Idk how to explain it. I'm so glad that Paul has someone like you by his side to support him through times like these.
Maybe he will get lucky with some breakthrough technology after studies have already been done on it... better than just being in a study.... may he find the blessings hidden within his “impairment” everyday. I’m sure many of his senses are much more high tended and functioning than the rest of the world. One of those being compassion
Awwww hunny, that hurts so bad. Im glad i dont personally understand but i empathize with you. Im so glad your still going and i hope that one day we will find some way to help, even just preserve what you have of your sight would be a big step. Im just some random person on the internet but imma say your allowed to feel bad and you dont have to bw brave everyday. We're all proud of you
This is super important. Testing on people like Paul could help those who are further into degeneration or who are at the same level. It's sad funding and support isn't there for all those affected. Thank you both so much for showing this hard moment. ❤❤❤
When you said you feel excluded from something that makes you excluded it really broke my heart 😢 hugs to you both, you are such a bright light even in the thought times! ❤
My dad has X-LRP and was also rejected for his eyesight being too poor. It’s a bit comforting to see people on RUclips going through the same things he is. Thanks for sharing!
I have Cerebral Palsy. With PT or no PT, I've been excluded from everything. It's sucks, but I hope you can no longer be rejected. I hope they can see that you are as good as everyone else, and not judged.
I'm so sorry you have to go through this, I understand the feeling of being excluded. I lost hearing in one of ears in elementary school because of the school being neglectful (I was sent outside without a coat when it was near freezing outside), I felt like an outcast because I had to wear a hearing aid, no one else had to wear one. But I do truly hope that someday you will find someone who can help you and not exclude you because your "too blind"
That sucks. It's like being put into a more isolated sub category in a category that already sucks. Sending you big love, Paul. There will be a treatment out there for you, don't lose faith and hope
you are so kind to want to help others despite being so far along in the situation yourself. and the fact that your book is to help and support others too. you are a truly kind person and you have made many people feel validated in their identity just from what i see in the comments. both of you are lovely people and i look forward to supporting your journey and the other ways you find to support and help people like you.
I know I'm one of the many thousands who have come on here to support you Paul. Thank you for making this part of how you are trying to help so visible. I reckon a lot of ppl wouldn't know much about clinical trials and or RP. I am so hoping there is some sort of breakthrough in near years that can give vision back. I'm partially blind in my right eye and my situation is nowhere near like what yours is, I only have an inkling of what it could be like and gain understanding through yours and Matthew's posts.
Paul you have me crying. The RUclips algorithm somehow got me to you. You two are the pinnacle of love on the internet. I hope Matthew reads you as many loving comments as he can.
That’s actually really sad. I can’t even imagine what it would be like being blind, especially as an artist. It’s wonderful that Paul has Matthew as someone to support him and make sure he isn’t alone.
My mom has RP. I was always told it’s so rare and shouldn’t worry about it. In the last few years I’ve had every single dr tell me to make sure I get my eyes checked to make sure nothing “happens”. I’ve been watching your videos for a while and didn’t know you had the same eye disease. I was rejected for a migraine study due to having too many migraines (no where near the same thing but the rejection for being “too” whatever… makes you feel singled out or different from others suffering the same way as you). My heart goes out to you ❤❤
I’m so sorry this happened to you. I had the same experience and was rejected from a study because I didn’t pass the test they gave. I found out years later that I truly was a candidate for that study. All the emotions you are feeling are so real. 😢
I really wanted to send you both a hug, I am registered blind and I just want to tell you I think you are amazing and I think you are both great and Mr Maple too 💕 You are so inspirational and a wonderful person for raising awareness of sight loss
Thank you for being a voice for so many. I'm so sorry that you are experiencing such depth of hardship. Sometimes when I have a tough vision day I hear Kermit singing "It's not eady being green". It helps me to laugh because that how U feel about loss of vision. Nobody truly knows what it's like to be green unless you're green. No one truly knows how lonely it is to lose your vision or hearing unless it happens to them. Having a simple hug and a supportive friend, family member is such a blessing. What a compassionate hubby to lean on. Thx for sharing the tough times to. Hugs
Paul is inspirational. I really hope that something comes along that can ultimately help him and everyone in his situation. Thank you for sharing this with us all.
We all need hugs like that one at the end, if you are struggling right now, whether it’s money, medical or mental health issues, you are loved, you are worthy of a good life, and you will create a beautiful life for yourself, you are strong even when you feel like you aren’t, you got this, hang in there bbies💖💖💖
I actually started crying😭. Be who you are. You are amazing, with an amazing personality, husband and Mr Maple is there for you too. I do send lots of hugs to you all💛🐶
You two,together,are so strong!! Thank you for sharing your lives with us. I wish having a superb positive attitude was a factor for these decisions. You would be in the studies every time.
Paul you need to know with certainty that we all here (582000 subscribers) don’t exclude you but see you as some one close, very appreciated and loved like a family member. Our support to you both Paul & Matthew❤️🙏
As someone who’s disabled, I never feel “autistic enough” because I was taught early on how to act. So sorry. We need to to stop excluding from our own communities.
This exact thing has created so many meltdowns for me. Sometimes even just because everyone has convinced me that I can honestly “work through anything” before it all inevitably comes crashing down.
I'm not autistic enough either. My mom did a lot for me. She taught me how to act around people. I was born when autism wasn't autism. It was Childhood Schizophrenia. Doctors wanted my mom and dad to put me in an insane asylum forever. My parents said absolutely not. My parents didn't want to think I had "childhood schizophrenia" so they worked hard with me on how to act
I had a pile of horrible setbacks and felt so utterly bereft but time passed and new opportunities came from that led to wonderful things! Sometimes what feels like a loss only happens bc something better for us is waiting and it would have prevented what was meant to be. I will be praying for your strength, that right thing finds you and happens soon!❤
For years, I worked with a retinal genetics researcher and can say this whole-heartedly-we want to help and we don’t want to exclude you. That said, the pharmaceutical companies that oversee the studies often don’t have ophthalmologists or any other vision specialists writing up these rules, and end up excluding a great deal of patients. My team had to back out of a study a couple years ago because they wanted patients 12 and up who were able to count fingers, when virtually all people with this specific gene mutation lose light perception by 12 (unsurprisingly, we could not find a single person who qualified, and we saw dozens of patients with the mutation). It’s so frustrating and I’m so sorry, but don’t give up ❤
I know you're not working in the field anymore but it does make me think, where are the research and trials where the opthamologists are involved? I would imagine this is where the most grounded studies would be - says someone with medical researchers in her family and opthamological issues since age 11.
@@clairebpbutler2789usually university hospitals are the way to go-especially ones with their own ophthalmic hospitals/wings. Bascom Palmer, Wilmer, Mass Eye & Ear, Wills Eye, Duke, etc. We had patients fly in from around the country (and even other continents) for care, so it may mean asking your ophthalmologist to keep an ear out for any trials involving your specific gene and flying out to see if you’re eligible for the trial (the requirements are notoriously strict with who they allow in as patients). If accepted, you have to fly out every few months to every year for follow up, so it requires a big commitment (many people are more than willing to do this, but sometimes life gets in the way). Hope this helps!
Thank you for sharing the tough stuff too. It’s really hard when you feel othered in a community of the “other”. It happens a lot in the disabled community and you are not alone, not that it makes hearing bad news any easier. Love you guys and sending love and hugs ❤
My heart goes out to him and you. You two are brave and inspirational! I wish for a cure, but I'll keep hoping for the best for him. Sending so much love!! ❤❤
Appreciate the hidden camera authentic moments like this. I can tell you're able to surreptitiously set it up without Paul noticing and we can see what it's really like dealing with something like this.
I have Systemic Lupus, been rejected from SLE studies for being too old, too sick, not sick enough, etc. You handle this well. Thanks for sharing this, Paul.
Id be furious. The way he is so graceful and carried optimism for the treatment for others although he was rejected is so strong. Hes such a beautiful soul. You are two people that are amazing together and make me happy every day. ❤
Paul is a very positive person but we both feel it's important to share real moments like this. Going blind isn't all about pranks and hilarious storirea (althogh we do plenty of both!) it is also sad andheartbreaking at times. BIG HUGS to anyone having a tough day. We will get though this together
Just stumbled upon you guys very recently. I’m so glad I found you both. My partner is also going blind from a (rare) genetic eye disease. We’re a fairly young couple like you guys. I am the sole driver! My partner refuses to use his guide stick. I hope he will be open to a guide dog in the future. We’ve had a lot of struggles with his blindness, but he has such an optimistic and positive outlook. Thanks for being online and sharing your lives with us. It’s reaching the right audience. 💗 Thank you. It’s nice seeing that we’re not the only ones.
Paul does seem like a very positive person through everything you two share, but just because he's a positive person doesn't mean he doesn't hurt and doesn't go through hard times.
We only get a glimpse of what he goes through in these shorts and it can be easy to say that he shouldn't be upset because he has a good life.
But he should be upset. He has every right to be upset. He's done nothing wrong and feels alienated.
I have a sometimes invisible disability and it gets so frustrating. I'm not disabled enough for the disabled people and I'm not able bodied enough for "normal" people.
Sometimes you just feel like you don't fit in anywhere and it's disheartening.
I'll keep rooting for Paul though. I hope a study accepts him as well.
I understand it's easier for them to study less severe cases. Especially with developing treatment. But more progressed cases should be just as important to look at, because we need to know where the disease ends up eventually.
I'm so glad Paul is so in touch with his emotions & you're so supportive. True love is a blessing just to witness ❤
❤❤❤❤ don’t give up. You got this . Hi from Australia 🇦🇺
Hi, as a lgbtq blind person with RP, I totally understand. I have only about 7% of vision left and it’s so frustrating to know that this is what happens with our community. I started following y’all because you gave me hope of being able to be in a relationship. Every time I see your videos I smile, even at this one because you love each other so much.
We feel your pain. My daughter got rejected from a cronic migraine study for having too many migraines per week.
That's horrible. She would be the perfect candidate given the frequency. Some doctors and medical researchers ought to have their licenses and degrees revoked.
I hope and pray for her pain to cease ✌️💖
@@audreydoyle5268Unfortunately no she wouldn't have been a good candidate for that specific study. If they took someone who didn't fit the study's paramaters it would kill the study for all participants and make the results unusable which would deprive everyone who could benefit from the study outcomes which includes people who may not have qualified for the study itself.
That's why Matt says what he says at the end of the call in this video. It hurts to not qualify for a study or trial you had hopes for, but that doesn't mean anything against the study or those running it.
@@ajo8075wouldn't you want to make the treatment for MORE severe cases (aka the people that actually need it the MOST) rather than less severe cases? The only reason I can see for that is they don't want to do an ACTUAL study on the real issue, and want to falsely improve their success rate by ignoring the more severe cases.
Have you talked to your doctor about nurtec? My partner has debilitating chronic migraines and they gave jim nurtec to try. And he has barely any migraine now and gets relief after 2 hours of taking the meds.
@@ajo8075🙄
Paul explained it so well. ❤ the irony of being rejected by a study on a cure for blindness for being too blind just broke my heart. Thank you for sharing this moment and your beautiful bond. Thank you for the sweet note pinned under the video, too. You're extending your warmth and kindness to all who need it. I needed to hear a kind word today. Thank you so much.
It makes you feel like you’re too broken to be worth fixing and it hurts so much. I was told the same thing when I tried to join a study on bipolar depression. Was told they were looking for mild cases, I asked “so cases you feel will make your success rate better?”
What success rates? /genq
If it gives a better success rate, then it is more likely to be available as a liscenced medication.
If they include the "tricky cases" straight away, and fail to get approval because of that, nobody benefits
@@theninja4137 but if the point is to find medicine that works for all types of cases, then we need more studies that take on severe cases as well. I mean obviously it's good if medicine gets approved and it ends up working well for severe cases, but at the same time, if people don't specifically study the difficult cases as well as the more mild ones, we won't have as good of an understanding of what makes those cases severe in the first place, which means we won't have as good of an idea of how to develop better treatments and help everyone who needs it.
Happened to me but not with studies but an outpatient program
@that_pan_chick8650 You are more than likely 100% right 👍🏼 They always either want only the mild cases or only the really really bad ones 🤷🏼♀️
Paul seems like such a sweetheart that it made me teary to hear and see the disappointment coming from him at the call 😢
I got teary eyed at the end too.
I did, too.
This is honestly how it feels when you have severe clinical depression. Pretty much all treatment is geared towards those with short-term, mild to moderate depression, and it's like... I'm too broken to be considered for fixing. I'm so sorry, Paul.
Edit: Normally it would be a great thing to have over 5k likes but I'm really sorry so many people can relate to what I said. I know this is a positive channel so I've considered deleting this comment way too many times already, but seeing people interacting in the comments has made me think maybe I should leave it up.
I have severe MPD too. Have you been rejected from studies or are you talking about treatment in general? I never thought that the main treatments (meds, therapy-> the advice they give in therapy, CBT therapy) were geared for mild to medium depression? Although years of it hasn’t helped me much, so maybe that is the case🥲 I didn’t think treatment hasn’t helped much because it’s not geared for my severity, I thought it didn’t work because I suck & am too broken
Same goes with general anxiety disoder. I get weekly migraines from my anxiety and was referred to a trial that was studying just that. I was apparently too anxious to qualify
Same here! Wow! How sad that we are too “broken” and no one is willing to help 😢
Have a look into CBASP Treatment! It was invited chronical depression
Hard agree and it’s so frustrating
I’m so sorry, my mother developed aggressive breast cancer. Even though there were still empty spots in the pilot trial treatment, they denied her because she’d had a tooth fixed a year before.
I'm so sorry I'm praying for y'all
Why?? /genq
@@BubblesDahmerthere maybe a whole world of reasons that they could possibly left out, but i can give u an example: if a patient have medication that contains ingredients that make their blood congeal differently and didn’t tell their dentist, pulling a tooth out could possibly lead to death by blood loss.
Crazy, but straight from a dentist’s mouth.
An example that isn’t exactly comparable, but can probably give you an idea of how things can affect other things in unexpected ways (to an non-professional) like how eating a pill could make pulling tooth deadly.
@silverdoe9477. My sympathy. I need to have surgery soon on my knee (torn meniscus) and the first surgeon I saw adamantly refused to do it until I got ALL my teeth pulled (I don't have many left thanks to my violent ex Some are broken but at least 7 are completely fine SMH 🤦🏼♀️) and I quit smoking cigarettes. The second (and current he will be doing the surgery) one (first also accused me of being on meth 😭🤬) didn't even mention those factors. There's lots of reasons why they exclude \include. I'm really sorry they did that though.
With some disabilities, like sight and hearing, it's so easy to be both to disabled and not disabled enough. It's painful. Thank you for sharing your ups and your downs.
Truth. Chronic pain too.
@@Chaotic_Pixie Chronic pain can go screw itself. So many people think, how bad can it be, I've had a headache. As if that is in anyway comparable. My wife deals with chronic pain as well and I just try my best to be supportive without being overbearing. I do hate to see her in pain. Because it's an invisible thing people think it's not real or not as bad as to cause issues. I wish you all the spoons in your daily life.
@@mrsNmrs-iam thank you. And same to your wife. The sick and twisted part of chronic pain is when you get used to a certain level of pain & then have a reprieve & you question how you ever functioned… and then the reprieve doesn’t last & it’s brutal. That, and when others look at you barely functioning in life & think that’s good enough. Everyone deserves a chance to thrive, not just barely survive… but so many docs have this mentality that if they can’t fix it, they can’t help. Lessening the severity… providing relief in some capacities… it’s so worth it.
Matthew is so loving and understands what Paul feels badly.Bless your hearts!❤
Matthew is so caring. We all need a Matthew in our lives.❤
Well If you only learned to choose better
@@johnwt7333 Such a weird and creepy thing to say to a stranger on the internet on a video about blindness. Do better.
yeah so caring, set up a camera before comforting him lmao
"being excluded, based on the thing that made me excluded for so long" powerful words ❤ sending live to Paul!
That hug had so much heart in it. Idk how to explain it. I'm so glad that Paul has someone like you by his side to support him through times like these.
Maybe he will get lucky with some breakthrough technology after studies have already been done on it... better than just being in a study.... may he find the blessings hidden within his “impairment” everyday. I’m sure many of his senses are much more high tended and functioning than the rest of the world. One of those being compassion
I'm so sorry Paul. Your content is making a real positive impact. We appreciate you and Matthew.
Awwww hunny, that hurts so bad. Im glad i dont personally understand but i empathize with you. Im so glad your still going and i hope that one day we will find some way to help, even just preserve what you have of your sight would be a big step.
Im just some random person on the internet but imma say your allowed to feel bad and you dont have to bw brave everyday. We're all proud of you
Thank you so much!!
Well said. I agree 100%
@@MatthewandPaulOfficial sending much love and support.
@@MatthewandPaulOfficialthis made me so sad but thank you Matthew for *ALWAYS* taking care of paul.❤
Definitely
This is super important. Testing on people like Paul could help those who are further into degeneration or who are at the same level. It's sad funding and support isn't there for all those affected. Thank you both so much for showing this hard moment. ❤❤❤
Let me add my hug to Matthew's. I feel for you, and the way you handled this, with such dignity, compassion and poise just breaks my heart.
Yes I just teared up at that part and wanted to add into the hug also. He did handle it so well!
When you said you feel excluded from something that makes you excluded it really broke my heart 😢 hugs to you both, you are such a bright light even in the thought times! ❤
Paul, you are SO gracious but the hurt is clear and totally understandable. Well done Matthew for being such a great person x
My dad has X-LRP and was also rejected for his eyesight being too poor. It’s a bit comforting to see people on RUclips going through the same things he is. Thanks for sharing!
I have Cerebral Palsy. With PT or no PT, I've been excluded from everything. It's sucks, but I hope you can no longer be rejected. I hope they can see that you are as good as everyone else, and not judged.
Aww i hope someday they might include you in the "treatable" group 😢
We support you too in the good and bad. Thank you for educating us!
I feel so bad for Paul (and everyone with this) that such a wonderful kind person like you don’t get to see the world
MATTHEW NEVER STOP LOVING PAUL LIKE WE DO
I’m so sorry Paul 😢❤ You deserve the very best
I'm so sorry you have to go through this, I understand the feeling of being excluded. I lost hearing in one of ears in elementary school because of the school being neglectful (I was sent outside without a coat when it was near freezing outside), I felt like an outcast because I had to wear a hearing aid, no one else had to wear one. But I do truly hope that someday you will find someone who can help you and not exclude you because your "too blind"
A study isn't about helping any individual participant though, it's about testing treatments and gathering data.
@@thomaso6579 I know that
That sucks. It's like being put into a more isolated sub category in a category that already sucks. Sending you big love, Paul. There will be a treatment out there for you, don't lose faith and hope
you are so kind to want to help others despite being so far along in the situation yourself. and the fact that your book is to help and support others too. you are a truly kind person and you have made many people feel validated in their identity just from what i see in the comments. both of you are lovely people and i look forward to supporting your journey and the other ways you find to support and help people like you.
Paul just seems like the sweetest guy. He doesn’t deserve pain or rejection 😭
I feel your pain (brought tears to my eyes). Just remember you are loved by a wonderful man and by all of us!
I know I'm one of the many thousands who have come on here to support you Paul. Thank you for making this part of how you are trying to help so visible. I reckon a lot of ppl wouldn't know much about clinical trials and or RP. I am so hoping there is some sort of breakthrough in near years that can give vision back. I'm partially blind in my right eye and my situation is nowhere near like what yours is, I only have an inkling of what it could be like and gain understanding through yours and Matthew's posts.
Paul you have me crying. The RUclips algorithm somehow got me to you. You two are the pinnacle of love on the internet. I hope Matthew reads you as many loving comments as he can.
Matthew is such a fantastic partner and how you support each other is truly inspiring. Bless you both - sending hugs to you both ❤❤
I laugh with you, guys, and I cry with you. I'm so sorry! I hope there's an answer to your hopes waiting ahead 🙏🏻 Hugs and love ❤
That’s actually really sad. I can’t even imagine what it would be like being blind, especially as an artist. It’s wonderful that Paul has Matthew as someone to support him and make sure he isn’t alone.
My mom has RP. I was always told it’s so rare and shouldn’t worry about it. In the last few years I’ve had every single dr tell me to make sure I get my eyes checked to make sure nothing “happens”.
I’ve been watching your videos for a while and didn’t know you had the same eye disease.
I was rejected for a migraine study due to having too many migraines (no where near the same thing but the rejection for being “too” whatever… makes you feel singled out or different from others suffering the same way as you). My heart goes out to you ❤❤
Awww 😢 im sorry to hear that ... Dont give up , it means something better is waiting for you !
I’m so sorry this happened to you. I had the same experience and was rejected from a study because I didn’t pass the test they gave. I found out years later that I truly was a candidate for that study. All the emotions you are feeling are so real. 😢
Breaks my heart. Bless you Paul, and Matthew, for your love and support. ❤
My heart. 💔 I'm so sorry Paul. I truly hope another study accepts you. 💜
I'm so sorry Paul. You deserve so much more ❤️
That hug at the end almost made me cry. You guys are so strong even when life is so shitty. I'd like to respectfully offer an internet hug as well.
Omg seeing him cry broke my heart. You guys are such lovely people and I wish you all the best.
This brought me to tears
I really wanted to send you both a hug, I am registered blind and I just want to tell you I think you are amazing and I think you are both great and Mr Maple too 💕 You are so inspirational and a wonderful person for raising awareness of sight loss
Thank you so much!
Your grace while in the midst of feeling secluded, and disappointed is so powerful. I am so sorry for such a disheartening rejection.
Showing that its okay to have emotion and that its okay to help people through that emotion is exactly what our community needs
Paul handled that with such grace. Hang in there 🤗
When one door closes another one opens . Don't be surprised if an unexpected opportunity for something else pops up ! ❤
Paul is so kind ❤
Makes me sad to see him sad 😢
Thank you for being a voice for so many. I'm so sorry that you are experiencing such depth of hardship. Sometimes when I have a tough vision day I hear Kermit singing "It's not eady being green". It helps me to laugh because that how U feel about loss of vision. Nobody truly knows what it's like to be green unless you're green. No one truly knows how lonely it is to lose your vision or hearing unless it happens to them. Having a simple hug and a supportive friend, family member is such a blessing. What a compassionate hubby to lean on. Thx for sharing the tough times to. Hugs
Paul is inspirational. I really hope that something comes along that can ultimately help him and everyone in his situation. Thank you for sharing this with us all.
Paul, You deserve the world. I love you guys❤ stay strong ❤
I know the feeling...🥺😢
Sending you love, hugs and positive energy, my dear! 🥹🙏💛✨💫🫶
Thank you so much!
@@MatthewandPaulOfficial you're welcome 🖤✨
Oh Matthew, you are such a good guy. Your parents should be so proud that you are so compassionate.
We all need hugs like that one at the end, if you are struggling right now, whether it’s money, medical or mental health issues, you are loved, you are worthy of a good life, and you will create a beautiful life for yourself, you are strong even when you feel like you aren’t, you got this, hang in there bbies💖💖💖
I actually started crying😭. Be who you are. You are amazing, with an amazing personality, husband and Mr Maple is there for you too. I do send lots of hugs to you all💛🐶
You two,together,are so strong!! Thank you for sharing your lives with us. I wish having a superb positive attitude was a factor for these decisions. You would be in the studies every time.
I’m so elated that you two are so happy together! 🥰🖤 We need more representation of us LGBTQ+ folk in happy relationships. Much love to you both
I'm so sorry. I can't imagine how hard and frustrating that must be. ❤
Paul you need to know with certainty that we all here (582000 subscribers) don’t exclude you but see you as some one close, very appreciated and loved like a family member. Our support to you both Paul & Matthew❤️🙏
Awwww Paul... sending hugs darling xxx
Awww give him an extra tight hug from me! He’s a brightness in the world wishing y’all the best
I’m so sorry Paul! You’re putting out so much positivity to the world while going through something so hard. Good things will come to you!
I wish we could all hug you guys.
As someone who’s disabled, I never feel “autistic enough” because I was taught early on how to act. So sorry. We need to to stop excluding from our own communities.
This exact thing has created so many meltdowns for me. Sometimes even just because everyone has convinced me that I can honestly “work through anything” before it all inevitably comes crashing down.
I'm not autistic enough either. My mom did a lot for me. She taught me how to act around people. I was born when autism wasn't autism. It was Childhood Schizophrenia. Doctors wanted my mom and dad to put me in an insane asylum forever. My parents said absolutely not. My parents didn't want to think I had "childhood schizophrenia" so they worked hard with me on how to act
I just love how Matthew is so supportive to Paul when he is having a hard day. I love watching you both so much ❤
I'm so heartbroken Paul 😢. Big hugs to you both. Keep fighting and living fearlessly. Love you. ❤❤❤
We support and appreciate you sharing your journey.
Thank you so much 🤗
Paul, feel yourself hugged! You are a wonderful human being
We're crying with you, Paul. Don't let it stop you from shining with your quick wit and laugh.
That must be heartbreaking. I’m so sorry. ❤️Sending a big hug. You bring so much joy into the world.
Thank you so much!
Poor Paul. We love ya, man! 💕
I'm sending Love and Hugs to the Both of You ❤❤❤❤
You guys are great the way you look after each other❤
😊 thank you
You are not excluded from our hearts, Paul, we love you and wish the very best for you. ❤
Love yourself, that's already the best treatment out there for anything ❤
I'm almost cried. You're both so emotional aware and medical gate keeping like this is very real...
Poor Paul! This was so sad!!
I'm so sorry, Paul... 😢
Paul is always so positive and that call was definitely not what he needed to hear. Matthew continue to love and support Paul and Mr Maple
So sorry to see this Paul. Know that you have Daddy Long Legs, Mr. Maple and all of us here that love you very much. Big giant virtual hugs. 💕
You are so kind
Aww.. Hugs, PnM... 🐾
Good luck Paul! I hope something comes around for you.
thank you for showing the UPs and DOWNs!! truly an inspiration in being there for each other in sickness AND health ❤❤❤❤❤
I had a pile of horrible setbacks and felt so utterly bereft but time passed and new opportunities came from that led to wonderful things! Sometimes what feels like a loss only happens bc something better for us is waiting and it would have prevented what was meant to be. I will be praying for your strength, that right thing finds you and happens soon!❤
For years, I worked with a retinal genetics researcher and can say this whole-heartedly-we want to help and we don’t want to exclude you. That said, the pharmaceutical companies that oversee the studies often don’t have ophthalmologists or any other vision specialists writing up these rules, and end up excluding a great deal of patients. My team had to back out of a study a couple years ago because they wanted patients 12 and up who were able to count fingers, when virtually all people with this specific gene mutation lose light perception by 12 (unsurprisingly, we could not find a single person who qualified, and we saw dozens of patients with the mutation). It’s so frustrating and I’m so sorry, but don’t give up ❤
I know you're not working in the field anymore but it does make me think, where are the research and trials where the opthamologists are involved? I would imagine this is where the most grounded studies would be - says someone with medical researchers in her family and opthamological issues since age 11.
@@clairebpbutler2789usually university hospitals are the way to go-especially ones with their own ophthalmic hospitals/wings. Bascom Palmer, Wilmer, Mass Eye & Ear, Wills Eye, Duke, etc. We had patients fly in from around the country (and even other continents) for care, so it may mean asking your ophthalmologist to keep an ear out for any trials involving your specific gene and flying out to see if you’re eligible for the trial (the requirements are notoriously strict with who they allow in as patients). If accepted, you have to fly out every few months to every year for follow up, so it requires a big commitment (many people are more than willing to do this, but sometimes life gets in the way). Hope this helps!
Poor man....my heart goes out to him.
I can't imagine how this feels. I am so glad that you have each other. Sending all kinds of love and blessings for you both. ❤
Thank you for sharing the tough stuff too. It’s really hard when you feel othered in a community of the “other”. It happens a lot in the disabled community and you are not alone, not that it makes hearing bad news any easier. Love you guys and sending love and hugs ❤
I am so sorry for the frustration and sorrow of another rejection. I will be praying for you both.
One day Paul! One day you will get your chance! Much love 💜💜💜💜
My heart goes out to him and you. You two are brave and inspirational! I wish for a cure, but I'll keep hoping for the best for him. Sending so much love!! ❤❤
😭 Oh Paul, we all love and support you no matter what. Sending you lots of hugs 🎁🫂
Appreciate the hidden camera authentic moments like this. I can tell you're able to surreptitiously set it up without Paul noticing and we can see what it's really like dealing with something like this.
I have Systemic Lupus, been rejected from SLE studies for being too old, too sick, not sick enough, etc. You handle this well. Thanks for sharing this, Paul.
This is the first time I see them showing affection towards each other
Id be furious. The way he is so graceful and carried optimism for the treatment for others although he was rejected is so strong. Hes such a beautiful soul. You are two people that are amazing together and make me happy every day. ❤
Love you both. Sending prayer and healing and much gratitude for your lovely share. Thank you , thank you both.
The support and understanding from Matthew is overwhelming 😭❤️