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Moses Dueck woke up one winter morning to a small blob of blackness in the centre vision of his left eye. He made an optometrist appointment to see what the annoyance was. His first optometrist thought he had glaucoma!
At 41, being told you have a disease that will likely leave you blind before you are 50, is quite a bit to handle. It's likely he would never actually see his kids graduate, or get married, or, if it was in the cards, grandkids. He would eventually have a day where he wouldn't see his love's face again. That was incredibly hard to process. Let alone the fact that his job, the only form of employment he'd had since 2001, was making jewelry. How in the world was a self-employed jeweller supposed to work blind? These thoughts kept him up at night.
The first optometrist set an appointment for a specialist in glaucoma, and he went to that one. He said that his eye pressure was fine, but that wasn't uncommon in glaucoma patients. The doctor recommended further testing by yet another specialist, an opthalmologist. The wait for this was a couple of months, in which time his visual field deteriorated. "The blob", which is what he called the weird shape in his vision, was changing and expanding. Changing daily. What started as a pinhole of darkness, expanded to cover a large portion of the central vision of his left eye. But it wasn't darkness anymore. It changed daily.
It started as a blurry section of vision, changing shape and what he could see changed as well. From blurry to a mosaic of random shapes and colour. Light became exceedingly difficult. He had just bought prescription glasses prior to all of this, which were useless, because his peripheral vision, the only unaffected part of his vision, had no corrective lenses around them. It wouldn't matter anyway, as he needed sunglasses, and didn’t have the money to afford prescription ones. He went through a few options and had to get welder’s glasses, shade 5, and even with these he could only be in the sun for 10-15 minutes at a time before he had to seek refuge indoors.
Once he finished testing at the opthalmologist’s, he had another few weeks to wait before they could see him to discuss results and treatment options. For what they knew beforehand, he had glaucoma. A relatively slow disease that simply left you without peripheral vision, in most cases.
In that next few weeks, central vision in his left eye continued to degrade. But his peripheral vision was fine. If he looked around, he could still effectively see, just not looking directly at objects. Depth perception began to fail, because he only had one eye to work with.
He’s fallen down the stairs. In his own home, no less, where he’s lived for years. He’s knocked down bookshelves. He’s run into corners and posts that he’s known full well were there. His ability to see his family is suffering. He can’t be around too many people, because his vision is so messed up, he can't make heads or tails, literally, of anything.
He finally got to see the opthalmologist to talk about his results. The doctor told him to sit down, as they had things to discuss, and they were not good. The doctor no longer suspected glaucoma, as he had none of the markers, the pressure was fine, and his peripheral vision was fine as well. He said he thought he had something called Leber's Disease, or LHON. Moses asked what this was, and he told him it was akin to short circuits in the optic nerves. The doctor didn’t elaborate, to avoid frightening him. He put in a referral to see the top neuro-opthamologist in the province, and sent him on his way.
At this point he had been losing his vision rapidly, over 3-4 months. He mostly maneuvered with one eye closed, because the signals getting through to his brain were confusing and distracting, sometimes painful. He began to research Leber's Disease, and found a number of support groups, and an incredibly helpful website, www.lhon.org. This was an incredibly rare disease, with an estimate of only 30,000 people globally affected.
Once he began learning about various optical neuropathy diseases, it started to sink in... 10-20 years before blindness occurs, is about 10-20 years too optimistic. He was likely to be blind before Christmas. There was no treatment. There are no cures. There are no transplant options. The nerves were dead and dying.
An analogy that explains the process is thus: if you have a TV, and a cable or satellite box, the TV is your eyeballs and the cable or satellite box is your brain. The cables connecting the two are your optic nerves. In this case, the TV works, the box works, but rats are chewing the cables, causing the signals to short out.
This explains exactly what he was "seeing" and why his vision wasn't stable. It changed daily.
The wait time for his neuro-opthamologist was estimated to be 9-12 months, because of budget cutbacks in his province, to healthcare. With the speed at which his vision was deteriorating, it didn't even matter.
But, thanks to sheer luck, not only did this top neuro-opthamologist have an opening available, but six other neuro-opthamologists and residents in the field had taken interest in his case. He scored an appointment in about 3 weeks! This was amazing! Booked for his 42nd birthday, he spent the entire day being poked and prodded and inquired upon by a team of neuro-opthamologists. By this point, his vision was marked at 20/60 in his right and 20/400 in his left. He was told by the NOs that his optic nerves were "grey and chalky". Which meant there was little to no bloodflow present. They were dying. The potential diagnosis was genetic optic neuropathy, which could include autosomal dominant optic atrophy. Leber's was not ruled out yet.
He was sent home with orders to get bloodwork done closer to home, to schedule an MRI, and begin looking for geneticists to work further.
Within a month of this visit, his left eye was reduced to a sliver of unaffected peripheral vision, and the rest was now a swirling mess of colours and light. Flashes of light began to appear even if his eyes were closed. Lights were all painful. He was also starting to see visual hallucinations. These were crystal clear, so he knew full well they were hallucinations. He called them gremlins. They appeared and interacted with his surroundings.
He was given the additional diagnoses of photophobia, as well as Charles Bonnet Syndrome. These might go away, but were more likely to stay forever. Two weeks later, his right eye began to deteriorate. "The blob" has appeared in the centre of his field of vision, and had progressed thus far to be about the size of an apple when held at arm's length. Light sensitivity was more apparent now as he couldn't just use one eye. On his intake appointment with the Canadian National Institute for the Blind (CNIB), only a month from his day full of neuro-opthamologists, his vision was scored at 10/200 in each eye, corrective lenses or not. This meant that what the average person could see at 200 feet, he realized it was there at around 10 feet. He was now legally blind.
He had to purchase any visual aids out of pocket, because Manitoba Health Care didn't consider vision to be a requirement. Canes were a luxury. Magnifiers too. Anything one could need, came out of his pocket. And he had nothing left to give. The well was dry. Not only dry, but his credit cards were maxed out, to the tune of $6000. Bank accounts were overdrawn another $1000, and he has bill collectors calling him hourly. It turns out that a lot of medical assistance in Canada is no longer covered in Manitoba, thanks to cutbacks.
If he wanted to make his home more accessible and safer, he would have to cover this with no income. Since he is, or was, self employed, he does not have much in his disability pension federally, and having no means of employment means the collectors will keep calling.
What he is asking for is to be able to get into the black. To be able to start clean. He’s not asking for millions of dollars: he just want to be out of debt, and not have collectors after him for medical bills because his ability to see is considered a luxury. His goal is to raise $8,000 to accomplish this. Once he is in the clear, he will do what he can, and what he must, to keep himself there.
Your donations are greatly appreciated, and sharing this campaign is also an incredible gesture. Thank you for your time and generosity.
At 41, being told you have a disease that will likely leave you blind before you are 50, is quite a bit to handle. It's likely he would never actually see his kids graduate, or get married, or, if it was in the cards, grandkids. He would eventually have a day where he wouldn't see his love's face again. That was incredibly hard to process. Let alone the fact that his job, the only form of employment he'd had since 2001, was making jewelry. How in the world was a self-employed jeweller supposed to work blind? These thoughts kept him up at night.
The first optometrist set an appointment for a specialist in glaucoma, and he went to that one. He said that his eye pressure was fine, but that wasn't uncommon in glaucoma patients. The doctor recommended further testing by yet another specialist, an opthalmologist. The wait for this was a couple of months, in which time his visual field deteriorated. "The blob", which is what he called the weird shape in his vision, was changing and expanding. Changing daily. What started as a pinhole of darkness, expanded to cover a large portion of the central vision of his left eye. But it wasn't darkness anymore. It changed daily.
It started as a blurry section of vision, changing shape and what he could see changed as well. From blurry to a mosaic of random shapes and colour. Light became exceedingly difficult. He had just bought prescription glasses prior to all of this, which were useless, because his peripheral vision, the only unaffected part of his vision, had no corrective lenses around them. It wouldn't matter anyway, as he needed sunglasses, and didn’t have the money to afford prescription ones. He went through a few options and had to get welder’s glasses, shade 5, and even with these he could only be in the sun for 10-15 minutes at a time before he had to seek refuge indoors.
Once he finished testing at the opthalmologist’s, he had another few weeks to wait before they could see him to discuss results and treatment options. For what they knew beforehand, he had glaucoma. A relatively slow disease that simply left you without peripheral vision, in most cases.
In that next few weeks, central vision in his left eye continued to degrade. But his peripheral vision was fine. If he looked around, he could still effectively see, just not looking directly at objects. Depth perception began to fail, because he only had one eye to work with.
He’s fallen down the stairs. In his own home, no less, where he’s lived for years. He’s knocked down bookshelves. He’s run into corners and posts that he’s known full well were there. His ability to see his family is suffering. He can’t be around too many people, because his vision is so messed up, he can't make heads or tails, literally, of anything.
He finally got to see the opthalmologist to talk about his results. The doctor told him to sit down, as they had things to discuss, and they were not good. The doctor no longer suspected glaucoma, as he had none of the markers, the pressure was fine, and his peripheral vision was fine as well. He said he thought he had something called Leber's Disease, or LHON. Moses asked what this was, and he told him it was akin to short circuits in the optic nerves. The doctor didn’t elaborate, to avoid frightening him. He put in a referral to see the top neuro-opthamologist in the province, and sent him on his way.
At this point he had been losing his vision rapidly, over 3-4 months. He mostly maneuvered with one eye closed, because the signals getting through to his brain were confusing and distracting, sometimes painful. He began to research Leber's Disease, and found a number of support groups, and an incredibly helpful website, www.lhon.org. This was an incredibly rare disease, with an estimate of only 30,000 people globally affected.
Once he began learning about various optical neuropathy diseases, it started to sink in... 10-20 years before blindness occurs, is about 10-20 years too optimistic. He was likely to be blind before Christmas. There was no treatment. There are no cures. There are no transplant options. The nerves were dead and dying.
An analogy that explains the process is thus: if you have a TV, and a cable or satellite box, the TV is your eyeballs and the cable or satellite box is your brain. The cables connecting the two are your optic nerves. In this case, the TV works, the box works, but rats are chewing the cables, causing the signals to short out.
This explains exactly what he was "seeing" and why his vision wasn't stable. It changed daily.
The wait time for his neuro-opthamologist was estimated to be 9-12 months, because of budget cutbacks in his province, to healthcare. With the speed at which his vision was deteriorating, it didn't even matter.
But, thanks to sheer luck, not only did this top neuro-opthamologist have an opening available, but six other neuro-opthamologists and residents in the field had taken interest in his case. He scored an appointment in about 3 weeks! This was amazing! Booked for his 42nd birthday, he spent the entire day being poked and prodded and inquired upon by a team of neuro-opthamologists. By this point, his vision was marked at 20/60 in his right and 20/400 in his left. He was told by the NOs that his optic nerves were "grey and chalky". Which meant there was little to no bloodflow present. They were dying. The potential diagnosis was genetic optic neuropathy, which could include autosomal dominant optic atrophy. Leber's was not ruled out yet.
He was sent home with orders to get bloodwork done closer to home, to schedule an MRI, and begin looking for geneticists to work further.
Within a month of this visit, his left eye was reduced to a sliver of unaffected peripheral vision, and the rest was now a swirling mess of colours and light. Flashes of light began to appear even if his eyes were closed. Lights were all painful. He was also starting to see visual hallucinations. These were crystal clear, so he knew full well they were hallucinations. He called them gremlins. They appeared and interacted with his surroundings.
He was given the additional diagnoses of photophobia, as well as Charles Bonnet Syndrome. These might go away, but were more likely to stay forever. Two weeks later, his right eye began to deteriorate. "The blob" has appeared in the centre of his field of vision, and had progressed thus far to be about the size of an apple when held at arm's length. Light sensitivity was more apparent now as he couldn't just use one eye. On his intake appointment with the Canadian National Institute for the Blind (CNIB), only a month from his day full of neuro-opthamologists, his vision was scored at 10/200 in each eye, corrective lenses or not. This meant that what the average person could see at 200 feet, he realized it was there at around 10 feet. He was now legally blind.
He had to purchase any visual aids out of pocket, because Manitoba Health Care didn't consider vision to be a requirement. Canes were a luxury. Magnifiers too. Anything one could need, came out of his pocket. And he had nothing left to give. The well was dry. Not only dry, but his credit cards were maxed out, to the tune of $6000. Bank accounts were overdrawn another $1000, and he has bill collectors calling him hourly. It turns out that a lot of medical assistance in Canada is no longer covered in Manitoba, thanks to cutbacks.
If he wanted to make his home more accessible and safer, he would have to cover this with no income. Since he is, or was, self employed, he does not have much in his disability pension federally, and having no means of employment means the collectors will keep calling.
What he is asking for is to be able to get into the black. To be able to start clean. He’s not asking for millions of dollars: he just want to be out of debt, and not have collectors after him for medical bills because his ability to see is considered a luxury. His goal is to raise $8,000 to accomplish this. Once he is in the clear, he will do what he can, and what he must, to keep himself there.
Your donations are greatly appreciated, and sharing this campaign is also an incredible gesture. Thank you for your time and generosity.
Organizer
Benoit Chartier
Organizer
Gatineau, QC