Help Walker get back on the road to healing
Spende geschützt
https://www.gofundme.com/f/help-walker-find-secure-housing-post-surgery
Here is the new fundraiser we are working on for Walker's housing. Will shut this one down soon. Thanks all
We edited this to provide a full picture of who Walker was before his illness took over his life, as well as a brief summary of his illness so far. For a full picture of where he is now, the text at the bottom was written in December of 2019. The covid-19 pandemic has affected our current and future plans, and we are currently working on figuring out how to move forward and adapt. It is our ultimate goal to stay vigilant and further Walker's healing, even amongst this crisis.
Walker’s illness – Walker was diagnosed with Lyme Disease and was treated for that condition in 2016. He continued to work and go to school (Hampshire College) for the year following that, but in 2017 he became ill again, and he received the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a debilitating condition which manifests itself in a variety of ways. For Walker it has meant regular and intense pain, severe fatigue, and being generally immobile and physically confined to his bed or wheelchair, among myriad other problems.. He has been continuously ill since 2017, and his condition has generally declined, though his recent journey has brought some glimmers of improvement. ME/CFS often follows a preceding infection or condition, such as Lyme Disease. Walker is currently in the Western US, moving around in an attempt to find locations that provide some relief from his symptoms, with the hope that this may ultimately prove to be healing for him. He has had some success with this approach.
Walker has not worked since he has become ill, and he requires constant care and support. His sister Sammy has been directly caring for Walker for more than a year now, full-time. There are no standard treatments or protocols for ME/CFS, so people with this diagnosis are left to largely figure out their own treatment, and pathways through an inadequate and unsympathetic health care system. Walker’s needs include basics such as shelter and food, as well as medications, supplements and other treatments that are not covered by health insurance. Please consider a contribution to help Walker on his road to healing.
**(For the most recent updates scroll down to the bottom)
Who is Walker?
By his parents:
Walker Storz is an artist, musician, writer and activist currently suffering from ME/CFS. As a child Walker was a very avid reader; he consumed books. He actually read the entire library of Newbery Medal books as a pre-teen, one for every year from 1922 to 2005. Walker was also a precocious speller. He won a number of school spelling bees, earning a trip to Washington DC to represent Vermont in the 2008 Scripps National Spelling Bee.
Walker has always been active. As a young child Walker was interested in Mountains, especially Mount Everest. While living in Colorado as a four and five year old, Walker climbed many mountains with his family. He summited Grey’s Peak, one of Colorado’s 14,000 footers, in the summer of 2000, when he was 5 years old. As we settled in Vermont Walker continued to enjoy hiking and the outdoors. He was especially passionate about downhill skiing at Burke Mountain, and competing in Baseball, Soccer and Track and Field.
Walker is also an accomplished Musician who began developing his skills on the trumpet in the middle school band at the Lyndon Town School. Walker earned Vermont All-State Jazz honors on trumpet in his Freshman year of High School, and then transferred his interest to guitar, playing his way to All-State Jazz honors on that instrument in his sophomore year. Walker has always been passionate about all music, but in his school years it was especially jazz. He was awarded a scholarship to Idyllwild Arts Academy for his Junior and Senior years of High School, studying with Marshall Hawkins and other great faculty. Walker continued working with his passion for music at Hampshire College, where he studied for years, before having to drop out due to the progression of his illness. At Hampshire Walker extended his musical reach into electronic/experimental and singer/songwriter projects, often blurring the lines of these and keeping his jazz sensibility alive through it all.
Walker is passionate about performing music for people. He’s been in the Bread and Puppet Band for many years, and also performed regularly at St. Johnsbury First Night, numerous Vermont Farmers Markets and nightclubs, in addition to street performances in Vermont and Massachusetts. Walker is an ambitious artist and passionate musical provocateur who loves to organize and get things going.
At Hampshire College Walker also immersed himself in photography, bringing his take-no-prisoners attitude and musical sensibility into that discipline. Walker also began to write seriously. He developed an accomplished, clear voice, with a strong and searching conscience. Walker has published a photography book, as well as poems and essays.
Walker is an activist who cares deeply about those people who are marginalized in our society. In this moment, Walker recognizes that people with the condition that he has, ME/CFS, are a group who are essentially ignored by the powers that be in our country, and, despite his disabled condition, he is engaged with ME Action to work on raising awareness of this illness. He is especially concerned with the cause of increasing Federal research funding for ME/CFS, funding which is currently almost non-existent.
It is very hard to see our vital and alive son struggle/suffer with this illness, and especially so when there is so little understanding of his condition in the medical field, no standard treatment protocols or regimens. The community of ME/CFS patients is left to attempt to figure out what helps them get better almost entirely on their own, which is both a terrifying and insane state of affairs, though the perseverance of these patient/advocates is also inspiring to witness. Walker has so much to give to the world, so much in front of him. Please help him to get from here to there.
Lucy Storz:
Ever since I was young, my brother Walker has been someone I looked up to. He’s smart, kind, and funny. He always took care of me and gave me good advice. One night when I was around 6 or 7 years old, I had a nightmare about Voldemort because I had just finished the Sorcerer's Stone. I woke up in the middle of the night and went into Walker’s room and he read me my favorite book at the time, Lafcadio the Great by Shel Silverstein. When I was deep in my struggles with an eating disorder he researched my illness, distracted me, and kept my spirits high. This was all while he was home from college and researching his own illness. He put in time and effort to help me heal.
More on Walker’s Illness and Details of His Healing Journey
By Sammy Storz:
As many of you know, Walker has been sick for over 3 years with ME/CFS, POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), and CCI (craniocervical instability). The symptoms of his illnesses include severe chronic pain, severe chronic fatigue, brain fog, autonomic issues, metabolic issues, and neurological issues, among other debilitating symptoms. We’ve linked more information about Walker’s diagnosis here . This spring while living at home, Walker began to worsen rapidly, experiencing more episodes of paralysis, increased fatigue, and more gut issues than before. In May 2019 Walker was diagnosed with Craniocervical Instability (CCI) by two neurosurgeons. While this provided us with an explanation for some of his most troubling symptoms and pointed to a clear structural issue in his cervical spine, it also presented the question of treatments to pursue. We explored treatments for CCI, possibly in the form of a fusion surgery to correct brainstem compression. Treatment for CCI could relieve many symptoms, but the expenses are a huge roadblock. CCI is debilitating and can also be a life-threatening condition when left untreated. Walker needed further extensive testing to explore the option of surgery, and would need to wait months for a surgery date. Meanwhile his health was declining at a rapid rate, and we needed something to reverse that.
For an idea of how awful the quality of life was for walker before starting this treatment, watch this video based on a statement he wrote to be read at an ME/CFS awareness event.
We spent months seeing doctors and getting treatments, but many of the treatments we tried didn’t help. Those that did help were very short lived and could relieve symptoms only for a couple hours at a time. All of these treatments were difficult and/or expensive to access. By June 2019 Walker was almost entirely bed bound. One of our options was to wait six months to see the top ME/CFS specialist in the country, who probably couldn't provide a treatment that would send Walker into remission as there are currently no known cures or fully effective treatments for ME/CFS, only experimental treatments. We didn't want to pay $2,000 to see a doctor for an hour, and we couldn’t wait six months. We needed to figure something out fast, as Walker's decline was frightening, and clearly would only get worse.
Many people with ME/CFS have improved their symptoms and in some cases fully recovered by leaving homes contaminated with toxic mold and living in pristine wilderness areas for a period of time. In the documentary Unrest, Jen Brea includes a brief scene in Moab, Utah for example, and writes about how toxic mold affected her in this article . This article also discusses the science possibly linking craniocervical instability with mold and mast cell activation. Julie Rehmeyer, a science writer who became sick with ME/CFS, also wrote a book on her experience avoiding mold. Erik Johnson, a pioneer who healed his chronic illness spoke about his experience in this podcast . Walker began to do research on the issue of mold and how it related to his illness. We’ve included some links about the connections between MCAS, mold, and chronic illness at the bottom.
Through reading people's experiences who took this approach, and doing our own research, we learned a lot and were interested enough to experiment with it. We tested our house for mold, and tested Walker's blood. Both confirmed that we had a serious toxic mold problem that was likely either worsening Walker's existing symptoms or causing them. We experimented. Walker felt somewhat better with his window open. We wheeled him out to the front porch where, even though it was miserably cold, Walker experienced some cognitive relief. He could think a little better and handle conversation without crashing hard afterwards. However the effect would disappear when he went back inside.
We began to form a plan based on this information. We knew pursuing this could fail, but the possibility of recovery outweighed the risk. Before this, Walker's health had been steadily declining for three years, with some periods of rapid decline. The medical system provided us with a diagnosis, but no promise of effective treatment, no end in sight. It is important to stress again that there are no known cures or fully effective treatments for ME/CFS, no FDA approved treatments, and that 95% of ME/CFS patients never recover, let alone severe patients, a category in which Walker has fallen. This is mainly due to the lack of research and funding allotted to ME/CFS even though it affects more than an estimated 2.5 million Americans . The few treatments provided to Walker were no match for the constant pain and fatigue he experienced. Even if they did improve some symptoms for a time, it was inches when we needed miles. And this was while seeing the top specialists in immunology, neurology, and infectious disease on the east coast. We were ready to make a drastic change to improve Walker's health.
Our first stop after leaving Vermont was an area in New Hampshire where one of Walker's doctors recommended we meet him. This doctor also recovered from ME/CFS and helped us make a plan to jumpstart Walker's recovery. Even though Walker's doctor was doing well in a small part of New Hampshire, he recommended we try parts of the Southwest where there were larger areas of pristine wilderness. After being in this part of New Hampshire for half an hour, Walker noted feeling better. When he was getting back in the car, he stood up to his full height, something I hadn't seen him do in almost a year. When you only see someone sick and bed bound and suddenly they are standing, it's sort of a shock. I had forgotten how tall he was. This felt like a good sign that we were making the right decision.
Since then we've travelled across the country seeking pristine areas of wilderness away from toxic molds, and stopping along the way in places that had helped to alleviate symptoms for others who suffer similar types of illnesses. We’ve found areas where Walker has felt stronger and healthier, and that has given us hope. In some areas, Walker has been able to walk the length of a football field without having POTS symptoms or post exertional malaise (PEM). At home, even just crawling to the bathroom would make his heart rate shoot up without him even standing up, and would cause debilitating PEM. In many areas his cognitive function, quality of sleep, gut function, and more, have all improved. Although there have been many ups and downs, his overall baseline of health has improved, even with the daily stress and struggles of this lifestyle. Being outside and in pristine areas has so far been the only thing to really help with Walker’s symptoms for an extended time, and so living this way has become vital for improving Walker’s health. However traveling and camping with a severely ill person and only one caretaker is extremely difficult. We have had to travel thousands of miles when, previously, Walker was rarely able to leave the house. Walker’s symptoms also include sensitivity to sun and extreme temperatures which has complicated our ability to camp in certain areas without specialized equipment. Similarly, sleeping on traditional camping mattresses isn't possible for Walker due to his severe cervical issues. These are still problems we are dealing with and which make camping a lot harder.
(Some photos of Walker exploring the Ancient Bristlecone Pineforest in California and Red Rock Canyon in Nevada. He was able to walk short distances in these areas )
Despite the challenges, tent camping is the most effective way to avoid toxic molds, and the only living situation where Walker has really begun to improve. What is different now is that we know recovery is possible. However we still have a very long way to go and it has been, and continues to be, incredibly difficult. With winter almost here we can no longer camp so we are looking into indoor housing. This is frustrating because Walker experienced the most improvements while camping and spending all day and night outside. He has generally done worse in buildings. While his health is still better than it was while living in Vermont, it has begun to decline since we’ve had to be inside more due to changing temperatures. We don't want to delay or reverse his healing, but we need to survive the winter.
Once temperatures start to rise again, we want to get back outside, to areas that have helped alleviate Walkers pain and fatigue, however by then we hope to be much better equipped. The best option would be to move into a mold free and resistant trailer which would allow more access to the outdoors even in adverse conditions such as rain or cold weather. This would be a lasting, year round solution, and provide more stability and safety while not compromising on healing. For now we desperately need to find winter housing, without toxic mold, that Walker can be in without his symptoms worsening. We are currently only able to survive day to day, due to the challenges of camping as the cold sets in and continuing to manage Walker’s illness, but with safe winter housing we could have the stability to prepare for long term housing and for trying other treatments.
Currently our largest expenses are threefold. Firstly, we are still struggling to pay for medical costs such as compounded medication that Walker needs every month, which is not covered by insurance, as well as travel costs to and from areas where Walker is able to feel somewhat better. The yearly cost of medical treatments, and of taking care of a severely ill ME/CFS patient often lands around $100,000. Secondly, housing is also now a medical cost unfortunately, as living away from mold is the only treatment that has improved Walker’s health. This includes short term housing (which is more expensive but sometimes necessary as to not make long term financial commitments that could end up being harmful to Walker's health), as well as hopefully long term winter housing in an area where he feels healthy. Having stable mold free housing is essential as a baseline for all other treatments. The third expense is buying or custom building a mold free and resistant trailer. We've researched many options for building or buying good travel trailers. One option is to buy a cargo trailer that would be relatively cheap and contain simple materials, simple plumbing, and no wood, which would make it fairly resistant to mold growth. Other options include buying a conventional trailer with good resale value to trade in if it gets moldy, or custom building a trailer to make sure it met our needs in terms of mold resistance and weather proofing.
Walker is a very good candidate for a craniocervical fusion surgery, which could improve his quality of life a lot, but we need to find mold free housing for him to recover in, before scheduling the surgery.
For the most part during Walkers illness we have been reliant on fundraising. Our immediate family does their best to support us, but the financial burden of this illness is huge and sometimes exponential. What we’ve been able to fundraise in the last two and a half years, combined with our own finances has allowed us to have Walker's illnesses diagnosed, see appropriate doctors, pay for necessary medications that aren't covered by insurance, and get expensive testing and imaging done. It has also allowed us to pursue a change in environment and lifestyle which, at this point, has proven vital to Walker’s recovery. We couldn’t have done any of this without the support of family, friends, and strangers. Both financial support and emotional support, prayers and thoughts and hopes, have been our lifeline. Thanks to this support we have survived the last several years and developed a clearer plan for recovery.
However the combined costs of doctor’s visits, tests, temporarily helpful medical treatments, consultations with the few experts that exist, and finally making the move to get out of a moldy home, came at great physical, emotional, and financial cost. We are nearly back to square one in terms of finances, and now living far from our support network of friends and family. We’ve finally been able to get SSI but it is a very small monthly amount and we want to get caregiver paid hours. If this happens we will hopefully no longer need to fundraise, but that goal is still a long way off. Right now, especially with the challenges of winter upon us, we are still fighting for survival on a daily basis. But the changes in Walker’s conditions since leaving home have given us hope and direction. Hopefully one day patients won't have to go to the ends of the Earth, endure so much pain and suffering, and empty their savings/go into debt to recover, but this is the world we are living in now and the reality we are dealing with. Soon, we hope to be back on our feet, supporting ourselves fully, living sustainably and enjoying life instead of fighting for survival on a daily basis. Right now we are struggling but we know that there is a light at the end of the tunnel. We appreciate everyone's continued support and are grateful for each and every contribution ❤️
Links to studies from Walker:
"Nanoparticle decoration impacts airborne fungal pathobiology"
Lecture on MCAS which includes info on mold by a leading physician/researcher
Screenshot from same video on mycotoxins
"The effects of mycotoxins and selenium deficiency on tissue-engineered cartilage."
"Mold inhalation causes innate immune activation, neural, cognitive and emotional dysfunction"
Here is the new fundraiser we are working on for Walker's housing. Will shut this one down soon. Thanks all
We edited this to provide a full picture of who Walker was before his illness took over his life, as well as a brief summary of his illness so far. For a full picture of where he is now, the text at the bottom was written in December of 2019. The covid-19 pandemic has affected our current and future plans, and we are currently working on figuring out how to move forward and adapt. It is our ultimate goal to stay vigilant and further Walker's healing, even amongst this crisis.
Walker’s illness – Walker was diagnosed with Lyme Disease and was treated for that condition in 2016. He continued to work and go to school (Hampshire College) for the year following that, but in 2017 he became ill again, and he received the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a debilitating condition which manifests itself in a variety of ways. For Walker it has meant regular and intense pain, severe fatigue, and being generally immobile and physically confined to his bed or wheelchair, among myriad other problems.. He has been continuously ill since 2017, and his condition has generally declined, though his recent journey has brought some glimmers of improvement. ME/CFS often follows a preceding infection or condition, such as Lyme Disease. Walker is currently in the Western US, moving around in an attempt to find locations that provide some relief from his symptoms, with the hope that this may ultimately prove to be healing for him. He has had some success with this approach.
Walker has not worked since he has become ill, and he requires constant care and support. His sister Sammy has been directly caring for Walker for more than a year now, full-time. There are no standard treatments or protocols for ME/CFS, so people with this diagnosis are left to largely figure out their own treatment, and pathways through an inadequate and unsympathetic health care system. Walker’s needs include basics such as shelter and food, as well as medications, supplements and other treatments that are not covered by health insurance. Please consider a contribution to help Walker on his road to healing.
**(For the most recent updates scroll down to the bottom)
Who is Walker?
By his parents:
Walker Storz is an artist, musician, writer and activist currently suffering from ME/CFS. As a child Walker was a very avid reader; he consumed books. He actually read the entire library of Newbery Medal books as a pre-teen, one for every year from 1922 to 2005. Walker was also a precocious speller. He won a number of school spelling bees, earning a trip to Washington DC to represent Vermont in the 2008 Scripps National Spelling Bee.
Walker has always been active. As a young child Walker was interested in Mountains, especially Mount Everest. While living in Colorado as a four and five year old, Walker climbed many mountains with his family. He summited Grey’s Peak, one of Colorado’s 14,000 footers, in the summer of 2000, when he was 5 years old. As we settled in Vermont Walker continued to enjoy hiking and the outdoors. He was especially passionate about downhill skiing at Burke Mountain, and competing in Baseball, Soccer and Track and Field.
Walker is also an accomplished Musician who began developing his skills on the trumpet in the middle school band at the Lyndon Town School. Walker earned Vermont All-State Jazz honors on trumpet in his Freshman year of High School, and then transferred his interest to guitar, playing his way to All-State Jazz honors on that instrument in his sophomore year. Walker has always been passionate about all music, but in his school years it was especially jazz. He was awarded a scholarship to Idyllwild Arts Academy for his Junior and Senior years of High School, studying with Marshall Hawkins and other great faculty. Walker continued working with his passion for music at Hampshire College, where he studied for years, before having to drop out due to the progression of his illness. At Hampshire Walker extended his musical reach into electronic/experimental and singer/songwriter projects, often blurring the lines of these and keeping his jazz sensibility alive through it all.
Walker is passionate about performing music for people. He’s been in the Bread and Puppet Band for many years, and also performed regularly at St. Johnsbury First Night, numerous Vermont Farmers Markets and nightclubs, in addition to street performances in Vermont and Massachusetts. Walker is an ambitious artist and passionate musical provocateur who loves to organize and get things going.
At Hampshire College Walker also immersed himself in photography, bringing his take-no-prisoners attitude and musical sensibility into that discipline. Walker also began to write seriously. He developed an accomplished, clear voice, with a strong and searching conscience. Walker has published a photography book, as well as poems and essays.
Walker is an activist who cares deeply about those people who are marginalized in our society. In this moment, Walker recognizes that people with the condition that he has, ME/CFS, are a group who are essentially ignored by the powers that be in our country, and, despite his disabled condition, he is engaged with ME Action to work on raising awareness of this illness. He is especially concerned with the cause of increasing Federal research funding for ME/CFS, funding which is currently almost non-existent.
It is very hard to see our vital and alive son struggle/suffer with this illness, and especially so when there is so little understanding of his condition in the medical field, no standard treatment protocols or regimens. The community of ME/CFS patients is left to attempt to figure out what helps them get better almost entirely on their own, which is both a terrifying and insane state of affairs, though the perseverance of these patient/advocates is also inspiring to witness. Walker has so much to give to the world, so much in front of him. Please help him to get from here to there.
Lucy Storz:
Ever since I was young, my brother Walker has been someone I looked up to. He’s smart, kind, and funny. He always took care of me and gave me good advice. One night when I was around 6 or 7 years old, I had a nightmare about Voldemort because I had just finished the Sorcerer's Stone. I woke up in the middle of the night and went into Walker’s room and he read me my favorite book at the time, Lafcadio the Great by Shel Silverstein. When I was deep in my struggles with an eating disorder he researched my illness, distracted me, and kept my spirits high. This was all while he was home from college and researching his own illness. He put in time and effort to help me heal.
More on Walker’s Illness and Details of His Healing Journey
By Sammy Storz:
As many of you know, Walker has been sick for over 3 years with ME/CFS, POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), and CCI (craniocervical instability). The symptoms of his illnesses include severe chronic pain, severe chronic fatigue, brain fog, autonomic issues, metabolic issues, and neurological issues, among other debilitating symptoms. We’ve linked more information about Walker’s diagnosis here . This spring while living at home, Walker began to worsen rapidly, experiencing more episodes of paralysis, increased fatigue, and more gut issues than before. In May 2019 Walker was diagnosed with Craniocervical Instability (CCI) by two neurosurgeons. While this provided us with an explanation for some of his most troubling symptoms and pointed to a clear structural issue in his cervical spine, it also presented the question of treatments to pursue. We explored treatments for CCI, possibly in the form of a fusion surgery to correct brainstem compression. Treatment for CCI could relieve many symptoms, but the expenses are a huge roadblock. CCI is debilitating and can also be a life-threatening condition when left untreated. Walker needed further extensive testing to explore the option of surgery, and would need to wait months for a surgery date. Meanwhile his health was declining at a rapid rate, and we needed something to reverse that.
For an idea of how awful the quality of life was for walker before starting this treatment, watch this video based on a statement he wrote to be read at an ME/CFS awareness event.
We spent months seeing doctors and getting treatments, but many of the treatments we tried didn’t help. Those that did help were very short lived and could relieve symptoms only for a couple hours at a time. All of these treatments were difficult and/or expensive to access. By June 2019 Walker was almost entirely bed bound. One of our options was to wait six months to see the top ME/CFS specialist in the country, who probably couldn't provide a treatment that would send Walker into remission as there are currently no known cures or fully effective treatments for ME/CFS, only experimental treatments. We didn't want to pay $2,000 to see a doctor for an hour, and we couldn’t wait six months. We needed to figure something out fast, as Walker's decline was frightening, and clearly would only get worse.
Many people with ME/CFS have improved their symptoms and in some cases fully recovered by leaving homes contaminated with toxic mold and living in pristine wilderness areas for a period of time. In the documentary Unrest, Jen Brea includes a brief scene in Moab, Utah for example, and writes about how toxic mold affected her in this article . This article also discusses the science possibly linking craniocervical instability with mold and mast cell activation. Julie Rehmeyer, a science writer who became sick with ME/CFS, also wrote a book on her experience avoiding mold. Erik Johnson, a pioneer who healed his chronic illness spoke about his experience in this podcast . Walker began to do research on the issue of mold and how it related to his illness. We’ve included some links about the connections between MCAS, mold, and chronic illness at the bottom.
Through reading people's experiences who took this approach, and doing our own research, we learned a lot and were interested enough to experiment with it. We tested our house for mold, and tested Walker's blood. Both confirmed that we had a serious toxic mold problem that was likely either worsening Walker's existing symptoms or causing them. We experimented. Walker felt somewhat better with his window open. We wheeled him out to the front porch where, even though it was miserably cold, Walker experienced some cognitive relief. He could think a little better and handle conversation without crashing hard afterwards. However the effect would disappear when he went back inside.
We began to form a plan based on this information. We knew pursuing this could fail, but the possibility of recovery outweighed the risk. Before this, Walker's health had been steadily declining for three years, with some periods of rapid decline. The medical system provided us with a diagnosis, but no promise of effective treatment, no end in sight. It is important to stress again that there are no known cures or fully effective treatments for ME/CFS, no FDA approved treatments, and that 95% of ME/CFS patients never recover, let alone severe patients, a category in which Walker has fallen. This is mainly due to the lack of research and funding allotted to ME/CFS even though it affects more than an estimated 2.5 million Americans . The few treatments provided to Walker were no match for the constant pain and fatigue he experienced. Even if they did improve some symptoms for a time, it was inches when we needed miles. And this was while seeing the top specialists in immunology, neurology, and infectious disease on the east coast. We were ready to make a drastic change to improve Walker's health.
Our first stop after leaving Vermont was an area in New Hampshire where one of Walker's doctors recommended we meet him. This doctor also recovered from ME/CFS and helped us make a plan to jumpstart Walker's recovery. Even though Walker's doctor was doing well in a small part of New Hampshire, he recommended we try parts of the Southwest where there were larger areas of pristine wilderness. After being in this part of New Hampshire for half an hour, Walker noted feeling better. When he was getting back in the car, he stood up to his full height, something I hadn't seen him do in almost a year. When you only see someone sick and bed bound and suddenly they are standing, it's sort of a shock. I had forgotten how tall he was. This felt like a good sign that we were making the right decision.
Since then we've travelled across the country seeking pristine areas of wilderness away from toxic molds, and stopping along the way in places that had helped to alleviate symptoms for others who suffer similar types of illnesses. We’ve found areas where Walker has felt stronger and healthier, and that has given us hope. In some areas, Walker has been able to walk the length of a football field without having POTS symptoms or post exertional malaise (PEM). At home, even just crawling to the bathroom would make his heart rate shoot up without him even standing up, and would cause debilitating PEM. In many areas his cognitive function, quality of sleep, gut function, and more, have all improved. Although there have been many ups and downs, his overall baseline of health has improved, even with the daily stress and struggles of this lifestyle. Being outside and in pristine areas has so far been the only thing to really help with Walker’s symptoms for an extended time, and so living this way has become vital for improving Walker’s health. However traveling and camping with a severely ill person and only one caretaker is extremely difficult. We have had to travel thousands of miles when, previously, Walker was rarely able to leave the house. Walker’s symptoms also include sensitivity to sun and extreme temperatures which has complicated our ability to camp in certain areas without specialized equipment. Similarly, sleeping on traditional camping mattresses isn't possible for Walker due to his severe cervical issues. These are still problems we are dealing with and which make camping a lot harder.
(Some photos of Walker exploring the Ancient Bristlecone Pineforest in California and Red Rock Canyon in Nevada. He was able to walk short distances in these areas )Despite the challenges, tent camping is the most effective way to avoid toxic molds, and the only living situation where Walker has really begun to improve. What is different now is that we know recovery is possible. However we still have a very long way to go and it has been, and continues to be, incredibly difficult. With winter almost here we can no longer camp so we are looking into indoor housing. This is frustrating because Walker experienced the most improvements while camping and spending all day and night outside. He has generally done worse in buildings. While his health is still better than it was while living in Vermont, it has begun to decline since we’ve had to be inside more due to changing temperatures. We don't want to delay or reverse his healing, but we need to survive the winter.
Once temperatures start to rise again, we want to get back outside, to areas that have helped alleviate Walkers pain and fatigue, however by then we hope to be much better equipped. The best option would be to move into a mold free and resistant trailer which would allow more access to the outdoors even in adverse conditions such as rain or cold weather. This would be a lasting, year round solution, and provide more stability and safety while not compromising on healing. For now we desperately need to find winter housing, without toxic mold, that Walker can be in without his symptoms worsening. We are currently only able to survive day to day, due to the challenges of camping as the cold sets in and continuing to manage Walker’s illness, but with safe winter housing we could have the stability to prepare for long term housing and for trying other treatments.
Currently our largest expenses are threefold. Firstly, we are still struggling to pay for medical costs such as compounded medication that Walker needs every month, which is not covered by insurance, as well as travel costs to and from areas where Walker is able to feel somewhat better. The yearly cost of medical treatments, and of taking care of a severely ill ME/CFS patient often lands around $100,000. Secondly, housing is also now a medical cost unfortunately, as living away from mold is the only treatment that has improved Walker’s health. This includes short term housing (which is more expensive but sometimes necessary as to not make long term financial commitments that could end up being harmful to Walker's health), as well as hopefully long term winter housing in an area where he feels healthy. Having stable mold free housing is essential as a baseline for all other treatments. The third expense is buying or custom building a mold free and resistant trailer. We've researched many options for building or buying good travel trailers. One option is to buy a cargo trailer that would be relatively cheap and contain simple materials, simple plumbing, and no wood, which would make it fairly resistant to mold growth. Other options include buying a conventional trailer with good resale value to trade in if it gets moldy, or custom building a trailer to make sure it met our needs in terms of mold resistance and weather proofing.
Walker is a very good candidate for a craniocervical fusion surgery, which could improve his quality of life a lot, but we need to find mold free housing for him to recover in, before scheduling the surgery.
For the most part during Walkers illness we have been reliant on fundraising. Our immediate family does their best to support us, but the financial burden of this illness is huge and sometimes exponential. What we’ve been able to fundraise in the last two and a half years, combined with our own finances has allowed us to have Walker's illnesses diagnosed, see appropriate doctors, pay for necessary medications that aren't covered by insurance, and get expensive testing and imaging done. It has also allowed us to pursue a change in environment and lifestyle which, at this point, has proven vital to Walker’s recovery. We couldn’t have done any of this without the support of family, friends, and strangers. Both financial support and emotional support, prayers and thoughts and hopes, have been our lifeline. Thanks to this support we have survived the last several years and developed a clearer plan for recovery.
However the combined costs of doctor’s visits, tests, temporarily helpful medical treatments, consultations with the few experts that exist, and finally making the move to get out of a moldy home, came at great physical, emotional, and financial cost. We are nearly back to square one in terms of finances, and now living far from our support network of friends and family. We’ve finally been able to get SSI but it is a very small monthly amount and we want to get caregiver paid hours. If this happens we will hopefully no longer need to fundraise, but that goal is still a long way off. Right now, especially with the challenges of winter upon us, we are still fighting for survival on a daily basis. But the changes in Walker’s conditions since leaving home have given us hope and direction. Hopefully one day patients won't have to go to the ends of the Earth, endure so much pain and suffering, and empty their savings/go into debt to recover, but this is the world we are living in now and the reality we are dealing with. Soon, we hope to be back on our feet, supporting ourselves fully, living sustainably and enjoying life instead of fighting for survival on a daily basis. Right now we are struggling but we know that there is a light at the end of the tunnel. We appreciate everyone's continued support and are grateful for each and every contribution ❤️
Links to studies from Walker:
"Nanoparticle decoration impacts airborne fungal pathobiology"
Lecture on MCAS which includes info on mold by a leading physician/researcher
Screenshot from same video on mycotoxins
"The effects of mycotoxins and selenium deficiency on tissue-engineered cartilage."
"Mold inhalation causes innate immune activation, neural, cognitive and emotional dysfunction"
Organisator
Samantha Storz
Organisator
Lyndonville, VT