Beth's Bus to Health
Donation protected
I have been severely ill for the past eight years, with an evolving illness that has kept me bedridden and bedroom bound. I have a strong feeling that I know what I need to do to heal and am asking for your help to raise the funds to get me there. With adequate support, I know that my body has the capacity to heal completely so that I can return to a life of teaching, art making and spreading love far and wide.
(Cultivating Hope by Elizabeth D'Angelo)
Not long ago, I spent a year almost completely paralyzed in a dark room, unable to even have the blinds open because of severe sensory sensitivity. Through trial and error, I started to improve by figuring out ways to self adjust my neck.
In February, after a year of researching, learning and planning, I began a therapy involving the use of an intra-oral appliance called a "Rectifier", also known as a "modified Gelb." It is basically a mouth guard for grinding with dental resin applied to it to create a lift, known as a "molar lever." Since being forced to wear an inflatable neck collar for about a year when I was having hourly seizures, my jaw had started to be in a more central position and this had left me with pretty severe malocclusion. Unbeknownst to me, malocclusion can cause some serious and devastating effects, including atlas (the top vertebrae) instability, which has caused me paralysis, numbness, weakness, tingling, dystonia, tremors, choking, gagging, severe sensory sensitivity, severe eye, head and neck pain, etc.
The first day of wearing the rectifier completely solved my need for the neck collar. I went from having to wear it whenever sitting up for even a moment, to never! What a sweet relief. Also, the rectifier made it possible for me to stand with out feeling like my head would fall off. I started being able to stand for short intervals, and stood for the first time in several years in front of the bathroom mirror and gazed at myself. "Wow! This is what I look like!"
Soon thereafter, I began using my walker for the very first time, first walking down the hall and then soon, making a loop from the living room, through the kitchen and dining room and back! Over the course of the next two months, I got so far as to walk past my mailbox and half way down the block of my street. This is the furthest I have been in almost five years! And while that particular day I went a bit too far and crashed afterwards, I did it and I know that I will be able to do it again. That same day I had slowly worked my way up to 15 laps through the house in addition to that walk down the street. I have since scaled back, but I am still far improved from I where I was before I put this piece of plastic in my mouth.
Now, I am supposed to be registering pits with the resin onto the splint every few weeks as my body shifts. I haven't made a new registration in months because I can feel that the next registration that my body wants me to make is going to have me swing my jaw way over to the right. Since my jaw has been sitting to the left for the last several decades, my teeth and my maxilla (my upper jaw) are all slanted to the left. So, moving my jaw to the right makes my teeth look crazy! Like they do not fit together AT ALL. I also have been concerned about chewing because I am chewing without the splint in. This will mean that I will be chewing sideways rather severely. As my jaw moves, my teeth are hitting in strange places causing some gaps and shifting in the front as well as pain. Two of my teeth move when I chew, because they hit, and I have a bruised area at the gum line above those teeth.
However, the particular way that my atlas subluxes feels to be a directly parallel relationship to how my jaw needs to shift in order for it to be perfectly aligned and probably for the condylar disk to move back into position. I have learned that jaw positioning is closely linked to alignment of the spine. Crooked, mis-aligned jaw = crooked mis-aligned spine. I've also learned that a lack of dental height can go so far as to be the cause of scoliosis. I know this as fact, as I watch people on Facebook heal their scoliosis by treating their mouths. Crazy!
My next steps:
So, I am going to have a jaw that is shifted over to the right, teeth that don't fit together AT ALL and look crazy and hopefully a much more stable neck. In addition to the above mentioned symptoms, I also get weak and flu feelings when my neck is out. Sometimes I feel like I have had a typical PEM crash from Myalgic Encephalomylitis and I will have someone help me to adjust my neck and the feeling will vanish. So, I know that this pursuit is critical for me.
I have discovered that there is a school in Nevada called LVI, where they learn advanced techniques to fix cases of TMJD and malocclusion. Apparently there is a dentist about an hour away from me that has taken the advanced courses and has taught one of the classes. I am hoping to go to see him. And if not him, one of the other dentists that are all located about an hour away in other directions.
Now, this will not be a simple task. I have not felt well enough to leave my house in a car at all for about five years. The reasons for this varies to include severe long lasting PEM (post exersional malaise) from looking at motion and from being moved, as well as severe cranial and cervical instability where motion is actually dangerous to me. I am still unstable to the point where accidentally hitting the bed when walking by it can throw my neck out and send me into convulsions.
So, being transported in a car is pretty much not a good idea. The only way that I can envision this goal becoming a reality with my head and neck the way that they are, is to go by mobile home. Additionally, this mobile home needs to be set up in very specific ways, so that if my neck goes out during travel I have the means to fix it. If I get to the dentists office with my neck out or if my neck goes out during treatment, I will not be able to move, talk, or function well enough to do what needs to be done. Or worse, I will go into convulsions while at the office and no one will know what to do with me. These do not resolve until I have someone do some specific techniques that I have figured out in order to get my head and neck back aligned.
So, I want to buy a shuttle bus (or an RV) and convert it with all of the tools that I need to be able to travel as safely as possible. And in addition to the neck/mouth stuff, I still have severe Myalgic Encephalomylitis . Rushing is risky and doing too much is risky, so my goal is to take one or two of my caregivers for a week in the converted bus to Jacksonville, instead of trying to do the trip in a day, there and back.
I expect that I will be able to buy and convert a shuttle bus for around $13,000 total, maybe less, if I can find ways to do it simply. I also expect that treating my mouth through a dentist will cost about $20-$30 grand. I am fundraising in this pursuit. I also hope to sell artwork in support of this.
(My website to view my artwork is here: www.elizabethdangelo.com and my Redbubble shop where you can order reproductions, is here: www.redbubble.com/people/bethdangelo. )
Additionally, the converted shuttle bus (or RV) has the added bonus that it will allow me a place to live while the very serious mold problem in our house is being dealt with. It is fairly common knowledge that there is often a link between Myalgic Encephalomyelitis and mold in people's homes, so that also must be remedied for me to fully regain my health. And then, if it is determined that I need to take more serious steps to move further out of mold, once my head/jaw/neck are stabilized, I will have the means to do it safely in my mobile home.
Finally, once I'm a well person, I will use this converted bus or RV to fulfill my dreams of travel, teaching and public speaking around the country!
I am guessing that some of you will have questions for me regarding the above. Here are some resources to help you to fill in the gaps of knowledge that you might have:
On the Rectifier:
www.starceta.com
(I am doing the older version. They now sell a version called a Plug n Play where no resin is used.)
On causes and treatment for dystonia:
www.biomechanicdaystonia.net
https://lidiayavichingles.wordpress.com/2015/03/25/tridimensional-orthodontics-in-the-second-phase-of-tmj-pathologies/
In closing, I have worked really hard to piece together some of these tools that I feel are necessary for me to regain my health. I am thankful that the above information found me and I am hopeful that utilizing it will bring me back completely to my health.
With my greatest love and gratitude for your support,
Elizabeth D'Angelo
(Cultivating Hope by Elizabeth D'Angelo)Not long ago, I spent a year almost completely paralyzed in a dark room, unable to even have the blinds open because of severe sensory sensitivity. Through trial and error, I started to improve by figuring out ways to self adjust my neck.
In February, after a year of researching, learning and planning, I began a therapy involving the use of an intra-oral appliance called a "Rectifier", also known as a "modified Gelb." It is basically a mouth guard for grinding with dental resin applied to it to create a lift, known as a "molar lever." Since being forced to wear an inflatable neck collar for about a year when I was having hourly seizures, my jaw had started to be in a more central position and this had left me with pretty severe malocclusion. Unbeknownst to me, malocclusion can cause some serious and devastating effects, including atlas (the top vertebrae) instability, which has caused me paralysis, numbness, weakness, tingling, dystonia, tremors, choking, gagging, severe sensory sensitivity, severe eye, head and neck pain, etc.
The first day of wearing the rectifier completely solved my need for the neck collar. I went from having to wear it whenever sitting up for even a moment, to never! What a sweet relief. Also, the rectifier made it possible for me to stand with out feeling like my head would fall off. I started being able to stand for short intervals, and stood for the first time in several years in front of the bathroom mirror and gazed at myself. "Wow! This is what I look like!"
Soon thereafter, I began using my walker for the very first time, first walking down the hall and then soon, making a loop from the living room, through the kitchen and dining room and back! Over the course of the next two months, I got so far as to walk past my mailbox and half way down the block of my street. This is the furthest I have been in almost five years! And while that particular day I went a bit too far and crashed afterwards, I did it and I know that I will be able to do it again. That same day I had slowly worked my way up to 15 laps through the house in addition to that walk down the street. I have since scaled back, but I am still far improved from I where I was before I put this piece of plastic in my mouth.
Now, I am supposed to be registering pits with the resin onto the splint every few weeks as my body shifts. I haven't made a new registration in months because I can feel that the next registration that my body wants me to make is going to have me swing my jaw way over to the right. Since my jaw has been sitting to the left for the last several decades, my teeth and my maxilla (my upper jaw) are all slanted to the left. So, moving my jaw to the right makes my teeth look crazy! Like they do not fit together AT ALL. I also have been concerned about chewing because I am chewing without the splint in. This will mean that I will be chewing sideways rather severely. As my jaw moves, my teeth are hitting in strange places causing some gaps and shifting in the front as well as pain. Two of my teeth move when I chew, because they hit, and I have a bruised area at the gum line above those teeth.
However, the particular way that my atlas subluxes feels to be a directly parallel relationship to how my jaw needs to shift in order for it to be perfectly aligned and probably for the condylar disk to move back into position. I have learned that jaw positioning is closely linked to alignment of the spine. Crooked, mis-aligned jaw = crooked mis-aligned spine. I've also learned that a lack of dental height can go so far as to be the cause of scoliosis. I know this as fact, as I watch people on Facebook heal their scoliosis by treating their mouths. Crazy!
My next steps:
So, I am going to have a jaw that is shifted over to the right, teeth that don't fit together AT ALL and look crazy and hopefully a much more stable neck. In addition to the above mentioned symptoms, I also get weak and flu feelings when my neck is out. Sometimes I feel like I have had a typical PEM crash from Myalgic Encephalomylitis and I will have someone help me to adjust my neck and the feeling will vanish. So, I know that this pursuit is critical for me.
I have discovered that there is a school in Nevada called LVI, where they learn advanced techniques to fix cases of TMJD and malocclusion. Apparently there is a dentist about an hour away from me that has taken the advanced courses and has taught one of the classes. I am hoping to go to see him. And if not him, one of the other dentists that are all located about an hour away in other directions.
Now, this will not be a simple task. I have not felt well enough to leave my house in a car at all for about five years. The reasons for this varies to include severe long lasting PEM (post exersional malaise) from looking at motion and from being moved, as well as severe cranial and cervical instability where motion is actually dangerous to me. I am still unstable to the point where accidentally hitting the bed when walking by it can throw my neck out and send me into convulsions.
So, being transported in a car is pretty much not a good idea. The only way that I can envision this goal becoming a reality with my head and neck the way that they are, is to go by mobile home. Additionally, this mobile home needs to be set up in very specific ways, so that if my neck goes out during travel I have the means to fix it. If I get to the dentists office with my neck out or if my neck goes out during treatment, I will not be able to move, talk, or function well enough to do what needs to be done. Or worse, I will go into convulsions while at the office and no one will know what to do with me. These do not resolve until I have someone do some specific techniques that I have figured out in order to get my head and neck back aligned.
So, I want to buy a shuttle bus (or an RV) and convert it with all of the tools that I need to be able to travel as safely as possible. And in addition to the neck/mouth stuff, I still have severe Myalgic Encephalomylitis . Rushing is risky and doing too much is risky, so my goal is to take one or two of my caregivers for a week in the converted bus to Jacksonville, instead of trying to do the trip in a day, there and back.
I expect that I will be able to buy and convert a shuttle bus for around $13,000 total, maybe less, if I can find ways to do it simply. I also expect that treating my mouth through a dentist will cost about $20-$30 grand. I am fundraising in this pursuit. I also hope to sell artwork in support of this.
(My website to view my artwork is here: www.elizabethdangelo.com and my Redbubble shop where you can order reproductions, is here: www.redbubble.com/people/bethdangelo. )
Additionally, the converted shuttle bus (or RV) has the added bonus that it will allow me a place to live while the very serious mold problem in our house is being dealt with. It is fairly common knowledge that there is often a link between Myalgic Encephalomyelitis and mold in people's homes, so that also must be remedied for me to fully regain my health. And then, if it is determined that I need to take more serious steps to move further out of mold, once my head/jaw/neck are stabilized, I will have the means to do it safely in my mobile home.
Finally, once I'm a well person, I will use this converted bus or RV to fulfill my dreams of travel, teaching and public speaking around the country!
I am guessing that some of you will have questions for me regarding the above. Here are some resources to help you to fill in the gaps of knowledge that you might have:
On the Rectifier:
www.starceta.com
(I am doing the older version. They now sell a version called a Plug n Play where no resin is used.)
On causes and treatment for dystonia:
www.biomechanicdaystonia.net
https://lidiayavichingles.wordpress.com/2015/03/25/tridimensional-orthodontics-in-the-second-phase-of-tmj-pathologies/
In closing, I have worked really hard to piece together some of these tools that I feel are necessary for me to regain my health. I am thankful that the above information found me and I am hopeful that utilizing it will bring me back completely to my health.
With my greatest love and gratitude for your support,
Elizabeth D'Angelo
Organizer
Elizabeth D'Angelo
Organizer
Ormond Beach, FL