Electric Wheelchair For Syanne
Donation protected
Joey: Hello World!
Over the past several months we have been fighting with our insurance company for an electric wheelchair. The process is so convoluted and confusing that we are seeking alternative ways to get Syanne what all of us take for granted. We call them legs... but for Syanne it will be a set of wheels.
The wheelchair we are looking at is lightweight and folds up into our car. This will prevent us from having to purchase a new vehicle or modify our current vehicle just to transport a chair.
Help us out if you can.
Syanne:
Hey everyone!
I wanted to make sure I got to speak to you all as well.
Most of you know me already but for those of you who aren't familiar with my situation- I just wanted to tell you a little bit about my conditions.
I went throughout my life misdiagnosed with mental illness when really what I had were neurological conditions (along with several other health problems). 50% of people with my conditions have been misdiagnosed with a mental health condition- so it happens often.
I go to Johns Hopkins now which is one of the best hospitals in the world and they have been absolutely incredible. After complications from my endometriosis surgery, my underlying conditions came to light which finally gave me some diagnoses.
I have dysautonomia, specifically POTS & IST. My doctors have ordered an electric wheelchair as my condition has gotten to the point where a manual wheelchair is no longer effective for me--or for US as a married couple.
It is a lot of work for Joey to constantly push me in the wheelchair, especially on walks with TWO dogs. Pushing me and holding two dogs on a leash is not easy.
You would think it wouldn't be difficult going through the process of getting an electric wheelchair through the insurance company with a doctor's order but it has brought us many tears as there are several hoops to go through. Even though I was approved (including approval from a physical therapy evaluation) we are still meeting financial challenges that have brought us to this.
I have included a link to a video that I made that talks about my conditions.
Syanne Dysautonomia Awareness Video
Dysautonomia is a condition in which the autonomic nervous system (ANS) does not work properly. This may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Dysautonomia has many causes and there are several types. Dysautonomia affects my ability to walk in similar ways as multiple sclerosis. Instead of it affecting my central nervous system (though I do have a lesion there), it affects my autonomic nervous system. I have a home nurse who cares for my port and I do home infusions twice a week. Since the ANS controls respiration I also have issues with hypoxia (low oxygen levels) and use home oxygen as needed. Dysautonomia is a spectrum so many people are mildly affected while some (like me) have a severe form. There is no cure.
Symptoms can wax and wane, and can also be unremitting.
Along with dysautonomia I also have Osteoporosis, TMJ, Osteoarthritis, Adrenal Insufficiency (which can be life-threatening), Severe Endometriosis, Pituitary Tumor (Prolactinoma), An unspecified brain lesion, history of Jacksonian seizures, and am also being evaluated for Ehlers-Danlos Syndrome Type 3 (a rare genetic disorder).
Getting around in my manual chair is extremely difficult because of my heart rate difficulties. My doctor stated I can only tolerate 3 minutes of exercise at best..while seated. I can't even move in my manual wheelchair for more than 3 or 4 feet before I start to blackout from my illness. This limits my freedom majorly.
Being outside is difficult as well because of the terrain. In my manual wheelchair, I cannot go through grass, gravel, or any bumpy surfaces.
When Joey and I would go grocery shopping he would have to figure out how to push me AND the grocery cart because I could not physically move in my chair for very long. I also tend to smash my hand in doorways because of the width of my chair.
Our goal is to have the wheelchair ordered within a couple of weeks so that we can improve my mobility issues quickly, especially with the warmer weather. Having an electric wheelchair would enable us to be able to do more things together.
We appreciate all of you who have been so willing to donate and thank you from the bottom of our hearts. This is going to improve my quality of life and also make it easier for my husband, who is also my caregiver.
Over the past several months we have been fighting with our insurance company for an electric wheelchair. The process is so convoluted and confusing that we are seeking alternative ways to get Syanne what all of us take for granted. We call them legs... but for Syanne it will be a set of wheels.
The wheelchair we are looking at is lightweight and folds up into our car. This will prevent us from having to purchase a new vehicle or modify our current vehicle just to transport a chair.
Help us out if you can.
Syanne:
Hey everyone!
I wanted to make sure I got to speak to you all as well.
Most of you know me already but for those of you who aren't familiar with my situation- I just wanted to tell you a little bit about my conditions.
I went throughout my life misdiagnosed with mental illness when really what I had were neurological conditions (along with several other health problems). 50% of people with my conditions have been misdiagnosed with a mental health condition- so it happens often.
I go to Johns Hopkins now which is one of the best hospitals in the world and they have been absolutely incredible. After complications from my endometriosis surgery, my underlying conditions came to light which finally gave me some diagnoses.
I have dysautonomia, specifically POTS & IST. My doctors have ordered an electric wheelchair as my condition has gotten to the point where a manual wheelchair is no longer effective for me--or for US as a married couple.
It is a lot of work for Joey to constantly push me in the wheelchair, especially on walks with TWO dogs. Pushing me and holding two dogs on a leash is not easy.
You would think it wouldn't be difficult going through the process of getting an electric wheelchair through the insurance company with a doctor's order but it has brought us many tears as there are several hoops to go through. Even though I was approved (including approval from a physical therapy evaluation) we are still meeting financial challenges that have brought us to this.
I have included a link to a video that I made that talks about my conditions.
Syanne Dysautonomia Awareness Video
Dysautonomia is a condition in which the autonomic nervous system (ANS) does not work properly. This may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Dysautonomia has many causes and there are several types. Dysautonomia affects my ability to walk in similar ways as multiple sclerosis. Instead of it affecting my central nervous system (though I do have a lesion there), it affects my autonomic nervous system. I have a home nurse who cares for my port and I do home infusions twice a week. Since the ANS controls respiration I also have issues with hypoxia (low oxygen levels) and use home oxygen as needed. Dysautonomia is a spectrum so many people are mildly affected while some (like me) have a severe form. There is no cure.
Symptoms can wax and wane, and can also be unremitting.
Along with dysautonomia I also have Osteoporosis, TMJ, Osteoarthritis, Adrenal Insufficiency (which can be life-threatening), Severe Endometriosis, Pituitary Tumor (Prolactinoma), An unspecified brain lesion, history of Jacksonian seizures, and am also being evaluated for Ehlers-Danlos Syndrome Type 3 (a rare genetic disorder).
Getting around in my manual chair is extremely difficult because of my heart rate difficulties. My doctor stated I can only tolerate 3 minutes of exercise at best..while seated. I can't even move in my manual wheelchair for more than 3 or 4 feet before I start to blackout from my illness. This limits my freedom majorly.
Being outside is difficult as well because of the terrain. In my manual wheelchair, I cannot go through grass, gravel, or any bumpy surfaces.
When Joey and I would go grocery shopping he would have to figure out how to push me AND the grocery cart because I could not physically move in my chair for very long. I also tend to smash my hand in doorways because of the width of my chair.
Our goal is to have the wheelchair ordered within a couple of weeks so that we can improve my mobility issues quickly, especially with the warmer weather. Having an electric wheelchair would enable us to be able to do more things together.
We appreciate all of you who have been so willing to donate and thank you from the bottom of our hearts. This is going to improve my quality of life and also make it easier for my husband, who is also my caregiver.
Organizer
Joseph Bloom
Organizer
Kurówka, MD