Malene's Dystonia Treatment Fund
Donation protected
Hello Friends,
I'm Malene. I'm 28 and live in Chicago. At the beginning of this year I started taking medication to regulate my mood. In January I noticed that my hands became shaky in the morning. I told my doctor and he suggested I cut the dosage in half and take it with food.
As I was starting to feel better I made changes to improve my life. I went to the gym three times a week, I ate healthier, and I stopped drinking. I found a great job and I was doing okay.
In early May I began having trouble sleeping. I couldn't sit comfortably in a chair. My back hurt a lot and I was dropping things.
By June the back pain was constant. I developed a tremor in my neck and the right side of my body would just give out while I was walking and I would fall. My spine began curving backward and I had to stop working out. I went to the emergency room and after six hours found out I had Dystonia caused by my medication.
Dystonia is a neurological disorder that effects movement and involuntary muscle contractions. I have Secondary Cervical Dystonia. That means that essentially my symptoms are the result of damage to the brain caused by medication. My most serious symptoms are in my neck. Basically it looks like I'm vehemently disagreeing all the time because my head shakes back and forth. On really bad days the muscles in my neck just shove my head to my right shoulder. If I am anxious or overheated I faint.
I was given new medication, but it didn't work. My doctor referred me to a Neurologist and by the time I made it there, my body was in such bad shape that I was admitted to the hospital for a week so they could sedate me and hopefully slow down all the discomfort. After 21 hours of sedation a tremor woke me up in the ICU.
In September I had my first round of botox injections and by October the tremor in my neck was gone. I still need more botox as my spine is misaligned and so is my hip. As of today the tremor in my neck is slowly returning and my back is still curving the wrong way. I'm in constant pain. I sleep about three hours a night. I'm also running out of resources.
Due to the stress of managing my condition I don't really have much of a life. I still continue to work because I need the insurance. I have tried on a few occaissions to go outside, but sometimes people are horrible and assume I'm mentally challenged (not that there is anything wrong with that) or on drugs. So when I do venture into the world I go at night and with a friend. I usually can't stay long because of the pain.
Before the end of this year I will receive another botox injection. The amount of botox required costs about $3000.00 after the insurance. My Neurosurgeon would like me to have DBS surgery early next year. Deep Brain Stimulation is a procedure in which the doctor uses images of my brain to insert two electrodes into the lower portion of my brain from the top. I have to be awake the whole time because of risk to the portion of my brain that controls speech and vision. The procedure takes about 8 hours. A week later batteries are implanted in my chest. Then two weeks later, once a week, for a month I would return so we can set the voltage in the batteries to stimulate my basal ganglia and control my tremors.
We haven't set a date for the surgery, but in light of the amount of botox it would take to control this, we are sure it is our last option. The surgery costs more than college did and is only covered at about 45% by my insurance. While it would be great to raise that much, I am really only looking to end the year with all of my current medical bills paid off.
I have a hard time getting around because of my curved spine. I have a hard time making it to the grocery store and to do my laundry. My anxiety and my mood in general fluctuate based on how much sleep I can get and how much pain I'm in. I am seeking your support because I'm doing my best, but I can't do it alone.
I sincerely hope you can help me save my life. If untreated most people with Dystonia become homebound and isolated. My Doctor thinks I've been quite the trooper these past 6 months. Depsite my condition I don't consider myself disabled yet. I think I can beat this and with your help it is a sure thing.
I'm Malene. I'm 28 and live in Chicago. At the beginning of this year I started taking medication to regulate my mood. In January I noticed that my hands became shaky in the morning. I told my doctor and he suggested I cut the dosage in half and take it with food.
As I was starting to feel better I made changes to improve my life. I went to the gym three times a week, I ate healthier, and I stopped drinking. I found a great job and I was doing okay.
In early May I began having trouble sleeping. I couldn't sit comfortably in a chair. My back hurt a lot and I was dropping things.
By June the back pain was constant. I developed a tremor in my neck and the right side of my body would just give out while I was walking and I would fall. My spine began curving backward and I had to stop working out. I went to the emergency room and after six hours found out I had Dystonia caused by my medication.
Dystonia is a neurological disorder that effects movement and involuntary muscle contractions. I have Secondary Cervical Dystonia. That means that essentially my symptoms are the result of damage to the brain caused by medication. My most serious symptoms are in my neck. Basically it looks like I'm vehemently disagreeing all the time because my head shakes back and forth. On really bad days the muscles in my neck just shove my head to my right shoulder. If I am anxious or overheated I faint.
I was given new medication, but it didn't work. My doctor referred me to a Neurologist and by the time I made it there, my body was in such bad shape that I was admitted to the hospital for a week so they could sedate me and hopefully slow down all the discomfort. After 21 hours of sedation a tremor woke me up in the ICU.
In September I had my first round of botox injections and by October the tremor in my neck was gone. I still need more botox as my spine is misaligned and so is my hip. As of today the tremor in my neck is slowly returning and my back is still curving the wrong way. I'm in constant pain. I sleep about three hours a night. I'm also running out of resources.
Due to the stress of managing my condition I don't really have much of a life. I still continue to work because I need the insurance. I have tried on a few occaissions to go outside, but sometimes people are horrible and assume I'm mentally challenged (not that there is anything wrong with that) or on drugs. So when I do venture into the world I go at night and with a friend. I usually can't stay long because of the pain.
Before the end of this year I will receive another botox injection. The amount of botox required costs about $3000.00 after the insurance. My Neurosurgeon would like me to have DBS surgery early next year. Deep Brain Stimulation is a procedure in which the doctor uses images of my brain to insert two electrodes into the lower portion of my brain from the top. I have to be awake the whole time because of risk to the portion of my brain that controls speech and vision. The procedure takes about 8 hours. A week later batteries are implanted in my chest. Then two weeks later, once a week, for a month I would return so we can set the voltage in the batteries to stimulate my basal ganglia and control my tremors.
We haven't set a date for the surgery, but in light of the amount of botox it would take to control this, we are sure it is our last option. The surgery costs more than college did and is only covered at about 45% by my insurance. While it would be great to raise that much, I am really only looking to end the year with all of my current medical bills paid off.
I have a hard time getting around because of my curved spine. I have a hard time making it to the grocery store and to do my laundry. My anxiety and my mood in general fluctuate based on how much sleep I can get and how much pain I'm in. I am seeking your support because I'm doing my best, but I can't do it alone.
I sincerely hope you can help me save my life. If untreated most people with Dystonia become homebound and isolated. My Doctor thinks I've been quite the trooper these past 6 months. Depsite my condition I don't consider myself disabled yet. I think I can beat this and with your help it is a sure thing.
Organizer
Lanie Hughes
Organizer
Chicago, IL
