My name is Michelle Episcopo and I am 34 years old. I was diagnosed with Huntington’s Disease about 3 years ago. Huntington’s is a terminal degenerative neurological disease. I ended up being medically discharged from the military where I spent 14 years and am a combat veteran and have spent 2 yrs trying to get on my feet. I lost ALL of my income this month. I am begging and pleading at this point and starting to lose faith. I have always tried to stay positive but I’m pretty much losing hope. I’ve always been a giving, caring, compassionate person. I’m losing my house, my car and maybe my support dog. I can’t even afford dog food. I can’t afford food, my vitamins and medications that are critical to my health. I can’t even put gas in the car to go to the gym. I currently live in a volatile situation at the house and was getting ready to move in with my sister but this is no longer an option. I rarely ask for help ever but I am about to lose the few things I own .I am not asking for a specific amount, ANY donation would be more appreciated than you know. I can even provide documentation to prove my situation. GOD BLESS

EMAIL: michelle.episcopo@yahoo.com

PHONE: 714-348-1830

 

Family History:

My mother, aunt, and maternal grandfather all died from Huntington’s disease. It is genetic and there is a 50/50 chance of inheriting the disease. My mother began exhibiting symptoms in her 20’s including cognitive problems, trouble driving, violent outbursts and sexual inappropriate behavior. By the time she was 36 she began showing physical signs such as slurred speech, trouble writing, and chorea (uncontrollable movements). At this time I thought she was on drugs or just had severe mental problems. She attempted suicide and was in a coma. Suicide is a common occurrence with Huntington’s. When she was 39 she was admitted to a nursing home where she died Dec 2012. She spent 18 years there. I knew her father had been in a nursing home because she had talked about it when I was a little girl but I didn’t know she had Huntington’s until I was about 26. I never knew why she was in a nursing home until later.

 

Story:

When I found out my mother had Huntington’s I was stationed in Charleston, SC. I decided I wanted to get stationed in Hawaii to try and find her. Because of HIPPA laws it was impossible to track her down. I also had a conversation with my doctor about whether I would be discharged if I got tested and it was positive. He said yes so I decided that I was not going to get tested until I retired from the service. Little did I know I was already showing symptoms myself. You usually follow in the parents footsteps. But I never thought twice about it. 2 years passed and I got the opportunity to go overseas. At this point I was beginning to get overwhelmed at work and have memory problems. I went to the Middle East and right away my crew noticed strange symptoms (extreme fidgeting, restlessness, slow to react, trouble learning). When I got stationed in Hawaii I started the search for my mom but my own problems were quickly getting worse. So much so I kept getting pulled aside from my supervisors telling me I just didn’t seem like I was getting it. This was hard for me to hear because at one point in time I was sailor of the quarter and sailor of the year and praised for my leadership and now it was almost impossible to focus on just a single task. I was extremely defensive. So I decided to get tested and it came back positive. I was medically discharged at 10 percent (not retired) with a progressive terminal illness. Basically after almost 15 years of service and two tours overseas I was kicked out. For some reason in the past year and a half (since May 14th 2012) I have had it in my head that I was going to work and go to school. I have finally had to admit to myself that I need help which is so hard because I was so independent. I was always the one that took care of everyone else. I have tried to work and go to school; or just work or school. I dropped school twice and have not worked more than a total of 2 months because I get overwhelmed to the point where I make myself very sick. Stress is the worst thing for me because I can’t process things the way a normal brain does. I am going to school at University of Phoenix (the nurse said I need to keep my brain as active as I can) because it is one class a week and I can do the homework in small increments. I was denied social security twice; I filed my VA claim two years ago and still have not been seen to be assessed. I was discharged because I couldn’t do my job anymore with no support. I have tried to work out of pride. I filed another claim for caregiver services through the VA. My friend moved in with me to help around the house because I am having problems remembering (I forget that I’m cooking), I'm starting to have trouble driving so she drives me around for the most part. I have trouble finding words. I have found that diet, exercise and vitamins relieve my symptoms but unfortunately I can’t afford any of those things. I am 34 now and unsure of what is going to happen and I am sad because I never thought I would be in this situation. I thought that if I have HD and I’ll get support or I am a disabled vet or I’m a combat vet so there will be something for me right? It is very hard when you are single as well. I don’t have support and there is no other household income to help me. But because HD is not well know I will be doing a fundraiser with my friends to raise awareness.

 

Financial:

My financial struggle is the cause of most of my stress lately. I have no significant other so there’s no other income. I am 5 months behind on my mortgage, 2 months behind on my car, credit card payment, gym payment, termite bond, HOA fees. I have had to borrow money numerous times to pay for bills, rent, gas, and food. My friends pay for me to get out of the house so I can socialize which is extremely important as well. The biggest thing for HD patients is exercise, vitamins, socialization. I have no money to eat healthy and pay for key vitamins I need for preventive purposes. I have had to cancel numerous doctors’ appointments because my roommate and I don’t even have money to put in my car (she uses my car and drives me and has pretty much taken the caretaker role). I haven’t been able to meet with my primary care physician yet because I had not gas to get to the appointment so I haven’t been able to set up appointments for the neurologist. At the VA hospital if you cancel an appointment it takes approx. two months to get in. So by next month when I have my appoint it will have been four months; then maybe another two months after that for the neurologist. But I am just very lucky and blessed and thankful I do actually have some sort of medical care.