ALS, Huntington's Disease, and alcohol abuse...All In The Family

I was born into an alcoholic abusive environment. My mom was the only girl in her family with 5 brothers in Indiana and her mom, my grandmother, had Huntington's Disease and her father, my grandfather, was and abusive alcoholic. So, mom met and married someone just like her dad, had the four of us kids. After he came home in an alcoholic rage, my mom sent my sister with me, a baby at the time, to hide in a closet. My two brothers, 6 and 5 at the time, went to defend our mother and got injured in the process.

Thank God, the Catholic church sent a nun to assist my mom while recuperating in the hospital, with a plan to get away.

She was a single mother now with 4 children to support and became one of the first 3 women on the police force in South Bend, IN. I was 4 when she met out step-dad, and they married when I was 7. He was going to be a career Navy man and we then moved every two or three years while growing up.

When I graduated from high school, my siblings were all over the US, and I entered the USN-R. I became a Hospital Corpsman and was mobilized for DSDS....I also had served time with the Marines in Camp Pendelton, CA.

I always knew I wanted to become a nurse in order to help people. Eventually, I earned my BSN as a registered nurse and worked in the neuro-intensive care unit, coronary intensive care unit, OB-GYN clinic, and took an interest in research. I became the Director for Clinical research in the Department of OB-GYN in Minneapolis, MN, and it was there I met my now ex-husband who was a surgery resident there.

I had learned more about HD and ALS as BOTH ran in my family and I was watching from a very early age the devastating effects on the lives of close family members. Eventually I also learned that I could get a gene test and, since I was considering marriage, I got tested in order to allow my ex to decide whether or not to marry. He insisted that no matter the outcome, we would be in this together. 

Western medicine told me that because my test for HD was positive, I should just "wait for symptoms to start and join a support group". That advise NEVER sat well with me...but that's what I did. I put my trust into these physicians who were supposed to have all of the answers...right? And so, after living with my husband, I started to develop depression...He, later I came to learn, is an un-diagnosed narcissist personality disorder to a T. He is high functioning in other aspects...being a general surgeon, and shows every one of the traits of a narcissist. To sum that up, I always felt like I was never good enough and was taking a harsh toll on my self esteem. Especially when he would spend hours on the computer playing games and looking at porno sites...(don't get me started about how I feel about those!) 

When we decided to have children, we went through IVF and PGD, pre-implantation genetic diagnosis of embryos. Of the 16 we created, 8 were positive with HD gene so we implanted 3 and I had a twin pregnancy. I developed preecplamsia and had they induced labor at 33 1/2 weeks. Only half of my epidural was working and resulted in a very traumatic labor and delivery where forceps were used. Emily was born and wasn't crying. They whisked her away to the NICU to work on her. She was on life support. Just past midnight, Olivia was born, cried and she was place on my chest and permitted to nurse her. Meanwhile I had been sick and vomiting and had spiked a fever. They worked on Emily for 5 hours before we decided to take her off of support. While I was holding her and crying, my ex said that "this isn't doing us any good, let's go see Olivia." and my heart broke again, not feeling like I was permitted time to just be with her.

I nursed Olivia for 13 moths and we discussed having another child. My cycle hadn't returned and found out that I had developed Asherman's syndrome after the D&C that was necessary for post-par tum hemorrhaging. After 3 surgeries failed to try to correct the problem with my uterus, we then decided to go through a gestational carrier. This was a beautiful experience. We created 5 new embryos and 4 out of the 5 were positive for HD....we had one healthy and 2 that looked iffy after coming out of cryo-preservation. Well, Leo really wanted to be with us apparently!

I got out of the service after 14 years and stopped nursing to become a full time stay at home mom. Love nothing more in the world than that time with our amazing kids. However, living with my ex was very difficult. I continued counselling and took classes at ECFC in Northfield MN. Love the people there and developed life long friendships. And, because I had grown up in the military, my family was so spread out and not available to help out. I continued therapy for advice and feedback because I wanted to raise happy, well-adjusted kids. My ex always made me feel like what I was doing was not enough or good enough and my wisdom as a mother was always under unfounded scrutiny with their dad. It was strange because all of the other feedback from others was that I was doing an awesome job.

Finally, after discovering some very disturbing porn on his computer, I insisted that we either divorce or move south...(should have divorced way back then). We ended up moving to Georgia (my family did not want us to move around them because they did not like my ex...didn't share that with him at the time.

So, in Georgia, I continued counselling and psyc care and actually re-instated my nursing liscense to go to work as an ER and ICU nurse. I underwent some medication adjusting and started to feel unsafe practicing nursing. I let my husband and Doctors know because I did not want to hurt any patient as a result of a possible error. I had also been driving (alone) to Savannah (alone) to meet with specialists. I spent hours undergoing cognitive testing and the results were awful. And to learn this by myself, I started feeling desperate and alone. My ex read the reports and offered no words of comfort. So he decided to move our family back north to where he said his family would be supportive to me and the kids. (I am not a fan of the cold...thus wanting to move South.) The four years that followed were the very worst in my life.
The medications were making me feel awful and found myself in tears almost everyday. One day his sister saw me in this state and yelled at me to pull myself together and that I mustn't do this in front of the kids!!!! (how's that for support???) I honestly felt like I just wanted to die. my ex mad the comment that he wondered if it was possible if the medications were making me worse...I heard that and followed up on it with my doctors (alone) . Meanwhile I was still taking outstanding care of the kids and would explain on my bad days that this had nothing to do with them and they understood and were a great comfort to me. (there dad and his family were NOT) Meanwhile the relationship with their dad worsened. I eventually asked him to go to counselling and to please moved down to the basement. 

One night he started yelling at me and I took extra of the medicine I was given for anxiety and mixed it with alcohol. I ended up in the hospital. I was told I had a knife and was trying to cut my wrists. I was unaware of what I was doing. Instead of calling 911 (to save embarrassment?) he called his brother and my nephew to help carry me out of the house. My ex later told me his brother said Man I don't know why you put up with this shit. (how's that supportive) His family is all he has. No friends outside of the family. They feed his behavior and make him even worse.

I did everything I was asked to do in terms of help and recovery. In March of 2014, I had asked my ex if he wanted to do any thing special for Emily's memorial. Every year I would get a mylar balloon and we would send it to heaven as a family and wish her a Happy Birthday. That day I spent in Madison with a friend, consulting her about the reset program with USANA. We had lunch and did some shopping. I bought a couple of new pants for my ex, birthday gift for Olivia, and stopped and picked up a balloon for Emily. I had communicated with my ex and he was going to pick up the kids who had been picked up from school by the aunt and uncle, and would meet me at home. Leo had gymnastics that nigh and needed to come home and change. So, I was there waiting...previously my ex told me that under no uncertain terms were the children to miss any activities that he was paying for. I called him at 6 and asked when they were going to be there...he said, well, his sister was just putting pizza in and the kids really wanted pizza now and they would just stay there....REALLY???

My heart broke again...I asked him did he forget what day it was??? and Leo has gymnastics....That was the night I informed him I would be filing for divorce. 

He got to his attorney before me leaving me in the respondent position...I wanted this...I needed this...

We divorced April of last year. Because I wanted to move to SC to finally be close to my family and because my attorney never called the wittnesses I needed for defense...THEY GAVE HIM SOLE CUSTODY AND PLACEMENT!!!!! Because I left the courtroom I could not believe how they were projecting me to be. I was Never ever ever a harm or danger to the kids...I have a new attorney in madison that is working on my appeal....When learned of the new arrangement, I screamed like a was worse than having lost that sweet baby 14 years ago...she was dead...these kids are alive and i grieve every day I am without them....the current wording by judge bates gave this monster that used my medical records against me and that act of love getting tested against me....I had questioned the existence of the Devil in the more...alive and well and destroyed my family.

I did wean off of all of those medications...after I asked him to move out, I was feeling better and better. Came up with a weaning plan with my DR., and started taking Usana supplements. I feel amazing now despite the harshness of my current situation and reality.

I don't want just 50 50...I want and deserve 70 30...children of military families should be taken into consideration with the current law that states the children can only reside no more than 50 miles. The other law that needs to be thrown out...what happens in mediation is inadmissible in the courtroom...the male attorney said to me, "with an ego like that, I doubt you'll get anything you ex had thrown my plan a for moving to south Carolina, and my plan b for staying in Janesville (I spent hours preparing to negotiate...) he threw it at me and stormed out like a 3 year old and wouldn't even begin to listen....



‹ Back to Story Forum