I was 28 years old, and 3 years into my career as a police officer. I had recieved a phone call that my father, who lived in Salt Lake City had been run over by a drunk driver. I wasn't very close with my dad, my parents were never married and we never lived in the same city.The last time that I had seen him was 5 years earlier(1996). He had been in and out of prison since I was about 13 years old. My father hated the fact that I had chosen law enforcement as a career, and the last conversation I had with him, he wasnt shy about telling me.During that last conversation,he was very angry, constantly moving & twitching, and I thought he was on meth. I was always embarressed and ashamed of him, and I'm sure his influence helped me choose my career path.
When I went to Utah for the funeral, I started to clean out his house, I found many strange things including many letters that were almost illegible, and very odd, and several cases of adult diapers?? Again...I was ashamed..
Approximately 2 months later, I recieved a phone call from my Aunt (Dad's sister) who told me that I needed to call a neurologist in Salt Lake. She seemed very concerned but would not give me any more info. I called the neuro immediately. The doctor told me that I needed to go to her office (in Utah) so she could discuss a disease my father had with me. I thought this was very strange and told her that I would prefer not to drive the 365 miles to Utah to have a conversation about my deceased father's medical condition. She finally agreed to call my personal doctor, who is a friend of mine, and discuss it with him.
My friend then called and told me to come to his office. Upon my arrival he looked very sad and uncomfortable. He told me that my father had suffered from Huntington's disease, and that I had a 50 percent chance of being affected. He told me there was no current treatment or cure, and told me that it is typically a disease that strikes later in life, and whatever I do "Do NOT GET ON THE INTERNET AND RESEARCH IT."I heeded his advice, and went about my life rarely thinking about the disease.
In January of 2007, I had met a wonderful woman, I knew that she was the one, and the next few months were unbelievable!
In March we were out having some drinks, and all of a sudden I started to think about Huntington's I knew I had to tell her my at-risk status, but I again tried to force it to the back of my mind.
The next day, I woke up and felt odd. I think I was depressed. I had never felt like this before. I felt a little off balance, but thought I was probably just coming down with something, and that the feeling would ultimately go away. Over the next week, the feelings got much worse. I was having a lot of trouble concentrating, and I had to take a week off because I was having trouble cognatively functioning.
Then, I made the mistake. I logged onto my computer and googled Huntington's disease. I was horrified, the more I read, the more I stressed. Over the next couple of months, my mind and body went nuts. I was twitching constantly, my hands, arms, shoulders, tongue, legs, back, face, eyelids, feet. Everywhere! It started very mild, and as time progressed they got to be very strong. My left trapesius muscle and forearm hurt constantly. I could feel an electric feeling all over my body especially in my arms and hands. My hands really started to hurt. (I have always been in excellent physical shape, and my hands hurt so bad I couldn't lift weights) I was having difficulty concentrating, and I was becoming forgetful. The off balance feeling was always there.The best way I can describe it is "spacing out."
I called my doctor and explained to him how I was feeling.He told me it sounded like anxiety. (It had been so long since we had talked about Huntington's he forgot I was even at-risk.) I went to his office and I told him that "I was positive I had it." He told me that anxiety can do some very strange things to the human body, but I knew in my heart it was Huntington's. There was no way in my mind that anxiety could do this to me. I broke down and cried in his office.(I had been a police officer for 9 years, and on the SWAT team for the last 4. I have been shot at numerous times, and been involved in many very crazy situations.) I HAVE NEVER BEEN THIS SCARED IN MY LIFE! My doctor told me that he felt that it was time for me to test. I agreed. We scheduled an appointment with a Neuro.
I went to the Nuero's office, and it was one of the worst experiences I have ever had. I educated him about the disease. He ran me through a few tests, made some inappropriate comments like "There isn't a lot you can do. Some people just have bad genes!" After educating him,(he didnt have a clue what Huntington's was) he said he would contact a genetic counselor and have them call me because he "thought that was the protocol, but not to stress out too much about it" because after my motor & nystagmus test he wasn't ready to "put me out to pasture" just yet, and "you never know, I could be hit by a car tomorrow." The guy was a complete social moron and a very incompetent nuero. I never heard from his office or a genetic counselor again, except when he sent the 300.00 bill.
After that experience, I decided I would wait awhile to test. I found this website, and started to take all of the supplements & advice that you all offered. I logged on to this website and read it constantly! (obsessive compulsive disorder...another symptom???)
The symptoms continued, and my body felt like it was kind of jerky. My fingers started to involuntarily twitch and would curl up. The worst time for the twitching was at night. I was having trouble sleeping, and I was having a lot of myclonic jerking movements as I went to sleep. Sometimes, when I would wake up, it would feel like the bed was shaking.
I was a wreck. I got so in tune with my body, I could feel my pulse in all of my fingers, wrist and tongue. I became very restless, and could feel my heart pound in my chest. Huntington's disease consumed my every thought..I KNEW I HAD TO DO SOMETHING!
I started to research C.o.e.'s the closest one to me was Seattle, and I wanted to go somewhere out of town so that I was not recognized. I didnt want anyone else to know my at-risk status. (the only people who knew besides me was My doc, my Aunt, My wonderful girlfriend, and the idiot Neuro.)
I called the c.o.e. in San Diego. I spoke with a girl named Jody, she was amazing! She answered all of the questions I had. She was very comassionate and knowlegeable. After speaking with her for 5 minutes I knew I had found my testing center. I spoke with her for over an hour and explained my situation. The center allowed me to do my pre-screen over the phone so that I only needed to make two, 1500 mile plane trips. We scheduled a date. (August 17th)
On August 17th, I was tested. After my test, I felt an overwhelming feeling of relief. I knew that I was finally going to know my status, and that I could start signing up for the research studies. I felt that I was destined to have this disease, and that my purpose in life was to help with the fight, and to get involved so that the next generation hopefully doesn't have to go through what we have.
The symptoms subsided somewhat, and I tried to get back to my life. On September 3rd Jody called. She told me that my results were in, and that we needed to schedule another apppointment. I tried to get more info, and tried to read her over the phone but I couldn't. The soonest I could get back to San Diego was September 14th. I KNEW I HAD IT! Why would they make me fly 1500 miles just to tell me I was negative. They had told me that they never give results over the phone, but I felt that they wanted me to be there in person so that they could comfort me with the bad news.
On September 14th I woke up with a feeling of acceptance. I knew this was going to be the day that my life would signifigantly change. I had prepared myself for the negative result.
Upon my arrival at the San Diego C.O.E. I saw the doctor who was the only person that knew my results. She walked up to me shook my hand, and asked me to follow her to a room. She didnt even look me in the eye. I knew bad news was forthcoming. We (myself & girlfriend) walked into the meeting room and the doctor, Jody, and the genetic counselor were in there. The doctor looked at me with a stone face and said "I have good news, you don't have it." I was stunned, I had not prepared for a negative result. I had convinced myself that I was positive. I wept. I was overwhelmed by what your mind can do. My cags are 20 and 21.
I have waited almost a month to write this. Since my results, almost all of my symptoms have stopped (still an occasional twitch) I write this to help give hope to all at-riskers, and to thank all of the wonderful people on this websight. You are all my heroes, and do not ever give up hope..Your minds are amazingly powerful, and it has the power to create symptoms, and to heal them.
Huntington's disease has ran its course in my family. It ended with my father. I am no longer ashamed to be his son. I am ashamed that I felt the way about him that I did. He was a good man who was courageously fighting a horrible disease. I do not have the words to express how grateful I am to all of you... Ray, Wil, Dusty, Scott. I could go on all day..I still log onto this website everyday. Even though I am negative, I have been touched by this disease. I will continue to help with the fight. I will answer any questions that the people that are at-risk have.
My advice is this..Do not give up, there is a treatment that is sooo close. We have the power to beat this. We all need to get involved. I have always felt that things happen for a reason, and throughout this whole process I was right about 1 thing...I still know my purpose in life, and that is to help in the fight against this beatable disease.

Bo, thanks for fighting with us, and for inspiring me tonight too.

Thanks for telling us your story. It is much like my son?s story. He, too, knew that he had the disease and even said that testing was a waste of money. He had seen Huntington?s Disease for his entire life and knew the symptoms well. He had them all. Thank God, he, too, tested negative. Maggie

Thanks for sharing your story! Steve and I would like to include your article on the site.

And speaking of wanting to help..... there are no training materials for police officers about this disease. From time to time, a social worker or family member may go talk to officers in their precinct and bring literature about HD because someone with the disease has been mistaken for being drunk, but there's nothing formal that has been prepared that could be widely used.

Bo,

Thanks for sharing your story.

Bo

It goes beyond saying congratulations to you. You have your life back. Enjoy it to the fullest. Thank you for still caring about all of us.

Thank you so much for telling your story. The story of Maggie's son and your story give me hope that my son will also luck out and be negative. He has not tested and at times is convinced he has it. The stress and fear can play terrifying games with your mind.

Have a wonderful life.

I am so glad for your wonderful news . db

Bo,
What a wonderful story! I am so glad that you don't have the gene. Don't harbor bad feelings about how you felt about your dad. Given your circumstances anybody would feel the same. I'm an at-risker(who will test someday) and HD is not an easy disease to deal with or understand. Even knowing my mom has this disease it's still really hard to be around her. Thanks for sharing your story - you sound like the perfect HD advocate!
De

Bo, that is an awesome story. God bless you for having the courage and perserverence to go thru what you did. Am glad to hear you are in the fight with all of us. I am an at risker also, who intends to test 1 day but for the time being am just building the strength and courage to face the facts. Hearing the stories people share give me the strength to fight but am not ready to face for certain my fate. Wife wants me to go thru with it so we can finally rest with either freedom or fate but I don't think she'll be able to handle the fate part just yet. My 3 little ones are still small and I want to hang on to what I can for now and cherish these times to build a strong foundation of love and understanding in the event fate changes our path. Anyhow, all the best, god bless and god speed ...
>>Lp

I am pleased it all turned out so well for you.

Fantastic story, Bo! Glad you shared it with us!

I like Marsha's idea of a means to educate the police about HD. PHDs ARE often mistaken for drunks!

bo,

i think i said on your last post how happy i am for you, and i am. and we need you here.

but marsha brings up a good point, about educating the police sector of our nation about this disease. they do training about mental illness they should know about hd. maybe that is something you are suppose to do Bo... and you are an excellent writer, it would be a labor of love, but maybe you could think about spearheading it.

anyway, love to hear your posts.

Bo I'm so happy for you. Ray was an online friend of mine ( I THINK he mentioned my name in his story). Marsha and I knew him in an older HD support room chat and he was among 7 or 8 atriskers in a row who KNEW they had the disease and tested negative. I'm soooooooooooo glad you can now share his honor.. Contratulations and thanks for your story, Pat



Edited 1 time(s). Last edit at 10/05/2007 05:28PM by Marsha.

Bo thats a great story...its amazing the power this disease can have when we are at risk...and your story is a great representation of that.
I love this sentence..."Your minds are amazingly powerful, and it has the power to create symptoms, and to heal them."


Thanks for sharing Bo...Michelle



Edited 1 time(s). Last edit at 10/05/2007 06:13PM by Michelle.

Bo,

Thanks.

I had researched this disease, ad nauseum. I then started to get twitches that were very real. They were in my arms, mostly tricepts, legs, stomach and somethimes back. I continued to research and found web sites that told me that the HD twitch was only in the fingers, toes, face and sometimes trunk. I thought I was OK. Then, well, you guessed it, I started getting twitches in my fingers. I think if my face would have started to twitch, I would have lost it! Anyhow, I saw Bo's earlier post on another thread and emailed him. He told me his story. I then started to realize that my "symptoms" correlated so well with the research that I had done. They were vey real, but they were created by my mind. After reading his email, the symptoms immediately stopped. This was 4 days ago.

The mind can make you think anything. The internet can be a good or bad thing. At this point in time, I am just happy that the twitches have stopped. I am going to get tested, as I want to know once and for all. In the meantime, I think I'll just go about my business and not think about this.

Also, I have to admire Bo for continuing to come on this site and offer support, even though he is negative. Great guy.

Bo, thanks again.

Bo, Anyway you can help will be great, now marry that wonderful girl, have kids and enjoy every second of life it's still short you know. LOL By the way THANK YOU for the job you already do, being a police officer can be a thankless job. I want you to know how grateful I am that their are men and women out there ready to do whatever it takes to keep the rest of us safe. love and thanks, garbie

So the following are excerpts from Bo's story above.

If you can imagine "I" to mean "me- TracieT", this could be MY story. If you read my medical record it would say ALL OF THESE THINGS. ALL of them. The hands, the time off work, it was my right trap muscle and forarm...the absolute disbelief that you could do this to yourself!

I hope anyone at risk and is "just browsing" reads this post!!!!!

Thanks Bo


....I woke up and felt odd. I think I was depressed. I had never felt like this before. I felt a little off balance, but thought I was probably just coming down with something, and that the feeling would ultimately go away. Over the next week, the feelings got much worse. I was having a lot of trouble concentrating, and I had to take a week off because I was having trouble cognatively functioning.


...the more I read, the more I stressed. Over the next couple of months, my mind and body went nuts. I was twitching constantly, my hands, arms, shoulders, tongue, legs, back, face, eyelids, feet. Everywhere! It started very mild, and as time progressed they got to be very strong. My left trapesius muscle and forearm hurt constantly. I could feel an electric feeling all over my body especially in my arms and hands. My hands really started to hurt. I was having difficulty concentrating, and I was becoming forgetful. The off balance feeling was always there.The best way I can describe it is "spacing out."
I called my doctor and explained to him how I was feeling.He told me it sounded like anxiety. (It had been so long since we had talked about Huntington's he forgot I was even at-risk.) I went to his office and I told him that "I was positive I had it." He told me that anxiety can do some very strange things to the human body, but I knew in my heart it was Huntington's. There was no way in my mind that anxiety could do this to me.

You are all an inspiration. It amazes me the compassion and the willingness you all have to help one another. I am working on educating my co-workers about Huntington's. I would love to hear your insight and recommendations for the best way to start the "Law enforcement community educational process." In the meantime, I just wanted to thank you all for your kind words. Reading comments like "living everyday's" makes my day. I am so happy that I have the ability to help..

Bo,

Reading this made me cry, but in a good way. Thank you for your courage in being a police officer in the first place, an at-risker in the second place and then sharing your story. I feel so inspired.

I remember being so embarrassed at 10 years old, when the police would stop by and talk to my parents about people calling them on mom thinking she was drunk while getting her daily walk in. I think there needs to be some reading material, conferences or something educating your colleagues about HD.

I thank you so much for sharing this. We will be moving back to Omaha soon. I remember having to have genetic counseling...sort of....when I was pregnant with my oldest. The OB in my clinic wouldn't take my case unless I considered abortion due to my at-risk status. She insisted I had no idea what I was getting into, and that if I wouldn't consider abortion, then I didn't need to be her patient. I decided to find another doctor...I went to 6 others that had the same opinion. So I went ahead to UNMC and sat in a room with 3 idiots that knew nothing of HD. I ended up educating THEM!! They wrote a letter to any potential doctor that I knew the ins and outs of the disease and was completely aware of my own risk and the risk to potential children.

I've decided that I want to be tested. I need to find one of those COE things and get the process started. It'll probably be next summer when we are all settled and everything. My husband isn't sure if he wants me to get tested or not. He thinks I should just live my life and not worry about anything until it rears its ugly head, I would prefer to have a plan of action. I've talked to my dad's family (HD is on my mom's side) and they all agree with my husband. My mom's family seems to be the same way. They don't think knowing will change anything and I should live each day as if it were my last. Even my siblings think I should wait!!

I'm not even sure how the process starts, but I wanted you to know that you and Michelle are inspirations to me. You've shown me that me turning into my mother may not be inevitable. I am already an advocate for HD as well as Asperger's Syndrome (a form of autism). I know that regardless of any test result I would not turn my back from it. HD will affect my life always, one way or another. I want to know whether or not I have left this curse on my children.

I thank you from the bottom of my heart and read your email often to get up the nerve to make some necessary phone calls.

I agree with someone else that gave you some advice on this thread....GO MARRY THAT WONDERFUL GIRL, have some kids and live life to the fullest!! Thank you for keeping your community safe. I have a step son in the Army as an MP and wants to go on to more federal policing like the ATF or DEA. You are truly and inspiration as an at-risker, as a cop, and as a person. I thank you.

Melissa



Edited 1 time(s). Last edit at 10/07/2007 04:36PM by mpeters.

Thanks Bo...your story means alot to me.