Just want to say thank you to those responsible for this site. I found it thru HDSA when they posted the faces of Huntington's meet Steve
His short account of what he experienced and the confusion and unexplained actions and reactions and unconnected odd thinking of his wife was like a light in a dark tunnel.

I became a widow in April or 2010 (my husband and I had been together on and off since I was 16 and he had been in pain and partially disabled from and accident that occurred in 1990.) I was diagnosed with HD the fall of 2011.

My mother age 80 now was diagnosed in 2009 after a severe car accident made it very apparant that she had something wrong more than the effects of the accident. Now we know that this has been in our family for generations, her dad, and his mother. She had 7 siblings and 3 are deceased and she and her younger sister, now over 70 , have both been diagnosed.

Since sometime after my mother went thru menopause around age 57, my dad had been saying that something was wrong and mother was not acting right, but because he is such a controller and never been emotionally available to any of us , we felt she was just finally tired of putting up with him and was finally standing up for herself. Her anger and reactions were only toward him. She has always been a very Proverbs 31 lady , and never can I remember her ever being discontent or contentious. But according to him both those things were happening. So for over 20 years we did not believe him, yes she did have a minor amount of chorea but she has such a strong will, that is was controlled except when she was asleep. They got a divided king bed because of her restless sleep .

So many of the cognitive signs of HD can be attributed to other things , such as emotional and physical stress, and in my case emotional and physical and maritial conflict . The anger and the withdrawal and the tiredness and the cognitive lapses can also be results of an abusive situation or emotional / physical trauma. Post traumatic stress disorder and other things.

Even the signs and symptoms of attention deficiet disorder , in children and in undiagnosed adults, have so many of the pre-chorea symtoms. My husband was an adult with ADD and I have children with ADD. The posts by one of your members sites all those signs and symptoms that occured during her growing up years before she was diagnosed with HD. and it is possible and probable in many cases that both are a factor.

I have 2 siblings, neither who have chosen to have the DNA testing, I have 5 children and 13 grandchildren. I chose to be tested so that if I did not carry the genetic abnormality that none of my children or grandchildren would need to be tested. But I do have the abnormal genetic defect related to HD. My children,spouses are all aware of the HD factor and what it could mean for the grandchildren and future generations.

I am in a clinical study , CQ10 , UT medical center in Dallas, everything I read was from a medical point of view, not personal day to day from the individuals that were carriers or from their personal caretakers or family members. The information put together has brought tears to my eyes and relief to my soul that I am not alone in trying to navigate the emotional and cognitive confusion and the reactions that have no explanation and alienate those that I love from me because they think I am being rude and invasive where I do not belong.

Whether from my tenacious temperment and personality naturally, since I am a type A, and also co-dependant and an enabler ( I believed that it was my responsibility to fix everyone's issues) or the HD progressing, who knows, but I do know that reading what I have on the sites given by Steve it is probably a combination of many factors.

I have always been a loner, independant and never a follower of the crowd, so impressing people or going against the norm and the majority was part of who I am. If I believe I am right and have done the research and weighed the pros and cons, I do not intend to offend but it does not bother me if I do. It only bothered me if I offended you unintentionally because I am not a mean person and never mean to hurt people's feelings. I do not get "Hints", and people must be blunt and truthful with me and I would much rather you hurt my feelings and correct me ( I get over it) than to let me continue in ignorance when I am wrong. So as you can imagine, I was not the social butterfly or a casual friend.

So, here I am . Preplexed, confused,and trying to prepare for what is to come but not actually getting past the preparation to the implementing and socially ostracized by those in my family who are concerned with what society and social propriety think.

Thank you for letting me express my fears, and frustration and confusion as well as giving the chance to see this is all part of what each one is going thru to some extent with the HD diagnoses.

I do know without a doubt that God is in control and that He does Love me and that this thing is not in total control but my Savior, Jesus Christ does care and He is there for me even if everyone else forsakes me.

By the way, my mother,now 80, is in a rehabilitation facility . She still walks, feeds herself, reads ( if you hand her the Bible) and plays dominioes, the HD has affected her involuntary control of some muscles and her communication skills. It has affected her ability to manuver around obstacles and her balance so for safety she is in a wheel chair for most of the time. My dad visits her daily and they just celebrated their 59th wedding anniversary.. She will be 81 in December and lived a full, productive life and I am thrilled and so grateful she is my MOM.

Yes this thing called HD is progressive and affects each family and each individual differently but it is not who we are it is what we have to contend with.

Thank you again for letting me vent and express myself.

Sandi

Welcome, Sandi! It was very interesting to read your story, feelings and perceptions. You sound as if you are an intelligent woman. I'm sad for what you've gone through, but I admire your style and way of dealing with what life has handed you. I think you will be helpful to many people on this site. Thanks for sharing your story.

Thank you for your response Eve, I get distracted with the daily things and forget sometimes where I find encouragement. I know that only if I take one thing at a time can I make it thru the day and sometimes I get over whelmed by the barage of decisions that are just part of every day living. It is especially frustrating when the affects of the HD and the ability or non ability to process things correctly have a negative affect on those that are close to you and forget and take the reactions that the HD person has as a personal attack or react by withdrawing .

I do know that God is in control and that He loves me unconditionally. I do know that not even HD can override the good He has planned for me for eternity. I must realize that HD is just another obstacle course that will in the end result in those that have to travel it being stronger and more compassionate toward other members of the human race. I just ache to see the struggle those who are around me have understanding and dealing with me and my actions and reactions to life.


Sandi

Welcome, Sandi. I like you already just from your post. You're truly among friends here.

Will

Thank you for sharing your story. You sound like a strong independent person - much like my boyfriend. I think he resents having to rely on me but he has alienated every one else in his life and would have done the same to me except he told me about the Huntington's and I did my homework to know what I was facing. He also gets overwhelmed by decisions. He has to focus on one thing at a time and does not deal well with distractions. I forget sometimes and he becomes annoyed and angry. We have been together for almost 4 years now. It is very encouraging to her about your mother. His father just past in March - in his 60's. He is 45. Most people cannot tell he is ill at all. I admire his strength and courage. I just want him to enjoy life to it's fullest.

Thank you Sandi for sharing your story. I agree with Will!

Welcome, Sandi.

Welcome!

Carla