I only found out about this disease today. My grandma was 73. While I knew she had Huntington's, I never looked it up. I found out today it's genetic from my parents. They didn't want to tell me or my brother until we were older. I am 20, my brother is 16. My mom is 50 and currently shows no signs of this disease. Could she be in the clear? She decided against getting a test as well as my uncle. I am worried about her, my uncle and then me, my brother and my cousins because if my mom has it then my brother and I have a 50% chance of getting it. I just hope my mom doesn't get it. If she does then I will probably get the test and then I may not have kids. This is horrible. I have been distraught with this all day. How do you guys live with this?

Dear Josh,

It takes time. I learned when I was 8 months pregnant that my son's father has HD and had known about it for three years. He just didn't think it was something I needed to know. I cried nearly every day until my son was born. Then I tried to stop thinking about it for about a year. Then I started reading about it and learning more and crying more. I was so mad because I wanted to know if my son had the disease and I was so mad for not being given the chance to know. Then I asked myself what would be different if I knew...I said if he had it I would make sure my son exercised and ate right and experienced as much of the world as possible and then I realized I am going to do all of those things anyway. I am still not ok with it but I am learning to live with the possibilities. It is hard but there is very much hope on the horizon. I am so sorry you have lost your grandmother. I am so sorry that you and your family are at risk for this. Talk to each other, learn about the disease and volunteer for clinical trials. Hugs to you and your family.

Josh, I am sorry for your loss. Just finding out would certainly be a shock like it isn't enough already. I suggest you go through the emotions and in the process try to slow down a bit. It's a good thing your Mom doesn't show symptoms and yes she may not have it which would be great for everyone. There is however a possibility she could. Try to be positive. Not all who are at risk choose to test. I have two sons, both a bit older, but they face the same thing. Only one difference, I am the first in my family to have the gene. Keep checking out things on the site. There's lots of information about testing pros and cons.

Pop in when you feel the need. It certainly is a friendly place.

Best of Luck,
Mike



Edited 1 time(s). Last edit at 11/30/2012 07:56PM by mikee.

I found that about HD in 2000 after my mother in law pass away, we were not close to her so we did not know anything about it, at that moment I worry about my kids I have a 23, 21 and 15 year old my husband start showing signs three years ago and we found out 2 years ago that he had HD I talk to my kids about it and decided that they do not want to know, because all theyre golds in life will just fly away from them, so they decided to live life to the fullest and trying to work on theyre future, and eat healthy exercise and keep in form just in case, I think in our family the decision not to know is good because if they found out they have it it just will kill the little life they may have on their future, regarding that if they will get married they may change their mind if they will like to have kids, so will see I am praying everyday that they wont have it my husband did not show any sign ever and his brother and sister have not show any sign either .

Josh, I'm sorry for your loss of your grandma. The initial shock of learning about this disease is horrible. I was even angry at the people in the HD support group because they seemed to still be living life... I didn't get how they could stand this. Then time passes and you just learn to accept HD and try to enjoy all the good in life. Sometimes the reality of it really gets to me. Like when I realize that my dad and my sis are fading away. It hurts, like the initial shock. Then in the next moment I just push it aside and enjoy the time we have together and we laugh at all the craziness we have now. I pray that this disease did not pass on to your mom. Good luck

I'm so sorry for your loss and the discovery that you could be at risk. There is a lot of hope for treatment . There is a lot of hopeful research and your mother may be gene negative and then you would be gene negative.
paula

Josh, sorry for the loss of your grandmother and the realization of Huntington's disease in your life. I am about the same age as your Mom (49). I am untested. My mom is in late stages in a nursing home (71 years old). I have 2 daughters, 18 and 16. When my mom was diagnosed about 6 or 7 years ago, we all were in a black cloud. It does get better after some time. My oldest is a freshman at the University of Michigan and she wrote the following for a scholarship application...I think it speaks well of living with a positive attitude...hope it helps.


It would be an understatement to say that my family was devastated when my grandmother was diagnosed with Huntington’s Disease 6 years ago. It was apparent to all of us, even me at the age of 12, that something was very wrong with her. Her body was moving in odd ways, her driving, writing and speaking abilities were deteriorating.

Huntington’s is a progressive degenerative neurological disease that typically starts developing in adults between 30 and 50 years of age. Rarely, children can be afflicted. The disease is caused by a faulty gene that can be passed down through generations. Every person who has a parent with Huntington’s has a 50% chance of inheriting the disease. There is currently no cure and no effective treatment to stop progression.

The past 6 years have been difficult watching my grandmother get worse. She currently resides at Whitehall Nursing Home and must have all of her needs met by others. What is really amazing and has had a huge impact on me, is the fact that my grandma has never complained about her fate. She is thankful for her life and for anything that anyone does for her. Although she must be dressed, lifted into a wheelchair, fed, bathed, etc. she somehow manages to say “Thank You” for simple things like a visit or even a pancake.

If you were to ask me if I am afraid for my mother, myself, my sister, aunts and cousins, I would tell you that I certainly am. I am, however, not willing to let this fear determine how I will live my life! I make sure that I do not take anything or anyone for granted, and have made the choice to live each and every day with a positive outlook. Researchers have given me many reasons to hope that there will be effective treatments or a cure before anyone else in my family is significantly effected. I have made the decision to not let the “what ifs” and “whens” stop me from achieving all that I can. I have already achieved so much that I am proud of, and I see a bright future ahead. My educational and career goals include attending The University of Michigan, majoring in Chemistry (minoring in Communications) with the goal of attending Medical School. I am looking forward to the day that I can make (through medical practice, medical communications, or perhaps medical research) a positive impact on the health and well-being of others.

Thank you for considering me for the David Langham Memorial Scholarship. Please know that if I am chosen for this honor, you will be supporting a highly motivated, optimistic and sincerely grateful student with her dream of attending college.