Speaking Out ~ Living With HD

Julie-At Risk

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Julie At~Risk
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Julie was 25 years old when she responded to this questionaire.  She in New Jersey and is at risk for HD.

What Issues Do You Deal With Living With HD That Is The Hardest For You?


Not having my own freedom to come and go, go to work or do things that I used to do is the hardest part for me.  Also, being at-risk for Huntington's Disease.  When my Mom was diagnosed, I was so sure that I wanted to be tested, but then decided that I should wait.  I want to live my life right now and take care of my Mom, the best that I can, without focusing on whether I would test positive or not.  Once you are positive or negative, you can never take it back to the moment before you know. 

I don't know how I would react if I DID test positive and I don't know how it would affect me caring for my Mom.  I would like to be able to enjoy my life as much as I can and if the time comes where I want to have children, or I start showing symptoms, then I will deal with it them and be tested.  I want to find out, but just not right now.


Has Living With HD Affected Your Education? (Absenteeism/Lack of Concentration/etc.)


I didn't get a chance to make a decision whether I wanted to go to college or not, I have been too busy taking care of my Mom.


What Things Do You Do To Help In The Care of an HD parent? 

Do You Feel This Is Fair?


I am responsible for 24/7 total care for my Mom (my father passed away when I was 11).  She needs help to walk a short distance and if longer, needs

to be in her wheel-chair.  She is unable to dress, feed or bathe herself.  She needs her food pureed so she will not choke.  She is incontinent and needs care for that, also. 


I also take care of her finances (Social Security), medications, and any other needs she may have.

While I may not think it is completely fair that I have to be the only
and constant caregiver, and that my relatives (on my Mom's side) should at least call and see she how she is (they wrote us off completely after the diagnosis), I really don't think it's FAIR that this happened to my Mom and want to make sure that she has the best quality of life possible. 


She doesn't deserve what has happened to her and we all must know that sometimes LIFE ISN'T FAIR, but there are just some things that we have to do. 


I couldn't picture NOT taking care of her and I know that I have made the right decision (for now) to be home with her and help her as much as I can.


How Does Helping With Your Parent's Care Affect You Socially?  Personally? Financially?


Socially - I cannot leave my Mom alone for more than 5 minutes for fear of her getting up and walking extremely unsteadily and falling down.  She needs someone there constantly.  That makes it very hard to go out with my boy-friend.  Luckily, we normally just hang out at my house and go out every once in a while.  Anytime I do want to go out, I have to get my best friend to watch my Mom.

Personally - It is very hard to watch my Mom's condition decline and see
her become sicker.  Since it has been the 2 of us for so long, it is very scary to think that someday it will bejust me.  I hate having to watch her go through this and struggle with everyday tasks in day-to-day life.  


I miss my *mommy* and wish I could have her back.  She always has a smile, doesn't get frustrated and just keeps trying!  What a wonderful spirit she has!  I have definitely learned patience and under-standing from taking care of her.

Financially - I was working for 6 years at the same job - I took the Family
Medical Leave Act

in March of 2000.  My Mother was declining rapidly and it go to the point where I could no longer leave her home alone while I worked. 

 How Does Helping With Your Parent's Care Affect You Socially?  Personally? Financially? continued


She was hallucinating that people were in the house, walking around and falling down, and was out of control.  She has just been diagnosed so I thought I should take some time to get things straightened out. 


Even though, she is much better now, she cannot be left alone and I have not gone back to work since I took the Family Medical Leave Act. 

It has hit me financially very hard because I went from making a decent
salary to almost nothing.  I do word-processing from home for some I used to work for, but the work is very sporadic and not often enough at all. 
This has probably been once of the biggest loses, for me, personally, as I am unable to earn a decent living and be independent and do what I loved. 
It also makes it very hard if you want to buy anything, etc., to know that you normally don't have the money for it and know that IF you could go back to work you could.  BUT we do get by - just on a tight budget!


What Advice Would You Give to A Young Person Living in A Volatile HD Family Environment?


I went through this with my Mom before she was diagnosed.  She was extremely violent(physically and emotionally) and not at all herself.  She needed the right medication and now she is much better.  But you should never subject yourself to an environ-ment where a person could become or already is violent.  They may not mean to (and I know my Mom didn't), but that doesn't take away the bruises and abuse that you can suffer through.


How Have You Handled The  Anger You May Feel Living With HD?  What Has Worked Best For You?


Smoking cigarettes (LOL) and trying to make sure there is still time in the day for just me, to do whatever it is (surf the net, play a game, watch a movie) anything so that there is time for just me.  I'll stay up all night sometimes just to be "alone" and have some private time.


What Is The ONE Thing In HD That You Are Most Afraid To Discuss With A Parent?  Why?


Being a caregiver, I would have to say my biggest fear is having to explain to my Mom what will happen to her as the HD progresses.


How Open Are Your Parents In Discussing HD With You And How Does This Make You Feel?


Since it is only my Mom and me there is really no discussion as she really does not understand the disease (even after me explaining it, doctors, etc.)  She knows something is wrong with her, but is scared to know much more.


What Things Have You Done To Help You Live With Being At Risk For HD?


I have read different books, spoken to other at-risk people, looked on the Internet, spoken to my Mom's doctors and genetics counselor, and talked to my friends and boyfriend.


If You've Tested HD Positive, What Are Three of The Most Important Things You Feel Would Help You?   Are You Getting That Support?


I have not been tested.


What Type of Support Is There Available In Your Area For Young People Living With HD? Would You Recommend This Support To Others?  If So, Please list Contacts.


Although I am not really looking for support at this time, from what I have seen there is not much.


Would You Be Willing To Communicate With Someone Your Age Dealing With These Things?


Yes, I would be happy to talk to others in the same situation