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7259Re: [huntington's at risk] Positive HD gene test two years ago

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  • M
    Jul 30, 2012
      Hi Ruthie,
      I'm sorry to hear about your family's experience with HD.  My Grandmother had it and now my Mom is entering the final stages of the disease.  Reading your story about your Dad's violent outbursts sounds so similiar to my experiences with my Mom's outburts towards my Father and myself.  I thankfully tested negative for the gene almost 5 years ago, but still live daily with HD because of my Mom and knowing that others are also facing it. 
      I don't check this email account as often as I should, but I'm always here if you need someone to talk.
      Best wishes,

      From: Ruthie Johnson <nrjrhd@...>
      To: "huntingtonsatrisk@yahoogroups.com" <huntingtonsatrisk@yahoogroups.com>
      Sent: Monday, July 30, 2012 8:44 AM
      Subject: Re: [huntington's at risk] Positive HD gene test two years ago

      Hi Dave,
      You can call me Ruthie.  Thanks for your quick response and sorry for my delayed answer.  My house has been unusually busy this week,with the grandchildren and the family celebrating mine and my husbands birthdays. It has been a happy time but your email has been constantly on my mind since I read it. Since I lost my job, Monday morning are hard!, a reminder of the life past.  My husband thinks I,m crazy sure enough as he climbs out of bed at 4:00 am and begins a job which he says he hates. Even though he has been at his job for 35 years,he is still quite aways from retirement due to our insurance situation and the poor benefits his company has. Thanks to God he still has a job.
      I first want to commend you, your first wife and your second for all of your years of service and dedication to the HDSA.  I do wish there was a chapter nearer to me and my husband. Atlanta Georgia is the nearest one and I don't drive in big city traffic.  We have discussed possibly attending the national next year if is close by. I think I read somewhere it will be in Jacksonville FL if so that will be very doable for us. 
      We heard about HD about the same year.  1986 was about the time my dad was diagnosed.  I think he was symptomatic 7-8 years prior.  A usually sweet and humble dad had literally become a tyrant. His actions had already turned some of his children away from him. He had become violent to my mother who was sick due to cancer.  She could barley cope with her on illness much less his. This man had only been to the doctor 2-3 times in his lifetime and he wasn't about to see a doctor since he did not have a PHYSICAL problem.  I was a new nurse at the time and the only one of his children left that could talk him down from his raging fits. I lived 70 miles from them at this time. Mother would call me at 3:00 in the mornings telling me all kinds of things he had said and done. By the time I could get there most of the time he would have calmed down.  Mother hid the guns in the insulation of the attic because he had threatened to kill himself  and others.  The night he drug my mother down a gravel driveway trying to make her come back home was the last straw with me.  I told him if he didn't let me take him to the doctor then I would have him arrested. Since he had no insurance we had to rely on the VA hospital.  The doctor was surprised that we had no idea what was wrong with him. With a quick family history and his obvious jerking and unsteady gait he was diagnosed immediately.  His mother had lived the last 7 years in a mental hospital.We had been told , she had gone crazy from taking to much medicine.  He also had a lot older half sister with the same jerking, swinging  and unsteady gait which my dad had. The sporadic violent behavior had not been disclosed to us by her family at that time. I had learned very little in nursing school about this disease.  The information he was telling my mother and me had not sunk in before he hit me with a double whammy and told me there was a 50/50 chance I would have this also.  The immediate guilt consumed me for passing this onto my two children even though I had no knowledge of it.  We left the VA with a diagnosis and THAT WAS ALL!  No printed literature which I could take back to my siblings and no guidance on what to do or how to care for him. I gave the information the best way I could to a already dysfunctional family.  IT ROCKED THEIR WORLD! and I truly believe they have hated me ever since that day.  To this day, I have one sister which still does not believe it.  No, there was no blood test at that time.  When the test finally did come out I requested that one be done on Daddy.  I let the doctor talk me out of it because Daddy was already well  into the disease.  I would love to have known what his CAG result was.   
      As of today, I have one brother (50) who tested neg 3 years ago.  One brother (61) who tested positive 4 years ago and has since been diagnosed.  My oldest sister (66), I have not seen in 9 years (since my died).  She is a ministers wife and a retired teacher.  I have talked to her on the phone a few times.  I know she has some issues from talking to others but she denies any HD symptoms.  Her only child was adopted so she says she has nothing to worry about.  Although she is highly educated she seems to have acquired very little knowledge of the disease or she has little compassion for those of us who have tested positive.  I have another sister (63), who is getting divorced for the 5th time.  She has exhibited irrational outburst,anxiety,depression, panic attacks for years.  I have talked with her X husband.  He told me he was in denial for the first few years of their 15 year marriage because of  his first wife's problems. ( mentally ill and eventually killed herself)  When he confronted her about the possibility she may have HD and need treatment she became completely UNGLUED!    Lying, cheating and stealing became worse and worst of all she started beating him then would call the law and tell them it was he who beat her.  The last confrontation ended with her getting a restraining order to keep him away from her. She went to a "safe house" for abused women and he was put in the street and homeless until his son could get him a lawyer.  He still loves her and would take care of her.  After hours of research he is positive she has HD.   My youngest sister (55) is the one who is in so mush denial and refuses to this day to believe her dad had HD.  She is also the one who has keep the drama stirred up in this family for years.  I use to despise her for this but the more I learn about this (family) disease the easier it is for me to understand.  I really feel sorry for her and her family.
      I have one son (36) who has two daughters. I do not know how he feels about testing, I know he is very protective of the 8 and 10 year old.  He seldom discusses this subject with me.  He has ADD
      ( attention deficient disorder) which makes managing his landscaping business very stressful and difficult.  He is a wonderful father and spends a lot of time with his girls.  He has a wonderful compassionate and patient wife.  I also have a daughter (31) who has a 2 1/2 year old little boy.  She is just starting out in her new career as a certified occupational therapy asst.  We are pretty close. She wanted to be with me when I received my test results.  With us both being in health care we can discuss most anything.  She is concerned that she may be symptomatic.  She to is ADD and this becomes worse with stress.  I hope this is the case.  They both have had a up close and personal view of HD.  They were just 12 and 16 when I had to bring my sick dad home with use.  His violence had become a lot more manageable with medication.  Plus he was severely depressed after losing my mother to a 18 year battle with breast cancer.  He was so withdrawn and despondent I know he would have just given up completely if we would have placed him in a nursing home.  My wonderful husband and I agreed to keep him as long as we could manage without putting our children at risk for harm.  It took us months and months before we could pull him out of the depression but we finally succeeded.  In fact we actually had a few good years with him before he got to the point I was having to have someone care for him while I was at work.  He went to a personal care home near our home and stayed until he begin falling all the time.  We then had to place him in a nursing home. He pretty much just existed after that and died in 2003 at age 78.  My worst nightmare is that this to will be my life in the future.
      I am so sorry to hear about your sons who tested positive.  Are they symptomatic yet. I am glad you have two daughters who are not going to let LIFE pass them up.  Sounds to me like they would be fun and interesting to be around.  I'm sure they all appreciate you and your work with HDSA
      Yes, we are light years from when we were first introduced to this disease and I do put my trust in the advanced research but I also have trust in God that He will see us through.  I pray for healing for this generation and most of all for the generations to come.  I can hardly believe it is hours later then when I first started this email.  My heart is much lighter for it.  I have needed to put some things to paper for a long time.  I would like to hear from others and I would like to hear more details of your family. My prayer today is that I might be able to help someone else in my situation
      I am so glad I found this support group.
      Best Regards

      From: Dave Hodgson <SpikeTDog@...>
      To: huntingtonsatrisk@yahoogroups.com
      Sent: Tuesday, July 24, 2012 8:54 PM
      Subject: Re: [huntington's at risk] Positive HD gene test two years ago

      Hi "nrjhd" :)
      I'm Dave and have been asociated with HDSA since 1986 when my wife was diagnosed.  There was no blood test at the time.  Her mother was one of seven siblings and the only one to have HD.  My wife was one of 5 siblings, she was the oldest.  One of her younger brothers died with it as did her younger sister.  One of her younger brothers has never tested but is not showing any symptoms.  Her youngest brother took the test and tested negative.  I have 4 kids by my late wife, the oldest is a son (38) and just tested positive in February of this year.  My 3 daughters have elected NOT to test and live one day at a time.  Two of them love taking calculated risks: they both skydive.  The youngest daughter has 2 sons with her boyfriend of 10 years (He wants to marry her, she doesn't want to be married).  After my late wife died, I remarried a gal I met on an on-line support group for HD.  Her late husband died in 1999.  She has 3 sons: the oldest is 38 and lives with us as he tested positive for HD in 2002.  Her middle son tested negative and her youngest son was adopted and will never have to worry about HD
      My late wife and I got involved locally with the Illinois state chapter of HDSA as soon as she was diagnosed.  I've served as the President of the chapter for 6 years.  My current wife was associated with the Oklahoma state chapter and joined the Illinois chapter when we got married (at the 2005 National Covention in Atlanta, Georgia).  My wife along with Jean Miller from Florida guided the National Youth Association for several years until the NYA higher ups "retired" them. 
      As you already have a life time of experience taking care of your father, I can only imagine what you're now going through.  Surround yourself with those who will be there to support you, to help you, as you walk down the path of this devastating disease.  If there's any hope, it's the fact that we are light years ahead of when I was first introduced to HD by meeting my prospective in-laws.  The research is now incredibly advanced and offers us real hope that we WILL find a treatment that will allow our HD loved ones a full "normal" life. (ASO's and stem-cell therapy look very promising). 
      We are always sad that you had to look for us, but happy that you found us.  Living as far as you do from a support group is NOT unusual.  While I live relatively close to several support groups in the Chicagoland area, I still relied heavily on the on-line support groups that I belonged to as I do today.  There is nothing you can't discuss here with us.  I suspect some of us old timers have almost seen it all when it comes to HD.  If we can't answer your question, I'm sure we can find someone who can.  Also, this is THE place to vent your frustrations with HD.  We DO know what your feeling because chances are good that we've been in the same situation.  Welcome to the group!
      Best regards
      Dave Hodgson
      Illinois Chapter TEAM HOPE-Walk For A Cure
      Ill. Chapter-HDSA Web Page
      Sponsor Dave & Susie's Walk
      ----- Original Message -----
      From: nrjrhd
      Sent: Tuesday, July 24, 2012 5:45 PM
      Subject: [huntington's at risk] Positive HD gene test two years ago


      I am 120 miles from the nearest support meetings. I have never
      considered a support person on line until today. I just resently found
      this site. I do not have anyone which I can discuss this horrible
      situation with that understands first hand how I feel.

      My father died with HD nine years ago. I am one of six children. One
      brother was diagnosed two years ago, one sister with all the symptoms
      but refuses to go to a doctor,and one brother with a negitive gene test.
      The other siblings are very much in denial. I have cousins also at risk,
      but none that will talk about IT.

      I am 56 years old. My family tends to develope the symptoms in our late
      fifties. I was my fathers caregiver for 12 years so I know first hand
      what a dreadful time my family will have caring for me. I have a
      wonderful and supportive husband and two children that love me dearly
      but I would rather go to a early grave than for them to have to care for

      I lost my job 16 monthes ago after working for 27 years as a LPN. I had
      difficulty caring for my patients and eventually become a risk for the
      company. After a hospitalization and multiple med changes, my
      depression, anxiety and panic attacks are finally under control.

      I would like to hear from you and learn your story.


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