An HD Lifestyle

 

Huntington’s disease entered the life of my family with a whisper.  I received a phone call from my in-laws telling me that my wife’s biological father had passed away due to complications caused by Huntington’s disease.  I was also, curiously, asked not to share this information with my wife – and being the obedient son-in-law that I am that’s where it stood for several years.

 

This was pre-internet and since I knew nothing about HD and wanted to know a little more about it I located a book on HD at Baylor University’s library.  I drove down to the library and read a few chapters – and decided right then that I didn’t like anything I was reading and essentially concluded that this wasn’t going to be anything that I could deal with immediately so I closed the chapter on my HD education – at least for the time.

 

We already had our first child and when the subject of another child came up I managed to dance around it without having to reveal what I knew that she didn’t yet know.  But secrets don’t ever stay secrets for long – and one day I came home from work to a rather angry wife.  It seems that the same verbal non-disclosure agreement was made with my brother-in-law regarding his wife.  But they apparently had a rather heated fight that day and there was some comment from my partner in crime to his wife that suggested that her behavior might be related to HD.  Of course, it wasn’t, but it apparently led to another loud discussion for other reasons, which lead to my sister-in-law calling my wife to discuss what she learned – which lead to a rather loud discussion of our own.

 

Lesson learned: A decision to keep HD in the family a secret is always a poor decision because it only results in a loss of trust – and HD family members need to build trust early because it is much needed later.

After “the discussion” and my wife learned as little as I knew about Huntington’s disease we moved on with our lives.  She wasn’t symptomatic and she agreed with the decision to stop at one child.

 

Fast forward several years later and my wife reports that she isn’t feeling right and that she thinks she may be diabetic.  We then start an interesting series of visits to the doctor where the doctors tell her that nothing is wrong with her but she is convinced that she is diabetic.  Eventually we mention to a doctor that there is Huntington’s disease in the family and she is referred to a neurologist. The neurologist schedules an MRI for her and when the MRI comes back showing that there appears to be some reduction in brain mass he then arranges for a blood test to confirm the diagnosis.

 

Again, even with a diagnosis in hand, we go into a phase of nothingness.  We move forward with our lives with the only change being that I end my software consulting business and take a permanent position where I can be around the family more often.

 

Within about two years my wife begins to be unreasonably angry (and it wasn’t the “normal” mad at husband anger).  The reason behind the anger wasn’t making much sense and was a little scary.  She was starting to demonstrate other odd behaviors.  But now it was the era of the Internet and there were these marvelous things called LIST-SERVs where a person could sign up and post questions and anyone else in the group could answer your question.  I located a LIST-SERV that specialized in Huntington’s disease and started the drill.  I asked if unusual anger was an attribute of HD.  Yes!  I asked if obsessive behavior might be an attribute of HD.  Yes!  I asked if leaving expired and mildewed food in the refrigerator (and getting upset if I tried to throw it out) was an attribute of HD.  YES!

 

HD had caught up with us and forced us to deal with it.  Well, actually it forced me to deal with it because if I brought up the subject of Huntington’s disease she did NOT have it and was not going to get it – period.  Having problems accepting a diagnosis can be a serious problem for HD patients.  I would learn later that this might actually be due to the brain damage and is not always just a decision by the patient.

 

Well, participating in the HUNT-DIS LIST-SERV as well as the Massachusetts General Hospital’s HD Group (MGH) became an obsession.   I was out to learn as much as I could about HD so that I would be better prepared for what was soon to come.  It was in one of those exchanges where Marsha Miller and Cristy Wolfe pointed out that the same questions were being asked several times and that it would be a good thing if the group could point the person to a Web page that had answers to frequently asked questions.  They posted a question asking if anyone would help put together a FAQ Web site and it didn’t take me two seconds to realize that putting together a FAQ Web page would be the quickest way for me to learn about HD – I’d see all of the questions and all of the answers.  And since I’d have to type it all in then certainly I’d understand all I’d need to know about HD – yeah, right.

 

They accepted the offer of my services and on April 1st, 2000 we published www.hdac.org (now published as www.hdlf.org).   It was one of the first HD family Web sites available and was a group effort (Marsha from Wilmington Delaware, Cristy from Hawaii, and me from Temple, Texas).  Soon after the FAQ I added a recipe section so that families could share recipes that worked well for maintaining an HD patient’s diet.  I added a link page with the intent of linking to every HD associated site – organizational, business and personal – it didn’t matter to me and the only limitation was that it could NOT be promoting bad HD science, I kept adding more and more pieces until it became a fully functioning Web site. One day our page hits shot up from around 100 per day to about 1000 per day.  Marsha did a little research and found that CNN published an article about Huntington’s disease and they linked to our Web site “for more information”.  We knew then that we had achieved our quality and quantity goals for the site.

 

Jerry Lampson, an early family advocate for research, created the www.hdlighthouse.org Web site.  His site was intended to provide the latest information about research for the doctors that were treating his HD+ wife.  When his wife passed away he continued to maintain the site for the benefit of the HD community and it developed into a treasure trove of information.  When Jerry passed away due to complications of cancer Marsha picked up that baton and continued to add even more to HDlighthouse.   Eventually we combined the HDAC site and the HDlighthouse site into a single site we call the HD Lighthouse Family site (www.hdlf.org).   The coverage of research by Marsha, which is now published on HDSA’s Web site, is comprehensive and accessible – and is used by both by HD family members who want to be familiar with research and by physicians who want to stay informed about what other researchers have going on.

Huntington’s disease slowly destroys the brain and how the patient reacts to the damage can vary greatly.  In the case of my wife it was causing her to have problems with reality.  She decided that she did not have Huntington’s disease and that I was using the specter of HD to control her.  For that reason she decided that she wanted a divorce and if I didn’t give it to her then she was going to kill me.  When she first broke that news to me – and she told me flat out how she was going to do it – I couldn’t help laughing.  Now don’t let anyone tell you that HD patients lose their ability to reason things out because they normally don’t lose that ability – it just takes them a little longer.  Well, her strategy was to keep me awake at night by fighting with me all night (I didn’t have to worry about knives or guns because that just wasn’t her – she was far too sweet and kind to take me out that way).  Her goal was for me to fall asleep driving to work (a long 1 hour drive early in the morning).  I ignored the situation for a few weeks but I was getting only 3 or 4 hours of sleep.  I finally caught myself asleep at the wheel – about to run into a ditch – and I knew that I finally lost that battle.

 

That night I took my wife out to dinner and drove out to a park where I conceded defeat by offering her the divorce she wanted.  I couldn’t believe the big grin that crossed her face.  At that point we were friends again. We went through the divorce process and I put her up in an apartment (although I was very uncomfortable with this development).  By this point she had already lost her driving license (which was another long drawn-out comedy of errors) so I provided weeknight and weekend escort services for shopping and other errands that she needed.  We’d even enjoy lunch and dinners together.  In general we got along much better than we did while living in the same house.  I should also mention that there were a few amazing people from our church that helped her out when I was unable.  A strong support network of friends is invaluable.

 

Well, one day she informed me that she was moving to California (we were in Texas).  She watched a late night infomercial that promised her a career in cosmetology and she wanted me to drive her to California and set her up in an apartment there and pay for her schooling.  As you can imagine, I was in shock at this new development.  There was no way that she could live on her own like that – and I’ve read the stories of HD+ family members disappearing on the streets.  I was in a panic.  My manipulation gears were in overdrive.  How do I fix this?

I tried to get adult protective services involved.  They sympathized with the situation and understood that my wife should not be living on her own.  But I was informed by our local adult protective service agent that unless she starts hurting people or burns the apartment building down that they could not do anything for her.  That wasn’t real helpful to me.  I needed help, so I contacted her father in Denver to tell him what was going on.  I knew Denver had a significantly better HD support network than Austin so a plan started to form.  I convinced my wife that Denver had a good cosmetology school and that I’d drive her up to Denver and a big plus was that her dad had found a nice apartment where she could live.  She agreed that would be better than California because she could be with her family.  So we packed up what we could carry in the van and started our trek to Denver (which would make a great comedy show of its own).

 

Over the course of a year, everything fell into place as best it could.  My wife managed to survive the year and stay safe.  Enough evidence was documented (police reports, etc) that could be used to legally confirm that she was a danger to herself and her parents were able to obtain guardianship.  A great care facility that specialized in HD patients was found and they told her that they had a job for her at the facility if she would come live there – and she did.  In the end her parents orchestrated an amazing set of events to finally get her to a safe place.

 

But as HD families know – HD is often an involuntary career choice.  I have an at-risk daughter and will continue to advocate for HD families.  In an effort to move the cause forward I joined the Board of Trustees at HDSA with a personal goal of representing the HD family community – particularly those that are active on the Internet.  I wanted to see HDSA grow its outreach to those families that are not serviced by HD Centers of Excellence.

 

HD advocacy and education has turned into an ongoing effort for me and I am glad I made that first decision to learn all I could and to share what I learned with others.  HD is a difficult disease to manage, but the more you know, the better the decisions that you make.  I have had the satisfaction of seeing my wife find safe haven and become content with her surroundings as she receives excellent care and enjoys the regular attention of her mother, father and sister.  Along the way, I have met many wonderful people, made friends that have become part of my extended HD family, and on Memorial Day weekend I will be marrying my fellow HD advocate and life partner – Marsha.

 

 

                                     
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