How HD Affects Marriages and Relationships, Parts I & II



 

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-----Original Message-----
From: Huntington's Disease Discussion
[mailto:HUNT-DIS@MAELSTROM.STJOHNS.EDU] On Behalf Of Phil Hardt
Sent: Saturday, October 26, 2002 4:33 PM
To: HUNT-DIS@MAELSTROM.STJOHNS.EDU
Subject: How HD affects Marriages and relationships - Part I

[Paragraphs added for clarity.]

Just wanted to update everyone as to my situation! As I already mentioned my wife divorced me last month. Since then, I have broken off a wonderful relationship with a beautiful woman who is also a Phd in order to hopefully avert the divorce, moved in with my middle daughter Michelle and her family for a week, moved to California to stay with my sister for several weeks, and then finally, was asked by my ex-wife to move back home in order to help with all of our special needs children as she has been overwhelmed with their care, taking them to specialists, etc. In addition, I have been trying to handle the Arizona Affiliate business and help line problems as I am its new Chairman. Phew! The thing that hurts the most about having to go through all of this is that because HD is selective in what is affects, and doesn't mess up all of your abilities, there are still parts of me that can understand what's happening and this makes it even more frustrating and saddening.

I want to mention some of the things my ex-wife Laura and I have talked about in hopes to shed some insight into some of the complex issues that this disease involves and state once again that this just really pisses me off more than ever that National is still doing nothing, such as funding research studies into how better to understand and control the "softer" symptoms of HD, such as depression and suicidal thoughts, loss of forward thinking, emotional blunting, loss of inhibitions, impulsivity, (to name a few) that continue to plague me and certainly thousands of others around the country. These type of research studies are needed desperately NOW, not to help me, because it's already too late, but maybe to help tens of thousands of others in the future.

We've got to quit ignoring them in hopes that they will go away- because they won't. In the meantime, another family "bleeds to death in the trenches" and is destroyed by this damned despicable disease while waiting on the elusive cure. Since National continues to turn a deaf ear to the cries of families suffering because of no suicide prevention program I don't know what makes me think they would hear the cries of yet another family ripped apart at the seams either. If I were only a mouse or a fruit fly, and not simply a human being with HD, maybe my plight, and the plight of tens of thousands of others would be more noticeable to them- forgive my candor and cynicism.

Here's what we've been discussing. As long as I stay here, my ex-wife and I will be living a platonic relationship as she would never consider doing anything intimate with me again while we're divorced. I still feel an obligation to help with the children as their needs are very high. She states that she would marry me again in a minute if there was some medication out there that could help me be faithful again. This is the only HD-affected symptom she absolutely refuses to tolerate because of the very strong religious beliefs she still has and that HD has unfortunately robbed from me. She then joked and said that if there were, every wife would probably be adding it to their husband's food- just to make sure. However, my psychologist said that while she gave counseling to men in prison, those with similar problems were given Haldol, Risperdal and Zyprexa to control themselves- not too good of choices, right? I've always advocated the best "quality of life" for Phds and caregivers alike but will I now have to accept a lesser one?

If I can't be married to Laura then the least I can still try to do is help with all of the 5 special needs kids we've adopted who are all still living at home. The problem that I'm concerned about is if I take these medications will I still be able to drive the kids to their almost daily doctor appointments like I am now for the next couple of years so she can finish her Master's degree and then later while she works full time? Is still helping the kids more important than trying to remarry her because that's where they need the most help now, or is remarrying her and taking care of the kids more important? If I remarry someone else will they consent for me to be as involved with the kids as I would like to be because of their special needs? If I take these medications will I have to quit speaking around the country and give up being Chairman of our HDSA-AZ Affiliate? If I start them will I be able to continue answering dozens of e-mails a month and helping others with various HD-related problems? If I take them, and they work, and Laura remarries me, will I then not be able to be intimate with her again?
Should that matter? Will it be inevitable some day anyway? In addition, if I take this medication should I also quit taking the live shark cells as they are what's keeping my physical and most of my cognitive symptoms reversed? Once again, if I do this, will I become a liability to them too soon? (CONTINUED)

 



-----Original Message-----
From: Huntington's Disease Discussion
[mailto:HUNT-DIS@MAELSTROM.STJOHNS.EDU] On Behalf Of Phil Hardt
Sent: Saturday, October 26, 2002 4:34 PM
To: HUNT-DIS@MAELSTROM.STJOHNS.EDU
Subject: How HD affects Marriages and Relationships - Part II

The neurologist from the Mayo clinic has already made an appointment for me to see their Neuro-psychiatrist who treats diseases like HD, which I will have to pay for out-of-pocket, as she is not in my HMO network. Do I need to see her even if I'm fairly sure she can do nothing for me? I guess if I knew for sure that the medication would work perfectly and not interfere with taking care of the kids, and allow me to have some kind of intimate relationship with my ex-wife again then I would be happy to take them, but no one knows for sure. Further, if they aren't going to work, then I want to begin another relationship with someone else but will I be able to if I start them? I think you're beginning to see my dilemma. Should I try them and see if they work or not try them?  I would feel much better if they could say "Such and such study proved that this therapy or medication was successful in treating this particular problem for HD."

Arizona is a state where everything is supposed to be divided equally upon divorce; however, during the divorce I gave Laura and the kids everything except my car, clothes and computer. Then the judge also ordered child support taking away over half of my disability income.  Since we were concerned about the possibility of me remarrying in the future and my new wife automatically becoming my beneficiary I also signed over the ownership of my life insurance policies to her so upon my death, she could pay off all the bills and continue taking care of the children. She will need to do this until they die for 3 of the 5 as they will never be able to live by themselves or be gainfully employed.

She was already the beneficiary but to further protect her and the kids it was necessary to do this. This then led me, prior to beginning my anti-depressants again, to suicidal thoughts as the one last way of fulfilling my responsibilities to them and not letting HD destroy us any more. This seemed like a win-win situation- I wouldn't be able to hurt them any more, they wouldn't have to take care of me AND they would have enough money to live comfortably and move on with life.

Alas, the bleeding continues. When will it stop?......Phil

 


Phil Hardt     phardt1@cox.net    602-309-3118
 

 
 
         
   

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