Life in HD

Life goes by in High Definition when you are struggling with Huntington's Disease.

[yourbritneyspearsanon-blog]

Reblog if you actually give a shit about anyone who's suicidal or depressed.

[anosmic]

Yep

[anosmic]

Prayer Doesn't Work in this Senario

Ever fart in an elevator and Pray that no one else gets in?  Next floor, 20 people get in!  Only a few people grimaced.  Luckily one was a construction worker...plausible deniability, am I right?

[anosmic]

Meditations on Mediations in HD

The past few months have not gone well. The interactions between my wife and my oldest son have increased in volatility, and my youngest son and I have gotten caught in the crossfire.

Irritability is common in HD patients, and mostly treatable.  She is on medication for anxiety and depression, but perhaps the dosage needs to be adjusted. My oldest son is also on depression medication (at 14).  He is at-risk, but it is too soon for HD to express in him...mother to son transmissions are usually pretty stable, so his CAG repeat count should be similar (if anything).  His main issue is that he is a rebellious (and possibly ADD) teenage boy, plain and simple.  He's got it honest...this runs in the family as well.  This is normal.  Parents deal with it all the time...but...

When it is HD versus ADD: let the battles begin!  I choose you, Pikachu?

These battles get heated quickly, and often go from zero to screaming in under 60 seconds.  It is not healthy, and I can't prevent them.  One participant I CAN punish, the other I CAN'T.  If only I could just put them both in timeout for a while (a pokeball perhaps?).

Sunday night I was on my way to the movies (my only break from home this month) when I got the call.  When I answered, all I could hear was both of them screaming and my youngest (7) crying in the background, scared.

I drove 80+ mph home.  According to my oldest son my wife threatened suicide at one point, but obviously didn't go through with it.  I'm not sure if that was real or just another attempt at control. Probably some of both.  Luckily It never got physically violent, but damage was still done.  

I visited my 7 year old first, curled up in his bed, scared.  He is such a sweet child, with a big heart.  I really hate that he has to go through this with me.  

All of this was over "missing homework".  Totally not worth it.

HD is a terrible disease. It rips away at the core of families. Everyone walks away with some scar tissue. Sometimes the torn fibers mend to form new, stronger muscle. Other times the tears are so great that only intense therapy can help with the healing. Sunday night was tough. Only time will tell which way the fibers will heal.

There are no right answers.  Only experiences and choices.  I'm unsure of our next move...but something has to change.  I've got to be able to take a break once in a while!  I need more help. Time for more therapy?

If you have HD and are reading this, know this...It is not your fault.  HD takes your emotions and kicks them up to 11...and I know she can't help it.  Parenting is tough!  I scream sometimes too.

I would recommend that If you have issues hidden under the surface, deal with them now, before they rise up with a vengeance.

[anosmic]

That Stinking Hospital

I was walking through the rotating door at UNC Hospitals and a woman jumps in with me during the VERY last second. "God, this hospital stinks!" she says. "Yes it does!" I say, enthusiastically. I honestly thought I was free and clear to make that fart, but at least she allowed me to blame it on the Hospital.

[anosmic]

Sex and Huntington's Disease

One of the biggest challenges of my adult life is coping with my wife's lack of interest in sex.  I was a virgin when we got married (for religious reasons), and I thought she was as well.  I did not realize that she had been sexually abused as a child by her HD positive uncle.  She wasn't a virgin, but it also wasn't her choice...so no one can "fault" her for this.  However, I wish I would have known going in.  I also wish I had understood what HD was and what it meant that she was at risk.  She tested positive for HD a few years ago and is currently on disability and symptomatic.

On our wedding night we were not successful in our attempts at sex, and it took a long time to recover from this.  Over the course of our 18 year marriage, we have now  averaged 3 to 4 times per year, and even less recently.  This average includes the making of our two sons, now 14 and 7.

Ultimately I believe most of her issue is a complete lack of self esteem.  She is "damaged", sex was used to charm and to harm her.  Resultantly, she has a deep distrust of men in general.  She often seems more interested in women, although I'm not sure if that includes physical attraction.  Despite my years of assurances, encouragement, and love, she still shows little interest in me sexually.  She never lets me see her naked; she is ashamed.  She also doesn't look at me when I am, even though I encourage it!  She is very angry.  I have have become angry as well.

She believes masturbation is a sin.  She also has a deep hatred of pornography, in any form.

I think both have saved our marriage thus far...but I'm not proud of it. She does not know this.  It would only hurt her further.

Over the years I have changed.  I no longer share her religious convictions.  I believe sex can be a beautiful, wonderful expression of our humanity.  I believe bodies are inherently beautiful, and would like to see and experience more, quite honestly.  I struggle with this desire on a daily basis, being married. I would never force it upon her. I am also committed to taking care of her and my children throughout the course of this monster called Huntington's Disease, if she will continue to have me.  Richer or poorer, sickness and in health, etc. was the vow, after all.

Huntington's Disease seems to amplify issues that are already there, in addition to creating new ones.  So in this instance, an already damaged situation is getting worse, now that there are additional physical and psychological challenges to contend with.  I am trying really hard to make this work.  I really do care about her.  It is tough.

[anosmic]

In order to take care of those I love, a few years back I committed myself to lose weight and become as healthy as possible.  3 years later I have lost over 50 lbs and I am in the best shape of my life.  I'm not done...this is my new addiction!

[anosmic]

Myself, on the left, in college.  We were thinking "awesome"...lol.

[anosmic]

Huntington's Disease Sucks

My wife has Huntington's Disease.  She inherited this condition from her mother, who suffered for years and died a few years ago due to its devastating effects.  This is a genetic mutation; an autosomal dominant, non-curable, fatal disease.  It exists in every cell of your body, but wreaks havoc on the most important ones...particularly the neural cells in the brain since they are the most complex.  Depending upon the extent of the mutation your body can fight it for a number of years, but eventually cells begin to die and all sorts of things go wonky.

Usually it starts with cognitive issues such as mood swings, anxiety, depression, and other behavioral issues.  As other areas of the brain start to struggle the person may develop issues with memory, processing, obsession, perseveration, or communication.  Eventually autonomic response and motor function declines leading to things like choking, rigidity, uncontrolled movements, balance and gait issues.  Your brain is dying!  At the end of it all  most patients are financially devastated, bed ridden, on feeding tubes, completely reliant upon others for their care, unable to communicate effectively, on multiple medications, and often in pain.  At that point, other than their caregivers these wonderful people have quite often been completely abandoned by many of their friends and family.  This may very well be the worst part.

I did not understand all of this when we got engaged, but have learned a lot more about it throughout our 18 years of marriage.  Having watched her mom go through this I am very aware of what this does to people.  It is a devastating, emotional disease that leaves a mark on everyone involved.  I also have two children who are at-risk for HD; each has a 50/50 chance of developing it.

My wife is already on disability from work and dealing with cognitive issues, anxiety, depression, balance, and fatigue.  She's doing her best to stay positive through this, but many days are a complete struggle.

I am committed to seeing this through to the end for my wife, and my children if possible and necessary.  However, I must admit that I am scared of what the future holds.

[anosmic]

Anosmic

I am an congenital anosmic.  I was born without the sense of smell...although my mother is in denial about that.  She told one of my siblings I simply "forgot how to smell".  I was also given oxygen treatments at a young age for RSV, but every MD I've spoken to says that theory is not plausible. I also fell out of a car as a child, but don't appear to have suffered any head trauma.  The bottom line is no one knows why, and it's "just one of those things".

I met a girl once who's mom is deaf.  One of her mom's greatest desires is to hear her daughter sing.  I totally understand that.  I'm a musician, and I would not want to trade away my ability to hear.  I would also not want to be blind!  There are so many beautiful people and places and things to see in this world...you just have to stop, look and listen.

So as far as disabilities go it's not so bad.  As a father I was tasked with changing the majority of the diapers.  At work I've been made to clean up $#!+ that no one else will touch.  Everyone says "aren't you lucky".  What they don't realize is that I would love to smell $#!+ just for the experience.  I'm not sure if I would laugh or cry, but I would certainly cherish that $#!+!

My taste is also affected.  I'm aware of what I'm tasting, but it is limited in its "description".  Some foods are really more about enjoying the aroma than the flavor...I'm sure you can think of a few.

So I decided at a young age to be thankful for what I have, and enjoy my other four senses to the fullest.  If there are any other anosmics out there, I hope you do too. 

I do wonder sometimes, would it have been better to have smelled and lost than never to have smelled before?