Huntington's Doesn't Take a Holiday

Mood 4.0
Anxiety 4.5


Its my honeymoon and I've been locked in bed all day. What gives?

Before I left I amped up all my medication. This is a very hard time of year and I didn't want anything to get in the way of my honeymoon. I did pretty good until earlier today, the 23rd

The Pregnant Everly Brothers-"Common People"

Local Sheffield Band

I woke up this morning with my mood dropping quickly. I was depressed with a capital D. The first thing I did was get some food down me. By the time we were done eating my mood wasn't getting better but in fact I was near tears. I excused myself and left to go back to our hotel room which had been serving several purposes including rest stop so I didn't burn out from pushing myself too hard during the day.

Mormon Tabernacle Choir - "Do you Hear What I Hear"

So here I am at the Grand Californian smack dab inside a Disneyland Park and I can't get out of the bathroom.Actually, I choose not to leave it. My wife doesn't need to see me cry on our honeymoon.

Christmas at the Grand Californian 2009 

(Thanks to Mice Age for the photograph)

Tonight's Double Feature: Andrea Borceli

Gloria in Excelsis Deo-Andrea Borcelli

After being able to dry the tears I left to enter our room again. By then Jane was reading my Kindle so I picked up my telephone and got on Twitter. 

Andrea Borceli-"Handel's Hallelujah (Sacred Arias)" 

After half an hour just laying on the bed doing our own things and enjoying the quiet company of each other, my depression turned into my gut like a nasty skeleton key into paralyzing anxiety. I crawled onto the bed, laid down on my side and stayed there frozen.

It took two doses of Xanax before the anxiety subsided to a controlled state. At that point I was able to read. Yes, it took that much medication for me to be able to put two sentences together. 

Cranberries-"Little Drummer Boy"

This went on throughout the evening. I'd be able to dose enough to get a specific task completed before I would freak out again. The anxiety didn't break until 1 am, four hours ago. 

The good news is that it did break, and we have a few more days to enjoy each other's company before its back to the old grind. Let me tell you, though, I really wish Huntington's had decided to take a holiday.

Amy Winehouse-"I saw Mummy Kissing Santa Claus" 

Merry Christmas

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too. 

Scales of Judgement

I was invited to an out of town meeting tomorrow and I'm going to attend. I haven't told my fiancee yet and I know she's going to raise hell. 

This is how I'd see it if the shoe was on the other foot. I'd be really hurt. Here I was taking care of her and as soon as she feels half decent she's willing to run off at the first minute, forget how my concerns, since her only concern is that she wants to have a good time.

Roykopp - Happy Up Here

Looking at it that way I'm feeling really bad about my decision to go. On one hand I really just want to get out of the house, even if it means leaving early and getting home late.  I'm  willing to take precautionary measures including drinking Gatorade in place of soda, a lunch I can chew in small controlled bites so I don't swallow it the wrong way, and isolating myself away from the others including meal time. 

Okay...Time to pull out those scales of judgement.

So the question is...Is this an acceptable risk? The off top answer is no. There is no positive. Then the only positive is what I term the mental health factor. So lets weigh that in. What opportunities does this activity give me that I don't get with others? People interaction is good, as is brain activity. I can get both with other activities but this group, which is a workshop for non-profit board I serve on, is a good way for me to get both at the same time, and a really high combination of both.

Now on the scales the answer is "I'll ask my fiancee what she thinks is a good idea" and hope she doesn't kill me with one of my own heavy books LOL.

First Half of today's Double Feature

Mormon Tabernacle Choir-"Gloria"

And another Christmas Favorite:

Mormon Tabernacle Choir-"Hallelujah"

Next up, Monday I have to make an appointment for a swallowing test; I'm not looking forward to this, nor the therapy that I'm sure will follow. After all of this, most likely I'm looking at a feeding tube down the way a bit. 

Elvis Presley-"Silent Night"

I've never been a fan of artificial nutrition. In fact my current advance directive has "No feeding tube"  or its cousin in three separate places. I've always assumed by the time I would need it my mind would be fairly blown and my body was obviously following it closely. At that point to deny me a food tube would be a form of passive euthanasia. Well, now it appears that my HD is taking another tact, continuing to hit my emotional mind but also my GI tract. Meanwhile I've started the DNA analysis at the IVF clinic and my fiancee has her mind on our upcoming marriage. 

Gene Autry-"Rudolf The Red Nosed Reindeer"

So my question to put on the judgement scale is 'Should I tell her about my concerns and feelings or continue to act that everything is going fine, hoping the wedge between us isn't too deep.

This one seems answer itself. I need to tell her. If I don't she will notice I'm holding back from her. I've never been good at that. Its a guy thing.  Women can always notice this and pry it out. Its not a question of if, but when. If I want it to be on my terms I'm going to have to tell her. The key is to remember I've put her through a lot, I don't need to make this a whole 'nother issue entirely. Add it to my  concerns about pneumonia or something. 

Annie Lennox-"God Rest Ye Merry Gentlemen"

Okay, lately I've been enjoying listening to Roald Dahl. Tonight I'm listening to The BFG. Dahl is one author that's constantly good on the audio-books I've heard. The other is Fleming (Ian Fleming). Its odd as both authors are associated with James Bond. Fleming for writing the original set of novels and Dahl for writing the script for the film Live and Let Die

Live and Let Die Title Sequence

McCartney & Wings-"Live and Let Die"