So this is onset

It’s been a while.

Harder times have come to stay. I have extreme chorea now which I didn’t expect to happen so early. I had to go off a medication that apparently had masked it. I found out that the mood stabilizer I had been taking for 13 years was the reason for my extreme OCD. The buying of houses and cars and food and stuff that I couldn’t stop. I couldn’t be quenched. I learned the lesson that no medicine should ever not be reevaluated.

I can’t take terbenazine because of suicidal side effects.

The movement is untreated then and that’s ok for now.

I am never still.

I have cramping and flapping of my legs most nights during sleep. I’m trying to figure out a way to nip that in the bud.

Before I had weeks and months to research and plan but now the details of the decline require so many competing real-time mental demands that I got tired and frustrated if I don’t just stop what I’m doing. it’s more satisfying to listen to music than to do social media. I’m always looking for the next musician or song to listen to.

It’s going to be tricky figuring out how to cope with every function on the fly.

I’m streamlining the writing and talking and am much happier when I can just sit quietly and be and not have to operate my body. I view it as a coping mechanism rather than a failure or an apathy. what I thought was a wretched doom turns out to be self care.

I’m very happy with my life other than the above. The mountain environment and being able to hang out on the deck with both dogs is satisfying.

The happiness of my marriage has always gone without saying but I am learning that it is important to say things while I can. I miss the kids. At the same time, I find myself with the chance for one on one time with Randy in unlimited supply. And that brings me more happiness than anything ever has or will. I am grateful for every family member and friend who has kept me in their life. I waste no energy worrying about anyone else.

I have an active blog at the Teva Life Effects website where I describe different aspects of HD. That uses the energy that I used to put into blog entries here. Have enjoyed interactions with all of you folks and I wish you peace.

Declining on all fronts

But I am still me.

I feared that when it really kicked in, I would become another person.

The terrified person in my nightmares about the future.

That future is unfolding.

I have chorea now. Involuntary movement of my arms, leg, feet, trunk.

But they are the same body parts I have always had. I observe them changing and we adapt and adjust. The walker is now an option. Ramps are needed for thresholds. I use the walls as handrails as I go about my day.

Because of some other bad effects, I recently stopped taking Abilify and that’s when it started. The neurologist said that the Abilify had likely been masking the chorea and that’s why it cropped up as markedly as it did. I had envisioned a year of trembling hands. Then add a moving foot for another year. That sort of pace. I feared the horror that each change would bring.

But there is no horror.

It’s still my body and I am still me.

If and when the movements become too extreme, too dangerous, I can add another drug, most likely Risperdal. But I don’t mind the movement. It doesn’t scare me one bit.

And that surprises me.

I’m not (yet) being invaded by some unknown threat. HD isn’t the monster, I have learned. Fear of HD is.

The decline is like receiving a new member of the family that Randy and I have long prepared to receive. We are ready.

I thought that when this happened it would emotionally devastate me.

But it hasn’t.

And not because I am battle-hardened.

Its no secret to me that this decline is playing out. But I still keep my daily routine, and maybe I am treating my body a little kinder these days. I’m grateful to it for rising to the challenge. I no longer revile it’s imperfections.

That’s because the greatest imperfection, the CAG expansion of 40 in my DNA, is expressing itself as expected.

And I am still me.

Instead of feeling some urgency to escape myself, I am embracing myself.

I have come a long way, and there’s still so far to go.

But it’s the best and only life I have.

I am looking forward to it.

x=ytry?

I remember when it happened. The first time I tried to figure out something and it was so hard I gave up.

It was in Algebra 2. I thought and thought and it just would not compute. It was so unpleasant that I decided I didn’t want to spend periods of my life feeling so overwhelmed and confused.

So I stopped trying.

I had already started drinking by then. Drinking gave me an excuse to not try and to not care that I wasn’t trying.

Fast forward to now.

It’s harder for me to do things now.

Thing by thing.

It hurts to try until I give up trying.

I sit on the couch and wait. Wait until I am unable to go have lunch or shop for clothes or go for a drive or hang out with the boys. Those are the only things that are not noticeably muted, emotionally and physically draining, or completely daunting.

The only things left.

Everything else I have to remind myself that I can still do.

I am really able to brush my teeth and shower but it’s so hard to do that, it’s painful and I give up doing it. The same way I gave up on algebra. I can still take a walk but going outside turns my skin and my soul inside out.

If I get beyond the pain of the quick ripping off, those things actually help me.

To walk and to brush and to shower.

But afterwards it hurts. Like being out in the sun too long. Like wallowing in acid rain.

And it takes days to heal, but never quite heals all the way.

So every time, to avoid that old familiar discomfort, I want to try a little less.

A moment

I dropped a piece of tissue and picked it up off the floor and it fell out of my hand. I picked it back up and it fell out again and again and again. I leaned forward to grab it tightly and I knocked over the trash can. I staggered trying to refill the trash can because I was dropping and dropping. I left the bathroom and nobody saw it.

But it really happened. It’s happening. A kajillion times a day.

I’m in danger of cracking glasses and plates that just want to be cleaned and put away with no molestation.

I fill out a form and it feels like I’m using the pen for the first time. I’m no longer connected to the movements it makes.

That was more than one moment, but who is counting?

Check out my other blog too

https://lifeeffects.teva/us/articles/hd-me-and-rupee-life-with-my-new-service-dog

Trying to see the world differently

I still wake up every morning and think the test was wrong. That I’m not going to face the downfall. Even though having HD now permeates my dream life, an unspoiled me wants to wish itself into existence.

I’m trying to make life slow down. It’s speeding too fast and soon it will be what I am never going to be prepared for.

Braking is impossible, so I must accept it. But when I compare my life to what it was supposed to be, I beat myself up for having symptoms that interfere with accomplishing things and feeling sane.

Things would be better if I could reframe the way I see my life going, and stop comparing my accomplishments to those of others or to the me whose test was negative. The ability to not give a damn about what other people think would certainly come in handy, and I am working on that too.

So tomorrow I hope to give myself a break and define what a realistic successful day would entail. The bar can move according to whatever my energy and clarity permit.

And that should be enough.

That should be OK.

It’s time to forgive myself.

I didn’t lose.

I was simply born.

Top 10 reasons I feel good about having Huntington’s disease

1……I will meet a lot of new people.

1…I get to practice what I love daily but become less proficient.

3….I will never be called for jury duty.

2. …..I will finally lose that weight for good.

3…,.There’s no such thing as an old idea.

4…..I’m starting to think I actually do know everything.

$.,,,,I am stripping off the unnecessary functions.

7….,.I get to drink through a bendy straw.

7a I have a whole collection of bendy straws.

8….. I will finally stay off social media.

8) I don’t have to cure writer’s block.

9!!! No more of my self-piteous posts.

And finally:

10: I get a pass on saving humanity.

When sorry is not enough

I feel unconditional positive regard for people who I am friends with. Forever and ever.

Many of those friends have cut their losses with me over the years, starting as early as I can remember.

Those who rescue the discarded me eventually feel their lives derailed by my train wreck of a disease.

They bail or they fade silently into the background, mistaking the latter approach to be the humane one.

What is left of my brain thinks that people are entitled to the lives they want.

But dementia and perseveration
lead me to dwell on the bad decisions that I have made. After a certain point, sorry didn’t make things go away anymore.

If anybody still misses me back, I could sure use some emails, phone calls, or visits.

Thanks for listening.

HD awareness month: why nobody cares

I no longer know what to say.

I have said it, shared it, linked to it, begged for it to be read and shared, and wept bitterly when it was ignored.

All of it was ignored.

Less relevant than yesterday’s lunch specials. 

My soul deflates when I am in this valley. The place I come to mourn the world’s inability or refusal to acknowledge Huntington’s disease. People see that I am here again, but they step politely over me, because everyone else has.

I saw a video today of a starving, traumatized, feral dog who was running down a war-torn road, hoping against reason to sneak into an oncoming Jeep. The dog had strained and ruined those lower, adorable vocal registers that would have instinctively caused humans to love it. 

Instead, its voice was so repellent that it scared itself and everyone else. The dog was both horrified and horrifying. And so unlike a dog. The opposite of a dog. 

The situation in the video seemed so unfamiliar until it didn’t. It became my oversharing, misunderstood pleas to strangers to validate my existence by lifting the HD battle flag. The familiar smell of their revulsion. The bittersweet scent of escape trails to happy places. Another sideshow by the unbearable but unavoidable me:

The antidog.

But let’s say your wife won’t leave home without noise-canceling earplugs. Or maybe you have spent the perfect amount of time curating interviews that show the gifts we get from HD.

Enjoy it.

Work it until it stops working.

Until you, like me, hit the cold, inexorable truth that underlies it all: invisibility is inescapable.

There’s just no way of knowing whether people see your world at all, much less in the nuanced way that you crave.

But invisibility is powerless without its buddy alienation. 

To cast off alienation, simply let yourself wonder how many other invisible folks are out there.

Packs of antidogs leashed together by a diagnosis. We can take comfort in each other, whether we’re stepping off on the good foot (you) or wallowing in surliness (me).

***Note: This post was originally pitched to HuffPost Personal, where it was overlooked especially for the occasion of HD Awareness month.

The real HD— guest post by Malachi C.

Back again after a period of silence to post yet another overly long, long-winded thought process of mine about an issue with HD. Quick disclaimer that I use “we” speaking about people experienced with HD. I’m untested so I say “we” as in us that know HD on a personal level, either because one is positive or has been a caretaker/had a close bond with someone with HD.

It frustrates me how devastating this disease is and yet, it’s still underrepresented and educational resources are limited. I understand that the rarity and hereditary component of the disease plays a large part into this. There is more of a general focus on medical conditions like cancer and Alzheimer’s because in a simplified way, “anyone” can get these illnesses and it is relatively far more “common”, thus you don’t have to search far to find someone who has had personal experience with it. It is rare for someone to have HD without inheriting it. Random mutation is possible, but not a frequent occurance.

I’m not saying that more common medical conditions don’t deserve all the resources, research, and awareness they have… I simply wish HD could be given the same treatment. It’s an awful reality that assets/funds in the medical field are a limited resource that has to be spent wisely, so many conditions lack fairer allocation of funding and attention brought to them.

It’s vexing as a person who is trying to raise awareness… or much more simply, trying to explain the reality of it to friends and others that know nothing of the disease. It’s hard to find footage of decent, substantial quality that show how the symptoms manifest. Presentation and intensity of HD symptoms are highly diverse and nuanced, yet there is little to no documentation of the spectrum.

If you go on YouTube and look up videos about Huntington’s Disease, the majority of them are basic educational videos regurgitating the same information you can find on Google (Mayo clinic, hdsa, etc) and textbooks. Detailed medical jargon about the biology and genetics, as if that means something to the average person. Listed symptoms are the clean-cut, voted upon clinical description of HD that tell you of the very simplified symptoms of the disease but little about the real life experience. The created image is a very basic one.

Maybe this is selfish of me, but I wish I could send someone a video of a person with HD and go “here, this is what my mom was like”. It’s emotionally draining having to explain what it’s really like. Digging those memories back up and exposing myself to the pain all over again, forcibly reminded of the utter injustice that tortured my mother. I actively lived it, and yet, I still struggle to find words that make sense to someone without any knowledge of HD and paint an accurate picture of what I saw. I have tried to spend lengthy amounts of time devoting deep thought into my descriptions. It never feels like it’s enough. It never feels like the other person is actually aware of how terrible, how bizarre it was to witness this.

I don’t know how to describe her chorea well. Clinical phrasing wise, she had the involuntary, jerky movements and dis-coordination. That means very little to me, hardly anything, and saying that to someone feels like an insulting downplay. I try my best to clarify and emphasize that these movements were constant. They weren’t like tics or had pauses. She did not jerk, then 10 seconds passed, and she jerked again. When I say constant, I mean it. She never stopped moving. There was no stillness to her as long as she was awake. It wasn’t like a tremor either, she didn’t tremble when attempting actions. Her hands and arms writhed and flailed in a never-ending flow of uncontrollable action. Twisting, turning over, rolling, rising up and down…

That is only about her chorea in her arms. I haven’t even touched upon the way she shuffled her feet and moved her head. Other physical symptoms like trouble swallowing and forming speech. It takes so much to describe how her arms moved about. How much time do I have left with this person listening, and emotional fortitude remaining, that makes me able to tell the full tale of the absolute hell that’s the cognitive symptoms?

I can simplify it, use clinical words… I can say she had memory problems. But that’s not doing the truth justice. If I want someone to truly understand, I need to recount how her short-term memory was shot. She will walk in the room, ask what time we leave for the movies, and walk away. Few minutes pass. Come back in, ask again, leave. Few minutes pass. Come back in, ask again, leave. Come in, ask, leave. Three times, five times, six and seven… then she goes tell grandma the wrong time after all that. At a certain point, you almost want to hang your head and laugh! It can be ridiculous and there are times embracing that is necessary to stave off frustration or despair. I also have to explain that her long-term memory of info prior to developing more severe symptoms, in comparison, was remarkably in-tact.

Seems like I did a good job, right? That took time and many words. All that for one symptom out of many more I need to describe. It’s hard. I don’t want to have to do this every time. It gets exhausting. It can hurt. Even boring and tedious, I’ve explained so many times I feel fed up with it at times like it’s a topic overdone. I’m also human and forget things. Offline, I’m not eloquent or well spoken. I’m only like that now because I’m typing. In person, I stumble over words, get mixed up, can’t stay linear with a guideline on how to approach everything, and I can become distracted. I don’t come off as someone saying profound things, I come off like I’m struggling. It’s frustrating, it’s disappointing, it’s… just how it is.

I want videos to be able to send that show the uncensored truth. I want documentaries that show the quirks and nuances. I was in a neuroscience class and we watched a whole documentary on a few people with Alzheimer’s, following them around their life. One elderly man remembered little of his life and couldn’t understand anything about what was around him, nor what he was doing. But put on a song tune from his past and he sung like he never aged a day past the time the song was important to him.

Meanwhile, when we discussed HD, the clip we were showed wasn’t even someone with HD! It was someone with a condition that caused chorea like HD’s. I felt cheated. Obviously, we exist. My mom existed, I exist, you all exist. Where are we in media? Where’s the evidence of our lives and footprints we leave? If someone with Alzheimer’s can be followed around by a camera crew so every detail is caught for display and this is deemed ethical, where is that level of dedication for people with HD?

I know we have resources and creations out there, but most of it was unsatisfying to me. I want more, I believe we should have more. Bigger, greater, products immense labor and care. I want the real documentaries with real footage. I want books that has accurate portrayal. I saw a summary of a book once where the main character’s mother had HD. She hated her mother. How uncreatively effortless… Resentment does arise in us, but why and the complexity of it is much more than simple hate.

I want movies and tv series. Much of the usage of HD in media is inaccurate, insulting, or both. First time I heard HD mentioned on TV, it was SVU. A main character said if she was at risk for HD and ended up positive, she’d kill herself. My mom was watching. She had attempted suicide before. That was our scrap of acknowledgement. Passing mention that HD is so bad, suicide is the obvious solution. How, what, and why? It was ignored, not seen as value. We’re used for angst and drama in a plot and nothing more.

I wish I could do all of this myself. I had a dream once about having to take care of my mother during a zombie apocalypse. It would make a great book. I wish I could write it, but I’m not that type of writer. I wish I was famous, I want more celebrities talking about us. I want to be a celebrity in the eye of the public who can use their status to draw awareness to the disease. Mainstream and relevant, making news. I wouldn’t let people forget about HD.

But I have nothing that would make me famous.

At the end of the day, I simply wish we had more. So people knew we existed, so people understood what we go through. So we have more to share, so we can be a talking point. It doesn’t matter how rare the disease actually is. All the suffering and love we’ve gone through justifies us being give more.