Tag Archives: H.D.

Getting on with life

There has been a nagging feeling of things that need to be done, but exactly what those things are swirl around my mind and it is hard to capture them, so I am left with this constant undertone of confusion.

This morning, I was able to communicate some of them to my husband. In some cases, they are simple things, like “I need legal pads.” But when I have previously thought about buying legal pads that thought was also accompanied by the desire to not go back into Staples, where I have had an HD meltdown. So the legal pad need has been going unfulfilled as I write on the back of every lined piece of paper I find. There are some other things I needed that I could pull out of my head to tell husband.

One item is a small pad of paper and pens so I can write down the other things as they come back around!

I fell out of bed a few nights ago. I was sleeping like a rock and landed like a rock, too. It scared me, but I wasn’t hurt. I have been sleeping with a fortress of pillows around me or on the couch ever since. My husband is going to buy a baby gate to go on the side of the bed. I hope that will keep me from taking flight again. A friend of mine sleeps with his bed on the floor so when he falls off, he won’t have as far to fall. I think that is a pretty good solution, but like having the bed up, just because I am used to it and heaven forbid I try to change anything I am used to because I will stress over that.

I have discovered that being around people who I don’t know well is exhausting and I am very averse to it. Because I have an invisible disease, I wonder if and how many times I have met people. I wonder if I have told them about me, or if they already know. Yesterday, I dropped off some stuff at a neighborhood picnic and the difference in my level of comfort was so dramatic between the people that I knew well and those I knew by sight. It was a stark contrast. I was stressed out being around strangers in a setting where my reactions to their questions might make them uncomfortable.

In general, I am moving forward and am trying to do so positively. I have lost over 40 pounds (I am overweight) and each day I pretty much wake up cheerful. It just gets harder as the day goes on.

Sometimes, if something that is not routine occurs or something suddenly annoys me, I will take an extra mood stabilizer to prevent HD’s irritability from taking control. I had written “my irritability” but decided that I am not going to claim it. It is the disease that has installed the pressure cooker into my emotional center.

There is a woman who I wrote about in a blog about a year ago who introduced herself to me again and again until I finally started remembering her name. Her name is Vana, and she has become a beloved friend. She is headed off in the next few days to spend a year in St. Lucia to pursue some dreams and my happiness for her outweighs any sorrow so far because I am proud of her gumption and courage. I know it will hit me later.

Vana, I wish you the greatest adventure of your life, and thank you for becoming part of my family.

Thank God for the internet, right?


Closer to fine

After a few dicey days

or maybe they were weeks

or maybe it was the whole summer

I see a bit of light.

If I follow it, I think it could help me escape from where I’ve been trapped, an emotional cage that has felt like the hot, dark trunk of a stranger’s car.

I’m taking the extra, discretionary pill. I’m doing the exercise. I am following suggestions.

And even though I forgot to wash out the conditioner, I took a shower.

As recently as last night, it could have gone either way. But I am feeling some clarity that I’ve missed for a long time and I’m holding on to it. I am thankful today to be alive and to be able to have another pass at enjoying life.

So many people I know have lost one or more family members to HD recently and there are also some families that are winding up for that final unraveling.

To the Valvano family and the other families who are preparing either to memorialize their loved ones, or to bear down and stay with them through the end, I have thought about you and prayed for you often. I’ve remembered you, even while in the trunk. My thoughts have often been about you and the love that you feel for your loved ones and about the love the HD community itself emanates.

And somehow, wanting to stretch my arms across the miles to hold you has helped bring me closer to fine. 


Me to HD: It’s not you, it’s me

I person I trust has told me that I have been manifesting depression and anxiety, not as part of my symptoms, but because of them.

It’s hard to wrap my mind around the fact that a departure from depression and anxiety will reveal that I am functioning better than I thought.

And that my brain is not melting.

I have to cut myself some slack and realize that living at, for example, 75% of my functioning capacity with a good attitude will yield a better me than freaking out over, say, 95%.

During the past week I have learned a little bit about what it takes to get me to do what it takes.

I’ve learned that I need to play a bigger role in my expectations for myself. I have made a schedule for myself consisting of the things I want to do every day that would make me happy.

I was as surprised as any one that I conjured up such a list. It’s a list of things that a happy person living a good, balanced life would do every day.

It is not my visual reminder.

It is not my promise to others.

It is not my tool for self flagellation.

It is something to work toward. I know that there are medicines that must be changed because I am still having difficulty, but I have to make the day to day success my responsibility.

Who else is going to be responsible for it?

If you didn’t listen to WeHaveAVoice’s  “All About CAG” radio show, I recommend it. It’s one of those recordings that I will be able to get a lot out of for years to come and I plan to listen to it under a variety of circumstances.

But what Dr. Lange said that spoke to me the most today was that the best thing I can do for myself, as a person with a CAG of 40,  is to lead a happy lifestyle and aspire to go to bed each night thinking that the preceding day was pretty good.

I am going to try this approach and while letting the HD do whatever it does.

Sort of like we’re taking a break.



What it feels like when things go wrong

I have been having severe psychiatric symptoms and have been asked to describe them, and am finding it to be difficult.

Yesterday I told my husband that it felt like the emotional equivalent in intensity and horror to the pain I would feel if one of my eyelids had been pulled around my head, down to my neck, leaving behind my skinned, painful head, unable to see anything.

I know that is not physically happening to me, but it’s the emotions and the pain that I suspect I would feel if that happened to me that I am trying to encircle with words.

It’s really important that I describe it in a way that make sense so the doctors will know what kind of drugs to give me. I guess whether I need to keep taking anti-psychotics or switch to mood stabilizers.

There are at least two parts of this emotional crisis:

One is this emotional pain described above. Another way to describe it would be to compare it to how I might emotionally feel if my fingernails were being pulled out slowly, one-by-one, only worse.

So this is constantly going on, and it manifests as my own screams and shrieks filling my head. I want to go through the house screaming and shrieking out loud, but I hide myself away from everyone else and it feels like my head is going to explode with the constant suppression of the screams of emotional pain.

The other part of this crisis is like a cloudy, smoky feeling of doom that washes in and swirls about while the first part is going on. It does not use words, but it communicates to me that I cannot handle much more of the first part, but warns that it may never stop. In fact, it could get worse and I could spend my life trapped in the first part with the second part swirling around. And that adds more panic and hopelessness.

Since I have been in crisis, these two parts have always been actively going on but I notice that it is quieter and easier to tolerate in the morning. It gets louder and more painful and harder to bear throughout the day until the evening when I run up to my bedroom, strap on the bipap (sleep apnea) machine and take deep, deliberate breaths until I fall asleep.

I hope that this description, along with a doctor’s visit, will result in some new meds and an end to this crisis.



Risky business

If you knew me in high school or college, no, I am not engaging in any of those antics! Instead,there is a disconnect in my brain that I’ve  been noticing, which can be best illustrated by the fact that I used my fingers instead of utensils to fry bacon in hot grease this morning.

The HOPES page on HD behavior symptoms shows in Figure W-2 the way the caudate relays information to the frontal lobes. Two women look in the mirror and think “My hair is long.” The one with the normal brain soon after thinks, “Get a haircut,” while the woman with the impaired brain thinks nothing about it.

I am the second woman.

This morning, to start things off, some of the plastic I had removed from the raw bacon had fallen into the heating pan and I reached for it and grabbed it out before the heat melted it. Then I just continued to use my fingers, because I they were already being used for that purpose, to arrange the raw bacon on the hot, grease-filled pan and to move it around. I used my fingers to rearrange and position the bacon until hot grease was splattering on my face. So I reached into the cabinet and pulled out one of those screens that you put over chicken when it fries. It was only after this point that the thought entered my mind that I needed to use a fork or some tongs to finish cooking the bacon.

Now, a few hours later, I have shiny fingertips where the fingerprints are less pronounced.

This disconnect plays itself out in different ways in my life. I will walk by a piece of trash and not think that I am supposed to pick it up. I will see my stringy hair and not think that  I need to wash it.

The odd thing is, I’ve realized that this is going on before, but because the part of my brain that realizes such things is not related to fixing the disconnected part of my brain, I continue to engage in the same risky behavior, or don’t do things that are apparent to others need to be done.

Just because I am aware that my behavior is inappropriate does not mean I can alter that behavior.

But maybe I’ll skip the bacon next time.


Flipping the HD switch

Yesterday started out like any other day, with the potential of being a day filled with hope, productivity and love. But for me, with HD, all it takes is for something to flip a switch, and everything is overtaken by the worst feelings of despair and foreboding.

The smallest negative thought yesterday morning flipped my switch, stole my day of promise, and rammed my will into what felt like a barbed, cramped metal container. I spent all day trying to break out, to outsmart, to out-wait the sinister captor.

No sleep came to provide respite. No arms were available with the exclusive purpose of holding me. The only voice that I could hear was my own, and the best advice I could give myself was to wait it out.

It would relent at some point if I just waited it out.

Towards the end of the seemingly endless day, I sat on the same couch where the switch had flipped twelve hours before.

This time I was medicated for the evening and was prepared to distract myself with television images until I was sedated enough to go to sleep. An end-of-a-bad day  game that had worked plenty of times before,  but failed this time.

Instead, I acted impulsively and inappropriately then lashed out at my family. I stomped upstairs and flung myself into bed. My husband was at my side shortly, and I acted out some more.

Then I felt so ashamed about everything. I had spent all day trying to fight my way out of the metal container, and was only then hanging my head out to draw in desperate breaths of the reality I had so longed for.

But in my quest for it, I had tainted it.

Today I am tired.

My brain is like a floor filled with mousetraps and I’m afraid to take a step.

Walking with HD

My walking is deteriorating rapidly. I thought since I am losing weight, it would make moving easier. And it has to some extent. But as there becomes less and less of me to heft around, more and more, I’m feeling like the scarecrow in The Wizard of Oz. My legs go one way while my arms go another way. Meanwhile, I watch to see which wall or doorway I need to grab hold of to keep me upright or on course.

The only people in the world who have acknowledged my deterioration in this area are my sons. My youngest son lives with me and seeing me stumble around is just another day in his life. “You OK?” is a phrase he utters a hundred times a day. My husband is vigilant, responsive and never complains. I am grateful and I feel loved.

My two older boys live away from home. Recently, we were together in the NC mountains (at my friend, Nina’s house) after being apart for a couple of months and I think my sons were a little shocked by my decline.

My older boys, I noticed, were never too far away. When there was a stair to climb, a hike to attempt, and darkness to negotiate with, one or both sons were there, asking me if I needed help, extending a hand, or simply grabbing hold. I was grateful and I felt loved.

But the thing is, nobody came out and said, “Gee, you’re getting worse.”

People don’t like to say things like that that.

Still, sometimes I think I need to hear such remarks so I can better avoid avoidance and deny denial.

I wish someone would walk up to me and say, “I can tell it is getting harder for you to walk. I know it must really suck.”

No “I’m sorry” is necessary.

Just affirmation of my reality.


Greetings from oblivion

Bad people are doing mean things in the world.

I sense it only as a faint tugging at my heart.

A feeling of homesickness for a place that never existed.

I hurt like I have been pulled by an angry ocean wave.

I am dazed as if I’m riding a two-day hangover.

I want to see my friends.

I can’t talk to any of them.

I want to be alone.

There is none of me left.

So, even alone, I’m left with no one.

If a fleck of me flickers by, I’ll grab it.

And try to mold it into my game face before it dissipates.

Until then I will pile sleep upon itself.

Folding away the danger of being understood.

The elephant in the room is me: Fat with HD

I gained a lot of weight with my first two pregnancies and I made the effort to return to my previous size after each one. But I was 39 when I had my third child, and this time it was different. I felt too tired to do anything about it. All of my attempts to change my lifestyle failed and, as the pre-testing problems of just living life day-to-day ensued, I used food as an escape, a comfort, a drug and a weapon.

When I found out I was HD positive, I had a lot of negative reactions and eating and inactivity were among them.

I spent years wondering if I was punishing myself with food, or if what I was doing was giving myself one last hurrah every night because who knew if that tomorrow would be the day I descended further into hell. Now I realize it doesn’t matter why. What matters is what I do next.

For a long time I avoided being photographed, but realized that an important part of shouldering HD, for me, is the obligation to leave behind ways for my kids to remember me when I was a participant in their world. Being fat does not disqualify me from leaving behind a record, so I have pictures of my (fat) self all over the place. When I look at them I am stunned.

My kick-ass therapist got really basic with me a not long ago about my weight. Intervention basic.

She knows that doctors don’t mind if HD patients start out a little heavy, but I was stuck on a seemingly unstoppable conveyor belt of gaining weight. I couldn’t wear the fat clothes I had bought to replace the fat clothes I had bought to replace my real clothes.

She told me she was sure that I didn’t want to be someone who could not get out of bed due to excess weight.

I immediately thought of myself as the mother in the film, “What’s Eating Gilbert Grape?” and suddenly the fact that I ate ice cream every day was not a joking matter.

That was about a month ago and I am making some changes. I have found an alternative way of eating that binds me to a routine, which has been very helpful. I have one Facebook friend who lost a lot of weight and, while we’ve never met face-to-face, she has been inspirational by sharing her journey and through offering unconditional encouragement.

So far I have lost about 12 pounds! That is about the size of 2 toy poodles, and I still need to lose a German Shepherd dog’s worth of weight.

My cholesterol and triglycerides had been sky high even with a high dose of statins, but now they are low normal, so my doctor has cut that dosage in half!

Activity has been harder, so I have lowered my initial goals for myself to engaging in exercise at least twice a week and actually walking my toy poodle around when he must relieve himself instead of standing on the porch holding the leash.

I realized that, even though the fat might have protected me and helped me hide, I don’t need it anymore. I have been fat all of Mark’s life. That’s eleven years that I didn’t chase him around and Randy had to take up the slack.

This isn’t the last time I’ll write about my weight loss journey.

I am sure I will do a lot of naval gazing, especially when I can see my naval again.


The sting

It starts out innocently enough.

I am usually congratulating myself for following a routine.

Feeling success in my own complacence.

Building a wall that separates who I think I am from the damage that I cause.

Then I do the exact thing that causes disaster, as if I had been planning it for months.

I do something I had promised mere hours ago to never do again.

I am listening.

I am really trying to listen.

I really thought I heard it.

But in truth, it takes an ice pick to chip away my wall, so I can hear and register what is being said to me.


Then I am exposed and the truth stings like the hard flick of a wet towel on a baby’s cheek:

The person I love the most is choosing to have his life destroyed by me. That is not only his conscious choice for the future, but that is what I am doing to him now.

I can’t stand to be inside myself and I tell him to leave me, to let the world scoop me up and put me elsewhere. For him to start over and be happy.

But (thank God) he won’t. He stays and I feel guilty that I am happy that he chooses to continue to suffer. I wish that HD could impact only me and realize that most of the time I am under the misapprehension that it does. Only occasionally does my wall of denial crack sufficiently to let in the truth. The disease will suck me back to oblivion before too long. The lack of awareness that is part of HD will return and I won’t realize what I am doing to the love of my life. To the most important relationship I’ve ever had. And it won’t sting anymore because I won’t remember.

But I’ll keep hurting him, just the same.