Category Archives: Uncategorized

The miracle of amantadine

This drug has and is changing me and improving the quality of my life so I wanted to write about it.

First off, I got hooked up with a psychiatrist at Duke who specializes in treating degenerating brains. In fact, he bases himself at the brain tumor center and sees HD patients only occasionally.

I could write a whole blog about what a wonderful experience it has been to see a data driven psychiatrist but I am here to talk about the drug.

Amantadine is used to treat Parkinson’s symptoms and a variety of other things, and My doc told me that in some people with HD it lessened perseverations. It is a hit or miss thing. And with me it was a hit.

The biggest and best change is that my obsession with eating is gone and I am able to follow my diet with no stress. I am losing the weight I need to lose and that’s the primary reason I tried the drug. But there are more benefits!

I am able to let things go that happen instead of dwelling on them. With all the energy and brain power I have leftover from all that perseveration I was doing, I have resumed cooking. In fact I am cooking ahead and freezing meals on the weekends. Never ever would have happened before.

I don’t want things like I used to. I would get fixated on a dress at my favorite shop and we all knew I was going to buy it and I did. But now I get what I need and leave it at that.

Randy says it is turning me into a new person, and I like her and feel totally comfortable in her skin.

There are still challenges, like my memory, but I am doing better than I have in years and really hope that this period will be a long, happy one.


Why I am averse to bathing

You could say that it approaches being an “ordeal” to get me in the bath or shower. Those who know me the best have heard my excuses and/or seen my displeasure before, during, and after.

I knew HD was behind it somehow. But I just figured it out the other day. My body was malfunctioning somehow on that other day, I already forgot what was wrong. But it was bad enough that I decided a hot bath would fix it.

So I filled the tub with nice, warm water and got in and nothing happened. I mean nothing. And I noticed the nothing.

You know how when you get in the warm shower or bath your body automatically relaxes?

Kind of like that “ahhh” after the first sip of the first beer of the day.

My body didn’t relax. In fact, it tensed up. I stayed in there for a looooong time and no relaxation happened. It was only after I got out and lay under blankets in the bed did my body start to have the relaxed feeling the bathtub or shower used to instantly trigger.

No wonder I have been avoidant of taking baths and showers. It’s like a secret my body has just decided to reveal to me.

But I don’t know what to do with this information. I suspect that if Randy chews on this long enough, he’ll come up with a workaround, a solution. The same way he figured out that I wasn’t getting suicidal on the way back from road trips, I just had to pee and my brain circumvented the information.

Anybody else have similar issues? I’d love to trade comments with you.

Keeping it simple

My ears have deafened to the siren’s call of social media. I didn’t plan it or want it. It just happened. I noticed that when I looked around and saw other people with their phones up to their faces, I felt vaguely nauseous and sad for them. At the same time, I started picking up my phone less and less.

I have a new collection of priorities but that doesn’t mean I love my online friends any less. In fact, now I spend time thinking of how I will talk to them on the phone to hear their voices, even if I forget our conversations. I have fantasies about visiting them, whether they be elsewhere in NC, Florida, the West Coast, the UK, or St Lucia.

I crave old school contact with humans. The rarer but lasting memories. The hugs and face to face. The physical “like”, the audible “lol”.

In my daily life, my husband left a 24/7 job as a newspaper editor and now he works from home. My favorite thing in the world is to be in the same room he is in. So I am happy much of the time. Content. With all I ever wanted in front of me.

Visiting with my sons has become more powerful. Tears of happiness are forming in the corners of my eyes just thinking about them. Especially the older ones who are away at college and I don’t see as often. Aligning short visits with doctor appointments nearby fills me with delight. I enjoy knowing that they are living life to the fullest. I am comforted by the probability that a treatment will be solidified and ready by the time they might need it. If they need it.

I have started a medicine that, if it works, will curb my perseverations. It will take a few months to know, but already I seem to be able to dissect difficulties that I encounter and sort out what is HD and what is not. Doing so also seems to diffuse things where it didn’t before.

So I am enjoying the simple life. Happy to be in my home and ever grateful for the help in securing it. It is filled with windows and brightened even more by the unusual, massive snowfall. I am filled with love for my friends from everywhere and wish you all a peaceful 2018.

Maybe I will see you soon!


Caring for this HD gal

Here are some tips to smooth out the rough edges. If only temporarily:

1) please don’t move any of the sacred items from their places. A pen and notepad goes by each place I sit. A crossword puzzle book sits hopefully by the living room seat. It must have a writing implement. There must be a pen in the dining room.

2) leave the phone wherever I left the phone. if it is moved, I will think I have lost it. If I can’t find it then we can call it.

3) do not, under any circumstances, bring me the phone if it is ringing and I am not going towards it. That means I am not capable of a healthy conversation or that I am resting finally. Please do not wake me up and hand me the phone. I can’t get it together fast enough to have a conversation and it is humiliating. Plus I rarely have good sleep these days.

4) do not assume that I don’t need my own car. A little independence goes a long way.

5)if you give me a cash allowance, please do not give it away before I can put it in my wallet.

6) take me for walks around the neighborhood

7) don’t let me forget I am a wife and a mother

7b let there be dates!

8) help me plan out dinners and I will still try to cook them

9) it is getting harder to manage my medicines and I need help.

10) let’s come up with a series of small household projects and do them.

11) I still want to keep private matters private.

12) please don’t push things across the table at me. I have no idea what to do with them and I don’t want a big stack of papers. If I have a big pile of actionable items I will not do them and get stuck.

13) please listen for when I choke and when it happens don’t ask me if I am choking. It only upsets me because I cannot respond

14)please keep me as your wife or your mother with the respective levels of intimacy

15)please take me around town because i like to go out and now is the time

16) please avoid discussion of my HD without me being there. I want to be aware.


What’s left of me

Confusion about confusion, turning into itself again before leaving behind a raw, blistered, embarrassed, embarrassing, leftover me.

Realizations these days are “Oh, it is happening,” or “my God, I can’t stop it.” On the surface I try to hide it or I pretend I don’t know.

That’s easy enough when I stagger along but when I try to talk and the words don’t come out I am busted by fucking Huntington’s disease. And there’s no verbal conversation that I can have that isn’t impaired. Unintelligible or a sick game of charades or both.

It’s so bad I have found myself thinking things and not saying things that I would normally say. Conversations I would initiate, even about things I don’t like. I keep it all in the nonverbal realm. I keep it private. It feels safer and gives me more control. I manage to croak out what I mean when pressured or if I am left no choice.

But it’s easier just to let the world pass on by and keep the commentary to myself. Byproducts are that I am frequently misunderstood and my desires are not met. That’s my fault. Nobody can read my mind.

Sometimes I stare at my husband and wish he knew what I was thinking because it is too traumatic and laborious for me to try to verbalize it. When I do that, he often asks me what I am thinking about and I will pick an easier answer. Like something we have just discussed or a familiar topic.

I understand why they all became quiet. Quiet uncle. Quiet grandmother. Quiet mother who died a year ago this coming Monday.

I am beginning to understand what it cost them to enter into silence. I already understand why silence succeeded in seducing them.

And now it is coming for me.


Sometimes the best gift is staying away

When you want to celebrate achievements of another and you love parties and people, it is gutting to learn that your presence at such events is a source of stress for your loved one instead of a celebration of a shared life experience. 

When the potential for happiness is overshadowed by fear of what I may say and what I may do, it makes me feel inhuman and unloved. 

When I haven’t even said or done anything wrong but need to be tucked away to preserve future relationships with more important people, I feel like I must  hide in the asylum. I was invited by another party goer and gave my loved one the gift of “no”.  

I will hide in the opera house for you if it makes your happiness complete and your transition smoother.  Just realize please that I don’t belong there. I don’t want to be hidden in the opera house. I want to be free and proud and me, even though I am sick. I want you to be proud of me for trying instead of being terrified that I will be symptomatic.

Today has made me question all of my relationships because my closest one surprised me the most. 

But I have given the gift of no because if I went and something did happen it would not be well received. I have no watch or present for you. I have love and years of listening to your dreams and frustrations and encouraging you to be your best possible self.  

I gave you the gift of no and Fear it is the beginning of a lifetime of my further excision from potentially embarrassing moments. 

But I do not have a behavioral problem, I have a neurological disease. Control only goes so far, as evidenced by this blog. 

I would hope that as I worsen, the focus will be on ways that I say yes without feeling like Boo Radley has come a calling. Ways that my family and community can accept and even buy into my disease. That I can feel as welcomed at a going away party for my husband at work as any other wife would. That I will be treated with the dignity of a cancer patient or a paraplegic. 

But today the gift of No was the best I could do. And I did it so you would be free of the stress of me. 

If I had been there I would have looked at you with pride for all you’ve accomplished and with love for the man you are. 

That’s how I’ll look at you when you come home today and every day, forever.  


A hidden pain in the neck

The emotional difficulties I have been having for the past few weeks are literally linked to cervical disk pain my brain can’t detect at first. 

I get edgy, then upset, then so upset I have to stop what I am doing so I can keep it together. 

At this point, and this is the part I have been forgetting, I start to take a personal inventory. I think of what on earth could be causing me to be so upset. Then I remember that I am going to PT because of disk issues in my neck.  Up where it meets my head. 

As soon as I remember, the physical pain surfaces. Vague at first. Then it joins with the emotional upset and changes the emotional pain to severe physical pain. 

The physical pain must be happening the whole time and I am not able for some reason to feel it physically. I mistake it as an emotional pain. And because of my memory issues I have been forgetting it happens.  After I wrote the last blog, I realized again, and went to PT an hour before my appointment time.  When they saw my face they could easily recognize that I was in severe pain and immediately got me back there to help. 

I am starting to see a pattern here which my Physical therapist confirms.  Mere months ago, my brain forgot how to give my body instructions to walk. A conversion disorder with no underlying hardware problem. A wiring problem. So I relearned how to walk and have been better than fine ever since except that I injured my neck during my short time in the wheelchair. 

There’s also the panic attacks I used to have thirty minutes away from home after coming back from my parents’ house. It would always start on the same stretch of highway 70 coming back from Kinston. I used to put my husband on speakerphone when I got near that stretch so he could talk to me until I got home.  We spent countless hours in therapy and at home trying to figure out why it was happening. Then my husband realized that the first thing I did when I got home was run to the bathroom and urinate. The anxiety attacks were because of a full bladder. I simply had to pee. A pit stop in the middle of my return trips put an end to the full bladder and to the anxiety attacks that I thought I would have forever. 
I guess what I am learning is that the emotional and the physical are intertwined and that I can’t always recognize my body’s signals anymore. So my emotions go on high alert to let me know that something is wrong. I need to learn to read my emotions as signals of physical conditions.  Doing so would save me a lot of anguish but it is hard to remember. It is like learning a new language. 

I don’t know if HD has anything to do with any of this. I would love to hear from anyone who’s had anything similar going on. 


Inner fracas 

Stuff is always going on in my head and none of it is pleasant. 

For the past few weeks it is been like this: 

an inner scream, an inner argument, an inner struggle to stop the screaming and arguing. 

Every now and then my brain will seize on something external that I can try to attribute the brain screaming to but I am channeling feelings at the wrong thing. 

In actuality, there is no place where they belong and no place for them to go. So around and around I go– barely keeping it together.  Saved only by routine. 

When people scratch my surface, they are far away. At first I can’t understand what their words mean. What their intentions are. If I did something wrong. My brain revvs up with even more interference and I might smile at them and feel so distant from them and 

wonder if they 

pity me 


By the end of each day I am more tired than the day before. 

At the end of each day, when I do a mental inventory of my faculties, they seem smashed and bruised. 

At the end of the day I am so worn out with struggling with myself that I just want the day to end like flicking off a light.  

But my body keeps me awake, flicking and twitching its own inventory of itself. I have to put a thumb under each side of my butt to keep my arms still at night. My right thumb is sore and sprained. 

It is the time of year that I like to sit on my porch and have that feeling you feel when porch sitting but I barely feel the feeling licking at me and am more irritated by a car that simply drives by. 

I wonder if this is the way it is going to be. If it is just going to get worse.  

And that sends my brain further into turmoil.  


The last birthday party 

I can’t accept another party invitation because I can’t ensure that if plans change and I have to go alone I won’t fall apart. 

 I can’t drive Mark to another party because I told him I could only manage him and he brought two friends despite my expectations and this made me fall apart. 

The drugstore didn’t have my meds on time and this made my insides shriek. 

One of his friends tells me I am a fine looking woman while I am struggling to keep the car on the road and part of me wishes he’d slip out of the window and away from my mess. 

I can’t go to that party house again because They saw me suffering and that’s not good. I’m supposed to hide it but there was more than I could take. All the people and the loud boys I couldn’t be responsible for and the young girl who loved unicorns who just wanted a normal day so I hid inside and ran outside long enough to take pictures of she and I and of her chicken. 

The grownups at the party asked how I was and I told them it was hard. That I do better at home. That I loved their home and their family but it was obvious to them that I was dying inside just being there in the middle of it all. So many things and people and it was hot and I was scared one of the boys would act out or get hurt. 

In the end Randy came and switched places with me. I took my meds came home relaxed felt better but now I am the one who cannot accommodate change. The one who can’t provide respite. The one whose near breakdown was somehow mispercieved as lack of love. 

I only tried to do something I shouldn’t have. Something I have done for the last time.  But my failure had fallout and now everyone is going on with their post-party lives but my misery is complete. 



A couple of weeks ago I saw the total eclipse of the sun.

Conditions were perfect. I was at my best friend Nina’s house in the NC mountains.

My husband and my youngest son, Mark, were there. During the moments before and after the period of totality, my two sons Noah and Ezra contacted me, so I felt like I was sharing the experience with people I was connected to by blood and by love.

The time before and after the totality evoked a different feeling than the totality did.  Before and after felt like I was participating in a cool science experiment.

But the moment the moon completely blocked out the sun, things changed. Crickets chirped. A strange semi-darkness prevailed. Bats came out. And I took off the eclipse glasses and looked up at a black orb proudly displaying its blackness in contrast with the white corona that surrounded it. It was like a secret planet had revealed itself.

We all felt primal and slightly hallucinogenic. There was nothing to do but transfix my gaze at the totality. To drink in the sight of it.

There was no Huntington’s disease to consider for two minutes and thirty-four seconds. I was part of the human tribe. Energized. Feeling both very small and very large.