Category Archives: Uncategorized

A letter to Randy for Father’s Day

Randy,

On Mother’s Day I decided that I would write this to you on Father’s Day.

Who knew that this weekend would be a challenge? Who knew that my healthy streak would threaten to end, shaking me and thereby shaking you?

I know it doesn’t feel that way right now but you are the person that is loved by all of us just for being you. You’re the most important thing to us.

And you ARE funny even though I can’t laugh. I still know you are funny and I appreciate it for the sake of those who can laugh.

You’ve tried and tried to break through to me until you’re worn out.

I can’t deny that I wish I didn’t bring the HD to the table. But I have told myself that I am only going to allow myself to feel like a victim one day a year. And it ain’t today. So I suck it up and look for the silver lining:

Maybe the best Father’s Day gift, besides the camera you’re going to pick out, is for you to rest and take care of yourself.

Mark and I love you more than anything and we want you to have peace.

Always,

Sarah

Advertisements

A letter to my children from a mother with HD

Noah, Ezra, and Mark,

I am so proud of the young men you are becoming and have become. Each with your own charming personality, you are all honest, loving, and compassionate.

There were many times when you were growing up that I smiled when it felt like I was dying inside. There were also times when I couldn’t even muster up a smile. I was emotionally absent.

Many times I would physically remove myself from your presence so you wouldn’t have to see it. Because I thought it was better for you.

There were harder times still, when I realized after great struggle, that the best thing for you was to allow other parents to take care of you.

People who aren’t my sons have told me I was a bad mother. They have told me that it was my job to be there for you no matter what and that I failed you.

I believe those people are young, ignorant, and filled with their own anger from their own personal losses.

Because I know OUR love for each other has NEVER failed over the years.

No matter what. No matter how hard HD had been hitting me, I always felt OUR connection. It comforted me and fed me and motivated me to function as well as I can.

Your love has been a beacon.

This Mother’s Day and every one that follows, when you think of me, know that my love for you only grows and will blanket those you choose to love.

There is no challenge you will face without me in your corner.

And I will celebrate your every victory.

If the time comes that I can’t say these things, you can read this and know it to be the truth despite what may seem to be.

Despite the way a faulty gene manifests itself through me.

Sleep and Huntington’s disease

I had always glossed over the details about sleep problems and HD when reading over the years because it seemed like small potatoes compared to the other, more blatantly hellish symptoms.

But that was before I had beaten every other symptom back as best as I could with cognitive therapy and handfuls of pills each day— a move that has positioned my increasing sleep difficulties as the next symptom I plan to tackle.

Here’s an interesting excerpt about sleep and HD from the HOPES website:

“Because of the many detrimental effects of sleep deprivation on human health, scientists believe that the sleep disturbances associated with HD can exacerbate the disease. Indeed, many of the symptoms of sleep disorders are the same as the symptoms of Huntington’s disease, including the loss of motor control, memory problems, mood changes, and impaired cognitive function. Thus, disturbed sleep may be one of the mechanisms through which the behavioral, cognitive, and motor problems associated with HD develop. It is even possible that sleep deprivation is primarily responsible for some of the symptoms of HD, a hypothesis which remains to be tested. This raises the interesting possibility that treating sleep problems can improve the lives of those with HD.”

I’m game.

These are some of the problems I have been having, in addition to sleep apnea which is unrelated to HD, but deserves mention here for being such a loyal pain in the ass. (I use a bipap machine for that which has to be set at gale force speed to keep my airways open. Invariably, I blow a sinus every few weeks and have to stop using the bipap until it heals enough and then retrain myself to wear it.)

But I digress.

The possibly HD related problems:

Difficulty falling asleep

Difficulty staying asleep

Difficulty going back to sleep after a trip to the bathroom

Wiggling feet in the night

Lack of REM sleep leading to

Dreamless sleep and feeling

Perpetually jet lagged and ultimately

Never feeling rested

Difficulty napping

I have a new psychiatrist, Dr. Vaishnavi, who is based at the Duke brain tumor center. He is an expert on brains, deteriorating or otherwise. Being his patient has improved my life exponentially.

In fact, the last time I saw him, we had cleared my slate enough to address sleep. He gave me a sleep hygiene list, which I had seen parts of before in the wild but never considered applying the guidelines until now.

One of the things on the list that wasn’t obvious to me was that if I was having trouble sleeping, I need to get up, go to another room, do something non-electronic and boring, like read, until I get sleepy. Then return to bed and try again. I am to repeat this several times during the night until my brain associates being in bed with the act of sleeping.

Along the same lines, I am not supposed to <gasp> watch TV in bed anymore because my brain will associate the bed with watching TV and not sleeping.

Several of my friends with HD take melatonin before bedtime, something I had been avoiding because I take clonazapam at night. My doctor assured me that it was OK to take both, so I took a melatonin last night and woke up at 5:45 a.m. ready to start the day. Usually my husband has to wake me up in the morning: Much later and with persistence.

I have read and been told by my friends that people with HD do not produce melatonin properly or sufficiently and after the rest I got last night, I am inclined to agree.

It feels like something that was missing has been given back to me.

I am going to start looking forward to bedtime instead of dreading it and I am sure that will improve the big picture as well.

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.