Category: Symptoms

Apathy, Anxiety, Memory

Mastering The DeclineLeave a comment

In trying to master the decline, I’m also documenting it. These are the more difficult entries, both to write and to post.

You’d think apathy and anxiety would cancel each other out. But, no.

I’m traveling again. And I don’t know how long I’ll be able to do it. The planning is harder, the sleep disruptions are more disturbing. I still love it, even if I can’t fully feel all the feels.

In the last 24 months, there is a noticeable shift in my perceptions.

Apathy

I can’t get excited about things the way I used to. But I haven’t felt the usual rush being someplace different. And it is very different. Even 2 years ago I would’ve been preoccupied with all the little things, figuring out the new systems. People watching, museum-going, taking photos of buildings and plants.

I still do those things. I can’t put my finger on why I still do it, if it feels so… artificial.

I’m flat. Flat + anxious, honestly.

Anxiety

I had anxiety before the flight, before taking the bus for the first time, and going to a restaurant for the first time. Part of the pre-travel anxiety was doom-related. Not a voice in my head asking if this is the last time I’ll travel or what happens if the plane goes down. Instead, a fog. A grey mood around something unseen, blurry, in the peripheral vision in my head.

I used to have the kind of anxiety that manifests as depression. That’s what I thought it was. In the freeze reaction I used to have about imposter syndrome on the job. Terror at being found out (even though I was good at my job) turned into the inability to get out of bed in the morning, leading to bad job performance. That’s hard to admit. It got worse closer to the HD diagnosis in 2017. I even quit working in 2018.

Memory

A bigger part of pre-travel anxiety came from a vague sensation of forgetting something. Again, no voices in my head asking about passports or phone chargers. Just that sense that plans could be incomplete in some way that I don’t know that I don’t know about.

Someone shared childhood memories that 10 years ago we had. Today I don’t. Absolutely no memory of it. It doesn’t disturb me in the way you might think.

Part of the reason traveling works for me is that it avoids the groundhog day effect. When every day feels repeated, time passes so fast that I feel like I’m running out of life. This runs counter to the advice: give people with memory problems a very consistent routine. Maybe it works with Alzheimer’s and dementia, but for me the quality of the memory loss is distinctly different, needing a different solution.

I’m apathetic about my memory loss, but it still makes me anxious. What?

Conclusion

There’s an interaction between memory and anxiety that I haven’t read about in the HD literature. Anxiety that isn’t nervousness or specific voices. Just a vague sense of forgetting something important: an appointment, the keys just before you shut the locked door, or food on the stove. All of which I do more of, so is it another case of “just because you’re paranoid…”? I think it’s a legitimate reason for distress.

At the same time, the interaction between apathy and anxiety means that I’m happy enough, I guess, most of the time. I’m not particularly *bothered* by my anxiety. Also something I don’t read about in literature about either HD or anxiety.

I’ll just keep reading what I can find. And writing about things I don’t.

Apathy And A Little Brainwashing

Mastering The DeclineLeave a comment

Huntington Disease causes apathy, but apathy is more than one thing, it lives in three domains. In some people with Parkinson Disease, emotional apathy remains, even when behavioral and social apathy is absent.

Effort for reward (motivation) is the behavioral domain. For me, this is pretty much wiped out.

Effort for other people is the social domain. Pretty much intact for me: I’m willing to do things for other people and groups.

Emotional responses and sensitivity is the third. My emotional responses feel somewhat blunted, but I am sensitive to others’ feelings. (With a caveat: I’ll need to accurately read their faces and body language and voices.) I’ve lost memory around what something felt like, emotionally. So I can remember an event, but not, sometimes, what I felt about it.

In the Parkinsons study, there was a correlation between having behavioral and social apathy and having anhedonia, the inability to enjoy doing pleasurable activities.

I don’t exactly have anhedonia. I’ve lost the memory of how enjoyable an activity is. So I won’t start. But once I start, I enjoy it.

So… I have a really hard time getting things done. Even things that, in theory, I like to do.

I’m trying to do a little brainwashing on myself, and ran into this video from Chase Hughes. It’s been super helpful 🙂

Covid-19 Vaccine (Moderna)

Mastering The Decline1 Comment

My day after the first dose experience was a compression of my months of covid. I had fever and body aches that woke me up at 5am. By 11 I had severe nausea and a headache to go along with it. At 5pm I got out of bed and stayed awake for more than an hour. And by 7pm ate dinner, went back to bed, slept 11 hours, and it was done.

Coincidentally, my covid symptoms started exactly one year ago… and I didn’t get out of bed much until May.

I’ll update after the next dose 🙂

Dose 2: NBD.

I had symptoms of about half the intensity and duration.

Where Is My Mind?

Mastering The DeclineLeave a comment

OK, things are getting worse. Yesterday my therapist asked for the usual credentials at the beginning of a session: name, DOB, address. I gave name and address and hesitated. Took me a minute to remember what else she’d asked for. We have done this weekly for over a month, and still I couldn’t remember.

Later the same day, I host a zoom meeting. It’s protocol to thank each person who makes a comment in their allotted time. On the very first one, I forgot. The procedurals that are automated are going downhill.

I’ve had bad days, but this was a new low. With a degenerative disorder, new lows are the new normal.

This isn’t bad or good, it’s just what is. I don’t want to post this. But the purpose of this blog is to document the decline in detail. In realtime. And I don’t feel terrible. Just a sense of urgency to get done the things I won’t be able to do.

I play musical instruments, mostly guitar and piano. And I have a back catalog of about 300 songs. I’ve recorded a couple dozen. The others are mostly lost to weird made-up notation (not tab or sheet music) and lyric fragments. Some jpegs of literal fragments of paper. I’m not sure what’s worth saving. And it’s daunting to look at it and try to sort it. Much less re-learn and re-record it.

I’ll get done what I get done. Or as my mom and her father used to answer, to lots of things: “either it will or it won’t.” And I can choose to be ok with that, too. 🙂

Meloxicam/Arthritis/Enthesitis

Mastering The Decline2 Comments

2021

I’m trying Meloxicam.

I’ve actually had it before – the previous rheumatologist prescribed it at half my current dose (15mg/day). I didn’t realize I needed to take it daily. Also the enthesopathies weren’t as numerous or frequent as they are now, so I can’t say whether it made much of a difference.

Here’s the thing: I have “inflammatory polyarthritis.” Like “pneumonia” it’s a synonym for a symptom, not a cause.

The pcp refers me to a specialist. I’ve been to 3 rheumatologists in 15 years. They send me to orthopedists and physical therapy. I see a different doc for every joint: shoulder, ankle, knee, hip, back. The ones who make a connection? “See a rheumatologist.” The rheum says “see an ortho.” Go ask your dad. Go ask your mom.

It’s not my job, man, phrased as, “we don’t handle that here.”

I’m not hellbent on any particular diagnosis. Or any particular drug. DMARDS, biologics, or even industrial strength NSAIDs like Meloxicam. But even though enthesopathies aren’t taken as seriously as arthritic joints, (or even red, warm, inflamed enthesitis-es), there can be just as much damage. The connective tissue can calcify. And some of these drugs prevent or slow damage in enthesopathies.

I’ve been looking for answers for 15 years. I really don’t want to wait to see if the calcification in my hips gets worse. If the tendons in my left hip – that feel like they’re going to rupture like the ones in my right – finally give way.

I’ve actually put in writing to my providers that I am “already on disability, not looking for pain meds, and am not here for attention.” That I need collaboration; help in solving this problem.

So this is where I’m starting, and I’ll see what happens 🙂

Update:

5 weeks after increasing my conditioning exercise, I started taking the Meloxicam. I had been taking it pretty easy, and feeling a little stronger about 3-4 weeks in. I was trying not to inflame any enthesitis. Still had pain in the entheses of the hip (upper hamstring and obturator internus and hip pointer), just below the knees, and several places in the elbows and shoulders.

In the last few days have I been able to intensify exercises to the point of muscle soreness. Without bothering the entheses. This is huge. If I can do this, I might be able to return to running. The limiter on it has always been the upper hamstring insertion (ruptured).

3 months in, I’m running again. Sort of. About 5 one-minute sessions, 3 times a week. But this is as far as I’ve ever gotten. The limiters are my knees (increased weight doesn’t help) and asthma (it’s just that season).

I’m going to gradually increase running and also start some new movement goals over the next few months. As with all meds, I’ll re-evaluate. But so far it’s been fucking great 🙂

Magnesium/GI Issues

Mastering The DeclineLeave a comment

2021

At least it’s not 2020. But here I am, talking about poop, in gory, gory detail. You were warned.

I ditched the Mg supplement prior to the PCP appointment. The serum levels were normal. So…

I am not constipated. I poop all the time. Like every time I pee. I poop hard rocklike pellets. I’m guessing it takes about 4 days at least for food to make it through. For me. For most people, it takes 2-5 days, says the Mayo clinic (found with a cursory google search “average time it takes food to exit the body as poop.”)

My insurance company sent a colon cancer screening kit. All I had to do was get some of this granite poop onto a toothpick with bristles and into a tiny plastic case with an even tinier hole in the top.

Attempt #1: my rock-hard poop would not stick to the toothpick no matter what I did. I got a couple of dark brown sand-sized grains onto it, sent it off, and got a new kit in the mail. With the letter saying they couldn’t process the first one. I’m guessing because it didn’t have poop in it.

Attempt #2: I took 1/8 cup of miralax and a little laxative pill. Nothing happened. Tried it again 8 hours later. Again, not even a stomach rumble. The next day, I took 2g (that’s grams, my friend) of Mg in the span of 12 hours. Four 500mg supplements. It took 2 additional days of this dosage to get poop soft enough to put in the apparatus.

Balancing my elbows on the counter and my wrists against a prop, I was able to get some poop in (and some poop out) of the container. Awaiting word of my success.

Meanwhile, nothing else in my life seemed to change with the magnesium. I stopped it, and within a couple of days, rock poop again.

I just don’t know. Clearly I have no answers 🙂

Memory, Intelligence, Coherence

Mastering The Decline1 Comment

What It’s Like In My Head in 2021

It’s been 3 years since the Huntington Disease diagnosis.

My drafts are composed by dictation. Sometimes I can’t open the app fast enough to remember what I’m going to write about. Today I finally remembered two things.

Memory is not intelligence.

Sure, they’re integrated. So much that you won’t notice until only one of them is affected.

There are thoughts you keep in your head for multitasking; subconscious, and never written. They’re the basis of the small day-to-day decisions about automated tasks. I’ll remember that I have decided to execute a habitual tasks in a certain way or in a certain sequence, but can’t remember the rationale.

Like brushing my teeth before putting on makeup so I don’t drool it off my chin.

Where do I sit in the room to meditate and why? There’s a particular chair that doesn’t sink as much as the couch. It’s in the sun in the morning. I do it without shoes because I don’t want to have them on the seat. If it gets worse I’ll workaround with a post-it in the chair: “Meditate Here.”

I record music and there’s a reason why I route my guitar a certain way through the DAW. I disconnect the power source to reduce hum. Do I remember that? Nope. Every time I plug it up I go through that same routine. Which I can do, once I am in situ.

That kind of knowledge is stored differently than the memory of going someplace yesterday, news heard last night, or things learned about mRNA vaccines. Those are intact for me, for now. It’s the automated memories that don’t seem to be there.

The ability to produce coherent thought is not the same thing as having coherent thought.

Sometimes I can’t find a word, but the concept is there, intact, in my head. Sometimes I’m slower to speak, slur, or stutter. I haven’t lost the subtleties of thinking. I’ve lost the subtleties of fluid speech. We’re (ok, I am) used to using speech to estimate intelligence. It’s a misconception. See Parkinson’s research.

As an HD patient, what do I need from friends and family and caregivers?

Don’t treat me like I can’t make decisions for myself. If I can’t find a word, it doesn’t mean I can’t reason. Don’t assume. Ask. And give me space and time to answer.

So far I’ve had great support from friends and family, but I’ve seen others who haven’t been so lucky.

Covid-19

Mastering The Decline3 Comments

What I Did With Huntington Disease and Covid-19 in 2020

Regimen (what I did my first 4-5 weeks)

Food: I drink hot tea with pepper and chicken broth with pepper, even though I can’t taste it. I eat greens and yogurt every day. I drink half a dose of BCAAs and 2 servings of rehydration powder every day. I keep superhydrated.

Meds/supplements: allegra and lexapro. I restarted my rx singulair for asthma to improve lung function. A full dose of guaf, every 4 hours. The prescribed prophylactic dose of antimalarials prescribed for my trip.* Half the recommended dose of decongestants (sudafed). A quarter of the recommended dose of acetaminophen when I need it for fever/pain. I don’t want to overload my liver. Vitamin C every 4 hours, alternating plain C with airborne (C/zinc). I take my usual glucosamine, calcium, multivitamin.

Physical: I’ve mostly been horizontal, on one side or another. I go upside-down a couple of times a day as airway-clearing therapy. I’ll do percussive ACT if I start to get congested. I take a hot shower daily. Run the diffuser constantly with eucalyptus (and sometimes clove, cinnamon, and lemon). Gargle with salt water and clean my sinuses twice a day, trying to reduce the amount of postnasal drip. And keep my mouth clean, brushing a few times a day and using hydrogen peroxide rinse and directly on the toothbrush afterward.

Timeline

Symptoms started 3/19/2020.

Day 1 -(March 19) felt ‘off’ all day and had fever by bedtime. It wasn’t super high – 100 to 101.

Day 2 – I had fever and slept all day and had the runs. Body aches, especially spine. Headache.

Day 3 – Fever and body aches the same, diarrhea worse. Can’t smell or taste anything. Not essential oils or garlic or clorox. It is profound. I had a chocolate for a treat and it had the texture of a bar of soap and the taste of water.

Day 4 – diarrhea, but low to no fever. Felt faint and like vomiting by bedtime. Worst day so far.

Day 5 – some nasal and lung congestion, but no productive cough. No fever. Moderate diarrhea.

Day 6 – fever is back this evening. Diarrhea, nausea. Feel faint if I get up too quickly. Sleeping a lot, supertired. Haven’t been up to writing or even sitting up much until today.

Day 7- no high fever, but sleeping most of the time- diarrhea is still a thing. Sweaty. Nasty head congestion, is a bigger thing if I miss a dose of decongestant. Trying to physically keep the virus out of my lungs. Only a little asthmatic.

Day 8 – no fever or diarrhea, Head still congested. Doing breathing exercises. Felt slightly better. Still tired.

Day 9 – Ugly yellow head congestion, no fever. Still sleeping more than half the time but not quite as tired.

Day 10-11 – congestion is actually worse. No high fever, but still feel bad, overall. Still can’t smell/taste.

Day 12-14 – congestion is still bad, green thick (sry). Have a little shortness of breath. Sleep 14-16 hours instead of 20. Still no smell/taste. Thought the runs were gone, but no.

Days 15-27 – not a lot of energy for stuff like documenting how things are going.

Day 28 – had a negative test, but have swollen lymph notes, headache, sinus infection, fatigue.

Days 29-117 – lingering sinus infection and fatigue. Wiped out on the couch, some days not even getting up to cook or eat. Smell comes back at about 25% – can’t smell cooking chicken, soap or shampoo, clorox, most essential oils, or coffee. I can smell other strong things on and off, but not intensely: brussels sprouts, onion. My asthma is out of control, every day. Worse than any allergy season before covid.

Day 118 (July 18) – 141 – Positive antibody test. Sinus issue limited to the right node behind the cheekbone. Fatigue. Even when pollen is back to almost 0 and the AQI is good. Even on singulair, albuterol, and antihistamines . I wake up to my heart racing sometimes. Got a watch to track it.

Day 142 (Aug 10) – Present Got a prescription for corticosteroid inhaler. Three days later I can breathe again. My heart still races occasionally when I sleep. It wakes me up. Taste/smell is still limited.

Still positive for antibodies in September.

Vertigo

Mastering The DeclineLeave a comment

Related to Huntington Disease? I don’t know. Maybe it’s the autoimmune genes fault, this time.

2019

Episodes of vertigo started 15 years ago – severe, but not frequent. Sometimes it would put me in bed for a week. Changing position incrementally (I couldn’t just sit up from bed), I’d have to gradually tilt my head about 15 degrees up and wait a minute.. repeat until sitting. Now it’s persistent but subtle, about half the time, with a duration of a week or two.

Suggestions for people with Ménière’s disease and other vestibular disorders: regulate intake of food and water so that there are fewer *fluctuations* in sodium input and blood sugar levels. Avoid alcohol, caffeine, and MSG, and stay hydrated.

In 2003 I had a doc suggest that I drink alcohol for its diuretic properties. It was somewhat successful, but it’s hard to tell since I was also reducing sodium. I’m more likely to have a mild episode that lasts a few hours after eating a lot of salt, which typically I don’t.
BPP exercises (the Epley manoever is one) doesn’t generally give much relief – it worked once in 2012.

What Works For Me

Every morning I do a set of exercises my mom’s physical therapist gave her and it has reduced the severity. The debilitating episodes happen only once every year or two.
Move the head in three planes, gently, to the extent of range of motion, and without discomfort:
* chin up and down supporting the neck in the back
* looking left and right without moving the chin higher or lower
* tilting the head left and right while keeping the face forward and the shoulders down

I’m also targeting balance more generally. Walking heel to toe on a treadmill (on it’s very slowest setting), walking on the treadmill while doing the head-ROM exercises, standing on a balance trainer and doing them (with a wall for support). The mantra: find what is hard and do more of it.
In 2016 I had my first surf lesson in the middle of a week-long mild episode. It was definitely harder, but doable. 😉

Melatonin/Sleep

Mastering The DeclineLeave a comment

2019

Circadian Rhythm Disturbances in Huntington Disease

I stopped taking melatonin a few weeks ago. It wasn’t initially harder to sleep. In the last week or so, I’ve felt the cycle shift. I’m up about an hour later (both in the morning and at night) almost every day. A couple of weeks ago I was sleeping (and being sleepy) at 9pm, waking at 6am. Now I don’t sleep until 2am and can’t get up until at least 10am. I’ve also been napping mid-day, sometimes several times, so tired I couldn’t get up to work. I’ve gone through my usual attempts to have more energy. Resisting napping. Regular exercise. I take Zyrtec for asthma from seasonal allergies. It shows up it its most annoying form as fatigue. But that’s not it, this time. I’m still sleepy for hours after I wake up and immediately after naps. And I sleep 12-14 hours a day.

Melatonin in HD: lower levels and improper timingMelatonin is a hormone that helps the brain decide when to sleep and wake.

As a teenager I was a ‘night owl’ and required the usual extra sleep we now know they need. Later I had kids, was working and going to school, and was consistently sleep deprived. As an adult, I’d wake up after 7.5 hours, like clockwork – as long as those hours included the interval 4-6am. In the last decade with HD, it’s increased to 9-10 hours. It’s not just how long I’m in bed – it’s actually sleeping.

I bought a light box a few years ago and use it in the winter. I have great sleep playlists and use earbuds if necessary. I do all the usual recommended sleep hygiene including limiting screen time at night, not eating late, sleeping in the cool and dark.

Brain disorder-specific sleep issues

Hypersomnia, melatonin disturbances, and circadian rhythm disturbances can’t be fixed with normal sleep hygiene.

Neurological diseases cause sleep problems. So for the next part of the experiment, I’m resuming the melatonin and I’m going to try to reset the clock. If I can’t back it up, I’ll do a progressive advance. I’m shopping the melatonin TODAY. And I’m in a place with lovely amounts of sunshine, so the therapy starts in the morning.

2019 May 13: I’ll update over the next couple of weeks.

Update 1: that day, I took 4x 3mg melatonin at 8pm and, as a last resort, and advil and a quarter bar xanax. Woke up at 1am and took another advil. Was back to sleep in half an hour. Woke at 9am, napped at 10:30. Groggy all day, blamed the xanax.

Update 2: the next day, took 4x 3mg melatonin and an advil at 8pm. Slept 9pm – 9:30 am only waking once, briefly. Groggy all day, blamed the melatonin. Planning to half the dose tonight.

Update 3: It worked! The next few days I started with 5mg and increased to 9mg and sleep was increasingly regular. I moved the dose to 7pm, as it takes a couple of hours for me to get sleepy. I’ve now been sleeping about 9pm, waking to the alarm at 7. I don’t wake during the night unless there’s some other issue. And I don’t feel groggy all day. This is consistent over a couple of weeks.