Tag: Symptoms

Apathy, Anxiety, Memory

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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

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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 🙂

Meloxicam/Arthritis/Enthesitis

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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 🙂

Vertigo

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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. 😉

Glucosamine/Arthritis

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Glucosamine and Arthritis 2019

I stopped taking glucosamine at the start of this experiment. It took a week or so, but gradually joint pain increased. Things that hadn’t hurt started to hurt again, others that always hurt were worse.

I don’t have typical Rheumatoid Arthritis joint pain, with redness and swelling. My joint issues are soft tissue disorders, the worst being enthesopathies. I was playing soccer, landed on one foot and twisted, and heard a pop. The obturator internus separated from the hip bone. So did a third of my hamstring.

I’ve been diagnosed with everything highlighted above. Below is a pelvis. It’s not my pelvis. But I did have imaging of all kinds, revealing, the avulsion injuries, calcification on both ‘sit bones’ (where this image is pointing), and tendinosis on the upper outer hip.

When I’m at the gym, if I increase weight or reps to reach muscle fatigue, the limiter is a joint: knee, shoulder, elbow, wrist, or hip. If I push through the pain, I’ll end up with a tendinopathy that will keep me sidelined for weeks until it’s healed.

Not My Pelvis

Legendarily bad hips run in the family, in the very same people that had HD. My grandmother, who didn’t walk for the last 20 years, blamed the hips on her father. My aunt died from HD after 2 hip and 2 knee replacements.

Rheumatoid Arthritis and HD

“Depleting rheumatoid arthritis cells of HIP1 decreased their invasion capacities by nearly half, a property required by these cells to properly recover after cartilage and joint damage.”

Result?

I still have no answers for the joint/tendon issues. I suspect that since both skeletal muscle and bone density are affected, there will be further information on other connective tissue. Someday.
Until then, I’m back on the glucosamine. Within a week I was feeling better, exercising longer.