Month: January 2021

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.