Posted in Developmental disability, disability rights, Epilepsy, PSA, quotes, Self-advocacy, Temporal Lobe Epilepsy, Weave of Traditions

I don’t just have one developmental disability.

I hate labels but this post is all about labels. Deal with it.

I do not just have one developmental disability. This is one reason that I identify more with the self-advocacy movement than any diagnosis-specific movement.

So the developmental disabilities that are official in California, where I come from, are: Cerebral palsy, autism, intelleectual disability, childhood-onset epilepsy, and fifth category (anyone who needs the same kind of care and does not mostly have a specific learning disability like dyslexia, or a purely physical disability (except CP).

I have childhood-onset temporal lobe complex-partial seizures. I also have had, less freqently, absence or petit-mal seizures (where you stare and then totally forget everything that happened), atonic seizures (where you drop to the floor very rapidly and usually injure yourself, it is a sudden loss of muscle tone, not a grand mal/tonic-clonic), and myoclonic seizures (where your arms fling out while conscious for no apparent reason). I may have had other types but that is what I can think of.

Childhood epilepsy has affected me more than any other DD I have, I think. It sounds weird unless you have grown up with it largely untreated or mistreated. It hits you with out of place emotions that you start off thinking are real. It makes everything weird and repeaty. It gives me deja vu and jamais vu. Randomly, but usually in clumps. And I have developed the so-called TLE (temporal lobe epilepsy) personality. The following is from Wikipedia:

Focal aware means that the level of consciousness is not altered during the seizure.[2]In temporal lobe epilepsy, a focal seizure usually causes abnormal sensations only.

These may be:

  • Sensations such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity)
  • Amnesia; or a single memory or set of memories
  • A sudden sense of unprovoked fear and anxiety
  • Nausea
  • Auditory, visual, olfactory, gustatory, or tactile hallucinations.
  • Visual distortions such as macropsia and micropsia
  • Dissociation or derealisation
  • Synesthesia (stimulation of one sense experienced in a second sense) may transpire.[8]
  • Dysphoric or euphoric feelings, fear, anger, and other emotions may also occur. Often, the patient cannot describe the sensations.[9]

Olfactory hallucinations often seem indescribable to patients beyond “pleasant” or “unpleasant”.[10]

Focal aware seizures are often called “auras” when they serve as a warning sign of a subsequent seizure. Regardless, an aura is actually a seizure itself, and such a focal seizure may or may not progress to a focal impaired awareness seizure.[11]People who experience only focal aware seizures may not recognize what they are, nor seek medical care

Focal impaired awareness seizures

Focal impaired awareness seizures are seizures which impair consciousness to some extent:[2]they alter the person’s ability to interact normally with their environment. They usually begin with a focal aware seizure, then spread to a larger portion of the temporal lobe, resulting in impaired consciousness. They may include autonomic and psychic features present in focal aware seizures.

Signs may include:[12]

  • Motionless staring
  • Automatic movements of the hands or mouth
  • Confusion and disorientation
  • Altered ability to respond to others, unusual speech
  • Transient aphasia (losing ability to speak, read, or comprehend spoken word)

These seizures tend to have a warning or aura before they occur, and when they occur they generally tend to last only 1–2 minutes. It is not uncommon for an individual to be tired or confused for up to 15 minutes after a seizure has occurred, although postictal confusion can last for hours or even days. Though they may not seem harmful, due to the fact that the individual does not normally seize, they can be extremely harmful if the individual is left alone around dangerous objects. For example, if a person with complex partial seizures is driving alone, this can cause them to run into the ditch, or worse, cause an accident involving multiple people. With this type, some people do not even realize they are having a seizure and most of the time their memory from right before or after the seizure is wiped. First-aid is only required if there has been an injury or if this is the first time a person has had a seizure.

This is Mel again, just to note that focal impaired awareness seizures must be the new term for complex-partial seizures, which is what I grew up being told I had. Back to Wikipedia:

Postictal period

There is some period of recovery in which neurological function is altered after each of these seizure types. This is the postictal state. The degree and length of postictal impairment directly correlates with the severity of the seizure type. Focal aware seizures often last less than sixty seconds; focal with impaired awareness seizures may last up to two minutes; and generalized tonic clonic seizures may last up to three minutes.[citation needed] The postictal state in seizures other than focal aware may last much longer than the seizure itself.

Because a major function of the temporal lobe is short-term memory, a focal with impaired awareness seizure, and a focal to bilateral seizure can cause amnesia for the period of the seizure, meaning that the seizure may not be remembered.[c

Hippocampus

The temporal lobe and particularly the hippocampus play an important role in memory processing. Declarative memory (memories which can be consciously recalled) is formed in the area of the hippocampus called the dentate gyrus.[citation needed]

Temporal lobe epilepsy is associated with memory disorders and loss of memory. Animal models and clinical studies show that memory loss correlates with temporal lobe neuronal loss in temporal lobe epilepsy. Verbal memory deficit correlates with pyramidal cell loss in TLE. This is more so on the left in verbal memory loss. Neuronal loss on the right is more prominent in non-verbal (visuospatial memory loss).[14][15][16][17][18]

Personality

The effect of temporal lobe epilepsy on personality is a historical observation dating to the 1800s. Personality and behavioural change in temporal lobe epilepsy is seen as a chronic condition when it persists for more than three months.[20]

Geschwind syndrome is a set of behavioural phenomena seen in some people with TLE. Documented by Norman Geschwind, signs include: hypergraphia (compulsion to write (or draw) excessively), hyperreligiosity (intense religious or philosophical experiences or interests), hyposexuality (reduced sexual interest or drive), circumstantiality (result of a non-linear thought pattern, talks at length about irrelevant and trivial details).[21] The personality changes generally vary by hemisphere.[21]

The existence of a “temporal lobe epileptic personality” and Geschwind syndrome has been disputed and research is inconclusive.[21]

Okay it is Mel again. Most of the things listed apply to me in one way or another. In fact, the more you do your research, the more you would think (if you know me well) that they had me followed. It is far more a part of me than anything else.

One thing Wikipedia left out, is the development of an intellectual disability later in life, caused by the temporal lobe epilepsy. From the signs, I seem to have done that. I have been told by doctors I have the cognitive status of an infant. And I have been told similar things, including that I will never grow up, by a neuropsychologist who seemed to want to get my parents to put me under adult guardianship. And I know I fit the official criteria.

Hypergraphia is more than compulsive writing. It is compulsive creativity of any kind. I definitely have that.

I’m definitely autistic. But like these other labels, I don’t like being confined to it.

Also, I grew up hearing the words “underlying developmental disability” a lot. I didn’t understand them and they scared me. I wanted to know what it meant but at the time had very little means to ask. They also said that it was severe, complex, unsalvageable, and many other things to that effect.

So basically, CP is the only one I definitely don’t have. But there are other less-known ones like childhood-onset brain injury and fetal alcohol syndrome. Also given that CP is involved, there are people with physical and learning disabilities that would have qualified back in the day. I still feel like my agrin mutation leading to congenital myasthenic syndrome is a developmental disability in and of itself.

But I am part of the DD self-advocacy movement. One of the most important parts of that movement, for me, is the rejection of specific labels. This does not mean we don’t understand we are different from each other. It is just a core part of the values of the movement to put the person first and our disability second. That doesn’t mean disregarding disabilities or important individual differences. It just means we go about it in a different way.

My favorite part of the self-advocacy movement is we seem to have gotten cooperation among very different kinds of people with disabilities. For instance, I went to a live-in rec program. It was hell on earth, but the saving grace was the cooperation. I was being pushed in a wheelchair. People who could walk but unsteadily were allowed to grab my chair. Meanwhile, people who could talk would get the attention of staff. If someone fell, which happened often, people who could walk would go for help.

I have never seen that kind of cooperation among any other group of people with disabilities. Or, as a multiply-disabled (including several DDs) friend said, the DD world was doing cross-disability great, long before cross-disability was a term. We are an accident of history. There is no particular reason for us all being lumped together, other than that historically we were put in institutions for the “feebleminded”. Sometimes also the “insane and feebleminded” or just the “insane”, but mostly they focused on feebleminded.

This post is a lead-in to several other posts. I had to do it this way. Just like I need the words “genderless lesbian” without being a TERF, I need the words to explain my relationship to the different kinds of developmental disabilities.

So this is my attempt to say: I seem to have temporal lobe epilepsy (with other kinds of seizures), an intellectual disability, autism, and some kind of unnamed DD. I also have been called low-functioning. But I don’t live my life as if labels matter. I just need these words, right here and right now, to explain things. At least one further post is planned. I don’t know when.

t

Posted in medical, Problems and solutions, PSA

Keeping Your Symbiotes Happy: How to TRY Not To Get the Dreaded Butt Plague If You’re Tube Fed (C Diff Prevention PSA)

c-difficile
A clostridium difficile bacterium. You don’t want this little guy taking over your guts. Even when it’s not deadly, it’s highly contagious and dangerous.  And it can be both deadly and antibiotic-resistant.

I just got over a gnarly C Diff (clostridium difficile) infection that lasted from approximately November until May of this year.  Here’s a link to the Mayo Clinic’s page on C Diff if you want to know more about it. It wreaked havoc with my health, including my ability to absorb the steroids I depend on for survival, and I was away from home then hospitalized for a long time.  I had thought C Diff was something you got only from antibiotics or contact with an infected person.  I didn’t know I was at risk from other factors, especially being tube fed nothing but formula.  I was wrong.  I want to tell you about the risk factors that exist, especially in tube feeding and how to prevent that.

This is gonna be a little long, but there’s a bolded section at the end that basically tells you which nutrients you need to add to your diet to be more protective against C Diff if you’re on an elemental tubefeeding formula as your main source of nutrition.

The biggest risk factor for C Diff is frequent contact with the healthcare system.  Antibiotics are a risk factor.  So are some other medications such as acid reducers, which I have to use in large quantities because of my gastroparesis, reflux, and aspiration risk.  But the one risk factor that intrigued me the most, because it fit with the onset of my symptoms, is being tube fed nothing but a tube feeding formula without supplementing it in certain ways.

All of this is reputable science, by the way.  This isn’t some kind of fringe thing.  So we all have little symbiotes in our bodies.  That’s symbiotic bacteria that live in our guts and often help us out with all kinds of things you’d never expect.  Some of our symbiotes help protect us against C Diff.  I know this may gross some people out.  I think it’s amazing and cool that we have little symbiotes living inside us and helping us.  I want to keep my little symbiotes healthy and happy.  But I might be a very strange person, I admit.

Here’s an excellent overview from the World Journal of Gastroenterology:  Tube Feeding, the Microbiota, and Clostridium Difficile Infection.  So basically there’s a lot of risk factors involved with tube feeding elemental formulas, like the Osmolite that is my main food.  One of those us that the elemental diets seem to feed C Diff pretty well on its own.  But one of those risk factors is that the elemental formulas don’t contain some of the crucial nutrients that feed the symbiotes that protect us against C Diff in the first place.  And that is something you can possibly change even if your main diet still has to be an elemental formula.

blendtecfood
A Blendtec blender with assorted vegetables and water, close to all you need to make soup for your feeding tube.

I got a high-powered blender many years ago because I was having weirdly intense and specific cravings for vegetables.  I got a Blendtec, other people might get a Vitamix or similar.  These blenders are expensive, and mine was a gift from a family member, but they are the only way to blend down food well enough to safely pass through a J-tube.  In addition to a blender, I got a chinois (a kind of heavy-duty strainer), which lets me filter out any remaining tube-clogging residue while pushing through as much thick stuff as I can.  I have had no problem getting the resulting blends down my J-tube as long as I blend thoroughly and use the chinois vigorously.

blendersoup
Asparagus and sunchoke soup, ready to feed all my hungry little symbiotes!

Anyway, I started supplementing my Osmolite diet with blended vegetables.  I just went with whatever vegetables I seemed to be craving.  And they were oddly specific cravings sometimes.  I’d never eaten sunchokes in my life, and suddenly I was eating sunchokes constantly.  There turned out to be reasons for this most of the time.  My symbiotes must’ve been yelling “We’re hungry!  Feed us!” in whatever way they knew best.  When I added the blenderized vegetables to my diet, I felt a strong sense of well-being and my doctors told me there are nutrients in vegetables that we don’t fully understand yet.  So they were fully supportive in what I was doing.

My developmental disability services agency had people in it who were helping me cook these vegetable meals.  We’d basically cook the vegetables as if it was a regular meal, then stick it in the blender with some water, then strain it through the chinois.  I know a lot of people compare these sorts of things to baby food, but I honestly think a better comparison is soup.  So I just called it vegetable soup.  And then I would periodically put small amounts of it down my J-tube using a feeding syringe, although you could probably use a feeding bag and pump if you did it right and made sure it wouldn’t clog any tubing.

tubefeedsoup.jpg
Putting some asparagus and sunchoke soup into my MIC-KEY button J-tube using a 60 mL feeding syringe with a white Christmas tree attachment.

Anyway, at some point the guy who was doing most of the cooking quit to take a different job.  And my access to vegetables started getting more patchy.  I think the agency thought that because I was on Osmolite already, food prep for real vegetables was a luxury.  We were all about to find out how wrong that was.

I didn’t connect it to the vegetables, but for a month or two of less vegetables I was feeling lousy and telling my doctor something was going wrong in my body that was gonna bite us in the ass if we didn’t work out what it was.  I didn’t know I was gonna get the butt plague, mind you.  I just have a good instinct sometimes about things going wrong in my body.  Without further information, though, we couldn’t find anything wrong.

So the vegetables stopped around September.  By November I had nasty diarrhea every day.  Like shart-level diarrhea.  Leading to both yeast infections and bacterial infections of the vagina just for extra fun.  There’s no pretty way of describing it.  The butt plague is a nasty, nasty thing.

I’ve always had some absorption issues, but the C Diff kicked those into high gear.  My absorption of my meds, including steroids, became erratic.  Understand:  I make no cortisol in my body at all.  You can’t survive without cortisol.  Not being able to absorb my hydrocortisone properly or consistently played havoc with my entire body and health status in ways I couldn’t comprehend.  And that’s besides the ever-fluctuating levels of seizure meds and other things that shouldn’t fluctuate.

Dehydration was obviously an issue.  The dehydration kicked into high gear one week when I got about half the developmental disability staff hours I’m supposed to get, mostly through subs who didn’t know what they were doing, and didn’t get any extra water for several days.  I nearly passed out, had trouble breathing, had to raise my steroids just to be able to breathe.  Wildly inconsistent steroid levels even with the high doses resulted in swinging from too much to too little steroids on a dime.  It got dangerous.  My body temperature started going outright hypothermic (94.3 was the lowest), I had more diarrhea because low cortisol levels will do that, and when my steroids were high it suppressed my immune system and allowed the C Diff to flourish even more.  It was loads of fun.

At some point I gave my doctor the Bat Signal (“I’m gonna die, this is not a drill”) and he found the C Diff quickly.  The antibiotics worked and then suddenly didn’t work and I was hospitalized.  I’d already been living away from home about a month at that point due to a combination of being unsafe living alone and being too stubborn to go to the hospital.  (They tried to get me to go to the emergency room for about two straight months before I allowed someone to call 911.)  I got really weak from a combination of dehydration, adrenal insufficiency, and congenital myasthenic syndrome, and realized I was going to pass out or fall (I have severe osteoporosis and broken bones can trigger adrenal crisis) or shit on my friend’s floor or something, so I let her call an ambulance.  I was hospitalized immediately and stayed several weeks.

In the hospital there were two or three main issues to sort out.  One was the C Diff itself.  Another was my steroid situation.  So we discovered the inconsistent absorption and I was put on steroids through my chest port instead of my feeding tube.  This vastly improved things.  But I was still on a much higher dose than I should’ve been.  It turns out that some of my meds might affect the metabolism of steroids.

But more importantly, I probably have an additional medical condition that can come along with adrenal insufficiency (and also two other things I have), and that responds to steroids.  It makes my heart race and I get out of breath when I stand up sometimes.  So I’m still on an ungodly dose of steroids — transitioned back to getting them through my gut, at least, though — which puts me at continued risk for C Diff among many other nasty things.  My severe osteoporosis (I’m 37, I’m told my bones are more like 95-115 depending on the bone, I’ve broken ribs by sleeping on them wrong and have a stress fracture in my spine nobody knows where it came from) is partly from the steroids.  I’m at high diabetes risk.  Steroids are the most dangerous meds I take and the most necessary meds I take.  It’s an ugly balance to have to strike.  There are no good answers and for many people with severe adrenal insufficiency it’s the steroids that keep us alive that ultimately shorten our lifespans.

Anyway, the most important thing for you to know are which nutrients your symbiotes need that you’re not getting in an elemental formula like Osmolite or Nutrin.  There’s basically three important ones, although I’m sure there’s plenty of others:

  • Insoluble fibers
  • Resistant starches
  • Oligopolysaccharides

You can look up which vegetables contain the most of those nutrients, and figure out how best to get them for yourself.  Remember those sunchokes I was craving all the time for no apparent reason for the first time in your life?  Sunchokes turn out to have more oligopolysaccharides than any other vegetable on the planet.  Yeah, my symbiotes have me well-trained, I guess.

So definitely look up which vegetables you can get those things out of.  And then I’d say go with a combination of that knowledge and what vegetables feel right to be eating.  You might not have that this just feels right thing and that’s okay.  But if you do, run with it.  Every vegetable I was craving (and they were weirdly specific and intense cravings) turned out to be high in at least one of these three nutrient types. Your mileage may vary.  And always check out the actual scientific information on these vegetables, your instincts are no substitute for that.  But my gut instinct (no pun intended) turned out to be shockingly accurate, and you might find the same.

My doctors, for what it’s worth, are 100% supportive of my efforts to get vegetables back into my diet by any means necessary.  They agree with me that this was a major risk factor in my getting a C Diff infection.  And once infected, always at risk for the rest of my life.  So this is a very important thing to try and prevent, even if you seem to have no symptoms.  C Diff can be dangerous, is highly contagious (I was on isolation protocol my entire hospital stay even after I got over it) and can be resistant to antibiotics.  Even healthy people are turning up with C Diff these days.  Trust me, C Diff is something you absolutely do not want if you have any way of preventing it.

So if you remember nothing else from this post, remember those three nutrients:

  • Insoluble fibers
  • Resistant Starches
  • Oligopolysaccharides

Find ways to get these things into your body if at all possible.  Keep your little symbiotes happy, they need you and you need them, that’s how symbiosis works!  And if your symbiotes are happy, you’ll likely be happier (and healthier) too.  And stand a better chance of fighting off the Dreaded Butt Plague.

Photo on 5-14-18 at 5.38 AM
I am now happy, presumably C Diff free (although I have to watch out for it forever now), on a stable dose of steroids, and at home with my kitten for the first time in a couple months.  Try not to let any of this happen to you.  It was gnarly, it was dangerous, it could’ve killed me, it’s very contagious, you definitely don’t want this.