Mutiny on the Body: Living With the Terminal Velocity of Incurable, Hereditary and Degenerative Disabilities

park“Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.” – Neil Marcus

So, I got an upgrade. It has nothing to do with bits, bytes or ram. I am disabled, and my conditions are varied. Due to their nature and the present stage of research into neurological disorders, diagnoses are inherently difficult and sometimes change. I’ve had a lot of poking, pricking, shocking, scanning and other tests over the years, including spinal taps, nerve conduction tests, MRI’s, etc.

Back in February, my Neurologist said the diagnosis of Primary Progressive Multiple Sclerosis I got from UNC Chapel Hill Medical Center was incorrect. OK, I’ve been misdiagnosed before. Autoimmune diseases aren’t easy to pin down, and I’ve got four of them. Not a real big shock, there. So after a few more tests, he tells me it looks like Parkinson’s Disease. Had to cleanse my body of all the medicines I had been on for years, which, unfortunately, coincided with the Reason Rally, the American Atheists, Inc., 2012 convention and Rock Beyond Belief. Grounded, in bed, restricted from travel for a while as my body acclimated to a new regimen of drugs. OK, again. Been there, done that.

More tests on the slate, including a battery of memory tests and something called a Sural Nerve Biopsy. The memory tests were ordered because, well, it seems my short-term memory is failing kinda faster than it had been, my long-term memory has gaps and I occasionally become disoriented and have gotten lost in my own neighborhood. The results were of concern to my Neurologist. So, he orders something called a DAT-Scan, which consists basically of lying down on a giant spoon with your hands and legs strapped down, another band across the chin and another across the forehead. Once this is accomplished, your head is shoved in a rotating box about four microns away from your face for about forty minutes.

So it goes…

Results are something called “Parkinson’s Plus Syndrome,” or PPS. Hence my upgrade, because Parkinson’s by itself isn’t enough of a pain in the ass. So, what the hell is Parkinson’s Plus Syndrome?

A Little information from the Parkinson’s Disease Foundation about PPS:

“By far themost common form of PPS is idiopathic, or classic Parkinson’s disease (PD). But for a significant minority of diagnoses — about 15 percent of the total — one of the Parkinson’s plus syndromes (PPS) may be present. These syndromes include corticobasal degeneration, Lewy body dementia, multiple systematrophy, and progressive supranuclear palsy. Each of these syndromes has its own distinctive set of symptoms that can help doctors diagnose them. Although there is currently no cure for Parkinson’s plus syndromes, researchers are making advances to better understand and manage them.”

In my case, there are all the symptoms of classic Parkinson’s, plus a few other things as an added bonus. Parkinson’s and Parkinson’s Plus Syndrome both share an insufficiency of dopamine in the basal ganglia (sciency stuff about the part of the brain that controls movement). I will do my best to describe the details of these conditions, so if you are interested, read on. Here’s a basic rundown of what my PPS consists of and how it is manifesting in me:

Cortical-Basal Ganglionic Gegeneration…

The doctors call this “CBGD,” which should not be confused with the 1980’s punk rock club “CBGB.” Basically, this causes a shrinking of the brain. I thought I heard rattling in there. CBGD includes a condition called “apraxia”, which is an inability to perform coordinated movements or use familiar objects. I refer to it as “constantly knocking shit over.” I compensate for this by approaching free-standing objects very deliberately. I do not drink anything without a secure lid on it. Consequently, I drink from what can only be described as an “adult sippy cup.” I do, however, drop stuff a lot, so if you ask me to hold something that you value, you should know that it might end up being the victim of a gravity attack. I can still type really good, though. As a writer, I find this very useful – although the printing on my backspace and delete keys are fairly worn down.

CBGD also includes something called “pronounced asymmetry,” which I like to call “stiff as a board.” Almost comically, “apraxia” and “pronounced asymmetry” work in perfect tandem with their friend, “myoclonus,” which causes twitching or jerking in the hands. I find this handy when I feel the need to flip someone off. What? Me, flip you off? Nevah! It’s a medical condition. Promise…

These three symptoms are the ones responsible for my problems with balance and coordination, some occasional difficulty speaking (prolonged moments of silence – which actually last about a second or three, but to me, seems like minutes) and concentrating, progressive problems with moving, thinking and remembering, and a gradual increase in problems with understanding spoken or written language. So, if I have to ask you, “What?” a gazillion times, just be patient…

So far, the only symptoms that have presented a real problem for me involve my mobility and my ability to recall and concentrate. Occasionally I have to deal with Aphasia, which I will explain a little more later. Thus far, my reading skills remain intact. Remembering what I read, however, is becoming more problematic. I have some issues with something called “alien limb,” which has to do with trouble controlling the movement of a limb.

Lewy Body Dementia… 

Also called “LBD,” this involves a progressive cognitive decline, combined with pronounced fluctuations in alertness and attention, complex visual hallucinations and motor symptoms, such as rigidity and the loss of spontaneous movement. This is caused by abnormal structures called “Lewy Bodies” that form in certain areas of the brain. The effect is like a combination of Parkinson’s and Alzheimer’s. This comes in handy, though. I can watch movies and TV shows that I’ve already seen, and it’s like I’ve never seen them before.

I am not experiencing any visual hallucinations that I am aware of, but because my memory is failing, sometimes I “space out.” The rigidity and loss of spontaneous movement is something I’ve had for quite some time and have gotten pretty good at compensating. The best part about this, though, is seeing the frustration on people’s faces when they try to scare or startle me. Sometimes it works. However, when I do not respond, it confuses the hell out people. They wonder why “sneaking up on me and making a loud noise” doesn’t usually produce their desired results. Of course, there are times when people scare the living shit out of me. Problem is, I never know when either of these results will happen, which actually causes me to chuckle…

Multiple System Atrophy…

Or MSA (These guys LOVE abbreviations). This one is actually no fun at all. It involves symptoms of autonomic nervous system failure. Meaning light-headedness, the occasional fainting spell. I’ve not had many problems with this, but the doctors tell me to be patient, it will come. I have no doubt they are right.

Some of the other problems associated with MSA include not giving a shit (Constipation), erectile failure (so far, so good, though Whew!) and urinary retention (this is actually starting to really piss me off <intended pun>), as anyone who gets up four or five times through the night to pee will attest to. Because you have to find a way to make light of things, I find that another aspect of MSA that includes slurred speech comes in really handy at traffic stops.

A digression here. I drive a big old Chevy, which some of you who are middle-aged know have a tendency to “drift” a little – as most land yachts will. This causes me to get pulled over from time to time (read: a lot) by the local constabulary. Now, I don’t generally drink alcohol because it just doesn’t mix with the pharma-cocktail I take, so I never have to worry about getting a DUI. So, when I do get pulled over, it really frustrates the cops, it becomes a game.

Wen they see me weaving a bit, they think I am impaired. When they get close enough and see my handicap plates, they figure if it ain’t alcohol, it’s prescription drugs. Then the games begin. I can see the “I got one!” excitement in their eyes when they approach me and ask for my papers… er… license and registration. More excitement ensues when my voice sounds less than sobery. Then, the frustration sets in when they realize I cannot complete a field sobriety test because I couldn’t walk a straight line if my life depended on it, and touching my nose with my eyes closed is almost a circus act. If it is particularly late at night, I might even pause a time or two while reciting the alphabet.

I have learned two things, though. One, I really hate having to blow into that BAC thingy. Two, it is very important to explain to the police that the long, black stick I’m grabbing while getting out of the car is not a shotgun, but a cane. Important safety tip, because it really sucks when someone points a gun at you. Moving on…

Progressive Supranuclear Palsy… 

Or, PSP (of course). Basically, this means include frequent falls, which I compensate for with mobility aids such as wheelchairs, canes and walkers – depending on what kind of day I am having. It also affects my ability to aim my eyes properly, which I admittedly have fun with in the presence of small children and the aforementioned police officers. The reaction to one eye looking inward and the other eye looking straight ahead, or both eyes moving independently is priceless.

There’s another symptom of PSP involves what they call “emotional and personality changes.” There are many aspects to this, but basically you can call them “mood swings.” This is not the same as depression, which I will cover later.  A common response to these mood swings might include communication from others in the form of phrases like, “What the hell is wrong with you?” or “Hello, Mr. Grumpy Pants.”

From the Parkinson’s Disease Foundation:

“Parkinson’s plus syndromes can be very difficult to diagnose and are difficult to treat. Because the cardinal symptoms of the individual disorders may take a long time to become visible or may never appear at all… In addition, because these syndromes are complex and rare, complete diagnostic clarity may only come after the patient has been followed for several years by a movement disorder specialist (MDS)—that is, a neurologist who has completed additional, specialized training in movement disorders.”

These are the main symptoms of PPS I have, or am having to deal with. The other shit that I am dealing with are as follows:

Genetically Acquired Chronic Peripheral Neuropathy… 

This is the one I have had for many, many years and the first symptom that presented. I was very young, and back in the early 1970’s, my pediatrician thought it was something called “shin splints.” Inherited or Genetically Acquired Peripheral Neuropathy is caused by “inborn mistakes” in my genetic code and in my case, began in early childhood. I got a permanent excuse from Phys Ed classes from the eighth grade, onward. This was handy because I was woefully uncoordinated and kind chubby – which made me very unpopular in gym class. In a nutshell, my PN is resultant from flaws in my genes that are responsible for manufacturing neurons or the myelin sheath.

This accounts for the extreme weakening and wasting of the muscles in my lower legs and feet, my gait abnormalities (I walk funny), the loss of my tendon reflexes and numbness in the lower limbs. Numbness being an understatement, because the sensory nerve damage to my nervous system – the loss of the coating that insulates my nerves – effect how my body registers vibration, light touch, and position sense. Thus, my feet feel like I am walking on white-hot broken glass while wearing six pairs of wet socks on feet that have fallen asleep with those pins and needles. I don’t have to actually be walking to experience this.

Neuropathic pain is worse at night, and it seriously disrupts my sleep. It’s an odd paradox, though. On the one hand, my feet and lower legs are in constant pain on the neural level – but on the dermal level, I have almost no sensation. Thus, I may fail to sense that they have been injured from a cut or that a wound is becoming infected. I used to freak people out by pinning small pieces of paper to my shins with thumbtacks, but my doctors told me to quit it. Something about infections, etc. Thus, I never wear shorts and am never shoeless, except in bed, which is complicated by the fact that my wife I puppysit for my daughter’s puppies, and they like to chew on toes. Ew…

My upper body and torso is affected differently, though. In this part of my body, the pain receptors in my skin are oversensitized. This makes some things hurt me that do not hurt others. Showering is a particularly painful experience, but my aversion to being stinky overtakes the feeling of millions of sewing needles being spewed out of my shower nozzle at a gazillion miles-per-hour and hitting my body in lilliputian style salvos. So, don’t worry, if you meet me, you won’t smell me.

Distal Polyneuropathy… 

This is the definition that is given to the PN symptoms that affect extremities, such as my toes, fingers, hands and feet. It’s pretty much the same as I described above, effecting my sensory, autonomic and motor nerve fibers. Why they have given it it’s own name surrounds the fact that some people only get neuropathies in these extremities.

The most annoying aspect of this is the involuntary curling of my fingers. To me, it makes no difference, except having to add another line of information on medical forms and paperwork for the Social Security Administration.

Trigeminal Neuralgia…

OK, this one is particularly annoying. Basically, it addresses facial nerve pain. It’s not so much the occasional twinges of mild pain, even though some of the episodes can be severe. What’s most problematic is the shooting or jabbing pain that feels like I am being electrocuted. Kind of like excessive bursts of nervous activity from a damaged nerve that cause painful attacks.

These attacks are, of course, spontaneous and can be triggered by things like touching my face, chewing and brushing my teeth. Fortunately, they last a few seconds – kind of like a horrific but extremely short-lived migraine.

TN is caused by damage to the trigeminal nerve branches in my cheek, jaw, teeth, gums and lips – which gives me good reason to hate going to the dentist. In a nutshell, there are three branches of the trigeminal nerve. The ophthalmic, maxillary, and mandibular. The pain of trigeminal neuralgia is almost exclusively from the maxillary and mandibular divisions, most commonly in the maxillary nerve, which runs along my cheekbone, most of my nose, upper lip, and upper teeth. Thus, most of the pain is in my lower cheek, lower lip, and jaw.

The pain affects only one side of my face at a time. Sometimes it’s focused in one spot, occasionally it spreads a little. I like to call these “ning ning attacks,” because a good audible description would sound something like the sound being played when Norman Bates is stabbing that poor girl in the shower.

Ataxia…

I was diagnosed with Ataxia back in the late 1990’s, and for the last twelve or so years it was a stand-alone disease. This condition, however, has been incorporated as a symptom of Parkinson’s Plus Syndrome. I still have this, but at least now I know why. A little info for you from The National Ataxia Foundation:

The word “ataxia”, comes from the Greek word, “a taxis” meaning “without order or incoordination”. The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements.

The word ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system. Ataxia is also used to denote a group of specific degenerative diseases of the nervous system called the hereditary and sporadic. 

Aphasia…

Aphasia is an impairment of my language ability. It can range from having difficulty remembering words to being completely unable to speak, read, or write. It has to do with the ability to process language, but does not affect intelligence. Basically, it impairs the ability to speak sometimes. So far, though, this has not hampered my ability to deliver lectures. So, you can still invite me to your events, people.

By far, the most common cause of aphasia is stroke. It can also result from head injury or a brain tumor, but mine is a result of my neurological diseases. More specifically, mine is called “Anomic Aphasia,” which is the frustration of not being able to speak the words for the things I want to talk about. I understand speech well and read more than adequately. You know that “I got it on the tip of my tongue” thing? Yeah, I get that.

Melanoma… 

This is more of an annoyance, because so far they have all been benign. Occasionally I will have chunks of me lopped off, and the doctors are keeping an eye on a couple dozen different types of melanomas that are distributed throughout epidermis. I keep very aware of these, as I lost my mother to Cancer in 1985, my grandmother had cancer, one of my sisters is a cancer survivor, etc.

Admittedly, I know extremely little about cancer, though. From what the doctors tell me, there is a form of hereditary melanoma that follows something called an “autosomal dominant inheritance pattern.” Now, again, I am way out of my area here, but essentially, this means that a mutation needs to happen in only one copy of the gene in order for an increased risk of getting a disease. Statistically speaking, a parent with a gene mutation may pass on a copy of either a normal gene or a mutated one. Thus, I have a fifty percent chance of inheriting what my parents had. This is what happened with my neuropathies. My and both of my sisters have various neuropathies, and one of my daughters does, as well. I know virtually nothing about the hereditary inclinations of cancer, though.

The types of melanomas I have include Hemangiomas, which are blood vessel growths. Another type of melanoma I have is called Seborrheic Keratoses, which are tan, brown, or black raised spots with a waxy or rough textures. Included are various Lipomas and the ever-present moles and skin tags.

Depression… 

Well, you had to figure that was inevitable. I do try to keep a positive outlook on life. Since I hold no belief in a god or an afterlife, I need to do everything I can to make sure I squeeze as much out of my life as I possibly can. There are times, however, where it gets awfully overwhelming, and sometimes this can last a while. Specifically, my diagnosis is a called “Major Depressive Disorder” or “Clinical Depression.”  This is a very complicated issue, and I am not qualified to expound on it from any other aspect other than a personal one. Suffice to say, many people are dealing with depression, and if you meet someone who is, please don’t tell them to “buck up.”

What is problematic is that I am already fatigued due to my physical disabilities, and the added fatigue of depression exacerbates things. When I am battling depression, one of the biggest issues I face are feelings of worthlessness. This is a paradox for me, as an atheist. I have encountered many people of faith who also experience feelings of worthlessness, but those feelings are often associated with their religion – particularly the Abrahamic faiths that teach things like the doctrine of original sin or biblical concepts such as being born as “filthy rags” in the sight of their god, etc.

For me, it surrounds my inability to do the things that I used to. Running, going on long walks, dancing with my wife, climbing and hiking or the sometimes insurmountable ability to access places because they are not ADA friendly. Basically, anything that I had been capable of doing before becoming disabled. Other issues surround needing a caregiver sometimes, or the feeling of being a burden on my friends and family. My depression is inadvertently responsible for insomnia and a loss of interest or pleasure in daily activities. As well, my weight fluctuates thirty pounds in either direction and I have had the occasional thought of suicide over the last decade. Paxil works wonders, though, and I am usually pretty happy these days, all things considered.

High Blood Pressure… 

This is a new one, for me. For as long as I can remember, my blood pressure has always been a steady 120/80. Recently, though, it had begun to elevate – having reached as high as 161/122. I am sure that my sedentary lifestyle, the fact that I eat like shit and that I smoke a pack of cigarettes every day are major contributing factors. I have made many attempts to exercise, but it’s extremely painful, so I generally avoid it like the plague. I have begun to change my eating habits, but old habits die hard and I have a penchant for things I really shouldn’t be shoving down my throat.

Smoking presents a whole other issue. Pick a smoking cessation program, any smoking cessation program. I have tried them all. Even the one you are thinking about right now and are sure that I have never heard of. Well, I have. All of them have failed. The only thing I can think of is that somewhere, deep down, I do not want to quit. Perhaps I have a death wish. Perhaps it is the convoluted logic that my other disabilities will kill me before lung cancer will get its shot at me. Either way, I smoke and will likely smoke until the day they plant my ass in the ground. It is what it is.

Final Thoughts… 

My disabilities are the product of natural selection. The mutations in my genes have been processing for generations on end, and I reason that somewhere in the future of our species there will come an individual or individuals with brilliant minds who will build on the research that is being done today in genetics which will allow the genetic mutations that cause the myriad of diseases that are present in the world to be eradicated.

With respect to managing my various illnesses, it presents a unique problem for me, because I take issue with “Big Pharma” for so many reasons. However, the fact of the matter is that the handful of pills I take every day and throughout the day make it possible for me to function in society and to continue to still do some of the things I enjoy.

  37 comments for “Mutiny on the Body: Living With the Terminal Velocity of Incurable, Hereditary and Degenerative Disabilities

  1. September 10, 2012 at 11:07 am

    Jeez, that’s a list!

    Having my own (shorter) list, I can empathize.

    It also sounds like a visit with a decently competent occupational therapist might help (I’m an OT with a List, so maybe I’m biased)

  2. September 10, 2012 at 11:53 am

    That must be really tough. Very, very gentle hugs.

    • September 10, 2012 at 12:17 pm

      All hugs accepted with much thanks 🙂

  3. magistramarla
    September 10, 2012 at 2:21 pm

    Al,
    That was a wonderful, descriptive post.
    I also have several overlapping AI diseases.
    My rheumatologist called it Mixed Connective Tissue Disease.
    I have overlaps of Lupus, Sjogren’s, RA and Psoriatic Arthritis.
    Throw in a few other syndromes, like Spasmodic Dysphonia, Autoimmune Inner Ear Disorder, Raynaud’s and some Peripheral Neuropathy and there you have me.

    I know exactly what you mean about the numb, tingling feet and I loved your description. It makes driving a real challenge when I can’t tell how much pressure I’m putting on the brake or the accelerator and I never know when my leg might spasm uncontrollably. When I asked a neurologist what to do about this, he told me that there was nothing wrong with my muscles, and that I should pay better attention to my speedometer!

    I’ve had many of the same tests, including a muscle biopsy. My students loved the scar. They told me to tell incoming freshmen that it was the result of breaking up a gang fight in the cafeteria!

    I’ve been told that I have some sort of ataxia, too. None of the docs can determine why, though. I’ve found that Sjogren’s has some neurological manifestations, so I’m thinking that it might be the culprit.

    Aphasia – got that, too. My husband has gotten really good at finishing my sentences when I’m at a loss for words. It bugs me, because I’ve always had a huge vocabulary. When I was teaching Latin, I would sometimes forget the vocab words that I had recently taught. The students thought that I was playing a game with them, so they would happily fill in the word. I rolled with it, and we did lots of those games of “fill in the vocab word when the teacher pauses”.

    I also use a cane, a rollator and sometimes a wheelchair. The coolest thing is that I now have a German Shepherd who is my mobility dog. My daughter, a professional dog trainer, trained him to work with me. He walks next to me, providing a counter-balance. He will stiffen so that I can lean on him on curbs and stairs. He even comes running to let me lean on him when I’m stepping over the tub after my shower.
    He also helps with those “down days” – he is so loving and loyal.
    Good luck to you, Al. We’re in this together.

  4. hexidecima
    September 10, 2012 at 2:30 pm

    well, Al, my dad is in his 70s and still smokes, and evidently no lung cancer to be found. So I’d smoke em if you got em, if they content you.

    Fairly recently heard about lewes body dementia. A local newscaster’s husband had it and she documented her life with him. More we hear about such things the better it is, IMO.

  5. Kenn
    September 10, 2012 at 4:52 pm

    Just stopped to comment because my grandfather had Parkinson’s. Here’s to hoping the doctor’s can do something for you and, if not, can make life as easy for you as possible.

  6. kemist, Dark Lord of the Sith
    September 10, 2012 at 6:19 pm

    Suffice to say, many people are dealing with depression, and if you meet someone who is, please don’t tell them to “buck up.”

    QFT !!!

    Seriously: Shittiest. Response. Ever.

    For anyone going through depression.

    It’s terribly heavy feeling that bad. Having someone invalidate those feelings is like adding another metric ton of shit to your load.

    • No Light
      September 10, 2012 at 8:04 pm

      This. Of all the physical stuff I have to cope with (see below) it is nothing compared to the mental illness.

      The crushing depression, the OCD, the trauma related issues. All the physical pain in the world is so simple compared to mental pain.

      And, even though the autoimmune stuff is invisible, at least people can summon up sympathy. The same people can be complete arseholes when it comes to mind crises.

      “Get over it” or “Smile” is a knife to the heart. Dualism has a lot to answer for.

      • September 11, 2012 at 8:54 am

        Yeah, I get a lot of that when I am going through a bad time. “Cheer Up” is usually met with a reply that is somewhat less than cheery…

    • September 11, 2012 at 8:57 am

      Seriously: Shittiest. Response. Ever.

      Yeah, and there are several others.

  7. loreo
    September 10, 2012 at 6:25 pm

    Wow.

    I didn’t know any of that.

    Thanks for teaching me, that all sounds horrible, but I’ll be better equipped to understand people I encounter who may have these conditions.

  8. No Light
    September 10, 2012 at 7:53 pm

    I have a remarkably similar constellation of symptoms, as well as a neurological disorder that makes me feel concussed 24/7, nystagmus, pernicious anaemia, asthma, and a load of nasty woman-issues.

    I’ve been in this room since march. I need help with everything, and this phone is my portal to the world. I’m happy though. Poor as shit, in constant pain, but happy because I’ve improved a bit since my march crisis, because I have a roof over my head and a full tummy, and I’m loved.

    Oh, and no god or hell, or punishments, or requirements hanging over me. Just working to make this world, this life, as meaningful as possible.

    Life is good. I have medication, internet, a great partner, and a hiking hydration pack full of pop. I kept throwing my sippy cups at my own face!

    I’m not worrying about divine punishments for “sins”, and the lack of that constant weight on me is worth everything.

    Huge and clumsy hugs, from someone who knows that “feet being shot with staple guns on fire, yet numb and dumb like a pair of wellies filled with lead” feeling.

    Hopefully I’ll be getting my stairlift (and back in our room, yeah!) and a kicking electro rocket chair to replace my manual wheels.

    Luck and love to everyone in pain, or immobilised, or in a dark place.

    • September 11, 2012 at 8:56 am

      Yes, yes, yes!

      Life is good. I have medication, internet, a great partner

      I would literally be lost without my spouse. Hope that chairlift comes soon. I recently got a Jazzy Select 6 power chair. Thing hauls ASS!

  9. September 10, 2012 at 8:14 pm

    Puts my list of non-degenerative conditions that make me call myself “defective” in perspective. *hugs*, Al.

    • No Light
      September 10, 2012 at 9:36 pm

      I’m not Al, obviously, but from my perspective if someone’s in the worst pain of their lives, or more ill than they’ve ever been (mentally or physically), then it doesn’t matter what someone else has going on.

      it’s like a reverse “Dear Muslima” argument. Someone who’s having their first migraine is in a worse place than I am right now.

      If you’re in a bad way then trying to compare yourself to other people, thinking “Wow, I should be grateful” is only going to make yourself feel bad. Physical and mental pain can’t be compared like that.

      Also, and try not to laugh too hard, but I seriously would not swap with someone who has a stinking head cold, a stubbed toe, or has stepped on a UK 3-pin plug.

      I may be the happy-go-lucky dippy cripple, but if I catch a cold? Might as well be bloody terminal! Jacked up spine? Meh, nothing new. A cold? “WAHHH I WANNA DIIIIE, OMG I HAVE NEVER BEEN SO ILL IN MY LIFE! SMOTHER ME!”

      Hugs if you want them.

      • September 11, 2012 at 8:51 am

        Hugs, taken. Sense of humor, required. 🙂

    • September 11, 2012 at 8:53 am

      Stephanie, I appreciate the perspective, but that does (in no way) invalidate what YOU are experiencing. Hugs back to you, my friend.

  10. September 10, 2012 at 8:53 pm

    *purrs & gentle headbonks*

  11. geocatherder
    September 10, 2012 at 9:13 pm

    Compared with yours, Al, my list is short; blood pressure, blood sugar, cholesterol, arthritis, depression. But I mostly want to comment on depression. I spent years in that particular Valley of Shadow (I’m convinced the Psalmist was talking about depression) before I was treated well enough that I manage to stay on the cliff above the Valley. But I’m still very aware of its closeness. Whatever else you do, at the first sign that the Paxil may not be working as well as it should, whine about it and insist the doc play with the drugs. (The antidepressant pharmacopea is amazing nowadays.) Every time you fall off the cliff into the Valley of Shadow, it’s harder to get out.

    As for other readers: next to “Buck up!” the worst thing you can say is “but what have you got to be depressed about?” In Al’s case there are things to be depressed about, but the root of major depression is chemical imbalance in the brain. Sometimes external stresses can bring that about. Sometimes it’s just there. Then there’s “You don’t need antidepressants, you need to change your attitude!” Don’t go there. Don’t argue with us when we’re suffering from depression, either shut up or encourage our efforts to deal with it from our point of view.

    • September 11, 2012 at 8:52 am

      I think I see an entire article in my future on depression. So much misunderstanding, and so much of it is unnecessary, given what’s available out there.

    • September 11, 2012 at 8:59 am

      Even one disability is bad, Geo. My wife has arthritis, and I wouldn’t wish that on anyone. Depression is one of the easiest topics to learn about on the Interwebz, but for some reason, it is one of the most misunderstood.

  12. jj7212
    September 10, 2012 at 10:10 pm

    You’re a good man, Mr. Stefanelli. An honorable man. Hell, the Godfather of Reason! If only the world could be half as cool as you… Semper Fi.

    • September 11, 2012 at 8:50 am

      Thank you, and thank you for your comments and input into my writing. You are appreciated.

  13. September 10, 2012 at 11:11 pm

    *hug*

  14. Anonymous Atheist
    September 11, 2012 at 3:59 am

    Your ongoing activism in the face of these conditions is impressive.

    If I may comment on one small part of this:

    “Showering is a particularly painful experience, but my aversion to being stinky overtakes the feeling of millions of sewing needles being spewed out of my shower nozzle at a gazillion miles-per-hour and hitting my body in lilliputian style salvos.”

    There are other ways of getting water to reach your body that I’d think would be much less painful for you. Baths, ‘sponge-baths’, or a handheld sprayer that could be brought close to impact a smaller area at a time with lower-velocity water.

    • September 11, 2012 at 8:49 am

      Thank you, AA. Yes, sponge baths are infinitely better. Problem with that is I do not fit well into a normal sized tub. Lmao. I’m a big guy. But, occasionally I do fold myself in half and soak the 40% of my body that actually gets under the water. I had a house many years ago with this huge whirlpool tub. Was great. When I move next year, I think that the size of the bathtub is going to me a priority in choosing 🙂

      • Anonymous Atheist
        September 11, 2012 at 11:20 am

        Something to look forward to 🙂

  15. maureenbrian
    September 11, 2012 at 2:37 pm

    I’m so glad we’ve got you, Al, to be totally matter of fact about that mind-boggling array of conditions, each apparently with extra quirks. How many trolleys does it take to bring your notes into the room?

    A piece by you on depression would be good, almost certainly very good indeed!

    Hugs – as many as you can take!

    • September 11, 2012 at 3:23 pm

      I’ll take ’em all, Maureen. I’ve been thinking about doing a piece on depression for a while, and several here have also suggested it. I will being doing more research, and will include some personal experiences, as well. Paxil is pretty good, but it does have its drawbacks. Other medications were, frankly, horrible. Thanks 🙂

  16. mildlymagnificent
    September 11, 2012 at 7:20 pm

    Yeah. Sooooo boring. The depression and fatigue are the killers for me.

    Apart from a handful of autoimmune disorders, I’ve got one of the milder Charcot-Marie-Tooth genetic neuropathies. Seeing as the arthritis causes pain, it’s a kind of intellectual puzzle game trying to work out whether I’m worn out from coping with the pain or if it’s “just” the fatigue from the CMT sending me to bed for the afternoon.

    It’s annoying though when using scissors or secateurs damages a nerve in the hand and the whole side of that arm/hand is numb for the next 4 or 6 months. Makes the keyboard a bit of a trick when a couple of useless fingers keep inserting random ‘z’s or spaces or caps locking without any intention. Still, I’ll make the most of them while they last. In a decade or so the hand muscles will be wasted away rather than simply weak – and they go a really, really strange shape when that happens. Like a question mark only peculiar. My dad could barely hold a pen for the last few years of his life – I s’pose I could try 2 finger typing.

    Although it was a bit oppressive at first, I found a handy book (not handy just now, it’s in a box), I think the title was Sick and Tired of Feeling Sick and Tired. Useful because it gathered a whole heap of chronic conditions of all kinds, autoimmune, genetic, infectious, degenerative. Pointed out that these often invisible conditions which all caused fatigue, depression and pain in various degrees posed similar problems for sufferers and for their families even though the treatments and prognoses differed substantially. (Oppressive? I had 4 of them.)

    It was an interesting approach rather than tracking down books, literature and online resources which treat each individual condition as an isolated problem.

  17. susans
    September 11, 2012 at 7:52 pm

    I have trigeminal neuralgia. Try covering your face when going out in the cold. If it would not conflict with your other meds, you may want to talk to your doctor about taking one of the anti-seizure drugs like Topamax. For most people, they work better than pain meds. YMMV.

    Talking too much can be a trigger. Train the people you hang out with most often to recognize your hand signals that indicate, “I can’t talk now”.

    There is a good book, “Striking Back!” by George Weigel and Kenneth F. Casey, M.D. published by the Trigeminal Neuralgia Association.

  18. September 14, 2012 at 9:51 pm

    I really like your writing style, fantastic info , thank you for posting

  19. September 30, 2012 at 1:33 am

    I found you while searching to see if anything new was out here for PSP, which my mom had. I really like your style and attitude!

  20. Leeanne Hamar
    October 2, 2012 at 6:13 pm

    At last [technically challenged] I find your profile. You are streets ahead woman!. Can you tell me about dyspraxia from a grown up perspective? I just read a book on the same subject dry and not particularly helpful.Best wishes

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