Last night or early this morning depending on one's perception of time my atypical paralyzed body began misbehaving. This is the worst my body has felt in over twenty years. Like many people with a spinal cord injury, I experience, mild, moderate, and severe spasms. The variation in my spasticity ranges wildly and my legs always have a lot of tone. Over time I have learned to adapt and use my spasticity. I also know what makes my spasticity increase or decrease. Cold, think icy temperatures, and movement help the most. I am most comfortable outdoors moving in the cold. Skiing is awesome as is any outdoor activity such as hiking or kayaking. At the opposite side of spectrum heat and a lack of movement sharply increase my tone and spasticity. Regardless of the day I need to move. I cannot be sedentary for too long. This is not good for an academic but as I wrote I have adapted.
Today has been bad and I am truly miserable. For the last seven or eight hours my right hip where my wound was is on fire. Obviously I checked my skin; it is fine. My legs are in near total spasm. My feet are arched up at a strange angle. I have severe rolling spasms in my torso. They run up and down my stomach in waves--nonstop waves since about 3:30AM. It is creepy to watch my stomach. It reminds me of when my wife was near to giving birth to my son. Her entire belly could change shape. I truly hate the sensation and spasms in my stomach. I cannot eat or drink without feeling sick. At this point I am very sore. My back hurts because I cannot sit normally. Muscles that are not normally taxed are being taxed in the extreme. My over developed lats are tight as a drum. I tried all the little tricks paralyzed people learn over time to decrease my spasms. I took an ice cold bath. Did not work. I took a very cold shower. Did not work. I went for a walk with Kate over bumpy terrain. Did not work. I pushed over grass and through an outdoor sprinkler. Did not work. I cannot drink alcohol because it is too hot and will only make me feel sick. I put cold ice wrapped towels on and off my legs. Did not work. Forget medication. I took baclofen for years--the go to drug for spasticity. I am not sure which was more trouble--spasticity or baclofen. Most other medications for spasms are largely ineffectual. I should amend that statement; most legal medications are ineffectual. Pot as many people can attest has a profound impact on spasticity. My legs turn to butter if I smoke pot. It is really amazing the instant impact pot has on spasms. The problem is pot is not legal in New York. I will not break the law. With my luck I will light up a joint (as if I could find one) and the local cops will drive by. The world has little sympathy for middle aged white men in suburbia who smoke dope. I cannot and will not take the risk. I support the effort to legalize pot but that is another story entirely.
Here I sit in a weird situation that demonstrates what we know about neurology, specifically spasticity, can fit into a thimble. How can one create a drug for spasticity when it ranges wildly from person to person. Spasms are unpredictable and today have pretty much precluded me from getting anything done. I have modest wishes now--I just want the stomach spasms to lessen. They bother me and can even make breathing uncomfortable if they extend up to the peak of my level of paralysis. This has happened a few times in the last few hours. In short, I am a mess. Spasms suck. Yup, that is my Ivy League PhD level of analysis. Spasms suck. So anyone with any ideas, legal ideas, I am all ears.
I do have one idea. A big walk in freezer might help relieve my spasms. This raises my level of desperation to a new level and creates a strange possible social dynamic. Can you imagine this? I walk into BJs or Costco and ask to see the manager. Some poor over worked guy will ask what can I do for you. So there I am in shorts and a t-shirt. Can I go into your walk in freezer for an hour or so to relieve my spasticity? I am not sure what the reaction would be but I would wager my request would be a first.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Saturday, June 1, 2013
A Bad Day: Suggestions Welcome
Posted by william Peace at 10:14 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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Diazepam oral drops or rectal (diastat) is what comes to mind.
The milk room @ Costco's is super cold. And so is an Ice Cream store or Butcher shop. I hope this helps.
Some supermarkets have beer sections that are really cold.
Didn't they just have snow in Vermont? Road trip.
Although it's not good to depend on it regularly, what about demon rum? Or demon whiskey?
Aren't spasms also a sign of unpleasant things to come, such as a UTI?
If you have a dramatic upsurge in spasms, shouldn't you see a doctor? It could be a sign that something is wrong - if the place where you had a major pressure wound felt like it was on fire but the skin was fine, perhaps whatever's wrong is underneath.
The only thing which gives my son any relief from extreme spasticity, and we have tried them all, is valium (iazepam), 10 mg. Sativex, an oral spray which is high in CBD and low in THC is before the FDA for approval in late 2013. Available in CA and UK. Has been clinically effective in spasticity studies in MS.
Wow great suggestions one and all.
Eric, Diazepam has zero affect. Tried it more than a few times. It is a very good suggestion though.
Melanie, I was at the local A&P. Bought ice I did not need. Spent much time in the freezer section too.
Erica, Sadly I have stopped drinking beer. I have a middle aged man's bladder. A very sad turn of events.
Becs, Yes a sudden change in spasticity is a sign of a number of potentially serious complications. My skin is ok as is my bladder. I have no heat or redness that I can identify. What I am feeling is comparable to what I experienced when I was first paralyzed.
Claire, Applications are being gladly accepted on your suggestion. Feel free to volunteer!
Matthew, That was my first thought too; I have a serious problem my paralyzed body is reacting to.
Phil, Good suggestions. A very high dose of valium would do the trick. This requires a trip to the ER or on Monday a visit to the internist. These are too costly and I hate being zonked out mentally. Prefer pain and discomfort--remember I am a Catholic, we specialize in suffering. As mentioned above Diazepam is not effective. I have not heard of Sativex. I must say I am taken aback you chose to comment given our previous exchange. I do appreciate your suggestions. I am sincerely thankful.
I am trying to think of a way to ask to get into a walk-in freezer... coming up blank.
What about an indoor ice rink? Do they have hockey where you are? I know around here you can rent time on the ice... just a thought...
Ice bath? Just thinking of ways to cool down your whole self, not just some outer bits...
It's absurd and outrageous that you aren't free to utilize a beneficial plant you could grow right in your garden. Sorry, that's a mini-rant, not a helpful suggestion. Even this week's Barron's chimes in: "Legalizing marijuana will hurt drug lords, help cash-strapped states, and ease burdens on police and prisons. Yet D.C. dithers."
Glad you're feeling better, but in the spirit of "too little, too late"...
It does sound like there must be some trigger. If skin and bladder are ruled out... could it be something orthopedic in that hip/pelvic area? Any jarring or other mechanical insult in recent memory - a transfer with a hard landing that didn't seem like a big deal at the time, for example? Could be an SI joint out of whack or even bony injury to your pelvis or hip. If everything "medical" checks out OK, getting looked at from an an alignment perspective or even getting x-rays might be warranted.
If all else fails, you're pretty close to several neighboring states with medical cannabis statutes...
Hope it's all moot because the mechanical-bull-grade spasticity does not return, but that's what I've got to run up the flagpole. Hope you keep feeling better.
Have you tried any of the legal THC-based medications? Marinol is the one I had luck with, but there's another one as well. Spasm and pain are not on-label uses, but it's commonly prescribed off-label for pain and spasm, among other things. I have no idea how well it would work for your spasms specifically, but it might be worth trying.
I should add that Marinol is legally prescribed in the US. (Last I heard Sativex was not legal in the US because it's marijuana-derived rather than synthetic like the two THC meds that are legal here.)
A. The fact pot is illegal makes no sense to me. Alcohol can be purchased seven days a week and virtually at time of day or not. And how many lives and families has alcohol destroyed? More than I want to know.
Lynn, Since my wound in 2010 I am past careful transferring. Paranoid is a word that fits. No falls or any sort of jarring took place. My left hip, dislocated 25 years ago is its usual crunchy self. Two days later my spasms are back to normal. I dread seeing a physician. It is expensive and 95% of them do not understand paralysis.
Penelope, I hesitate to take any medication. In the rare event I do take medication it is used as a measure of last resort. However, I will keep Marinol in mind.
Jesus - I feel for you... remember the spasms Don had and all of that... a nurse gave us the recipe for pot bickies (cookies to yankees) but Don seemed to be able to cope without my cooking this into the biscuits - Pot is a great help and sadly they the law punish the good to get the bad... I hope today was better
I've seen some people benefit from Marinol while inpatient, but I have yet to see anybody get it covered by insurance outside a hospital, and it's crazy-expensive to self-pay - like, close to 1K/month, for something that's commonly acknowledged to be somewhat less effective than what grows out of the ground for free. Yes, it's crazy that cannabis is illegal at all, much less for "compassionate use," - and I say that as a lifelong non-user. I've been around lots of legal medical marijuana "patients" who would've been happy to share, but I always felt that if I want to be a credible supporter of legal use, respecting the law as it's written is part of the deal. Policy is evolving, but it sure is painfully slow.
MiddleChild, More often than note my spasticity does not bother me. It ranges wildly within any given day. In fact I find it can be helpful when transferring from wheelchair to bed or car (spasms pull char closer while I shift). But once on a blue moon I have a terrible day.
Lynn, You are correct Marinol is crazy expensive. I will check that drug off my list forever. Like most people I smoked pot in college. Pretty much everyone I knew did. Since I graduated in 1982 I have smoked pot a grand total of twice. Let me tell you pot turns my legs to putty. But the fact remains it is illegal and until that changes I am not going to use it. Like you, I think the continued refusal to make pot legal makes no sense.
I hope your muscle spasms have reduced in the past week. Didn't realize that spasms/dysautonomia are related--at least it sounds as if they are. Urinalysis and bloodwork to check for infection anywhere? Even men can get UTIs. There are test strips you can purchase, but not so helpful as culture.
I don't have any suggestions other than what everyone else has said--and hoping there's a sea change that helps patients.
Frida, I am back to normal. Had a rough 36 hours for no known reason. No MDs for me. Too costly and time consuming. I only go to the MD if I am so sick i cannot function.
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