Monthly Archives: May 2015

Altered States

Altered States

Altered States was a movie released in 1980, one that I recall as being scary, although it’s been decades since I watched it. Here is a synopsis according to IMDB:

A Harvard scientist conducts experiments on himself with a hallucinatory drug and an isolation chamber that may be causing him to regress genetically.

Director: Ken Russell Writers: Paddy Chayefsky (written for the screen by) (as Sidney Aaron) , Paddy Chayefsky (novel)

Stars: William Hurt, Blair Brown, Bob Balaban |

Even though the title of the movie is helping me report on MS, I must say that the movie poster shown (picturing William Hurt) has an unexpected effect of illustrating how many of us feel: upside down, out of our heads. For my purposes, however, the title describes perfectly what one symptom (perhaps all symptoms!) in multiple sclerosis (MS) is like. Indeed, the definition of the symptom known as paresthesia is-


/ˌpærɛsˈθiːzɪə/ noun
1. (pathol) the usual US spelling of paraesthesia
Derived Forms: paresthetic (ˌpærɛsˈθɛtɪk) adjective
A skin sensation, such as burning, prickling, itching, or tingling, with no apparent physical cause.
Collins English Dictionary – Complete & Unabridged 2012 Digital Edition
© William Collins Sons & Co. Ltd. 1979, 1986 © HarperCollins
Publishers 1998, 2000, 2003, 2005, 2006, 2007, 2009, 2012

I have been persistently plagued by numbness in my feet, another paresthesia not listed in the definition. Some people seem to think that when I say my feet feel numb, I must have no feeling in my feet at all, but this is not the case. The sensation in my feet is altered, and the best description is that they are somewhat numb. If you stomp on one of my feet, I will most definitely feel it and will probably have some choice words for you! It’s as though someone has glued a sort of sole to my feet, putting more layers between my skin and the floor. I knew that the numbness was getting worse when I realized that I could no longer safely wear flip-flops, or even other shoes that were loose. I began to walk out of flip-flops and loose shoes, and sometimes I would trip, as I wasn’t always aware that I was literally walking out of my footwear. Still, for a lot of years after this first bothered me, I could and did wear high heels and pumps, as long as they fit snugly. Today, I only wear shoes that are laced up, have a very deep vamp (boots! The best!), or have straps a la’ Mary Janes1, so I know they aren’t coming off. Yes, I admit to enough vanity that I still occasionally grieve this loss, because it represents so much more than what I can wear.
In the past, I’ve felt as if an insect or worse, a spider, was crawling on my leg, when no such thing was happening. This is another altered state or paresthesia.
I used to get a terrible itch even though there was no obvious reason for it: no mosquito bite, no rash, nothing. Once or twice, I scratched these raw. Thankfully, I haven’t gotten one of these in ages.
The most uncomfortable paresthesia that I’ve experienced by far, is one known as the MS Hug, which is a complete misnomer. Hugs are usually good things, but the MS hug is the sensation that you are being squeezed around your midsection. Some people have likened it to what they imagine it would feel like to be in the grips of a boa constrictor. boa.jpg (11.2KB; 243x208 pixels) I count myself lucky, because I experienced this before I had been diagnosed, but haven’t dealt with it since. Some people with MS have this on a regular basis, and despite the cute graphic, it is no fun at all.
One aspect of dealing with MS is that so many of its symptoms are invisible. Even though until relatively recently, no layperson could tell by looking at me that I had MS, I had many symptoms that inwardly were making my functioning difficult. You can’t escape the invisible symptoms, but there they are, making you question your ability to walk, wondering if you should change shoes today based on your work schedule, and worrying that you’ll walk “funny,” and people will ask why. It’s a constant drumbeat in your head, and a huge distraction. The apparent lack of acute attacks or symptoms does not mean that the person with MS feels great. In my experience, it never goes away.
1  Like this mj.jpeg (6.8KB; 275x183 pixels) but many years ago, like this! : D kidmj.jpg (3.7KB; 225x225 pixels)