July 29, 2017

Sex and disability - yes yes yes!

A lovely series about sex and disability - check it out!


An excerpt:

There is nothing wrong with disabled sexuality

Disabled sexuality is very stigmatized in many cultures, and there are a lot of reasons why, some of which start with the belief that disabled people are "innocent" and need to be protected from the big bad world. You may have encountered attitudes suggesting that disabled people who have sex are freaky or weird, and that disabled people only have sex when there's a fetish involved. That's not true — lots of disabled people actually have super mundane sex lives, while others are total kinksters, some of whom are even part of the fetish community, but often their fetishes have nothing to do with disability!
Consensual, joyful sexuality isn't wrong or weird or gross or freaky, even if your body doesn't always do what you want it to do or your brain likes to fight you and even if other people want to desexualize you because of your impairment. The only people who should be ashamed of themselves are the ones who think they can dictate what your sexuality looks like because they make assumptions about you on the basis of how your body and brain function.
In fact, there's also something very right about it. Sometimes adaptations that make sex more accessible, fun, and empowering work to your advantage — like being more conscious about communication and taking advantage of props to get comfortable before you get down for sexytimes.

The site talks about many aspects of sexuality, including masturbation and toys, safety and consent, and especially, cognitive issues and sexual relationships.
It's not specifically about MS, but a lot of the issues could apply. Check it out. It's an easy read, and as far as I can tell, full of good info!

April 29, 2017

Sexual dysfunction, anorgasmia, and missing the boat entirely

You have got to love a disease that gradually takes away all your fun. It's a darn good thing we MSers have a sense of humour, or we'd give up in despair.

So you've lost the pleasure of a long hike in the mountains, or the joy of marshmallowing in hot tubs. You can't even sit long without cramping and you love a good drink but hate the subsequent smell of pee as your bladder misbehaves.

Coffee may be your best friend when at home, and your enemy when out, unless you locate yourself next to a bathroom. Your vision - well, we won't go there as I am terminally depressed about mine.

I used to joke about my fatigue and dating - that I'd go out on a date and be overwhelmed with making conversation, so I'd bring the fellow home, and then I'd be so tired I had to lie down. Somehow the guys ALWAYS got the wrong impression...

But now even that sinful pleasure has left the building. Sex can be exhausting, and overwhelming to sensations. One of my more perceptive dates (god love his furry little hide) noticed that I was in pain after sex if I didn't orgasm. (Note: no one else has ever seemed to notice or care - and of course I am battling exhaustion so don't demand as I should)

But that isn't often easy for we MSers, either. Not only are our sensations all over the place, missing, or twisted, but we don't get to the end point as often as we'd like. I liken it to lighting a firecracker and then having it just burn down, with no explosion. The firecracker is burned out, but still full of unexpended gunpowder, and sparks that fire in places they shouldn't.

Tuppy Owens, founder of the Outsiders Club in the UK, is a proponent of sexual workers being able to help those of us with handicaps in this area. These sex workers are not prostitutes but essentially perform a similar service, spending time in a sexual way with disabled people. Unfortunately, this service is not available in Canada - it's still illegal to purchase these kinds of services, no matter the medical need. I suspect this is because we are still under the conservative thinking that sex is not necessary for survival or health. And/or that disabled people wanting sex is just creepy. I think that is wrong-headed, discriminatory, and hurtful.

I know people who have lost "normal" sensations for whom touching an ear can be thrilling. Other more intimate touches may 'work' after the body is turned on with focus elsewhere.

But what about those who are immobilized, who can't share physical sensations with their partners, who don't know how to please each other in a changed situation?

So that's why I'm working on my book. It's not that I live for sex or are terribly focused on it - it's that I know what it's like to lose a bit of it, and I know how it affects me. So few people with disabilities get touched in any other than a helper way. It's wrong. Touch is important to everyone, disabled or not...and sexual or not.

So I toil away, with my  unhelpful MS brain dragging behind my wishes to get it complete.

In the meantime, I've found a site for people with spinal cord injuries (which we often are - I find it helpful to think of MS as acquired brain damage and spinal cord injury) that provides information about many aspects of intimacy with this condition. Please visit and tell me what you think. Is it enough to be told these things, or do you wish for access to sexual surrogates (not me, I hasten to add) here in Canada? And why is it that all of these sites focus almost exclusively on male erection and ejaculation and so little on women, other than mentioning lubrication? Sheesh. Apparently we are again simple receptacles.

Here it is, from Vancouver, of course, from their spinal cord program: http://scisexualhealth.ca/sexuality-201-sci/

They also have a lovely booklet that talks about devices that can be used for different abilities. Once again, there is a greater focus on aids to men, but the information is adaptable:
Pleasurable: Sexual Device Manual for People with Disabilities
What I like about this one is that it breaks down toys by where you need help (hand strength, positioning, etc) and includes a section on devices that can be applied by caregivers and left in place while you have some privacy...

 'There's nothing you can't do if you set your mind to it. Nothing is impossible." Rick Hansen

Have a look, have fun, and let me know what you think!

April 19, 2017

Wheelchair Kamikaze: Ocrevus: Prominent MS Clinic Issues Cautionary Sta...

Those of you contemplating Ocrevus, please read Marc's excellent discussion...

Wheelchair Kamikaze: Ocrevus: Prominent MS Clinic Issues Cautionary Sta...:   On March 28, 2017, the new MS drug Ocrevus was approved for both relapsing MS and progressive MS, becoming the first drug to achieve FDA a...

Being bipolar with MS

I'm not really bipolar, at least I don't think so, but there's this thing that happens to me sometimes, where I am busy and suddenly my fingers type very fast and I kind of go into a fugue state where I flow through my day without actually being part of it. 

The next day, I am overwhelmed with the blues and a feeling of insignificance and the urge to abandon hope and flee to somewhere, anywhere, where I can be alone with my thoughts.

It's not a good time to read books talking about suicide at those times.

Now that I know that this happens, fairly regularly, I try to ignore it and carry on, knowing that I will be better soon, after a bit of rest and accomplishing some things and yadda yadda.

Yesterday was one of my spin days. I wrote in the morning, volunteered in the afternoon, went to a talk in the evening. I don't believe I was truly present for much of the day, covered over with wax paper mentally, feeling separate from my environment. And then the evening session I went to I couldn't shut up at, despite my telling myself to.

Sounds pretty manic to me. Home and tossing and turning all night (to be fair, my sick cat was to blame for much of that), and now today I am on the edge of tears and just wah wahing to myself.

It happens fairly often, this rapid change. When you feel physically good with MS, you feel as if you are on speed. You can DO things, the fatigue is eased for a moment, you don't feel as if you are going to collapse into a narcoleptic pile at any moment. You can physically sit for a bit and NOT fall asleep. It's a rush.

So off you spring like a bunny rabbit and you do many more things than you are used to in a day and then huzzah, you pay for it with tired neurons and a post accomplishment hangover.
People tell me to pace myself, etc etc, but if I lived my whole life according to my bad days I truly would give up. I have to have hope that something will turn out right, sometime, that the me that is inside can still struggle through the wax paper and interact.

The more I find myself being inappropriate during my up days, though, the more I think I should stay away from people. Which isn't a good thing.

Time, I foresee, to get some help...again...or maybe I am overmedicated....

April 16, 2017

An excellent blog to follow and read

From Bart's Hospital, UK - lots of short posts, all very interesting!

Multiple Sclerosis Research

And who the heck are you? Or frontal lobe dementia and MS

Image result for cortical MS 

I just read an article about the inimitable Terry Jones of Monty Python fame and how he has developed frontal lobe dementia. The symptoms sounded familiar - loss of impulse control, depression, aphasia or dislike of talking, 

"Unlike Alzheimer’s, there is no loss of reasoning or orientation. However, planning, decision making and speech are affected, and patients often seem less caring or concerned about their family and friends." https://www.theguardian.com/society/2017/apr/16/monty-python-terry-jones-learning-to-live-with-dementia

Hmm. I thought. I know I have some frontal lobe lesions. I wonder if there's a link between MS and frontal lobe dementia?

Turns out there is, and not only that but they are suggesting some of the people who appear with just depression or dementia may in fact also have MS. Often there's a long course of depression before the diagnosis of MS is made, but then we all know about how long it takes to be diagnosed unless you become paralyzed or blind suddenly...In any case, it's important to know about this as these people's dementia may be slowed with MS treatments.Here's one of the articles I found: 

Cognitive presentation of Multiple Sclerosis: Evidence for a Cortical Variant

In this study, an argument is made for the cortical variant of MS, one that wouldn't be detected by the old EDSS score, one that shows up purely cognitively until quite a ways down the MS trail and sometimes doesn't show physical effects even then. Cortical MS is difficult to find on MRI as the cortex isn't as springy in the MRI and lesions are harder to spot. Hmm. Mine showed up. How big are they anyway? Eeks.

"Although once considered uncommon or late features, cognitive and neuropsychiatric symptoms are now well recognised as early manifestations of multiple sclerosis.1–5 Estimates vary but Lyon-Caen and colleagues reported that 85% of patients with clinically definite multiple sclerosis of less than two years' duration, and 66% of those with only optic neuritis, showed some form of cognitive impairment.6 Similarly, Swingler and Compston7 reported a prevalence of 40% for neuropsychiatric symptoms and signs in 301 patients with established multiple sclerosis during routine clinical interview. Others have since confirmed this observation and reported that the prevalence of symptoms such as memory deficit or depression and focal cortical syndromes was as high as 60%.3–5 "

So, ho ho, I think. Perhaps it's a good thing I keep saving for that home. I may not need it for motoring around, but I may need it for dementia.

My friend and I were joking about how we can't remember things from one computer screen to another - we see something on one window we want to bring to another and then we forget entirely what it was in the millisecond it takes to change pages. 

I started this blog entry from wanting to work on my book; opened my email, saw the entry about Terry Jones, went hunting through research, wrote this and here it is some hours later and no work done on my book.

It is most frustrating. And most annoying, I opened my computer first of all for something that I still can't remember!

At a recent writer's retreat, one of the faculty told us she keeps a blank pad of paper beside her computer and jots down everything she wants to remember. I've gotta start doing that.

Meanwhile, I simply tell people an adaptation of Spike Milligan's poem, There are Holes in the Sky:

There are holes in my brain 
Where the thoughts flow out
If I seem confused
It's cos they're all about...

Image result for holes in brain

April 15, 2017

Whatever do you mean?


Ah yes. MS and relationships. I'm working on a book about how to liven up your intimate relationships even with MS and the research is mind-blowing. Well, it can be fun, too, but I digress...

Like, for example - did you know that one of the cognitive changes that comes with MS is the gradually increasing social disorder of not being able to read other's emotions/faces, and not being able to express our own?

What may be overlooked in relating to and caring for patients with multiple sclerosis is the fact that the neurodegenerative disease sometimes affects a person’s ability to properly convey and perceive emotion. According to the National Multiple Sclerosis Society (NMSS), while there is not enough conclusive evidence to suggest the disease directly affects emotion, it is important to consider that MS patients may either be struggling to cope with the disease, or are physiologically affected by it, making perception and expression beyond their control.
Aside from the loss of the ability to recognize the appropriate emotion behind certain expressions, a new study from the International School of Advanced Studies (Scuola Internazionale Superiore di Studi Avanzati or SISSA) in Italy now suggests MS patients have an increased difficulty interpreting emotions expressed through one’s posture, countenance, and comportment. Additionally, the study suggests these issues are caused by the patient’s inability to identify his or her own emotions, which is a phenomenon termed as alexithymia, and is observed in some MS patients.”⁠1 (Emphasis mine)

1 http://multiplesclerosisnewstoday.com/2014/11/12/inability-to-recognize-and-convey-emotion-an-effect-of-ms/ Accessed Mar 30, 2016

Alexithymia. A new multi-syllabic word to whisper in our partner's ear, late at night.

"I'm so sorry, darling, I didn't realize you were upset. You see, I have alexithymia..."
Related image
I'm so sure that will be the curative word...relationship fixed. "Oh, I see, you can't express or understand expressed emotion. So how SHOULD I reach you? Flash cards?"

Maybe flash cards or one of those "Daily Mood" flipcharts would be a good idea if only to help identify our feelings to ourselves. Because, apparently we can lose that, too.

Definition: Alexithymia

Alexithymia is defined as a personality construct characterized by the sub-clinical inability to identify and describe emotions in the self. The core characteristics of alexithymia are marked dysfunction in emotional awareness, social attachment, and interpersonal relating. Furthermore, individuals suffering from alexithymia also have difficulty in distinguishing and appreciating the emotions of others, which is thought to lead to un-empathic and ineffective emotional responding...
The treatment options for alexithymia are often times very different from typical counseling or talk therapy. For people living with alexithymia, a mental health professional will often concentrate on building a foundation of naming emotions and appreciating a range of feelings. The process will likely include both consideration of the experiences of other people and self-reflection. Even though some people with this emotional comprehension might sound very basic to others, for a person with alexithymia the process of growing their emotional intelligence and capacity may be difficult. Things such as:
  • Group therapy
  • Daily journaling
  • Skill-based therapy
  • Engaging in the creative arts
  • Various relaxation techniques
  • Reading emotional books or stories
  • https://www.disabled-world.com/health/neurology/alexithymia.php, accessed April 2017
Image result for i'm angry with you
Brain injury changes us, no matter how it is caused. The brain injury that comes with MS evolves daily and is still being understood. For the people around us, our emotional winds can blow a bit strongly. And for us, the hurt that we may inadvertently cause adds to our isolation, something all people with chronic disease suffer.

I seriously dislike the word challenge - it seems to mean we can overcome whatever it is. I haven't heard of too many people who overcame brain damage. I think in this case, we could call it a botheration. Annoying, non-fatal, often not big enough to kill us, but certainly big enough to maim some of our closest relationships.

 I suppose it all comes down to communication, understanding, and a fair dose of tolerance. Knowing about it helps. Reading about this was for me a revelation, a light of understanding why I hesitate so much to connect with people, why friendships remain distant, why I can move away from places without a backward glance. My brain doesn't notice the disconnect.

Mind you, I keep hoping I can dig my way out of this particular brain black hole and find a way to care and express my caring. And perhaps, someone like this:

Image result for i'm angry with you

March 28, 2017

Livin' large in a small body

As I near my 60th birthday, I have to admit, I've always been the tiniest bit chicken about things. Travelling, sleeping alone in the dark, being made fun of.

Not that I don't have reasons for all that - I blame the Catholics for my fear of the dark, my small town life for the travelling thing, and being made fun of for being made fun of. At 5' tall on a big hair day, I've been up for my fair amount of abuse. Add smart and nerdy and dressed in what one of my high school friends gently referred to "slightly out of style" clothing, I stood out.

A long haired dark horse standing in snow covered grass with mountains in the backgroundHeck, I've got a scar from playing my clarinet in band. Who gets that?

Anyway, through the mystical bath of being abandoned in my marriage, being moved all over the world, sleeping alone a lot, I've gotten braver. I think. I've lived alone for most of 8 years now, and it's okay. I've moved away from family, and it's okay. I've run for office, and that's okay, too.

In all of these things, I "whistle a happy tune"... and I throw myself in. Pretending not to be afraid does seem to get me past most things.

The MS thing has thrown a bit of a wrench into my plans. See, I can pretend to be brave, only to have my body crap out on me at the moment when I most need it. It is frustrating. I am still at the point of refusing to allow it to be in charge, but I am finding it makes sense to take it into consideration.

So living large is developing smaller parameters. I fall asleep easily, so long solo drives (which I loved) are out. Long solo walks likewise. Legs simply aren't reliable, though I push them as hard as I can. Hanging out late at night in noisy places knocks me out for days. Noise itself is enough to overwhelm my senses. I can't have massages because it overwhelms my body. Too much sensation at once.

But no, I protest! I can't be done yet!!

Image result for iceland

So next week I'm off to ICELAND for the Iceland Writers Retreat that sounds like a pile of two transatlantic flights wrapped around a filling of all sorts of activities, cerebral and physical. I'll even have to be social, attempt to be witty, intelligent, knowledgeable and yet receptive to learning. The whole thing seems like a huge challenge for cognitively-impaired old me. What if I get lost? It's not a completely inappropriate fear - I get lost all the time.

Last week I had a huge anxiety attack about doing this all on my own, but I've met online a bunch of fellow Canadians going to the same event on the same plane so I feel supported a bit. I'm just hoping against hope that my body works with me. I'm telling it, "one more time into the breach, my friend..."

My son says I keep using my MS as an excuse for taking exotic trips. It's true. MS makes me feel like I'm on a merry-go-round, not knowing where I will end up. I may have a long ride, or I may stop on the next round. No one can tell me.

Despite my fear and pending bankruptcy (kidding), I'm off for this trip, hoping I can grab a few of the golden rings as I do. Northern Lights? Icelandic horses? Volcanoes? The most literate society in Europe? Icelanders, such interesting people, living in the middle of the harsh northern ocean. To say nothing of all of the authors I'll meet. Wow.

Meanwhile, my body mutters. It mumbles. It takes a moment now and again to remind me that all is not as it should be.

Ah well, whistle a happy tune, and off I go!