Lurching towards Kalamazoo

Ah, the joys of impaired balance. 

Why, I can look drunk in the middle of the day without having tasted a drop.

Tonight, returning from a BBQ at a friend's house, I turned right to head towards my car and almost didn't make the turn. My upper body lurched attractively opposite to my legs and there was some arm spiralling before I rebalanced. Thank heavens there weren't any cops around to make me do the walking the line test. 

Stone cold sober, me. Tacking to the left, I gradually made my way to the car, struggled with the lock on the door, got in and drove home. I think. I mean, I'm here, but the trip home wasn't a fully cognitive one.

It's this sort of thing that keeps me home nights.

Time to get a cat for company.

see what's happening at ECTRIMS

http://drkarenlee.ca

Dr. Karen Lee from the MS Society is blogging from ECTRIMS in Copenhagen.
You can also follow her on Twitter @dr_karenlee
Or researcher Jordan Warford at @jrwarford

Mouse studies reveal promising vitamin D-based treatment for MS

Mouse studies reveal promising vitamin D-based treatment for MS

Fampyra diaries: epilogue

Hey all - 

Well, Fampyra and I have parted company, at least temporarily. I was finding it contributing to my gastric reflux, it was disturbing my sleep to the point where my little FitBit was recording me in bed for 9 hours but asleep for 3. I'd think it was the machine but before I took Fampyra and after I stopped taking it, my sleep hours lengthened to 6 or more. So I must've been doing something when on it.

Tough to guess as I am in bed alone (see previous post) but thats my thought.

Plus I can't really afford the $570 monthly charge - I could, I suppose, if I really felt it was helping that much.

Of course, now that I'm off it, I am having increasing trouble walking but to be fair, I was before I went off it, too - just the progress of the disease, I think.

I have an appointment with my doc in October and will get re-evaluated then. She may think I should try it again. I may differ. 

If any of you have had sleep disturbances when on Fampyra, write it in the comments....would love to know how everyone else's experiences are. I just know I need more than 3 hours of sleep a night...

Arggh and Bloody Hell and sex and MS

Okay. A few months ago I pitched a book about MS and intimacy and there was publishers interest in it - and then my co-author dropped out of the project and I was fed up and decided to not write it, for the moment anyway.

And then I saw this today and I am mad again. Once again, the "recommendations" are merely a list of things that go wrong in MS, and the recommendation to "Talk to your loved one".

OF COURSE it is important to talk to your partner (if you have one, which I don't and let me say that dating with MS is another whole ball of wax), but just talking about it won't help the problem. My experience in talking with neurologists and others about this is that they toss blue pills and stuff at men (lest their threatened penises get all worried) but provide nothing in the way of help for women other than a bottle of lube, which, face it, is more about the man than the woman.

Geez.
It's so frustrating! Lately I've gone all completely numb again and I am cheerfully considering a cat as a life partner cos I have no reason to think about anything else, and yet I know there is no one in my health care circle who can help me.

So I'm off to find another co-author and research this myself and then share what I find out. Cos if you're out there with MS and want a little physical affection, you are alone at the moment.

from the inimitable Despair.com

Here's the OH SO HELPFUL article.

Neurologic Impact of Multiple Sclerosis on Sex

Sexual arousal begins in the central nervous system, as the brain sends messages to the sexual organs along the nerve pathway in the spinal cord. MS-related changes to these nerve pathways can directly or indirectly impair sexual functioning. For example, the following symptoms can occur as a direct result of myelin breakdown in the spinal cord or brain:

• Decreased sex drive
• Altered genital sensations (numbness, pain, increased sensitivity)
• Difficulty or inability to maintain erection
• Decreased vaginal lubrication
• Decreased vaginal muscle tone
• Ejaculation difficulty
• Problems having an orgasm

The following symptoms can arise as a consequence of MS physical changes or treatments:

• Fatigue can suppress sexual desire
• Spasticity can interfere with sexual positioning or cause pain
• Sensory changes can make physical contact uncomfortable.
• Pain

Psychological Impact of Multiple Sclerosis on Sex

A loss of interest in sexual contact or intimacy may arise as a result of psychological or social issues associated with multiple sclerosis, such as:

• Depression
• Performance anxiety
• Changes in self-image or body image as a result of disability

What Can Be Done to Improve Sex With Multiple Sclerosis?

Talk to your partner about your sexual issues and multiple sclerosis. The most important way of dealing with sexual difficulties is to discuss your feelings with your loved one. When MS begins affecting your sexual desire, talk to your partner. Confiding in your partner deepens intimacy and may help resolve concerns relating to sexual intimacy.

Chocolate may help keep brain healthy

Chocolate may help keep brain healthy

Finally, news I can use!

Head and shoulders, knees and toes : Fampyra diaries 3

Well, I'm a shower of sh** today, as my charming ex-father in law would put it.

On Fampyra now for several months, and I am walking better. Is it the Fampyra? Who knows.

I'm also having a lot more spasticity in my muscles. Fampyra? Who knows.

Last several days, my legs and feet and bum have been very unhappy with one thing or another. Twitching, spasming, my toes curling up or just painful and very touchy. Shoulder was damaged in another incident, so I'm hobbling along, a mass of unpleasant sensations with no where to put them.

I've taken to using my rollator if I have any distance to walk. Sigh. Sexiness quotient = 0.
Of course, staggering like a drunk leads to entirely the wrong sort of attention. Tough call...

So, slurping bafclofen and my medMJ and hoping the pain goes away soon.
Frustratingly, sometimes it does, completely, for, like, ten minutes, and I can walk like a normal person and my hips and knees stop complaining. Then the mask drops back down again and I am writhing.

I suspect a new lesion in my spine...maybe some compression there? As we all know, it's foolish to diagnose yourself, but so much of chronic disease management is just that.

Keeping on with Baclofen, Fampyra, and now back on Cymbalta to deal with the depression caused by the holes in my head. Maybe it will help with pain, too - it did before. Polypharmacy, here I come, yet again.

Am paying for my Fampyra now after getting two free sample months. Don't know if the benefit is worth the cost. will have to consider when this batch is done. It DOES seem to be disturbing my sleep pattern.