Friday, January 22, 2010

Ampyra Approved!

Today Ampyra received FDA approval.

This therapy by Acorda Therapeutics increases walking speed in the four major MS types - RRMS, SPMS, PPMS, and PRMS.

Ampyra is in tablet form, previously known as fampridine. It is being developed in the US by Acorda Therapeutics, the company that works with zanaflex, and outside the US by Biogen Idec.

Ampyra is expected to be commercially available by March of this year. Read the press release.

Tuesday, January 19, 2010

Privacy Policy

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Tuesday, January 12, 2010

She leaned forward in the leather chair, her preferred seat, facing the man in 3/4ths profile, as if looking in the distance for something, someone, perhaps just escaping his questioning gaze.

“I don’t know why. It’s just every time I close my eyes, no matter how tired I am, I feel his closeness, smothering…like his presence fouls the air.”

The woman turned to face the man directly, wrenching her hands, then dropping them to her lap. They were soft, delicate, a very light tan, fingers pink ended, now grasping at the hem of her skirt, as if to gauge her worth by its warp.

Sitting in the swivel chair, the man uncrossed his legs to lean towards her, a gesture of concern. He didn’t speak but looked intently at the woman, waiting for her to gather her thoughts. Like a priest behind his screen, sitting in the dark, open to all, accepting of pettiness and depravity, the man seemed capable of weathering time.

“I feel his lips at my throat, then a sharp pain, as if I was getting a needle. I fall into a dream where I’ve become a river, rushing downhill, gorged by winter meltoff, widening my banks, opening myself up. A wolf comes to my side where he may drink and stares at himself in my reflection of him. He drinks of me, then howls, turning his muzzle to the rising moon.”

The woman is flushed, lips and hands shaking and quivering, She beseeches a reply from the man, who remains concerned but impassive.
“Is there more?” he asks, never moving.

“Just the ending. The same as all the others. I wake up in my room to see a shadow leaving through the window. I can hear a dog howling and I feel the puncture wounds in my neck. And the blood on the pillow.”

The man leaned back in his chair, as if to relieve the atmosphere of its tension, his hands folded in his lap, willing a deep breath from her. He closed his eyes on the room, breathing rhythmically, waiting patiently as he must always wait, absorbing her nervousness, feeding on it. “When you close your eyes and perceive that scene, what comes to view?” The man knew from many hours spent with her that the woman was a visual person; her thoughts presented themselves almost as videos, as if on a movie screen, the better to negate their emotional charge. “I don’t know…I see a room, this room. A safe place, like a sacristy, back and forth, this room, a church, …a man. That’s all I see, Doctor. Everything fades away….it’s darkness.”

Looking within himself, the man recognized feelings of boredom, could feel himself stealing away, abandoning his charge. He suppressed a smile as he mused on boredom’s importance in his work. It was one of the signposts he depended on, as a migratory bird can sense from his relative position to the celestial constellations that he remains on track. As always, he tried to estimate how much longer it would take for her to recognize the truth within, to allow herself the terrible knowledge that she is human, that her dark hidden secrets are not hers alone, but part of the burden God has placed with us.

“Does that place bring anything to mind?”

The woman’s eyes seemed feral, over alert, as if guarding her children, swiveling to the room’s dark corners, daring her fears to present themselves. “When I was a child, I always felt especially safe in church. I’m still moved by the scent of incense and candles burning, but I no longer feel comfortable especially, I just enjoy the atmosphere, the incense furling around me, the candlelight flickering…..I always felt I looked my best in candlelight…or moonlight.” She leaned forward, uncrossing her legs, presenting herself. “Do you think women are more alluring in candlelight, Doctor?”

“Why is that important to you, Theresa?”

“Doctor, that’s just a simple question. Is it so hard for you to be human, to answer a simple question?” The woman leaned backwards in the chair, her arms folded across her chest. “With all that I’m paying you’d think I could get an opinion from you that any teenage boy could give!”

The man sat quietly, knowing better than respond. They had been through this cycle of behavior many times and he knew that Theresa would recognize the pattern.

“I know, I know.” The woman sighed, shaking her head in dismay.
”Seductive behavior, rejection, anger. My personal triad. Jesus, am I so fragile?” She looked at the box of tissues on the table between them, then glanced at him, as if expecting his comfort, expecting her reward, as a puppy would sit at her master’s feet,

Rather than respond with a tissue, the man spoke. “And its importance to you?”

She spoke slowly, softly, “I know….” Theresa leaned forward, extracted a tissue and daubed at her eyes, which were not tearful. As if redefining her boundary, gaining her substance. She closed her eyes, withdrawing, processing; her breathing grew deep and measured.

Waiting, the Doctor reflected back on earlier times when Theresa first came to him. A year and a half ago. Theresa had been very depressed following the breakup of her long term relationship with Sean and was hoping for relief from the pain of loneliness and despair that the breakup had engendered. As always, the tricky part of psychotherapy was to offer symptomatic relief yet present the possibility of characterological change. To help Theresa be rid of those circular, downward spiraling thoughts that strip her world of color, yet offer to her the possibility of basic change in her relating to the world; that is, to modify the woman’s ingrained defensive posture so that it less severely restricts growth, maturity and meaning in her life. And, if she is able, to face his own personal anxieties once again in helping her see what it is to be human, to acknowledge her finiteness.

The man’s thinking was interrupted by Theresa. Smiling, she looked at him, then posed, “But what do you make of the blood? If it’s all a dream, what of the blood on the pillow? And the puncture marks?” She gently opened the bow that fastened the silk scarf around her neck, baring the puncture marks on the right side of her neck to his view.

Wednesday, January 6, 2010

Two Ideas

Michael B. Gerber has some clever ideas and observations that help us think outside the box. Here are two posts that do just that:

It can be done
Michael tells us a marching band from a blind school reminded him for something to be done, the idea must come to someone who then shares it. He asks us each to ask ourselves "What can I do?" When you have an answer, share it. It may be the beginning of something important.

The Story of an MSer taking a Skydive
I have been thinking about this since I first read it, falling, not soaring. Almost everyone I know really like it whether they can describe it or not. This is not in my bucket, but I am glad he did it and shared the experience with us.

I was struck by the fact that they were not just willing to accommodate him — they were ready and experienced to accommodate people with disabilities! What does this mean? It is not unusual for a person with a disability to take advantage of their service. How great is that!? If it can be done for skydiving, it can be done for many, many other activities.

Thanks for sharing, Michael, and Congratulations on your jump.

In a comment by Andriana she wondered “if our minds disable us from going/doing beyond the norm.” I believe, and I know I am not alone, that the brain IS the biggest personal disabler in people with and without disabilities. Are you feeling your disability excludes you from an exciting activity? Check it out.