Showing posts with label multiplesclerosis. Show all posts
Showing posts with label multiplesclerosis. Show all posts

Tuesday, October 1, 2024

Newly diagnosed "can truly be optimistic about their prospects for a life free from disability"

Years ago I was skeptical of all articles like the one I'm highlighting below. I'd see them regularly -- 'The New Drug on the Way Could Be a Game-Changer' or 'A Cure May Be In Sight,' stuff like that -- I mean, how many times can you hear them cry wolf? Particularly when you have primary progressive and there were no treatments at all. But now there is so much going on, and the post-pandemic science has moved the sticks so much. … The landscape feels much different to me now. It doesn't smell like BS anymore. (How's that for unscientific?) Even if there still isn't a treatment for me. Here's to someday. --


Dr. Stephen Hauser, who has been working on MS for decades, is hopeful that the world is on the cusp of a new era in MS. “The battle is not yet won, but all of the pieces are in place to soon reach the finish line — a cure for MS. … I think we can, in the next few years, completely suppress the disease in most people, if the proverbial tea leaves continue to point in the direction that they do today,” he said. And a cure for MS could be close behind.

And in the last decade, UCSF researchers have made incredible advances that could, one day, reverse MS symptoms or even treat the disease before it begins.

Today, clinical studies like those being conducted by the UCSF Weill Institute for Neurosciences, which Hauser directs, are investigating new ways to aggressively treat MS sooner with existing medications and new, more powerful versions. They are also concentrating on myelin repair. The Institute is applying lessons learned from MS to develop treatments for degenerative brain disorders like Alzheimer’s and Parkinson’s, as well as ALS (amyotrophic lateral sclerosis).

Excerpts from full article: "A Cure for Multiple Sclerosis? Scientists Say Within Our Lifetime."

Sunday, September 18, 2022

Your place of power: How online MS support groups can enrich your life

        Support groups are powerful places. They can be safe harbors, where we find friends, shoulders to lean on, or someone who will actually listen. How rare is that when we need those things the most?


        I’m no expert, but after 30 years with MS, I’ve seen my share of support groups. As many as I’ve seen, I still wish I’d joined even more and met even more people who shared my situation – because a good support group is such a lifeline. It’s a fire in the hearth on the longest night of the year, and in good times, is a wind in your sail because you know that somewhere is a group of people who know you’re not lazy, not “crazy,” and are fully deserving of dignity and respect.

        One of the most insidious enemies for me and others with MS is isolation. While we’re battling the five-alarm fires of MS (you know what they are) with everything we’ve got, isolation is doing its quiet work in the background, building up brick by brick. When mobility impairments, fatigue, depression and a host of other symptoms arise, so do barriers and isolation from the rest of the world. The terrible irony is that right when we need support the most, the barriers creating isolation in the first place are also turning the effort of going to group meetings into more a stressor than a safe harbor. That’s where online support groups become such a blessing.

        Continue at the "Momentum Magazine" blog: https://momentummagazineonline.com/blog/find-your-place-of-power-how-online-ms-support-groups-can-enrich-your-life/

Wednesday, February 9, 2022

Frida Kahlo, Disability Artist

        Here's one from my queue that somehow never got posted. It's always a good day for an art post, and color during the endless sludge of winter, and Frida Kahlo...

        "I paint self-portraits because I am alone so often... I am the person I know the best."

At the Frida Kahlo: Timeless exhibit that closed last week at College of DuPage's McAninch Arts Center in Glen Ellyn, Illinois, what gripped me as much as her artwork, 26 paintings, was how profoundly her life and art were shaped by disability. I knew from the biopic with Selma Hayek that she led a life of physical pain, but had l no idea she was bedbound so often and so long that she created a lot of her great art there. The exhibit even placed a replica of her bed right in the exhibit!


At age 6, Kahlo contracted polio that left one leg shorter than the other. At 18 she survived the crash of a bus with a streetcar that killed several passengers. Kahlo was pierced by a metal handrail that fractured her pelvis and punctured her abdomen and uterus. Her spine was broken in three places, her right leg in 11, her collarbone was broken and her shoulder dislocated. That fateful moment dealt her a lifetime of agony, isolation and miscarriages, but also tempered her artistic vision and the resolve to realize it no matter what.

At times she saw herself and others in an almost disembodied way. She created surrealist paintings that looked like medical charts of her miscarriages, vehicular accidents, and the metal rods that propped up her back and caused chronic pain. She turned that same almost clinical eye on her portrait subjects and on the way women are treated. One of the paintings shows the brutality a woman from the headlines had suffered at the hands of a murdering man, and Kahlo pulled no punches on the details, making sure viewers got an eyeful of how many women are treated. But on the other hand, her eye could capture the lace as fine as dewdrops on the sleeve of an otherwise poor and plain-looking young girl whom she painted, signaling the beauty she saw inside of her young friend.


The exhibit highlighted the disability theme throughout the exhibit, and amplified the message by mounting a side gallery of works by Tres Fridas, a collective of artists Reveca Torres, Mariam Paré and Tara Ahern. Tres Fridas (the name is a nod to Kahlo's painting, Dos Fridas) stage disability-related recreations of famous paintings. The nameplates of their works show the original artworks to compare with, as well as explain issues that people with disabilities are dealing with today. Kudos to the McAninch Center for taking this opportunity to underline important issues that the general public gets little exposure to.

Kahlo embraced her own disability as an intrinsic part of her whole self. She wore support braces around her torso, three of which were re-created for the exhibit. One was of burnished leather that resembled a hunting vest or leather armor. Another was moulded plaster, decorated with exotic painted flowers and designs. Another way that disability was manifest in her art was in her subjects, especially herself. As a young woman (she died at 47), her energies and mind engaged with the wider world, yet for much of life her body would not let her. She and her famous and influential husband, the painter and muralist Diego Rivera, reveled in the company of artists and thinkers in Mexico and worldwide. One item in the exhibit is a short film showing her and Riviera with the historic revolutionary Leon Trotsky after he came to Mexico in exile from Russia. (Soviet Premier Joseph Stalin would send an assassin to kill him shortly afterward.) All this, and still Kahlo led much of her life in her bedroom, alone.


And yet, even forced to lie on her back, she created art. To create requires willpower even for someone able-bodied. That she continued to do so through pain and depression is a testament to her power as a person and artist. As I deal with similar issues, she amazes me.


Of course Frida Kahlo is not only a disability artist. She was also painter, provocateur, fashionista and proud mexicana (in the Mexican Revolution of 1910, Mexico threw off the yoke of dictatorship, and society of Kahlo's day embraced and celebrated its native culture and history): all of these things made up Frida Kahlo as a person and as a life, and she incorporated it all into her art and expression. Even her disability and isolation were not overlooked or kept hidden: they were turned into a source of power that made her work unique, that is, uniquely Frida Kahlo. (Until recently, disability and depression were forbidden subjects. Now think about the taboos back in Kahlo's time!) Things like these seem like common sense, and yet we (me) sometimes have to learn basic truths like this, and it can take a great artist and museum to help us understand.

Viva Frida Kahlo!



Tuesday, May 4, 2021

"Opening the world, one disability story at a time" – KPFT FM Houston Peoples News

This year's Oscars showed that disability stories and issues are strongly in the public eye. And that's the mission of a group that's moving the needle of awareness, one story at a time. I talked to Celia Hughes of Art Spark Texas about Opening Minds Opening Doors, a program helping anyone, anywhere tell their own story and open people's minds. 



#ArtSparkTx #multiplesclerosis #advocacy #disability #omod #storytelling

Wednesday, January 6, 2021

Something Fishy: Here's to beautiful, boring Routine

On this hellday, hypnotized by horrible images, I'm sooo looking forward to a chunk of sanity to grab onto. Something nice and predictable and boring. I'm going to play Mr. Fish again.


During the lockdown my wife @char2go and I started drifting. It was a weird, anxious time for all. So what we tried was to exercise to a YouTube video together. It could be short, it could be easy, but we tried it. Then we tried it a second day, and then a third, and eventually it became our habit that we laughed about and looked forward to every day.

I'm a quadriplegic, she is not. She does all the movements, I do few if any. But I flop all over the place. I flop around like a fish out of water. It ain't pretty. But every day I do so, and I laugh and by the end I'm out of breath just like she is. It became our routine, boring and beautiful.

Today that routine sounds mighty good. I'm zipping into my Fish suit.

Who dat, bottom right of Skype screen

BTW congrats to my lovely @char2go for helping ring the closing bell yesterday with @PlanetFitness on the New York Stock Exchange! The sky's the limit, Coach.



#disability #multiplesclerosis #PTSD #BipolarDisorder #Anxiety #Depression #PanicDisorder #Agoraphobia #ObsessiveCompulsiveDisorder #MentalHealth  #MightyTogether #ADA #planetfitness #move #exercise