View allAll Photos Tagged multiplesclerosis
One of the things I took to heart was to do small things to advance myself while healing. What I didn’t know was that too manny small things have the opiate effect.
Now I’m paying for that.
With interest.
© Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Paralyzed Veterans of America hosts its third annual Summit + EXPO, bringing together top researchers and health professionals to share best practices and learn about the latest research, treatments and therapies in spinal cord injury/disease and multiple sclerosis (MS) health care. To learn more about Summit 2013, please visit www.pva.org/summit2013.
One of Janice's favorite tee shirts. For her, it refers to the slowness that comes from multiple sclerosis. I'm glad she has a sense of humor!
Below the graphic, the shirt says, "We'll get there when we get there!"
Baking with MS .... One minute your holding the muffin try and then your dropping the muffin tray #multiplesclerosis #fuckyoumultiplesclerosis #multiplesclerosisfighter #baking #foodporn #messykitchen #selfcleaningoven
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Having #multiplesclerosis the energy I spend needs to be focused on me and what I'm doing. . Spending my time watching the "Winners" within my area doesn't help me, it wastes my time and energy. . Granted, yes, I do learn from the A-Listers with how they do certain things so I can emulate it and make it better. I try not to compare or compete because my energy is better spent focusing on me and my efforts. . Watching winners enables negative thinking in my life. So I chose to focus on my personal progression! . #lifechoice #focusonyourself #michaelphelps #winnersclub #olympicgold #successtips #lifetip #bethebestyou #focusingonme
When I was a kid I found this book in my dad’s shelf. It was very intimidating being over 1000 pages. I’d read this instead of doing my homework (ah well) because it was so riveting and fed my imagination. I have trouble reading books, now, due to my MS (can’t concentrate and retain what I read and I tear the pages because of my tremors). So I was able to download the unabridged audio book from the library (53 hrs long). I just finished listening to it and still love the story.
© 2023 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Prime Minister Theresa May held a reception at Downing Street for the MS Society and to recognise the hard work happening within the multiple sclerosis community.
Paralyzed Veterans of America hosts its third annual Summit + EXPO, bringing together top researchers and health professionals to share best practices and learn about the latest research, treatments and therapies in spinal cord injury/disease and multiple sclerosis (MS) health care. To learn more about Summit 2013, please visit www.pva.org/summit2013.
Janice cools off in a sprayer set up for that purpose. People with multiple sclerosis are especially susceptible to hot weather.
Friday is usually my "day off," but this week I'm working seven days. So, I have to scoot. Here's a quick post from the M.S. Walk. Happy Fence Friday! If you're in the area where I live, stay dry!
Prime Minister Theresa May held a reception at Downing Street for the MS Society and to recognise the hard work happening within the multiple sclerosis community.
Onyx with her MS Flappy and MS Loofa toys that came from Care-a-Lot Pet Supply. The profits from these toys and other MS items sold by Care-A-Lot are donated to the National Multiple Sclerosis Society to go toward research for finding a cure.
Seventeen years ago this week I awoke one morning with symptoms that would later be diagnosed as Multiple Sclerosis. The onset of my symptoms were sudden and the progression quick and quite unusual. Within a year of my first symptoms I was using a cane and six months after that I walked into the hospital and came home five weeks later in a power wheelchair, unable to use my legs and with limited use of my right arm. Two years later the MS affected my respiratory system and two years after that I was trached and put on a vent. I have been in the power wheelchair for 15 1/2 years and on the ventilator 24/7 for 11 1/2years. Despite the limitations imposed on me by the MS not much slows me down! I am grateful and very fortunate to have a wonderful family, great friends, and an exceptional team of medical professionals - all of who are very supportive and help to enrich my quality of life. I also have Onyx who enriches my life, makes me smile every day, is a great helper, and my very best friend.
Life is a funny thing. Sometime we do not think how much we were given.
Imagine yourself at age of 26, making meal for friends, when suddenly your vision goes away in one of eyes. Imagine panic and confusion you would have when it doesnt come back. And then doctors would toss you around, and ... then they will tell you you got Multiple Sclerosis (MS). And you are ONLY 26 years old!
MS is a disease that makes you suffer in silence. It’s a slow progression, one day you can practice yoga, the next morning you can’t even get out of bed. Sometime pain is only thing around you, blinding, crippling, pushing you down. There are few forms of this disease, but they all have same end result.
Terminal.
And younger you are, faster it progresses. Some older folks getting diagnosed around 60-70 and pushing 90s now. People who diagnosed around 20s - rarely live past 30.
But Svetlana didnt give up. She is a born fighter, she threw herself at the researching about MS, created one of the most popular MS support sites and helped others.
9 long years battle continues. 9 long years, sometime going to wheel chair, sometime going with cane, sometime just walking slowly - she lives, she fights. Every step. Every day. We, her family, helping her as much we could, but most importantly she has amazing inner strength that keeps her moving, working and not complaining how hard it is for her, how horrible her days are.
Her life became series of visits to doctors, MRI scans, trials with various medical solutions that should help stabilize MS patient.
Alas, 9 years in, every single existing medical solution is exhausted and nothing helped. She starting to detiorate more rapidly than ever before and 10 more active lesions now show up on latest MRI. She shouldnt even be able to move. Yet - she does fight on. But ghost of wheelchair is more and more materializing in front of us through past two years.
Our youngest is 7 years old now, and , bearing with typical MS lifespan prediction she wont see him graduate.
Hematopoietic stem cell transplantation (HSCT) is a
relatively new procedure for MS patients. We started doing research, asking ,applying everywhere. Two places accepted her application - facility in Russia and facility in Chicaco. Both are not free, one is 45K USD and travelling overseas, another is 125K USD (and place where her family can come and visit her). Given recent progression of the disease doctors recommend to do HSCT as soon as possible, but money is where it all stops, as such amount is beyound our pockets for now .
www.gofundme.com/lanamsfighter
If you got something to spare to help Lana to get procedure done so she can see her grandkids , please donate to this cause. If you stranded - just send Lana smile and a good thought. She can use them too.
Thank you.
I got this tattoo on 4/11/2012 It reads m.s. warrior. Living with multiple sclerosis is a daily fight, there is no cure, no ribbon for" I beat ms" or "ms survivor" so.. I came up with this... it is my own lousy handwriting :)
Norah O'Donnell, Ann Romney. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
There is what is called the EDSS Score. It is used to measure your disability. 0 is none, 10 is death. I went from about a 2 to 6 in a little less than a year.
My MS was VERY aggressive.
I’m very loath to think of how I would have been next summer.
Remember that I felt I was being dragged down? I had no idea that the bottom was worse than I imagined.
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Bob Diamant, Shaolin Kempo instructor with United Studios of Self Defense and guest presenter, right, demonstrated self defense techniques against Gabby Acton, group leader for the monthly multiple sclerosis support group at HealthSouth Rehabilitation Hospital in Las Vegas, Wednesday, June 17, 2015.(Jason Ogulnik/Las Vegas Review-Journal)
Not only is Janice happy about the new cowl she's just crocheted, but the project itself has personal significance. This is the first garment she's crocheted since she broke her left elbow, in 2008.
A measure of wellness!
The tattoo at the nape of Lara Ewen's neck, dedicated to the weekly interferon injections she endured for years, references a proverb: "It's a fool who dances and a fool who watches; if both are fools, you might as well dance."
this was a very sweet moment, and I just happened to capture it.
As I was walking up behind this couple I was thinking "Oh, that would be sweet, if I could get a shot of them in the "light path" of the sunset"
Just as I got the shot set up and focused, he leaned in for a kiss. Perfect!
After I passed by and was starting to look for my next shot, they got up and came up the hill, and asked Larry if he would take a picture of them with their little cheap-y camera They told him they had just gotten engaged, and wanted to have a memento of the moment.
. After they got a few shot on their camera, I offered to take a few more on my camera and then I emailed them the results. I also put this photo in, as I realize afterward that I had captured the moment after she said "Yes!" 8-)
Congratulations to Chris & Lauren.
This post is for a new group called
"Pledge to Kiss Goodbye to MS", started by my dear contact Paloetic, to raise awareness and funds for research for Multiple Sclerosis
THEME #1: Kiss
Today is National MS Awareness Day. I took several photos for the occasion, then decided on this one, as it represents a milestone for Janice, who has dealt with symptoms of multiple sclerosis since 1985. This oral treatment, called Tecfidera, replaces the injections she has taken for years, either on a weekly basis or daily. What a welcome change!
Multiple Sklerose unterbricht die Nervenbahne. Zu den Folgen gehören Kontrollverlust und Schmerz.
“Multiple sclerosis interrupts the nerve racts. Multiple Sklerose Gesellschaft Schweiz”
Read more:
osocio.org/message/multiple_sclerosis_interrupts_the_nerv...
Yesterday marked the 5th year of my washout of all MS drugs . Had I stayed on the drug it’d be $540k by now
© Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Prime Minister Theresa May held a reception at Downing Street for the MS Society and to recognise the hard work happening within the multiple sclerosis community.
I love this shot I took of George with his nephew Bobby riding shotgun on the back of his wheelchair.
People who have multiple sclerosis vary in how many medications they take. Some people don't take any. Many give themselves an injection each day or each week, because the best meds to ward off exacerbations are injectables. MS is often a hidden disease because the symptoms are not evident in casual social situations. The same applies to what an MS person does routinely at home.
Andrea and Michael Steele, Monica Turner. Photo by Tony Powell. 2014 Women on the Move Luncheon. Marriott Wardman Park. April 30, 2014
It’s been 2+ years since I had my stem cell transplant to halt my MS. It not that it’s better for me nor that it’s easier to accept. It’s that I’m understanding more that I’m a different person now.
The old me is dead. Rebirth is not an overstatement. I still struggle. Especially understanding my limits and adhering to them. My world is very different. Everything is in a very different light. I think I’m on the other side of my mourning. I recently had a dream that I was on a space station over the Earth. The whole station was on fire. Yet I was totally not scared. I saw a yellow stick note and I was able to read the words clearly:
“You can still fly”
© 2022 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
An upload and run shot due to the busy-ness of today. These are bubbles coming from a bubble machine a the O2 Shop, Parc Trostre, Llanelli today. Today was the day I was photo-ing a Family Fun day with proceeds going to the MS Society UK. At the same time, not only was I doing a bucket collection but was interviewed by The Wave local radio who were broadcasting from there, and also doing my 'Wear your Wig to work' personal fundraiser. I was also busy Tweeting updates and pics from there. The day went exceptionally well on many levels - and my thanks go to all who donated to my personal justgiving page for that bit of fundraising. Below is a phone pic of me in my wig before the event started *cringe :)
I brought the bins in from the street… for the first time in years. Better yet… I did it WITHOUT my cane!!
It really is the small things :-D
On April 18, 2010, it really happened. I walked the entire 3.2-mile WalkMS in a dress and high heels. To be honest, I wasn’t sure I could walk the whole way with the shoes, and seriously considered taking them off a couple of times. But I knew that at the end of the Walk, I can take the shoes off and the discomfort would eventually go away. My wife, and everyone else with multiple sclerosis, doesn’t have that luxury. So I just kept walking. One step at a time.
Thank you so much for everyone who sponsored me – your donation is helping to make the National MS Society an even better resource for people with multiple sclerosis. Thank you very much for everyone who walked with me on our team – I’m glad you didn’t mind going so slow. Thank you to everyone who has enthusiastically responded to this whole thing – every message I received really inspired and touched me. Thank you to Lan Yin “Eiko” Tsai for inspiring the look of my ensemble. And most of all, thank you to my wife for encouraging me and understanding the very serious ‘why’ behind this silliness.
Photo by Rose Kwasnicki
5 years ago, at 12:09 PM, I received my stem cells. I still struggle every day. Am WAY better though. The alternative would’ve been… dire.
I’ll never have to ask:
“What if…”
© Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Subtitled: a funny old life with MS.
In May 2013 I was asked to go to Cardiff to photograph the author for a feature written about her in the MS Society UKs 'MS Matters' magazine. The feature however was nothing to do with her writing because at the time the author merely blogged about her life. Pointless me typing a load of bumph when you can read about Barbara here on Amazon, and from where I ordered this two days ago
www.amazon.co.uk/Barbara-Stensland/e/B00SYC9L9C/ref=ntt_d...
It really is a strange old life with MS because it has the potential to devastate lives of those living with it and those with whom they come into contact.
In my case however having lived a lifetime with the condition I'd say it's taken me places I'd never have dreamed of. I published my own book in 2006 and have been subsequently published by others, yet the greatest joy of all is still being able to take photos.
For the folks who know me this will be more dramatic. Before HSCT I lost 30 lbs in one year. Most, was muscle mass. I’ve done the P90X 7 times and enjoyed 20 mile bike rides. I was not slim, a big guy actually. I saw a picture of myself just before I left for Puebla. And I was saddened by it. I’m only recently starting to gain some weight back.
Copyright © 2021 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
MRI CERVICAL SPINE
---
PROCEDURE: Multiplanar MR imaging of cervical spine without
contrast.
COMPARISON: None.
FINDINGS: There is patchy signal abnormality in cord, with more
focal lesions seen at C2 in dorsal cord, C3-C4 on right, C4-C5 on
right, C5-C6 in mid dorsal aspect of cord as well as a lesion at
C6-C7 on right. There is minimal associated expansion to the
cord opposite C3. Visualized posterior fossa is unremarkable.
Alignment appears normal. Vertebral body heights are maintained.
Disc space heights are preserved.
There are very mild degenerative changes, including minimal bulges
at C4-C5 and C5-C6 and minimal hypertrophic changes to the
posterior elements at C5-C6. Mild uncovertebral hypertrophy is
present at C6-C7 on left.
There is no evidence of focal disc herniation, central canal
stenosis or neuroforaminal narrowing.
Impression:
Multifocal intrinsic cord signal alteration with mild expansion at
C3 level. The findings are non specific but compatible with
demyelination.
It took 10 years to be diagnosed and during that time I had countless weakness episodes. Because I have the Relapse Remitting type of MS it would come and go all the time. My right leg was the most affected one and it still is. If I force it too much with walks, standing for too long or exercising too much I feel It hitting me again. I can't run. I can't jump. But I can walk and that's what matters.
Along those years before the diagnosis I remember dragging myself to go to places. One day, struggling to climb the stairs at work, I noticed some people looking at me as if somehow I was making all that up. Many people thought I was creating that or that there was some psychological problem. Many of my family members thought this.
This picture expresses exactly how I was feeling during the strongest relapse of all. The one that led me to the doctor who diagnosed and treated me for years until I moved to the US. My whole body was losing the strength. Every step was an unimaginable struggle. It was like I was wrapped in some kind of power that weakened my strength everyday a little bit more. By that time my mother took me everywhere looking for answers. I couldn't walk by myself. I was at my worst. I was at the limit by then, but a thought always crossed my mind—nothing lasts forever. This too shall pass. I felt the truth was close to me. It felt frightening and liberating at the same time.