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A few more shots from the walk to raise funds to fight Multiple Sclerosis. The M. S. Walk took place in multiple locations, yesterday. I attended the one in Hershey, PA.
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.
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!"
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.
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.
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.
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.
The theme for the Kiss Goodbye to MS photo challenge is "today" .. and it has been a glorious autumn day in Sydney. Blue skies, a few fluffy clouds, and even some flowers still out praising the sun.
Remember every view, fave and comment adds to my pledge to the KGTOMS campaign. The current tally is $597.15
Only 6 days left to share an image with the pledge to kiss goodbye group to help raise awareness about MS. Thank you to everyone that has contributed so far.
I also have a fund raising page, Palo's Pledge, that accepts donations on behalf of MS Australia to further research into this disease.
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
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!
I had been standing here waiting for a people-free shot of Fort Point when I realized it was not going to happen. Just as I was putting my camera down I noticed the red wristband this guy was wearing. For ten years I've worn the MS Society's red "HOPE" wristband and I wondered if he was a 'kindred spirit' even if not a Walk participant...
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.
It really is the small things. In another “F**K YOU” to MS, yesterday I wanted some chips that were in a high shelf. I had to get on my toes to reach the bag… only then did I realize what had happened.
Consciously, while holding on to the counter for support, I stood on my tiptoes and looked up. I had not been able to do that for years! I began to cry/laugh like a lunatic!
I was told that my recovery from HSCT would be slow and surprising.
I guess so :-D
© 2023 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
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.
Next Saturday is the local MS Walk, the major annual fundraiser for the National Multiple Sclerosis Society. I lived in San Francisco when my son was diagnosed, and started doing this fundraiser walk there, where they provided bibs. Each year I added my new bib to this train. When I asked the New Orleans chapter why they didn't provide race bibs, the rep said "Well, the MS Walk isn't actually a race..." (A significant number of participants complete the walk in wheelchairs or walkers...)
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
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.
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)
Everything ready today for our Cake Break Event later.... bunting, raffle prizes and electric ballooon pump on standby for these...
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...
I got 4 rounds of chemo. 2 at the start to stimulate the stem cell production from my bone marrow and 2 after the PICC line was installed to ablate my old immune system. The first round was the toughest because chemo is so foreign to the body. It was very important to drink tons of water in order to flush your system of the chemo.
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
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
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 :)
The day before I left for home, after the neutropenic stage, I went to the roof garden, while my apartment was being cleaned, and got some quiet reflection time.
It was a sunny day and “Popo” (short for Popocatépetl, the volcano) was active.
I’ll never regret taking this journey. Ever. Not even after 4 of my flights were cancelled or even contracting COVID. All is complete now and I’ll fly home tomorrow.
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
So, a bit of prep was needed before my HSCT. I need a washout of my system of all DMDs (disease modifying drugs) 3 months prior.
I did a bit of more research.
The DMD I was taking, Gilenya by Novartis, came out in 2010 at $4000/month. It’s now $9000/month. You might qualify for a discount because having a debilitating, life long disease that has no cure is not enough. Price setting for drugs is a black hole. The biomedical engineer I spoke to said it takes about $.05 - $1 per pill to make Gilenya.
The average worker at Novartis makes $50k/yr.
Doctors there make about $250/yr.
The CEO, last year, made $11,437,500. That’s before perks.
And I was expected to make a decision on what drug to take within a couple of days based on the pamphlets I was given. Yet, my 8 months of research into HSCT was scoffed at.
What pissed me off the most was that I was not given a choice of this treatment. Even though it’s been around for 50 years and everything that was given to me was FDA approved. I suspect that since HSCT can’t be owned by a single big pharma company it was not FDA approved. Aka: no single owner to make $ off of it.
Copyright © 2020 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.
As a volunteer photographer, I have had the privilege of being an official photographer for the MS Society for the past four years. It never ceases to amaze me the grit, determination and passion of these riders who not only raise funds for the event but also pay to be a rider and put themselves through months of training to have... THE RIDE OF OTHERS' LIVES!