View allAll Photos Tagged multiplesclerosis!
While I was in quarantine I experienced more ups and down moods in such a sort time than I ever had before.
It was the uncertainty that was awful.
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
My friend Jan who we're staying with coordinates a similar MS Fundraising group to ours in S. Wales with a funkier name than ours , ‘Don't MS with Us' so we popped along to support their Bank Holiday Fundraiser at the annual Stubbington Fayre , where they sold Home Made Cakes, biscuits and various other delicacies , made by the team themselves..
It was the hottest August Bank Holiday on record with very harsh sunlight , hence the phone shot.
He's a two-year-old black lab whom we had met once before. This time around, the service dog trainer wanted to see him help Janice keep her balance in a shopping mall. The two of them did so well that we're going to take another step with Bogie. We'll have him as a guest in our home for a few days next week. It's nice to be moving forward with a partnership that Janice needs!
Boulevard de Sébastopol 26/05/2016 19h56
A blue awereness ribon to support the Multiple Sclerosis awareness. Here on the Boulevard de Sébastopol.
Boulevard de Sébastopol
The Boulevard de Sébastopol is an important roadway in Paris which serves to delimit the 1st and 2nd arrondissements from the 3rd and 4th arrondissements of the city.
The boulevard is 1.3 km in length, starting from the place du Châtelet and ends at the boulevard Saint-Denis, when it becomes the Boulevard de Strasbourg. The boulevard is a main thoroughfare, and consists of four vehicular lanes, one of which is reserved for buses (and share it with bikes).
Although the road is line with some shops and restaurants, its importance is that of a thoroughfare running north-south in central Paris. It separates Le Marais from Les Halles.
Located near the metro stations: Châtelet, Strasbourg – Saint-Denis and Réaumur Sébastopol.
History:
The boulevard de Sébastopol is one of the most important roads opened up by the Baron Haussmann during his transformation of Paris in the 1850s. It was conceived as a major artery running a north–south axis across Paris, leading to the Gare de l'Est.
The road was christened Boulevard du Centre when it was opened in 1854. Following Napoléon III's victory at the port of Sevastopol, in the Crimea of 8 September 1855, it was given its current name.
For several years, the name belonged to the road known since 1867 as Boulevard Saint-Michel, along the Rive Gauche up to Rue Cujas.
Length: 1,332 meters
Width: 30 meters
[ Source: Wikipedia - Boulevard de Sébastopol ]
Listen: See the Light by Ghost
2019, May 6, 3:13 PM.
I was diagnosed with Multiple Sclerosis (MS).
In brief it's a non-inherited, non-transmittable disease where my auto-immune system attacks the protective covering of my nerves.
Currently there is no cure.
All this did was piss me off because I still have so much to do and it's gonna be a bit tougher.
Am on new meds now. So far so good, we shall see how it goes.
The real heroes of the story are my family and close friends who are doing what they can to help me through this.
Staring down the barrel of my mortality has provided additional clarity.
I will NOT be a servant of it.
I will NOT be a slave to it.
Copyright © 2019 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
I’m doing much to keep improving:
Occupational Therapy to compensate for my severe hand tremors,
Speech Therapy to help with my speech impediment and my memory issues,
Physical Therapy for my walking disability. I’ve gone from only being able to walk 2 blocks to almost 1 km and I am now able to walk backwards, a very short distance, without my cane (slowly, of course).
As a person in my support group stated:
“Big doors swing on small hinges.”
Copyright © 2021 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
This is a pseudo-colored image of high-resolution gradient-echo MRI scan of a fixed cerebral hemisphere from a person with multiple sclerosis.
Credit: Govind Bhagavatheeshwaran, Daniel Reich, National Institute of Neurological Disorders and Stroke, National Institutes of Health
One of the ways I felt more normal is that I was invited to play D&D via Zoom once a week with my bro’s group. In fact, one of them sent some large dice that were better for me to handle since I was having trouble with my hand. Playing with them really helped provide a sense of normalcy that I really needed.
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
She'd rather walk uphill than downhill. We use a different set of muscles for each. Yet, she does what is necessary!
From left to right: our daughter-in-law, Laurel; her mother, Linda; our oldest son, John; and our grandson, Flynn. Ready to walk five km, on a beautiful afternoon, in Hershey, Pennsylvania. The annual event raises money to fight multiple sclerosis.
Today's theme is MS Ambassador.
I would like to acknowledge the efforts of the MS Angels, a network of professional business women founded in 2008. The MS Angels support independent research into Multiple Sclerosis by each making a donation of $2,000 per year which is collectively invested into a research project chosen by the group. Projects that would not be able to proceed without their financial backing.
The title for today's image comes from the song written and performed by Bernard Fanning (former lead singer of Powderfinger). Watch Over Me was dedicated to the plight of young disabled Australians requiring full time care and having few options other than through aged care facilities. He became acutely aware of this issue through his friend Shevaune who at the age of 33 needed full time care due to the extent of her disabilities arising from Multiple Sclerosis. Until that time in 2006, the level of public awareness about the shortage of care options had not been sufficient enough to generate enough momentum for the government to act on the issue.
My current pledge is $389.20. Each of your comments, views and faves are contributing to that pledge.
Share an image with the pledge to kiss goodbye group. You will help to raise awareness while boosting my personal donation to MS Australia at the end of this month.
Donate to my fund raiser's page Palo's Pledge. All funds go directly to MS Australia to further research and to provide service to those affected by MS.
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
One of the things that every 3D artist must know is UV mapping. Imagine taking a shirt apart at the seams, repainting it, then putting it back together so that the seams are hidden. It can be a very technical aspect of 3D. Most 3D artists hate it. I love it. It’s like making a jigsaw puzzle in reverse.
Yesterday, my son was talking to my wife about a planter we have. I don’t remember the conversation, my mind had drifted, and imagined this planter as a 3D object. I was able to determine where the seams would go, how it would unfold, saw the textures needed, even optimized the size of the textures for speed of loading the object. All within the span of a few seconds! I began to cry with joy after I realized what my brain did. It’s a skill that was lost to me due to my MS. It will take time to hone that skill again. And that’s ok.
Copyright © 2021 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Taken this morning at Cardiff Bay - a rare selfie of me in The Water Tower there. I'm hesitant in explaining this but here goes........ The reason for this is because an altercation with a man who had parked his massive delivery lorry in a disabled parking bay taking up two spaces set aside for Blue Badge Holders had somewhat rattled me. Many will know that I find walking any great distance to be challenging so when I spend time at Cardiff Bay whilst Huw is in his monthly meeting at MS Soc Cymru, we need to park the car here because I use my 'Doris' Bike' . We both challenged the lorry driver over this and in brief, one of his sentences got to me .... "I'm fed up of the likes of you" as he took a phone shot of the inside of the open boot of our hatchback car (!) Anyhow I scooted off in the direction of Cardiff Wetlands Nature Reserve , a place where nature knows no boundaries nor discrimination.
I must say though that I did laugh when Huw joined me there and told me that when he returned to the car , there were three armed policemen looking at it ( presumably on the way to The Senedd / Welsh National Assembly) lol!!
This is Eiko, an 83-year-old lady who just rode her bicycle 150 miles in two days for the MS-150 City to Shore ride, to raise money for multiple sclerosis. It was truly an honor and an inspiration to be in the ride with her and to talk with her.
This is her 25th year doing the ride, so to honor her achievement, she was joined by 19 of her family members--children, grandchildren, great-grandchildren. They flew in from all over the country, formed Team Eiko, and rode with her.
As she does every year, she rides in a skirt and pumps. She rides a lady's bike, sitting very upright, and there's a big basket on the front of the bike. She greets everyone and wishes all of us a good ride.
She hasn't retired yet, and still works as a massage therapist. She even gave massages to some of the MS patients that she met along the ride.
Amazingly, she doesn't train at all for this ride. She's just in naturally good shape! Her bike hangs in the garage, and the week before the ride, her great-grandson gets it down for her.
The ride started outside Philadelphia, in Cherry Hill, New Jersey, before dawn. It goes southeast across the state to the Jersey Shore, at Ocean City, where we slept overnight and then rode back the next day.
What a lady!
A couple of years ago I was diagnosed with multiple sclerosis. This is my daily treatment that will hopefully slow down (or stop) the progression of the disease.
I met several other patients and it was decided to have a hair cutting ceremony since everyone would loose their hair. The ceremony was cathartic.
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
One of the worst things I've experienced since my MS diagnosis is doing nothing. Merely existing. Unable to help.
Unable to do anything.
Copyright © 2019 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Service-dog-in-training, Bogie, waits for Janice to call him in this first encounter with his potential "partner."
At the end of the day, we were asked to rank the dogs we had met from the one we liked best. For Janice and me, it was Bogie. We liked his assertiveness and his eagerness to work. The staff need to make the final decision, if a match is to be made this time around. But, it was fun -- and difficult! -- to state our preference.
This very friendly dog captured much attention at the M.S. Walk in Hershey, PA. She walked the distance, then fell asleep quickly as her humans ate lunch.
My wife loves crochet. Even with reduced coordination due to multiple sclerosis, and the titanium elbow she received after a fracture, she keeps going. With our first grandchild on the way, she just had to create a new afghan. Now, she has plans to teach some of the ladies in the church!
Wear red today to show your support.
Dare to wear nothing but red for the rest of this month to show your support.
Share an image with the pledge to kiss goodbye group. You will help to raise awareness while boosting my personal donation to MS Australia at the end of this month.
Donate to my fund raiser's page Palo's Pledge. All funds go directly to MS Australia to further research and to provide service to those affected by MS.
WARNING - tomorrow's post will contain quite a long story. Grab a coffee to enjoy while you read
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
You'll see more of this vest in future photos. In preparation for our first trip back to Lehigh Valley Zoo, where I volunteer, we ordered Janice a cooling vest.
Great for people with multiple sclerosis, the vest's lining has slots for blister packs of water, frozen in our chest freezer. We'll insert the packs before we leave, put the vest in a cooler, and dress her with it when we reach the zoo.
Janice has multiple sclerosis, making her especially sensitive to the summer heat. Now, I'll be the one sweating and she'll be heat proof!
It was 4 years ago today that I got my stem cell transplant. Yes, I’m still keeping the tradition that my late wife started, a tart this year.
Things are looking OK for me. I still struggle. Yet, it’s totally not as bad as it used to be. I’m not in constant pain, I’ve not taken any MS drugs for over 4 years, I’m doing things I could not do 5 years ago.
Next year will be the major milestone.
Stay tuned.
© Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Listen: Pull Me Under by Dream Theater
"Every step bings me colser to my last..."
One of the things I did not expect after my MS diagnosis was that I no longer fear a lot of things I used to.
Copyright © 2019 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
A trainer straps a harness to Timber, a service-dog-in-training. Janice and I returned, today, to Susquehanna Service Dogs, where my wife is on a waiting list. The dog she receives will help her with things like balance, picking up objects, and even responding to a command like "Go find John!"
Today, Janice met three potential matches for her, including this strapping young man. I'm still editing photos from our trip; I'll post more tomorrow!
For everyone who took the time to read my story yesterday, thank you. No words today ... the theme for today's Kiss Goodbye to Multiple Sclerosis is a red building. This is the "red box" or Physical Theatre in Lilyfield. Posting this image does not suggest a relationship or association between MS Australia and the Theatre.
My current pledge is $303.75
Share an image with the pledge to kiss goodbye group. You will help to raise awareness while boosting my personal donation to MS Australia at the end of this month.
Donate to my fund raiser's page Palo's Pledge. All funds go directly to MS Australia to further research and to provide service to those affected by MS.
________________________________________________________________
COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
Does it count if you have hundreds of #books stored away in boxes because you moved back home with the folks? Hooray for #multiplesclerosis!! . #millennial #successquotes #quotes #quotestoliveby #quoteoftheday #libraries #averagesucks #amreading #readabook
"If you must tell me your opinions, tell me what you believe in. I have plenty of doubts of my own." (Johann Wolfgang von Goethe)
For those who do not know me very well, how this image relates to opinion may be obtuse. I have given it an alternative title "pins and needles and pills" and this brief explanation.
Yesterday I finally got to see my neurologist after a two month wait. For the past two months, I have had a significant relapse of my multiple sclerosis - the first major and physically debilitating episode in 7 years.
Since my last MRI, I have developed two new lesions on the left hemisphere of my brain - not great news but news enough to support my neurologists arguments that I should once again seriously consider one of the treatments available to potentially slow down the rate of relapses and progression of this disease.
After the initial diagnosis of MS, I had for a period of time injected betaferons but suffered from significant side effects and decided to stop the treatment. The options open now are another form of injections that are daily or possibly a new oral pill which has recently become available in the last couple of years. Both options have their pros and cons ... and everyone seems to have an opinion.
The opinions of the medical experts tend to gloss over the harmful side effects, while researching for a second opinion on the web, there seem to be more horror stories than positive acclaims.
At the moment, I am working through my opinions ... as well as sifting through how my internal biases may be clouding or influencing my judgment. At the end of the day, there are two certainties -
(1) this disease is a part of my present and my future and
(2) I firmly believe that the brain has the power to heal itself and no drug will be as potent as that self positive belief in healing.
submitted to 100 words
68/100 words: opinion
© All rights reserved. 2012.
I was hesitant in choosing this for today's Photo a Day for fear of it being construed as bragging, so I double checked lunchtime with Huw who happens to be in Birmingham today.
Last night when I turned up for our MS fundraising group meeting followed by a Support Group meeting , the four of us who make up the group were given these awards by the Director of MS Cymru. If you look closely it's for the £5000 which we donated to research alone last month . We only started this group less than three years ago but in those three years we've raised over £20,000 in total ( distributed where it's needed ) Events have included Sky Diving, Charity Dinners, 10 k runs - you name it. I'd hoped to do the Velocity Zipwire in Bethesda myself on June 8th but there's another event that I'm to be at.
I don't know where to put it though so for the sake of the photo I moved my laptop from my desk and placed it there..... and cleared some dirty mugs away ;-)
Lovely husband just sent me this 😳 Luckily those on iPads won’t see the ‘live ‘ link 😉
This is a pseudo-colored image of high-resolution gradient-echo MRI scan of a fixed cerebral hemisphere from a person with multiple sclerosis.
Credit: Govind Bhagavatheeshwaran, Daniel Reich, National Institute of Neurological Disorders and Stroke, National Institutes of Health
Listen: This Corrosion by Sisters of Mercy
"I bled all I can, I won't bleed no more"
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
Soon came the day that my stem cells would be collected. The machine was plugged into my PICC line and I sat for a few hours while my cells were harvested.
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
A QUICK NOTE TO ALL MY CONTACTS!
As many of you already know I have gone into business as a photographer to try and see what I can do out there.
You may also know that all of my prints are for sale, and I am starting to list them at
What you may not know is that someone close to me suffers from a very serious illness that unfortunately far to many people suffer from.....Multiple Sclerosis
MS is a bizzarre illness that affects everyone who has it in a different way, and although they do not have a cure for it yet, they are getting closer every day.
As such I have decided to DONATE 100% of the profits form the sale of my artwork to the National MS Society.
So if you like one of my prints and would like to contribute you can get ahold of me via flickr mail for pricing. If you don't want to but a print but still would like to contribute you can visit the National MS Society here
www.nationalmssociety.org/about-multiple-sclerosis/index....
and click on the link on the right hand side to donate.
I know there are a lot of good issues out there to champion, but this is one I have decided to become personally involved in.
Thank you all in advance for your support
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.
I saw my MS specialist yesterday. All continues to improve. I talked to him about how I’m now shifting my weight when I walk. It’s super subtle. It’s a combination of physical therapy and what I learned in aikido.
Copyright © 2021 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
I’ve been standing on my toes every day, as a matter of health improvement (and because it still feels new). I decided to attempt to rock back on my heels, just to see if I could. I was amazed to find out I could rock back and forth from toes to heel, as long as I held to a stable item, like a chair, I was crying with joy because I have not been able to do that for several years. Amazing how simple things can fill me with joy
:-)
© 2023 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
For years, I've been giving my wife an injection each evening.
With multiple sclerosis, the body's immune system attacks the myelin coating on the nerves. Copaxone serves as a decoy, attracting the body's defense system away from what it shouldn't be attacking in the first place.
All this time, I've been using a plastic, spring-loaded "auto injector" to administer her medication. Years of this practice has caused some trouble with her skin.
So, today a home health nurse came to the house and taught me to inject with only the syringe. I practiced on a device that simulates the resistance of human skin.
I have yet to sink a needle into another human being, manually. But, I am soon to be initiated! The nurse says it'll actually be less painful for Janice than the auto-injector's spring-forced assault.
And quieter.
Every day, we had our apartments cleaned, and the patients were invited to the garden roof to wait for the cleaning to finish, to get some sun, and participate in activities. Several times an artist, Monik, treated some of the patients to painting techniques. Even if they have not painted before ^_^
Copyright © 2020 Vic Bonilla All Rights Reserved.
Do not reproduce this image without expressed permission from the photographer.
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.
This is yours truly with my better three quarters, captured with my phone by a staff member at today’s MS Awards Ceremony in London.
‘Kiss Goodbye to MS ‘ is a fundraising challenge by the MS Society UK challenging people to give up something during the month of May. The aim of this is to raise money for research into the condition . Huw himself is giving eating up cheese ;-)
" Some 110,000 are diagnosed with MS across the UK, a neurological condition which creates a disability unique to the individual. There is no cure and so the MS Society for (which I volunteer) through its fundraising, supports research to provide disease modifying drugs, seek to find a cure whilst simultaneously providing support across the UK to all affected by MS"
I would love to use this as my Photo a Day but being a stickler for rules, as mentioned above I didn’t take it myself.