My Sclerosis | A film about the day-to-day impact of MS
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- čas přidán 18. 02. 2020
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Natalie shows up late to her date. Don't worry, she's fine.
'MySclerosis' looks at how #MultipleSclerosis affects day-to-day life, told through the lens of Stash Capar, a film director who’s living with MS 📽️ If you don't talk about MS, it can be hard to know what your dealing with😖 It's ok to not be ok. Talk about it 💬 Stash opened up about his experiences of MS. He made a film to show others how MS affects day to day life, based on his own experiences🎞️
This compelling film highlights the daily struggles people living with MS go through, and the impact that this has on relationships and everyday routine - tasks that many people without MS take for granted. We’ve all told people we’re “fine” when we are not and know it’s sometimes difficult to share what’s really going on. Stash’s compelling short film allows people an insight into everyday life with MS and to let people know that it’s OK not to be “fine”.
How does MS affect your day-to-day? Please help us get Stash's film out there by liking and sharing your experiences in the comment section below 👇💚 We're so excited share Stash's film with you. Watch. Enjoy.
“My Sclerosis” was written, directed and produced by Stash Capar. Stash is a Polish-Canadian film director, based in Toronto, Canada. Stash was diagnosed with multiple sclerosis in 2011 and had a few very rough years early on, but slowly, through trial and error, found his own way of managing his MS.
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Starring: Sarah Mercey and Christef Desir
Written & Directed by Stash Capar
Producer: Mikhail Petgrave
Cinematographer: Evan Ciniello
Editor: Dave De Carlo (Rooster Post)
Music and Sound Design: Jochen Mader (Zenthing)
Colour: Andrew Exworth (The Vanity)
1st AC: Steele Fernandes
Key Grip: Greg Paraskov
Gaffer: Cody Eason
Art Dept: Lachlan Brown
Make-up: Ray Allison
Sound Mixer: Kendra Welham
Producer Assist: Elise Ardizzi
PA: Peter Badleo, Ryan O'Hare
#MySclerosis #Shiftms #TalkAboutMS
Very difficult for people without MS understanding what happens day by day when you have MS. This makes it easier to understand and see it as it happens.
I have MS myself, these videos articulate what people inflicted by MS go through on a daily basis. Thank you very much.
“I’m fine”
I say this all the time and I never mean it.
I’m not fine. I’m in pain. I am exhausted and it’s only 9am. I can’t follow what you are saying. I don’t remember what I was just doing. I am stressed out beyond belief. I am worried. I am anxious.
I am anything but fine.
“I’m fine” is a mask so I can face the day and pretend to be normal.
For 20 plus years i have been doing the same. Saying i am fine especially at work. I just started using a cane why ask me if i am fine🤔. May be they want me to tell them the truth like my feet has constant pins and needles now for 20 plus years. But to me leave me with pain but once i'm alive😀
Wow,omg,you nailed me
I am fine😂😂😂
As a 71 yr old woman, I can relate to all who have commented. I can walk some in spite of the stasis ulcers on my ms leg but only if someone is behind me with my wheelchair. Not going to take a chance of breaking anything. It’s been a difficult journey but it beats the he’ll outta the alternative. Still living alone in a one bedroom apt. Not luxurious but it’s ok. Beats the hell outta of a nursing home. You youngins will be ok cause there are so many options for medications. Just remember on those tough days, and there will be many..you got this. Great video!
This is a very sweet comment :) I'm 29 and recently diagnosed, i know that whatever lies ahead will teach me to be stronger.
It’s a very good piece of film. Next film, can you include something that is also invisible, like the anguish of trying to empty your bladder before leaving the house and then hoping that you can find a bathroom wherever you are going, oh and the judging looks from some people when you emerge from a disabled toilet because you gotta go, but you are upright. Oh yes, and the people who honk their horns at you because, even though you’re getting out of your car with a cane you don’t look the right age to have a disability and they want your disabled space. This has happened to me a few times now.
Great suggestions @David Kennedy
Thank you!
Or thinking if I dehydrate the shit out of myself, I’ll be fine to drive for longer before needing to frantically look for a toilet? We know that’s not good either. I don’t go anywhere now without a pee bottle in the car (with a good sealing lid😜) easier for males I guess?
I don't hear enough people talking about the bladder issue. Worst part of having MS for me.
A different country, the same experiences here ... sad to say.
WOW!!! This is it. What I can't explain to anyone else...
I haven’t been fine in 23 years. Sadly people don’t get it until they get it and we hope they don’t get it. I’m going into my seventh year being bedridden yet I’m still fighting to get out of my bed. Multiple sclerosis is pretty much all of the diseases rolled up into one. Keep fighting everyone! #TheBedRiddenWarrior
Tracy Radford I am rooting for you!
JanDeluxe78 Thank you! ☺️
How are you now !!
Hey, how are you doing?
This made me cry. I struggle so badly with talking about my difficulties.. It's like nobody sees what the big deal is because I look healthy.. or assuming I'm making it sound worse than it is. I'm not looking for special treatment or seeking sympathy. They can't understand how I'm ok one day and awful the next.
So relatable! Especially the feeling your fingers because they often don't feel like they are actually there.
Hey Claire, I'm glad you enjoyed the film and can relate - have you ever had an experience when you've said your OK but really you weren't?
@@Shiftms gosh yes... Too many times because it's too hard to bother actually telling people how it feels. It just because normal and now with all these symptoms constantly I'm fine seems the only way to be.
I play guitar and this is my biggest fear.
@@TheOligoclonalBand I’m a creative and my dominant hand started spasming and I couldn’t use it for about 30 seconds to a minute with each wave (that I could feel was about to happen in advance), and that was incredibly scary for me as I feared I’d lose all sensation and use in that arm and hand completely. I still do the finger clenching mainly because I just love that I can still feel and use that hand. Never taking a commonly used part of my body for granted again.
That's me!!! Have really bad short term memory loss.
What kind of person gives this video a "thumbs down"?
Someone who does not have a family an nobody cares about🤔
This made me very emotional and could be me on any given day. MS is ever-changing and cruel!!!
Diagnosed a week ago. I have spasms on the left side of my body. When I get up, when I turn around, I feel stiffness and spasms. This movie is just represents how I feel, what I go through.
I wish the best of luck for my MS warrior friends.💜
I fell when i was cooking once and my son was small.I had to crawl to a chair to pull myself up
😞😞😞
This made me cry. I struggle so badly with talking about my difficulties.. It's like nobody sees what the big deal is because I look healthy.. or assuming I'm making it sound worse than it is. I'm not looking for special treatment or seeking sympathy
As someone struggling with Charcot-Marie-Tooth Disease, I can understand this feeling... It's more prominent considering I'm still in school
Was officially diagnosed several weeks ago - optic neuritis was my first symptom, i haven't recovered in 4 months and am almost blind in one eye. I'm not even 30 yet - I am so afraid of the future right now :( This disease is so depressing, It's in the back of my mind every day now. What will break next? Will I be able to have a normal life? Great video - I hope MS continues to receive more research and funding, it is truly horrible.
Watching this made me tear up. I know exactly how she feels. This is so spot on. Thank you for putting a voice to our struggles.
I go on April 3 to my first neurologist appointment. An MRI in September showed possible lesions. I have tremors now. Weakness in my arms and legs, numbness and tingling. Brain fog. Fatigue. Bladder issues. Dizziness. Sleep issues. Depression/anxiety. Chronic pain. … all I need is a diagnosis and then hopefully some sort of help for this monster that has taken my quality of life away.
I only use solo cups at home since I tend to drop too many things. Balance is a big issue when it presents itself. MS is just so unpredictable. I think Deluth Trading Company must have invented these new dress shirts for us MS folks. It looks like the shirt has buttons, but behind them are magnets! It's so cool. Now my wife doesn't have to button my shirts!
Still Vertical I use cups and tea pots that are flat on the table and not very high. This way they don’t get knocked over easily, but I still manage to make a big mess every once in a while.
Incredible video. I have Primary Progressive MS. I was diagnosed in 2011. Knowing what I know now I’m pretty sure I’ve had it since my late 20’s early 30s. When I diagnosed they it was Relapsing Remitting or possible primary progressive. I feel that what I deal with now and it’s always been happening in one form or another til it became obvious something going on and here came the MRI and the infamous “The Sinal Tap” which I pushed for early on to surprise my doc. I was positive. My friend was diagnosed in 95 and I helped a lot for 4-5 years til he moved north. As I learned I’d think wow I do that sometimes but it just wasn’t clicking. 🤷🏻♂️ Anyways I appreciate your story because it’s so relatable. I’m 65 now so I’ve been dealing with the issues for many years without knowing I had MS. It is what it is. I never give up. I’m on Ocrevus now and have my 5th infusion this May. I still use the “I’m fine” come back knowing every time I’m not. Mainly because I know they don’t have and can’t understand totally and then I feel I have to explain all the amount of effort it takes for the simplest tasks. Take care of yourself. Stand Strong Stand Proud!
Hi, are you still abble to walk, are you in a wheelchair ? Im learning about this disease
@@AwesomeGirlie I live by myself for many years in a tiny 2 bedroom house. Fortunately, I guess, is I live in the forest and have a overlook to Woahink Lake in oregon. Taking garbage can down every two weeks is a 160 step challenge. I use a cane all the time. I mis-step most of the time I walk. I have a new wheeled walker but it’s tough cause my place is small. I lean forward while sitting or standing. Washing a few dishes I quickly end up leaning over sink and have to stand back up. Staying straight while sitting is constant. My knees give out and I have to use cane or grab something to stop falling. Everything from getting up and dressed to maintaining myself throughout the day is continuous effort. Due to very little movement and adding bout 25 lbs. I’ve gotten myself into to where I have to pee bout every 30-40 minutes. I must get to exercising more. It’s said, use it or lose it, is real. Motivation is a CHALLENGE! Even though continued challenges I just push forward. I never give up and never surrender. I hope the best for you. Last count I remember is a few million have MS so there’s a few million stories. It’s different for everyone even though there’s similar challenges. Find a good neurologist. Look into Ocrevus. It helped me for Four years. No new lesions . I went off because my in fusions were in Portland. A 31/2 hours drive both ways with a 3 infusion. Just too expensive for retired guy. 🤷🏻♂️ You can do this and I wish the best of successes. Stand Strong Stand Proud! 😎👍🏼
@@sheridanrose9880 Thank you for this. I wish you the very best. I dont have MS, but my friend has it. Trying to learn about it. Thank you a lot.
@@AwesomeGirlie On you tube there’s several MS Drs that post regularly. Dr Aaron Boster has a lot of info. Also look for an MS forum group in your area. In Florence we meet 2nd Friday each month. Everyone shares their MS experiences. It’s great because the folks are fellow MSers.
I do the eye thing
Thank you. My friend has been diagnosed with MS and this helped me understand a part of what she’s going through.
Why do all your films make me emotional? While I don’t have nearly as severe problems as Natalie has, I still can relate. Beautiful description of the struggles that others can‘t see.
This is so tastefully done! ❤️ so relatable, Thankyou so much
So sad but let’s find a cure!
I'm in an MS hospital right now, people here are super nice and it's great to talk to people who can really relate.
That thing with both the coffee cup and the bathroom is me on a good day
beautiful
This was amazing and relatable!!
So relatable. Stash is super talented. Thanks for your comment 🙂
@@Shiftms I want to share this with family and friends how hard we work to just be normal. Thank you Shift.ms and Stash!
@@AJHR77 Please share as much as you can to help people understand this condition 🙂
I can only dream of running to work or walking to the bus stop all not possible. That's my day to day impact with MS.
I was 14 years old (Im now 28) and in a summer program before high school the first unknown to me flare-up was numbness in both my legs and weakness. I had no idea what this was and so I didn't know how to tell people but on the first day of high school, it was gone. I was normal again.
In December I noticed that I started seeing double but I wear contacts so I blamed the double vision on my contacts. Later into December, one eye was straight and the other was looking inward, it scared me soo much. Went to my eye dr said my eyes were healthy but didn't know the cause of the eye crossing. I went to my family dr again I was healthy but he didn't know either what was the cause of the eye crossing. I then go to the ER and had an MRI BOOM!! I have MS and getting this news as a 15-year-old was lonely really lonely.
I didn't tell anybody in my high school just my teachers, and my close friends but in my county, I was the only teenager who had MS yes there were other people who have MS in my county but they were adults who already started families 30-40 years older than me and I was a teenager and it was really hard for me to understand at the time. I just wanted someone to talk to my age.
Very powelful, it be good to see a follow up like. If she put some adaptations in her home or further on down the line opened up to her friend....
OMG, I SO relate. I've tears welling up here ....
Thank you for making this powerful video.
Made a CZcams account just to say that.
Thank you Neil, appreciate it 💚
This is exactly what it feels like. Thank you for this.
Spot on
Wow, this made me very emotional. So relatable. Thanks
It's important to realise that ms is different for everyone. And that not everyone will be exactly like this who has MS
If you know one person who has MS you'll get a little insight into how it affects them. Unless you spend 24 hours a day with them you won't even see exactly what it's like for them let alone have any insight into how someone else will be affected.
There is no understanding MS, ever, even the neurologists that I have seen over the last 15 years don't understand MS as well as I do. I don't understand it well either, nor do I profess that I am some sort of expert.. But you know what MS does that is just absolutely awesome? It's surprises you everyday :) what better gift could be bestowed upon an individual.
One day you are running, next day you can barely walk.
One day you are a hobby chemist the next day you have chemical Burns all over your arms.
One day you have an awesome manual sports car next day you can't drive anything but automatic.
One day you are Gordon Ramsay in the kitchen the next day you can't cut your own steak.
One day you type a 160 words A minute and the next day you have to use voice to text and it takes you an hour for 1 paragraph.
It may sound kind of dark, but it's sort of exciting To see how your body is going to betray you from day-to-day, eh, and it's even more exciting to see how much intestinal fortitude you as an individual have to stand up to this nonsense on a daily basis.
It's like reading a comic book where your hero is regularly subjected to the worst that the world has to offer but but you don't if hes going to give up this time or if hes going to come out on top like he always has.
Damit ist alles gesagt! So traurig es ist so, wahr ist es. Und es geht weiter und weiter!
Toll gemacht! Liebe Grüße und alles,alles Gute!
At first it seems like you are watching a horror movie, but then you realize that you have the same problems. And it's awfull (((((((((((((
Wait...lol...let me wipe the tears. Great video! As an aspiring film-maker this...well...aspired me! #AnotherMSmonday is coming back to life! Thanks for adding some wind in my sails!
This film is beautifully done, and gut-wrenching to watch.
powerful stuff.& I can relate to it all
I have ms and i can relate to many aspects of this but some seem foreign. We all experience different challenges 😞
I have gone into spasms and collapsed in the shower. It’s when the hot water heats up your lesions and you short circuit. The neighbours must have heard me screaming the first time 😮😭.
Really relatable and very well done. Go ShiftMS! xx
😢 I hate it no one truly understands my struggles it’s horrible
Jehovah god understands your struggles soon at isiah 33:24 no one will say i am sick
This scares me to see for the first time but that’s how I feel especially the fingers
Wow that sums up my daily life so hard to explain x
I can so Relate to her it's such a difficult condition always the scary monster MS by your side
Grrrrr I fight mine even when crawling until crawling is not an easy option then sliding holdin on mmmm I have got the strength to defeat anything aslong I'm Still ALive N breathing
they knew back in 2014 because there was spots on my brain but nothing was done and then I was in a car accident about 7 years ago but it took them this long to tell me I have MS
so original
Accurate
The worst is when ur husband wants to leave u n kids cos we all have autoimmune conditions 😔
Me too
I thought it was just me. I wished I could just exit. Who would want to live with me? Im tired of being tired
I have ms guyz
Is this the whole film?
trailer?
❤️
😢😢😢😢
I have seen what MS does not only to those affected by it but as well as to those who care for those afflicted. I am a musician and I have used this video to project a message of hope to you all. Stay together and fight the good fight because it is better than facing it alone or having to deal with the aftermath of THE STORM. I am a survivor of MS which came upon my then wife before we were married and have witnessed everything that MS can take. Sometimes it robs each of us of more than our abilities to function. czcams.com/video/CGqyX6JskQQ/video.html
the silent disease
Looks like a horror preview lol
Add a screaming Manga character for a representation of ultimate despair and confusion...and you're halfway there to depicting what it's like living with this debilitating disease. I'd rather have cancer.
I really think this could of been done better. Yet hey u suppose this is just one persons symptoms in there day,.so much variations in symptoms
Toll czcams.com/video/qYlSdXuiy5g/video.htmlgemacht!
Viele Grüße aus Berlin!
Uschi
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