Living With Primary Progressive Multiple Sclerosis
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- Опубліковано 11 лют 2021
- Sharing our Multiple Sclerosis stories with each other helps us to understand what each of us have been through, it allows us to have an outlet, but most of all we can feel supported.
If you would like to apply to be on my channel please fill out this form: lauratalksmsapplication.brizy...
I speak to many people with Multiple sclerosis who feel quite isolated and alone because no one understands them. They don't understand their daily struggles, their pain, or their struggles with their invisible symptoms.
I've created these MS story videos so that people from all over the world can talk with me and share their stories about their MS and hopefully raise awareness about this disease.
Today I'm talking to Ed Collins from Petaluma - California. Ed has PPMS and shares when he was diagnosed, what symptoms he had, what treatment he takes to how he copes with his MS.
If you would like to contact Ed to talk some more with him, you can find him at :
Instagram : @noodle5150
Email : ppms.rescue.ed@gmail.com
We hope you enjoy this video if you have any comments please leave them for us in the comments section 🙏
If you would like to apply to be on my channel please fill out this form: lauratalksmsapplication.brizy.site/
Ed shares his story with his MS in this video. He talks about his diagnosis, about how life is for him, how he copes with his MS and what life is like on ocrevus treatment. I hope you all find this video informative, I believe sharing will help us raise awareness of this disease and talking is a great support to each other.
If you'd like to contact Ed his details are in the video description.
Watch out for the next video which will be out soon 🧡
Hey, that's me!! This was so fun.
Had so much fun chatting with you. Thanks so much for being the first, its a brave step to raising awareness 💪👍
So grateful for this. Talking about MS is so difficult and I'm so glad to hear experiences of others and feel less isolated. I am reading Dr. Terry Wahls approach on diet and lifestyle changes and how they made her overcome her secondary progressive MS. And the potential effects of Zeolite for detoxing heavy metals that can lead to such chronic problems such as MS
So glad it helped you in some way. MS can make some of us feel isolated and talking with others just helps to let us know that we're not alone 🧡
Awesome thanks Ed for sharing your story!! It really hit home.
Hi all M.S M.S WARRIORS
Thanks for the bloopers 🤣🤣
Comment to come, I'm going to watch it a few more times.
Cool dude😎
All good here, staying positive, I now have the internet 🥳🥳
Hey Kit, nice to hear from you and glad you're keeping well. It would be great to have you share your story with us if you'd like to 😊 I don't bite.. Well just a little! So nice to hear you're staying positive too 💪👍🤘
@@lauraironstalksms I would like that, I will need time to phyic myself up to that, autistic brain, and I need new teeth, I lost mine saving my dog from drowning, and my dentists tooth dude, shot himself in the eye, with a crossbow???? How???
Real life is much more entertaining than the telly,
Ooooh, Ed is my MS buddy!!! It's like being friends with a celebrity!!!
Oh, he's a great MS buddy to have! 😊
You take all the time you need. I'll be here waiting. We could do short bursts if it helps. Concentration is not my forte! Thank you for your kind words I appreciate them.
It's so good to hear everyone's experience. It is EXTREMELY IMPORTANT to know your own body, and to be quite alert with what's going on. Ocrie is amazing.
Yes Shay I agree about getting to know you're own body. That definitely comes in time.
Can't wait for you to share your story 😉😍. Hope you're doing well, sending you good positive vibes from Wales (and the dogs) 🐶🐶
Well i had my diagnosis in 2019
My husband treated me horribly from 2015 ,i think when my symptoms of ms started
He always treated me badly but it got worse when i was truly weak ,could not do things quickly,became slower in thinking n talking,fatigue was a major factor n my gait was not not normal
Sooo the stress of my husband aggravated the condition 😢
Ocrevus is the only dmt approved for ppms. Its main benefit is to slow the progression of MS. Not all who are on Ocrevus experience the benefits Ed attributes to ocrevus.
I'm sure they don't, but this is Ed's story
I am in Lk Tahoe NV. I have PPMS DIAGNOSED 8/2015. I feel horrible. Scared. Have fallen many times. Broken many bones. No future.No balance. Motorskill loss. Each day grows bleaker for me. No real support from neurologist. Very isolated.
So sorry you feel like this, Ed also has PPMS and has reached out. There's lots of support here if you ever need it, please don't feel alone.
Research has shown Ocrevus dose slow down, PPMS.
When you get a lesion it will shrink, naturally ending in what they call a black hole.
My understanding is Ocrevus on it's own only kills off the B cells.
6 hours for the infusion, that's something to look forward to😒
On the 22 Feb, I'm going to see my neurologist, hopefully I'm going to get my date to go on Ocrevus, and to see if I can see my scan.
The ms buddy is a great idea,
I have a mantra
This s#*! Will slow me down, But it won't stop me.
The day I start thinking my MS will stop me is the day I stop living,
I'm going to bloody well have a go, at least I can say I've tried.
I'd like to jog up the road, but I'm not to keen on face planting the pavement.
But I had a go, it's the simple little things that can weigh heavy on the mind,
A collection of those can sneak up on you, and mess with your head.
I can see you on good morning Briton, your a natural, and you have face for TV.
That's actually a compliment.
Love peace and happiness to all you hold dear in your hearts.