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Thank you Paul for sharing your story. I am on a couple of fb groups with you and always enjoy your posts. Even feeling “shitty” has helped me. God bless

Thank you for your video. There's not much info on this and few understand what it s really like. . Have had it for 5 years. I have much empathy and respect for anyone going through this. What meds have you tried?

Intriguingly interesting.

I took your email writing course almost 10 years ago and still use what I learned from you everyday. Your training has helped me in my career to help me get to where I am today as there is no day that goes by where I do not have to write an email. I just wanted to drop a note to say thank you. You have made a difference with at least one individual despite the health challenges you have today. Thank you!

Love your dog, Paul and chocolate. .....

I was Dx in 2005 with RRMS and only in the last 7 years or so has it started to impact my mobility and therefore my life. That was after we moved to a new area and built a house. So many of my friends do not know that I now walk with a stick and that I even have MS. As I disclose to them over time some seems to draw closer and support while others draw away. I guess that is more a reflection of them than of me. It seems that those that have worked through challenges in their past are better able to relate to me...the rest float away blissfully unaware of the true challenges in life. For some of my friends it has made us closer- those are the friends I want to keep. The others may pop back up when they face challenges and all of a sudden realize that life isn't all glitter and sunshine ;-)

Thank you for sharing. I like your positivity even through this disease. Yes, we are only human and it's best to make the most of the life we have.

Progressive MS here. I wud rather hear ur own voice. I understand completely.

Nicely put Paul. I have MS as well although not dealing with the challenges

Nortriptyline helps me a little bit, but doesn’t take the headache completely away

Nortriptyline kids helps but doesn’t take the whole headache away.

Have tried 5 meds, No help. Have not tried steroids. Know people who have with no help.

Paul I have this as well (3 years now) although in terms of pain mine is more like 2-3 however its the fatigue that messes me up and impacts every aspect of my life. Am curious have you tried steroids? There are studies showing this has worked for some people with NDPH, especially those that have it due to post viral infections

I have definitely a New daily persistent headache it's a chronic type headache it's almost 5 years that i have suffering with this headache.I am so so much depressed right now because the pain won't go away for a little bit in a day it's continuously there i don't what I have to do i have visit serveral doctors but nobody able to resolve my problem. My life is ruining because of this headache that i can't rid of because the Google says that i no chance to be cured what can I do 😭😭😭

Thank you for sharing your story Paul.

Thank you

Do you ever get MRIs and if so what did they show?

Paul, My 16 yr old daughter has ms and NDPH just like you. I’m praying someone figures out the treatment for the headache! ❤️

I might have had this. Lasted 10-12 months or so.

You are kind. You are important. And you are beautiful 💜💜💜

😭😭😭Paul you don’t deserve this😭 Empathy…pure empathy. God bless your soul🧡💛💔

Controlled my migraines by stopping steroid nasal sprays. Never thought it was possible to get rid of it. It's a very common side effect of fluticasone. Neck stretches can also help a lot.

“BlackBird” 👏🏼👏🏼😭😭One of my favorite songs🎁💋Beautiful! Your voice is so beautiful 👏🏼😭

Thank you Paul👏🏼💪🎁🙏I appreciate you so so much!

I want to contact every single person in this presentation. So.... I know this is a very good presentation.

So well put together, Paul. Thank you,

What a beautiful way to share such a difficult (understatement) disease… I hope this reached thousands so they can better understand the impact it has on people and how to advocate for and validate them.

Thanks for the update, Paul. Good to know what's going on with you. You are a writing inspiration to me in both sickness and health.

Paul, thank you for sharing your knowledge with us. It would be more helpful to me if we could see you.

I notice the slight hesitation of the phrase 'MS Warrior'. I have had MS for over 40 years. It's been secondary for about 15 year (and two instances of alarming cancers) but have never considered myself a 'warrior'. I find that when I fight such things, stuff gets worse! For me, I kinda negotiate with what MS is doing to my body. I reach compromises and then sometimes sneak in a few caveats.. LOL! I find it best to always do what I can.... then just a little more.... then relax and recover. Fighting one's way through MS just seems to make things so much worse! So, like you I 'just dot it' - and then nap a while!

6 years ago I was a spin instructor. Now can barely ambulate with a walker. ( 65 years old- 28 years w/MS) 😞

I understand, I really do. Be happy you’re married ok? I’m alone , and no one really cares that much.

I got diagnosed with inappropriate sinus tachycardia cardiologist said its multiple sclerosis related..my neurologist said its not multiple sclerosis related..unbelievable

My nurse that comes to my house always said but you look fine...Invisible illness ..

One so misses 'doing stuff' in the way we used to. For me, I can.... but in bursts only. So, I work in little bursts. For you, I think it's different but you have a lovely wife who I am sure completely understands and loves you, no matter what. We do have to deal with what we have to deal with, Paul. I had to turn down SO many opportunities that many other people would have loved to have been given... for over 40 years. Good lord, I could have been famous by now. HAHA! Oh well, I see that as a lucky escape in many ways (!) Paul; you are not what you DO but who you ARE. You are a really OK guy. I just wish the headache would leave you. It would make life that much easier.... even with the MS stuff :(

This is your experience, for sure - and valid. As for me - it's been over 40 years. Also, I have known others with MS from a young age. But.. this is your experience... just not everyone's, Paul.

I watch videos on RUclips, read posts on myMSteam, get up and down going back and forth to the kitchen. Mostly just do things on the computer, every, single, day. Oh yeah, and I scroll through posts on Facebook, though that doesn't last very long most of the time. And I play FB games with my wife, son (in a different state), and a few other FB friends.

I have begun to get worse since the end of 2017 right after I turned 40 seems like when I went to Texas to spend Christmas in 2015-16 with my oldest brother I had gotten home in January 2016 and I was told I had the JC virus and couldn’t get anymore Tysabri and when Ocrevus was approved I started that with no luck I continue to decline I’m unable to do anything alone I was so grateful to be independent until I lost everything. I’m a very grateful woman after losing my parents and getting divorced from a narcissist who was emotionally and verbally abusive and I’m happily divorced from him with 3 kids and he continues to lie to my kids about their mother. I don’t let depression into my life because I lived that way for 8 years out 18 years I was with my ex husband I am now 44.

I have had multiple sclerosis since 1997 and I have been completely disabled since 2018 and I can’t even leave my apartment.

I sometimes equate having MS (secondary or primary progressive particularly here) as rather like having to be 85 years old in your 40's (or younger!) What to do? Well.... one has to learn how to be an amazing 85 year old - and keep that going until you are 95 years old :) Doable - we become old hands at it, Paul - and, by Jove! We will do that well.

I'm glad you did not delete this because had you done so I would never have seen this. We are so similarly affected by MS, although I do not have headaches to deal with. So, here I am sending you good wishes and understanding also.

I have found Ocrevus has helped Secondary Progressive. Finally!

been there but pot works best

Love this; yea I fear there are few ‘socialist’ about, I do wish there were many more socialist around. I think that few have a grasp of what people with MS deal with daily. Thankfully I use a clear French Press to make coffee, mind you, the kettle is not clear so sometimes it may take longer to boil water which is rather sad as I have some wonderful Kaffa beans from Ethiopia to drink right now, just amazing. I’m very lucky as I married such a kind, smart, sexy women, who is able to deal with my bull and still sticks around. I know here in Canada those with MS suffer due to the lack of money, I fear that it may be far worse for those lacking money or help in the land of the free and home of the brave. I also think that awareness is the key, mind you, awareness would apply to anything. I know when I was told I had MS I stood there is shock, not understanding what were my issues, of course it short time after understanding what I was deal with, all my issues made sense, was not happy, but at least now I had a better understanding of what my life became and what I may have to endure.

I forgot to mention on my part but on the 6 month MRI all leasons have gotten smaller!!

Thank you all for talking about MS. Yes, I have it too. Stay as well as you can.

I am glad to be part of this mission about M.S. Thank you all!

My pleasure! Hope you find it useful.

Thank you so much Paul. I so appreciate you sharing your knowledge with us.

That was beautiful brother. I have had dialogue with thousands of theists through my 45+years of Atheism and to my recollection haven't deconverted anyone yet but that will never stop me from planting seeds and getting them to think. I didn't deconvert overnight, I don't know anyone that did so it's our duty to wake them up! Carry on my Atheist brother, it's good to be good. I love you man.