Wow. Time flies...when you're having fun? Listen to my reflections on my experience, what I've learned, what as helped, and what I could be better about.
Hi Michael. Thanks for the update. So glad you have found was to adapt, be resilient, and become creative to overcome and keep doing the best you can. Keep working on the consistency! They will become habits.
Keep staying strong brother ! I was diagnosed at 49 and went from a normal life to no walking by 50. Im on a great diet and work out daily. Im happening to ms not it to me 💪 Good video my friend 👍
just subscribed when I saw the title of this episode as I am 18 years in to see what we have in common. I echo the concept of "everyone has something". We all have our challenges although for some they have a hangnail they are dealing with and we have MS ;-0 Last year I went to Scotland with a friend, her daughter and another family. At the end my friend confessed she really hadn't realized how much MS affected me and all the accommodations I needed. I am an EDSS 6 so can walk with a stick but can't stand around or run back and forth between restaurants to compare menus, wander about shopping, etc. I preferred the hop-on hop-off busses vs wandering as they did. I had a great time but was troubled by her remark. I guess those with full mobility don't really realize the challenges we face. She booked the hotels and none of them had lifts (elevators) as many don't in Scotland but she didn't think to book on the 1st floor- so someone had to take my carry-on up the stairs for me. I could handle my bag and purse and myself, etc. But- she was surprised when I said I also had to deal with their "somethings". She had motion sickness so we had to do things a certain way. She is also lactose intolerant so couldn't just pick the closest cafe. Her friend was overcoming a B12 deficiency so had her own challenges and was afraid of going over bridges, etc. We all have our "things". In the end they just thought my "thing" needed more accommodation than all of theirs. I guess you figure out your friends that way...
PPMS here for 30 years, only diagnosed 7 years ago. Other then vitamin D haven’t taken any drugs. They never thought my condition was bad enough, still walking but getting really hard. Going for 1st does of Octrevus this week. Little nervous but if it slows this bastard disease down I’ll be happy. Nobody around understands the weight we carry. So many times friends say are you better yet like we have the flue or something. I’m 67 and most of my friends have some sort of health issue. Couple are dealing with Cancer so things could be worse. Anyway hang in there. Know you’re not alone in the battle. 🙏👍
Ocrevus has worked wonders for me. The infusion goes by easy. Best of luck to you. I'm getting an infusion tomorrow, been on Ocrevus for about 4 years. I haven't had a relapse since.
I read that Ocrevus has been around for 10 years so great track record. Wish they put me on it years ago. Covid probably had something to do with that. I’m lucky in that since my early 20’s I’ve been a big audio fan. Hate the word audiophile but must say as my situation worsens my stereo equipment gets more and more use. Use to play more albums but these days that’s too much work so streaming has become more favourable. You can only read and watch so much TV. Anyway, Thanks for the response. 👍👊
So had my 1st 1/2 dose of Ocrevus, seems to have put out the fire in my system, for the last few months my legs were getting really stiff and sore but since the Ocrevus that has just about disappeared, I was praying I’d feel some relief, unfortunately my wife and kids both have a cold & now I have it so fingers crossed I can shake that soon. Like to share any positive news in case a viewer is hesitant on receiving any such treatment. Stay positive 🙏
What positive advice Michael!! Thank You!! Keep Sharing!!!
Hi Michael. Thanks for the update. So glad you have found was to adapt, be resilient, and become creative to overcome and keep doing the best you can. Keep working on the consistency! They will become habits.
Thanks for the update. We're in year 3 of our daughters' treatment (Ocrevus) and your perspective is greatly appreciated.
All the best in her (and your) journey!
Keep staying strong brother ! I was diagnosed at 49 and went from a normal life to no walking by 50. Im on a great diet and work out daily. Im happening to ms not it to me 💪
Good video my friend 👍
Thanks for sharing Michael! I also hit my 20 year mark this year.
just subscribed when I saw the title of this episode as I am 18 years in to see what we have in common. I echo the concept of "everyone has something". We all have our challenges although for some they have a hangnail they are dealing with and we have MS ;-0 Last year I went to Scotland with a friend, her daughter and another family. At the end my friend confessed she really hadn't realized how much MS affected me and all the accommodations I needed. I am an EDSS 6 so can walk with a stick but can't stand around or run back and forth between restaurants to compare menus, wander about shopping, etc. I preferred the hop-on hop-off busses vs wandering as they did. I had a great time but was troubled by her remark. I guess those with full mobility don't really realize the challenges we face. She booked the hotels and none of them had lifts (elevators) as many don't in Scotland but she didn't think to book on the 1st floor- so someone had to take my carry-on up the stairs for me. I could handle my bag and purse and myself, etc.
But- she was surprised when I said I also had to deal with their "somethings". She had motion sickness so we had to do things a certain way. She is also lactose intolerant so couldn't just pick the closest cafe. Her friend was overcoming a B12 deficiency so had her own challenges and was afraid of going over bridges, etc. We all have our "things". In the end they just thought my "thing" needed more accommodation than all of theirs. I guess you figure out your friends that way...
thank you for sharing these encouraging words ❤
PPMS here for 30 years, only diagnosed 7 years ago.
Other then vitamin D haven’t taken any drugs. They never thought my condition was bad enough, still walking but getting really hard. Going for 1st does of Octrevus this week. Little nervous but if it slows this bastard disease down I’ll be happy. Nobody around understands the weight we carry. So many times friends say are you better yet like we have the flue or something. I’m 67 and most of my friends have some sort of health issue.
Couple are dealing with Cancer so things could be worse. Anyway hang in there. Know you’re not alone in the battle. 🙏👍
Ocrevus has worked wonders for me. The infusion goes by easy. Best of luck to you. I'm getting an infusion tomorrow, been on Ocrevus for about 4 years. I haven't had a relapse since.
I read that Ocrevus has been around for 10 years so great track record. Wish they put me on it years ago. Covid probably had something to do with that.
I’m lucky in that since my early 20’s I’ve been a big audio fan. Hate the word audiophile but must say as my situation worsens my stereo equipment gets more and more use. Use to play more albums but these days that’s too much work so streaming has become more favourable. You can only read and watch so much TV.
Anyway, Thanks for the response. 👍👊
@1999zrx1100 music is life for me also. Music can transport me away no matter what is happening. I get to listen to music in the MRI tube now!
I’ve done my time in that thing as well. Can’t do music in there. Take Care. 🤓
So had my 1st 1/2 dose of Ocrevus, seems to have put out the fire in my system, for the last few months my legs were getting really stiff and sore but since the Ocrevus that has just about disappeared, I was praying I’d feel some relief, unfortunately my wife and kids both have a cold & now I have it so fingers crossed I can shake that soon. Like to share any positive news in case a viewer is hesitant on receiving any such treatment. Stay positive 🙏
59 ppms. 9 months post hsct puebla hsct still worsening it seems. spirits a re good tho. writing music. glad our kids are not young