Activity

mohler-john
mohler-john created discussion Welcome aboard!
4 days ago
Hello to you who've joined us this week and wishing you a happy Easter. If you have questions about MS there are some great materials online at https://www.nationalmssociety.org/Resources-Support/Library-Education-Programs/Brochures Also you can call the MS Navigators about any MS-related issues, and they are helpful! 1-800-344-4867 or https://www.nationalmssociety.org/Helpful-Links/Contact-Us
solangeclell
solangeclell joined the group
10 days ago
solangeclell

solangeclell

New York, NY
  • Gender Female
  • Age 55
  • Relationship Single
  • Connection to MS I have MS
wendyabradley
wendyabradley joined the group
12 days ago
wendyabradley

wendyabradley

Lago Vista, TX
  • Gender Female
  • Age 65
  • Relationship Married
  • Connection to MS I have MS
srob55
srob55 joined the group
14 days ago
srob55

srob55

, AR
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS
newmommie2003
newmommie2003 created discussion Trip is just in a couple of days
14 days ago
Hi everyone,On Sunday I leave on my trip to Texas. I am excited but a little stressed. I had originally booked nonstop flights. But recently, I was told that the flight down now has a flight change. We are stopping in Chicago and have to change planes.I am still flying Southwest and I am still happy with how they handle people with disabilities. They offer a lot of assistance if needed.My parents have made some plans and reservations for things we are going to do and I had to tell them what questions to ask. I am really excited to see my parents and get to see things we haven’t before. I am hopeful that it will be a wonderful time and that even with my wheelchair, I will be able to enjoy all the attractions just like anyone else.We are going to NASA and Seaworld. We will be staying overnight at a hotel whenwe go to NASA.I will try and keep you informed on how things go.I would love to hear about vacations that you have taken and how things went. Were things accessible for your needs? How did you handle it?I would also like to hear about your booking? What questions do you ask? What struggles have occurred? What are some easy moments, companies that are accessible and knowi?
newmommie2003
newmommie2003 replied to discussion RE:It's on the tip of my tongue… again
14 days ago
I have that happen more frequently than I would like. It is frustrating sometimes. My friends and family know this about me, but when it happens in front of a stranger, it is awkward.But I just roll with the punches and keep moving on. I figure, I am never going to see those people again, and in the big scheme of things, it is 1 moment in time. At home I write things down. That way Even if I forget, I will have a reminder.
newmommie2003
newmommie2003 replied to discussion RE:How many do you know about? Find MS programs and events in your area
14 days ago
Hi there,I love that calendar. I just participated in the local Walk MS this past weekend. I am hoping to be able to volunteer at other events. It is very rewarding to either walk or volunteer. It is a great experience and also a great placd to meet other people living with MS.Thanks for sharing.Has anyone participated in any events in the past or plan on any in the future? I would love to hear about any experiences. 
mohler-john
mohler-john created discussion It's on the tip of my tongue… again
15 days ago
Kidding around with physical therapists this morning, interviewing somebody for a story this afternoon – both times I felt a beat behind and trouble finding the right words. Is it no big deal, or something for real? My neuro will have something to say about it, but in the meantime there's this:https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Managing-Cognitive-Problems_1.pdf
Carrie42016
Carrie42016 joined the group
17 days ago
Carrie42016

Carrie42016

, CA
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS
KeepItMoving
KeepItMoving joined the group
24 days ago
KeepItMoving

KeepItMoving

Roseville, CA
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS
golgotha
golgotha created discussion FDA approves siponimod for SPMS
28 days ago
Since I haven't read this anywhere else on this site, I guessed it would be of interest to this group (my apologies if mis-filed):Just today the FDA approved siponimod for SPMS. Some info: Novartis' press release (Oct. 2018) about trials, Drugs.com note about the approval of Mayzent (siponimod), the Canadian MS society's summary about siponimod.
PeteS
PeteS joined the group
1 month ago
PeteS

PeteS

Saco, ME
  • Gender Male
  • Age 55
  • Relationship Married
  • Connection to MS
mohler-john
mohler-john replied to discussion RE:Travelling with challenges
1 month ago
Please sign this petition to set hotel standards for bed height and clearance under the bed (for a patient lift). Makes traveling for us possible! http://chng.it/z5gMkwZzxS
newmommie2003
newmommie2003 replied to discussion RE:Travelling with challenges
1 month ago
Hi there,Welcome to the group. I totally agree about hotels and motels. I posted before that wheelchair accessible and handicapped accessible are 2 very different things. So it is extremely important to ask many questions. I have gotten to motels before and had issues. I was new at travelling with a chair. Now I spend a lot of time planning anead of time.I was very lucky and cound a place up in Maine that has a wheelchair accessible cottage. And even has a lift for the pool. It takes a long time sometimes to do the research, but well worth it. You will have a better time and with less issues.
newmommie2003
newmommie2003 replied to discussion RE:Travelling with challenges
1 month ago
Hi there,I am in a wheelchair full time when I am outside my home. I agree that the world is not always designed for wheels. But the more we go out into the world, and show people that we are people too and want and deserve to have the same experiences as people who walk, the more people will accept us and change how things are done. We just need to educate some people on what works for us and what doesn’t. Things in my community have started to change. It can be slow, but it does happen.I absolutely agree about Disney World. When we flew there, we flew on Jetblue, and they were ABSOLUTELY WONDERFUL. Southwest does a good job too. Finding hotels or motels that are wheelchair accessible is very difficult. And I found that you need to specifically say WHEELCHAIR accessible, because that is very different from handicapped. You have to bee specific as to what your needs are.
mohler-john
mohler-john replied to discussion RE:Is Anybody Taking Ocrevus?
1 month ago
Hi, here are a bunch of conversations between Ocrevus users. https://www.reddit.com/search?q=ocrevus&restrict_sr=&include_over_18=on&sort=relevance&t=all
alicehoo10
alicehoo10 replied to discussion RE:Is Anybody Taking Ocrevus?
1 month ago
My husband had his second infusion of Ocrevus Feb 9th.  Neither time did he have any reactions to It whatsoever.  They give you meds before the infusion just in case to counteract any problems you might have like nausea.   The infusion lowers your resistance so he had to be careful being around people for a few days. That was the worst of it. I havent seen any improvemt yet but it may take a while or possibly he could have been worse without it. It’s hard to tell right now. His first infusion is done over two weeks.  First infusion is approximately 3 hours then two weeks later they do the second half of the infusion again for approximately 3 hours. Medicare and our supplemental have picked up the cost of the Ocrevus treatment which is wonderful. We go back in August for his next sessionall in all I’d say it was a good experience considering everything and worth continuing for now. John was diagnosed in 2015 with PPMS and has continued to decline since.  I still pray this Ocrevus will slow it down 
joialt
joialt replied to discussion RE:Is Anybody Taking Ocrevus?
1 month ago
Also wondering about this, especially for over 60. What exactly is the efficacy of taking Ocrevus? The statistics for improvement are low and vague: 50/50 or less "better" balance, walking? What does this mean? The trials were for ages 18-55; I am 64, ten years of PPMS. The possible side effects of nausea, pain, and increased infections are not plausible to tolerate in exchange for ... well, in exchange for what exactly?