Originally posted by MS TOO
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CHANGES AT MSWORLD - MSWORLD'S CLOSURE
We began with a mission and purpose to help others living with MS.
We were excited to get going!
And hit a few bumps along the way…
However, in all seriousness, we remain grateful for our amazing volunteers, members & all who have made MSWorld a valuable resource for all!
July 10, 2024, we celebrated the goodness of these past 28 years. With a heavy heart, we will be ending our services.
We need a financial miracle to keep going forward.
We thank all for your support.
MSWorld's website will close on October 16, 2024.
“I personally want to wish all of you the guidance to find this type of support, as so many do here. Also, my prayers and love extends beyond my understanding. It has been a pleasure to steward this journey.”
God Bless you, Kathleen
Kathleen Wilson
Founding President
❤️
we leave knowing that
we did our best and
stayed true to our mission and purpose.
Please visit our General Questions and Answers forum to read more.
We were excited to get going!
And hit a few bumps along the way…
However, in all seriousness, we remain grateful for our amazing volunteers, members & all who have made MSWorld a valuable resource for all!
July 10, 2024, we celebrated the goodness of these past 28 years. With a heavy heart, we will be ending our services.
We need a financial miracle to keep going forward.
We thank all for your support.
MSWorld's website will close on October 16, 2024.
“I personally want to wish all of you the guidance to find this type of support, as so many do here. Also, my prayers and love extends beyond my understanding. It has been a pleasure to steward this journey.”
God Bless you, Kathleen
Kathleen Wilson
Founding President
❤️
we leave knowing that
we did our best and
stayed true to our mission and purpose.
Please visit our General Questions and Answers forum to read more.
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Coronavirus COVID-19
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~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
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Four new confirmed cases in my state just announced an hour ago. Spike from 2 to 16 in three days. Now state ban in effect for next 3 weeks on gatherings over 250 people.
Already heard from my church yesterday the building will be closed for the next 30 days. Sunday services on-line.
Originally posted by KimbaBecause of privacy and HIPAA laws, not much needs to be revealed about their location, other than except county they tested positive in. Location of treatment does not have to be disclosed. Understand, but leaves us of wondering how close they've been to us.
My husband stopped at Target to pick up something for his mom earlier this afternoon. Said busy like Christmas (normally not busy at all that time weekdays) and a lot of people were wearing facemasks and medical gloves. Shopping carts loaded up, shelves bare. Was shocked to see vitamin isle bare, too.
Normal crowd of elderly there, with just a few items. The most vulnerable of populations in crowded store. Thought some looked surprised, like what the heck is going on!
Grocery stores now warning not to stockpile.
My son, who is a TA at his university, said they've been scrambling the past two days to transition to on-line teaching.
He wonders how that will even work out, there's a reason the classes he teaches aren't offered on-line. As it is, the bell curve for passing already lowered.
Husband received notification to work from home.
Originally posted by loopeyAs I said previously I live in Italy. I was going about my regular activities cautiously. In my neighborhood in Rome people are following the rules for the countries lock down. Everything is closed except some grocery stores and pharmacies. Our cat was in the hospital for 2 weeks due to kidney failure but my husband was permitted to get her yesterday. I am grateful to see people taking this seriously. Only a few people at a time allowed in the stores and they have the area where you line up to pay marked with tape so people stay a meter apart.
My husband and I are OK. I hope everyone there stays well.
Yes, also grateful this is being taken seriously. Don't want to become another hot spot for this virus! Interesting what you said with the stores there, too.
Originally posted by MS TOOI lived in Italy for almost 6 years and my daughter lives in northern Italy now. I believe the reason this situation is worse in Italy is because of several factors about how they live. There are typically several generations and multiple families living in close proximity and they have large family meals. They typically go to town to shop and have a coffee and visit daily or several times a day and when the meet, the greeting is a kiss on both cheeks. Add this to a large aging population (very low birth rate fewer younger people by %) and you have the perfect storm for spreading this virus.
Originally posted by MS TOOMy daughter is struggling to survive right now, but at least the local pizzaria is delivering! Unfortunately they are reporting that the socialized medical system in Italy is struggling with doctors having to decide which patients receive care and which are going to be left to die. Scarey to think about!
Scary to hear doctors are having to decide who receives medical care!
Best wishes to everyone!Kimba
“When you change the way you look at things, the things you look at change.” ― Max Planck
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Just got this email from Swedish Neuroscience Dept in Seattle regarding DMT's amid the Covid19 outbreak. It gives recommendations to continue each DMT's listed.
"Having multiple sclerosis would not increase the risk of coronavirus disease (COVID19) in most patients. People with MS generally have more robust immune systems, so robust that the immune system attacks their nervous system, causing the MS. The disease, MS, does not cause suppression of the immune system.Some people with disabilities may be at increased risk of complications of COVID19. This includes people with weakness of their breathing muscles, or decreased ability to cough. Very few people with MS are affected in this way.In general, people on disease-modifying therapies should continue these therapies. Specific information about each medication follows:"
https://s3-us-west-2.amazonaws.com/i...nd_COVID19.pdf1st sx '89 Dx '99 w/RRMS - SP since 2010
Administrator Message Boards/Moderator
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Originally posted by Seasha View PostJust got this email from Swedish Neuroscience Dept in Seattle regarding DMT's amid the Covid19 outbreak. It gives recommendations to continue each DMT's listed.
"Having multiple sclerosis would not increase the risk of coronavirus disease (COVID19) in most patients. People with MS generally have more robust immune systems, so robust that the immune system attacks their nervous system, causing the MS. The disease, MS, does not cause suppression of the immune system.Some people with disabilities may be at increased risk of complications of COVID19. This includes people with weakness of their breathing muscles, or decreased ability to cough. Very few people with MS are affected in this way.In general, people on disease-modifying therapies should continue these therapies. Specific information about each medication follows:"
https://s3-us-west-2.amazonaws.com/i...nd_COVID19.pdfIt was one agains't 2.5million toughest one we ever fought.
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Originally posted by oceanpride View PostThanks Seaha. I have been wondering about this. This report makes sense to me.
Of course when in doubt, the best plan is to talk with your neuro regarding your individual situation!1st sx '89 Dx '99 w/RRMS - SP since 2010
Administrator Message Boards/Moderator
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Late yesterday afternoon, our governor shut down all the schools for 2 weeks.
My daughter works in several public buildings in a neighboring county, and because they've also shut down, her work hours have been cut to 10 per week. I'm expecting her and her roommate to show up on my doorstep one of these days when they can no longer pay their bills.
We're not seeing the violence that's been publicized from big cities, but when my son went to Sam's Club yesterday for a prescription, he said he's never seen that store so busy. Heard from a friend who works at Walmart, and he said they're getting Christmas crowds, which is bad.
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The most informative article on COVID-19 and response that I have seen...
https://medium.com/@tomaspueyo/coron...e-f4d3d9cd99ca
Coronavirus... What Should You Do and When?
Tomas Pueyo
Updated on 3/13/2020.
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Originally posted by Seasha View PostJust got this email from Swedish Neuroscience Dept in Seattle regarding DMT's amid the Covid19 outbreak. It gives recommendations to continue each DMT's listed.
"Having multiple sclerosis would not increase the risk of coronavirus disease (COVID19) in most patients. People with MS generally have more robust immune systems, so robust that the immune system attacks their nervous system, causing the MS. The disease, MS, does not cause suppression of the immune system.Some people with disabilities may be at increased risk of complications of COVID19. This includes people with weakness of their breathing muscles, or decreased ability to cough. Very few people with MS are affected in this way.In general, people on disease-modifying therapies should continue these therapies. Specific information about each medication follows:"
https://s3-us-west-2.amazonaws.com/i...nd_COVID19.pdf
A non-authored (as far as I can see) pdf arriving in your email needs a bit more verification, if you don't mind. There was not even a letterhead on this pdf. Please do not think I mean anything disrespectful. I have more than a ton of esteem for you, Seasha! I would never question your credibility.
However, I need more verification from the organization who may or may not have published this as an organization. Just my humble perspective.
Thank you so much!
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Sorry Myoak - it's been a busy day here. I have printed out the entire email I received on March 13th. Because I copied and pasted, there are no direct links, but I have underlined the part below which gave the pdf file in question. Take care!
Good afternoon,
I'm sure you all are following the news closely. As the COVID-19 situation in Washington and the US progresses, we have cancelled all MS Center Wellness Programs (including support groups and open gym) until further notice. We have done so in an abundance of caution as our patient and community's safety is our number one priority.
We are so sorry for the inconvenience. If you currently receive weekly or monthly reminders for our programs, we will be sending some online resources for each specific program in the coming days.
Click here for remote and online support groups for people living with MS.
Please find more information and alerts below
For our patients with upcoming appointments: effective Monday, the Jefferson Tower entrance will be closed until further notice. Patients can enter by the roundabout at the main Cherry Hill entrance OR go through the sky bridge from the 16th Ave parking garage. There will be no valet services offered at the Jefferson Tower until further notice. Patients can use the valet at the main Cherry Hill entrance, but unfortunately we cannot offer discount stickers for that valet.
If taking Access or Lyft/Uber, enter this address: 500 17th Ave, Seattle, WA 98122
Visitors at Swedish: Swedish has greatly limited our visitor policy. For patients coming to an appointment at the MS Center, only one guest/caregiver over the age of 18 is permitted. No visitors/guests under the age of 18. Patients under the age of 18 can have an advocate, parent, or guardian with them. Underage siblings are not permitted. All visitors must be free of fever OR acute severe cough OR shortness of breath. Except for transit to and from, visitors are to stay in the patient's room for the duration of their visit.
MS DMTs and COVID-19: We know there are a lot of questions about MS DMTs and this virus. Our MS Center providers have put together a document that we hope will answer some of your questions and concerns. Please click here to view: MS DMTs and COVID-19.
The MS Society has also put together some resources about COVID-19 & MS
As a reminder, symptoms can include fever, cough and difficulty breathing (shortness of breath). If you develop symptoms or have been in close contact with a person known to have COVID-19, please contact your primary care provider immediately.
Thank you,
Erin Carper
Program Coordinator
MS Center at Swedish
erin.carper@swedish.org
206.991.2099 (Due to social distancing and remote work recommendations, I may be working remotely in the coming weeks and will have limited access to my office phone - please email me if you have any questions or need more information). If you need to reschedule an appointment, please call (206) 320 -2200.1st sx '89 Dx '99 w/RRMS - SP since 2010
Administrator Message Boards/Moderator
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Hello Seasha,
I know you are working diligently on my request which I hated to make with Seattle in the middle of a crisis. However, a London team of highly respected MS neurologists has a member who has commented on the material you posted from the Swedish Neuroscience Institute in Seattle.
The link to his blog post is below for those interested. Like me, he could not find the info at their website, and was cautious for that reason, however, it likely is legit and demonstrates varying opinions among MS neurologists in various parts of the globe.
Nothing is ever clear and simple dealing with MS and MS meds. Each MSer should have guidance from their personal treating neuro, as always.
Thank you for the post, Seasha, you are a gem, we all think so and appreciate you so very much!
https://multiple-sclerosis-research....th-a-us-twist/
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Thank you, Myoak! - bottom line from this report is "In other words, personalised decision-making and a pragmatic approach are required. What is decided for one patient may not necessarily be right for another patient"
And there is this from MS News Today - https://multiplesclerosisnewstoday.c...dmt-guidelines - There are different guidelines from different worldwide locations.
This is why I replied in another postOf course when in doubt, the best plan is to talk with your neuro regarding your individual situation!1st sx '89 Dx '99 w/RRMS - SP since 2010
Administrator Message Boards/Moderator
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Originally posted by Myoak View PostThe most informative article on COVID-19 and response that I have seen...
https://medium.com/@tomaspueyo/coron...e-f4d3d9cd99ca
Coronavirus... What Should You Do and When?
Tomas Pueyo
Updated on 3/13/2020.
This article reveals some startling numbers at how fast this virus spreads exponentially.
I didn't realize how quickly Wuhan went into lockdown, after an increase of 100 cases January 22, then 400 cases January 23.
Washington State is the US’s Wuhan.The number of cases there is growing exponentially. It’s currently at 140." If correct information, assume this was from 3/11.
March 14, the number of confirmed cases was 642 and 40 deaths.
Sunday, March 15, the Washington State Department of Health reported 769 confirmed coronavirus cases and 42 deaths.
"This is an issue: You only know the official cases, not the true ones."
However, those numbers were distorted because of discrepancies between CDC cases and cases reported by state and local public health officials. It is noted the data reported by states should be considered the most up to date. https://www.cdc.gov/coronavirus/2019...ses-in-us.html
The United States has 3,244 confirmed cases of the coronavirus today, and the death toll climbed to at least 66, with 27 of the deaths associated with the Life Care Center in Kirkland, Washington.
With the number of cases we see today in countries like the US, Spain, France, Iran, Germany, Japan, Netherlands, Denmark, Sweden or Switzerland, Wuhan was already in lockdown.
... when Wuhan thought it had 444 cases, it had 27 times more. If France thinks it has 1,400 cases, it might well have tens of thousands
Countries that act fast can reduce the number of deaths by a factor of ten. And that’s just counting the fatality rate. Acting fast also drastically reduces the cases, making this even more of a no-brainer
Disfunction at some of the 13 U.S. airports undergoing enhanced screening measures of travelers arriving from Europe was reported earlier today as passengers returned from Europe. Photos of massive crowds and winding lines from earlier today have been posted on social media. Disturbing.
Each state government has different policies in response to COVID-19. New York Governor Andrew M. Cuomo is demanding a nationalized response to avoid "the patchwork quilt of policies." I noticed Wahington state just announced policies today that were announced in Michigan days ago. Does make sense to me there should be a better plan, JMO ...
I hope I'm wrong, but am very concerned we haven't acted fast or wisely enough.
Prayers for us all.Kimba
“When you change the way you look at things, the things you look at change.” ― Max Planck
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Originally posted by Kimba22 View PostThanks for the link, Myoak.
This article reveals some startling numbers at how fast this virus spreads exponentially.
I didn't realize how quickly Wuhan went into lockdown, after an increase of 100 cases January 22, then 400 cases January 23...
I hope I'm wrong, but am very concerned we haven't acted fast or wisely enough.
Prayers for us all.
Kimba, I agree with Dr. Fauci that we need to look ahead, not behind, in facing this crisis but looking behind may help explain what does lie ahead for us as a society.
Here is my take... I appreciate the professionals are all in full court press mode scrambling to mitigate this crisis, however, we did not act swiftly, nor wisely as China did. Therefore, IMO, the crisis here will be much worse than in China or in South Korea.
The first huge mistake was not adopting the WHO test for COVID-19 but trying to develop our own, which was done quickly, however, it did not work well and had to be redone. So, in spite of the bluster about how many tests were available, the truth is we were testing precious few as I pointed out repeatedly in this thread. Lack of testing meant we didn't know who was infected and therefore, did not know who to quarantine.
China, on the other hand, quarantined entire cities immediately upon learning cases went from 100 to 400 in one day in Wuhan. They tested early and responded forcefully. Also, South Korea warned very early on that the nations of the world needed to wake up because in their words... "every nation will have to deal with this virus just as we are doing." How I wish that we had heeded their chastisement of our happy talk.
We lost precious time by sugar-coating and downplaying the threat from this virus.
Assuming we actually begin widespread testing and FINALLY begin getting results we will begin learning who is infected and either treat or isolate them.
Unfortunately, much time has passed and the virus has become very widespread, IMO. We shall soon discover the extent of that spread, assuming we get extensive testing results this week.
Likely, IMO, we will begin experiencing massive quarantines all over the country. Americans are not Chinese, I do not believe we will follow quarantines as well as China has. And, with more cases of infection before large quarantines become the norm, as some predict, the US will have a tougher time than China; much tougher, IMO.
Yes, hospitals will be overwhelmed, IMO. Temporary facilities will be required to house and treat the infected, IMO. Patients will be prioritized for ventilators and there will not be enough for the eldest, IMO. Kidding ourselves is not an effective strategy in a pandemic. BS is just that.
But let's purpose to look forward as Dr Fauci suggests and do the best we can. Things will get worse before they get better but please look forward far enough to see that things do and will get better. This is an ugly situation presently but it too will pass.
Please be wise and follow the guidelines being provided and we will get through this.
God bless us all.
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It's here - covid-19 now in my town. Someone told me it is someone two blocks away. He and his family are self quarantined. Eerily quiet around here
My husband works on the commuter trains. Peak hour this morning he had 82 passengers on one train and 112 on the other. That is on an 8 car train.Many wearing rubber gloves and masks. Like other cities, probably switching to a special schedule.
Right now, he comes home on break, as he works a split shift. If they switch schedule, his break will be in the city, which means the crew room. He really doesn't want that, as you are then in a room with lots of people. Worried what he might bring home to me. He was retiring 7/1, but is eligible now. So he may go earlier than planned.
Really annoyed too. They closed county and state parks. I can understand closing the centers and restrooms, but the hiking trails? Have to find a new walk routine. A few people went around the barricades, but I honored them.
Stay healthy all!Kathy
DX 01/06, currently on Tysabri
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