MS Walk in Wilmington, DE, on April 14th

The Wheeler's Wobblers MS Walk Team is counting down the days until our Wilmington MS Walk: 5 weeks and 2 days to go until the big wobble at the Wilmington Riverfront, Frawley Stadium. We have achieved 13% of our fundraising goal, and have some great corporate sponsors.  We have 22 team members signed up so far.  You can join our team, make a donation, or watch our progress at:

http://main.nationalmssociety.org/goto/wheelers-wobblers

Raise $25 and get a lunch ticket for hot dogs, chips, and ball park eats. You might even get your picture taken with Mr. Celery or Rocky from the Blue Rocks. Now that rocks (or should I say "wobbles"?).

I am getting excited about this event.  It's always fun and I need more fun in my life. 

March is MS Awareness Month!

Hello! Remember me? 

Okay, it's been a while since I've posted a blog or hosted a chat, but I'm coming out of retirement because March is MS Awareness Month (in the US). 

For me, I'm aware of MS every day, but just in case you weren't aware, MS still sucks.  But helpful people in my community as well as support organizations like the National MS Society, the Multiple Sclerosis Association of America, and the MS Foundation help get me through the day.


Thanks to each of you for your on-going support!

Patient Who Died on Gilenya - the rest of the story...

As suspected, there was more to the story of the patient who died within 24 hours of taking Gilenya.  Julie Stachowiak, at MS.About.com writes that the patient was on medications which affect the heart.  You can read Julie's explanation of what happend at "Death of Patient on Gilenya Should Not Cause Panic" at:

http://ms.about.com/b/2011/12/23/death-of-patient-on-gilenya-should-not-cause-panic.htm?nl=1

In the meantime, it's been over two months for me and I'm still doing okay.  People ask me if it's working and I have to respond, "I don't know."  I don't feel different, which is probably a good thing.  I didn't feel any different when I was on Copaxone, either. Time will tell.

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Happy Holidays!

I wish everyone a happy holiday season. You aren't seeing much of me right now because the sensory overload of seasonal parties and gatherings drains everything out of me.  Of course, I feel terrible every time I decline to attend anything (I seem to do a good job of beating myself up).  But the price to attend events is just too high, and the people who really matter will understand and still be there.

That's why I really appreciated this National MS Society Blog post titled "Why are parties hard for some people with MS?"  It's always comforting to read something that corroborates my experience.

Enjoy the season! 
PS - If you are reading this on Facebook and want to leave a comment, please go to shortinthcord.blogspot.com I won't see the Facebook comments. Thanks!

FDA MedWatch Alert for Gilenya

Just by chance, I opened the FDA MedWatch alerts page for prescription drug recalls or problems (remember the alcohol pad recall?), when what to my wondering eyes should appear but the word "Gilenya" and my gut filled with fear.  I'm patiently awaiting the rest of the story...


This was issued Dec 20 2011.

 The FDA has received a report of a patient with multiple sclerosis (MS) who died within 24 hours of taking the first dose of Gilenya (fingolimod). At this time, FDA cannot conclude whether the drug resulted in the patient's death. FDA is continuing to evaluate the case and will communicate any new information that results from this investigation.

I'm not worried because I've been on Gilenya for two months, but I will be watching this story.

Thanks to the DE MS Society, and Bianca

Yesterday, I received a "Friends of the MS Society" award at the Delaware NMSS Bernice Schacter Research Symposium and Annual Conference for my contributions to the Delaware Chapter this past year.

I wish I had a copy of the write-up because it almost brought me to tears. But I think it included efforts to increase awareness (a nice News Journal article and a TV interview with Brian Taff (6ABC) and Holly Maddams (DE NMSS who had to remind me to breathe while the camera was rolling), raise money through the Wheeler's Wobblers walk team (third highest fundraising team in the state this year), and support other people with MS through the Delaware Area on-line chat room. Okay, I was busy this year.

I was so honored to receive this, and especially honored that Bianca Fraser-Johnson both nominated me and presented it to me. Bianca is a woman that I admire for her enthusiasm and contributions to the Delaware Chapter. She is a true leader with a wonderful personality.

After the presentations, another award recipient, my Delaware House Representative Earl Jacques, approached me because he wants to join the Wheeler's Wobblers team next year.  Looks like next year might be busy, too.

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Good News - First Dose was a Non-Event

Yipee - I'm pleased to report that my Gilenya First Dose Observation was a "non-event," which means that my blood pressure and pulse rate stayed normal for my six hours after I swallowed the first pill. No dizziness, no eye problems, no heart problems.  YES, I am SO relieved.  


Thanks to all of you for your supportive thoughts today. You were all right there with me, and I'm grateful.


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Is This My Gethsemane?

I am about to make a big change in my MS therapy. 

Tomorrow, I am starting a medication (Gilenya - in case you haven't been following this thread) that will free me from daily injections.  This medication supposedly will keep more of my lymphocytes in the lymph nodes instead of out in my blood stream where they can wreak havoc with my brain, spinal cord, or optic nerve.  It is supposed to decrease the number of flairs and decrease disability.

I have less than twelve hours before I swallow my first pill and I am having doubts. Now, this is a normal reaction whenever I make a big decision (like when I buy a new car or shoes). 

Too many variables: will the drug work? will I have any adverse reaction? will I lose any of my superpowers that an immune system in overdrive gives me?  It comforts me that all the great people throughout history - like Spiderman and Superman - have had their moments of doubt, too.

It will all be okay - my Spidey sense tells me so.

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End of the Road is in Sight!

Update on my Long Road to Gilenya story - I think the end of my road to Gilenya is near.

I am scheduled for my First Dose Observation on Wednesday 26 October in my neuro's waiting room.  I'm now putting together my basket of books, magazines, puzzles, DVDs, and podcasts to keep me busy for six hours.  Oh, I almost forgot - I have to remember to take my pill with me!  LOL!

Stay tuned...

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A Right Turn in the Road

Gilenya update: There has been another turn in my road to Gilenya.  But this is a RIGHT turn.

Last week, I called my neuro's office and informed them that going to Concentra for my First Dose Observation (FDO) would cost me $500 out of pocket (oh, they did not know). My second option, to drive 1.5 hours each way to get an FDO for free, was not acceptable.  I asked them to find a third option, giving them some suggestions (I know what you are thinking but I was actually very nice).  On Friday, I got a call telling me that they had a third option: to be observed in their waiting room (no charge).  I'm accepting the third option.

So now, we have to track down the status of the medication (not sure if it was shipped yet), and change the delivery address. I suspect this will be resolved today.  Then I can schedule a new FDO date.  Unless something else comes up...

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Another Bump in the Road

For those of you who are following my medication story, my first dose of Gilenya has been delayed (now scheduled for 20 Oct).  The prescription was sent to the wrong insurance carrier, so we pushed the First Dose Observation out a few days.  Stay tuned...

The Long and Winding Road... to Gilenya

Last month, I decided to change my direction for treating my MS, and chose to start taking Gilenya (the first oral medication FDA approved for the treatment of MS).  It's a pill.  It's just a pill.  But you can't leave the doctor's office with a prescription slip and head to you pharmacy to have it filled.  You must travel the long and winding road...

First, I filled out a Service Request Form while still at the doctor's office that they sent to Novartis to get me registered.

THEN I got blood drawn to check my liver, white blood count, and other mystery things.

THEN I had to get an EKG from my primary care doctor to make sure my heart was okay (Gilenya can cause a drop in heart rate or spike in blood pressure). 

THEN I had to get an eye exam from my opthamologist (Gilenya can cause macular edema, swelling behind the eye that can affect vision). 

THEN I had to wait five days after the eye exam before I could call to get scheduled to take my first pill.  Yes, I had to get scheduled to take the first pill.  The first dose has to be given in a medical facility that will monitor my heart rate for six hours after I swallow the first magic pill. 

AND, then I had to decide WHERE to have my First Dose Observation (FDO).  If I get the FDO at a Concentra medical facility nearby, then I have to pay $500 out of pocket because Medicare does not cover it (I think it's because Novartis contracted with Concentra to help them monitor their own drug). But if I travel over 80 miles south, I can have the FDO for free at a facility south of Baltimore that is not a Concentra site. That's a long drive during heavy rush hour traffic both ways for me (yes, I could get a ride).  I do encourage Novartis to get this resolved.  There have to be more choices.

I am now scheduled for my FDO on 18 Oct.  I just hope Gilenya is worth the journey.

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Does a Sitting Bird Still Hum?

Landing

A female hummingbird has claimed sole ownership of our hummingbird feeder. She is a militaristic guardian of her territory, attacking all other hummers. She first drinks deeply from the nectar, then lands on the hook and just sits for long stretches at a time, always watching the skies for intruders to attack.  Some of her "dog fights" are quite vicious, actually slamming into the other bird and locking onto her victim and not letting go until they almost hit the ground.  I think she should run for Congress.

On Guard

Don't even think about approaching me!

Sticking out her tongue... Pthhh!

Balanced Imbalance

Today is the autumnal equinox, one of the two days of the year when the amount of daylight and darkness are equal, in balance.  It’s a day when I reflect on balance in my life.

Alas, I am going through a lot of changes right now.  As you’ve read in my previous blog posts, I’m focusing a lot of attention on my MS treatment changes due to my changing symptoms and functionality. I’m also experiencing changes at my church, where a new interim minister is challenging the congregation to try new things, so there is a bit of disruption in services while we experiment with changes.

So I have imbalance in two important parts of my life.   I have achieved balance in imbalance!

Welcome autumn!  

Time to Change My Direction

For years, I have been quite happy with my MS treatment plan. I credit Copaxone with having slowed the progress of the disease with almost no side effects. I have been happy with my neurologist. I have felt that I was doing everything I could do to help myself.

But lately, things have changed. My symptoms have increased, and become much more troublesome. So I've seen a new neurologist, an MS specialist, and decided to reassess my treatment plan. With decreasing functionality and the increasing lesions appearing on my MRI, I agreed that it is time to switch from an immuno- modulating drug to immuno- suppressant drug (DISCLAIMER: I’m not sure if that terminology is accurate).

For those of you who know me, you know that I am conservative when it comes to medications. I never jump on the bandwagon as soon as a new medication or treatment option becomes available, and don’t want a drug that will kill me in the process ("the cure will kill you?"). So it may come as a surprise to you to learn that I am being screened for the new oral medication Gilenya, which was approved by the FDA just last September.

Before I can take Gilenya, I have to have blood drawn, an EKG, and an eye exam because Gilenya has a list of yukky potential side effects, but chances are slim for all of them. If the results of the tests are fine, then I will work with Novartis (drug company) to schedule a first dose observation (FDO) event at a medical facility (heart center). Gilenya can cause a drop in heart rate, so all patients are observed for six hours after swallowing their first pill. Novartis has already assigned a "navigator" to help me verify insurance coverage – more on that later…

I will confess that I am a little anxious about starting a new medication after having been on Copaxone for almost 12 years, especially one that has potentially dangerous side effects. Of course, the odds of having these bad things happen are small, so with trepidation I have decided that the risk is worth it if it will make me feel better down the road, and reduce the scars in my brain.


It will take a few more weeks to get everything checked out before I can begin Gilenya, and I look forward to keeping you informed about my experience.

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Starting Over - Again

Back in 2007, due to intractable fatigue, I made the difficult decision to go on disability. I stopped working. As a Type A personality, this was a dramatic change for me, something I had difficulty dealing with. What was I going to do all day? What reason did I have to get up in the morning?

It took about a year and some life coaching to adjust to being a person on disability with no occupation. Eventually, I filled my time volunteering at church and with the multiple sclerosis society. I blogged, I wrote, I set up a Delaware area MS chat room, I started the Wheeler’s Wobblers MS walk fundraising team.


I answered the question “so what do you do all day?” by saying “I'm a support group leader, writer, fundraiser, and church volunteer.” Gosh, that all sounded very important. I began to feel relevant and like a useful member of society. I tried to pretend that I did not have a disabling illness.

All was going well until…


My fatigue got even worse this year. My pins and needles feelings and uncomfortable sensations in my hands and feet became really bad. Again I was faced with the decision to stop “working.” I decided that I had to resign from most volunteer jobs.

So now I'm back at the beginning. I am a person with no "occupation." I really took on too much this year, and I'm paying for it with increased physical disability.

So now what am I going to do all day? What reason will I have to get out of bed each day?  What is important to me? What deserves my attention and energy? How am I going to recover this time?

Stay tuned...

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Update on Delaware Area MS Chats - CANCELLED

Yes, I know I said that the chats were just taking a break for the summer vacation, but I have decided to make it a permanent vacation.  

Thanks to everyone for supporting the Delaware Area MS Chat Room for the last three years, we have had some amazing chat nights.  I appreciate all the support that you have shown each other, and the positive feedback and laughs you have given me.  We have all learned a lot from each other, and made some friendships.


The chat room widget will stay on my blog, so if anyone wants to continue to chat, you are welcome to do so on your own (there is no requirement for a host, just log into the chat room as see who is there).  There are also MS Chats at  MS World 
(http://www.msworld.org/nmss_welcome.htm 


Now, the reason for this change is simple: I really need a break from MS! I know a few of you have said the same thing so will understand.  I don't want to have to keep up with latest research, medications, symptom management techniques, programs, trends, cures, treatments, controversies, etc.  I don't want to comb through the five MS and neurology magazines that I receive every month.  I want to delete all the newsletters and e-zines that clog my in-box without worrying that I've missed an important chat topic.  I want to find out if "ignorance if bliss" is true!


Be well, everyone, and to quote my favorite book, "So long, and thanks for all the fish!"
Joan

NMSS Learn On-Line Video Series on Fatigue

I'm reviewing this six-part series of on-line videos about fatigue because I'm in such bad shape right now. I'm getting some good ideas for things to discuss with my doctor.

If you have MS Fatigue you may want to spend some time reviewing these, also.

Here is a link to "Fatigue Take Control Part One"
(if link doesn't work, go to http://youtu.be/ZGePZXfNRcw)

Measure Twice THEN Cut

House wren is building a nest, now that the blue birds have successfully fledged and are out of the box. It's fun watching the wren pair bringing huge sticks to fit into the little opening. They manage to get them in somehow. 


They have a lovely song (but don't photograph as well as bluebirds) and I'm looking forward to getting to know my new neighbor.


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Delaware Area MS Chat: On Summer Break

Hello Chatters!

The Delaware Area MS Chat will take a break for the summer. Next moderated chat will be 9 September.

If someone wants to host a chat, or if people want to get together to chat without a host, the chat room is always available for anyone to use.

In the meantime, I hope everyone enjoys the summer. I'll see you in September.

DE Area MS Chat Follow-up Information: Emergency Preparedness

Thanks to the chatters who attended a special chat on Emergency Preparedness. We had an open chat for the first hour, then a lecture for the second hour.  I'm providing the information I shared, and the links I mentioned in the chat.

Although emergency planning is important for everyone, it is critical for people with special needs or disabilities. These notes are provided to encourage you to begin THINKING about your needs.

Delaware has implemented an Emergency Preparedness Voluntary Registry for citizens who have special needs.  If you register using the secure website, then 911 personnel and first responders will have access to this information and can use it to better serve you should you need to dial 911. This includes fire, police, and EMT personnel.  IF you want emergency personnel to know about any of your special needs, I suggest that you check this out.

Also, this registry will give Delaware local and state emergency planners important information to better plan for wide spread emergencies such as hurricanes, floods, etc. 

To register on line (site is secure), go to http://de911assist.delaware.gov/
  
Emergency Preparedness planning starts with a PLAN. 
http://www.preparede.org/ - This is the BEST place to start, it is the Delaware Citizen Corp’s website with details on how to prepare.  This site includes five YouTube videos to help you through the planning process.

Start by identifying the emergencies you have to prepare for. The most common emergencies in DE are caused by Nor'easters. They cause flooding and blizzards, and we get them all year. We've also had some heat waves this year, which can be an emergency situation if you are not prepared.

We just began hurricane season on 1 June. Although Delaware has never experienced a head-on hit, we have gotten hit with glancing blows. 

What if a hurricane hits us this year, and you are either stuck at home for three days or are compelled to leave your house? Are you prepared to "shelter in place" or evacuate? I suggest that you start thinking about this now, before an emergency hits. Create YOUR personal emergency plan first.

Consider all the strategies and stuff you need every day now. That includes a wheelchair, a cane, a service dog, another person, for example. What about medications, communications tools, transportation, and health-related items? Glasses?

Consider HOW will you GET updates on the weather or emergency? Who do you need to stay in touch with? How will you do that?  Do you have a hand-crank powered radio?

IF you have to evacuate, let's say a gas line breaks in your building or neighborhood and you have to leave the area. What do you need to take and how will you leave? Can you drive? Do you need assistance getting down stairs? Who will you call?

The Delaware Emergency Preparedness Team recommends that you come up with your own arrangements for a shelter rather than rely on public shelters like the Superdome in New Orleans during Hurricane Katrina.

So start thinking about where you would go, who you could stay with, what hotels are handicapped accessible. Figure in increments of 15 miles away, 30, 60, 90, for example. Have a backup in case the hotels are full - lots of people will be doing the same thing.

Let's assume that your neighborhood gets evacuated, you can find a place 15 miles away. But if all of the beach area gets evacuated, you’ll need to go farther. If a tsunami hits the east coast, you might want to go even farther west.

Once you create your plan, create a Go Bag, a backpack or bag with essentials that you need in case you have to leave quickly. Consider including a hand-crank radio/flashlight, first aid kit, water, food, medicines, copies of prescriptions and important phone numbers. In a major disaster, 911 can get overwhelmed with calls, and it's possible that emergency personnel can't get to you.


Communicate your plan to others. Tell your family and friends. Tell the local authorities (fire department) where you live and what you will need. Sign up with Delaware's Emergency Preparedness Registry, which I explained above.  Keep your plan up to date, and communicate any changes to the people who support you.


There is a LOT more around this topic than we could address in a 1-hour chat, but I hope this starts you THINKING about YOUR emergency preparedness plan. Please use the websites cited above to get started.

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Delaware Area MS Chat Friday: Emergency Preparedness

Delaware Area MS On-Line Chat
Friday 10 June, 7:00 - 9:00 pm (east coast time)
Topic: Are You Ready for Bad Weather?


Open conversation:  7:00 – 8:00
Topic begins: 8:00 pm

To attend, click HERE

NOAA Weather Forecasters are calling for an "above average" hurricane season, which officially started on June 1st. 

Last August, we devoted a chat to emergency preparedness for people with disabilities, and I think it's time to dust off our emergency preparedness plans and make sure they are up to date.  Recently, I experienced a short power outage, and realized how much I have forgotten. 

Let's discuss what to do when really bad weather strikes. Are you prepared for a flood, hurricane, or heat wave? Can you manage if no one can get to you for several days? Let's discuss ideas for being ready for the un-predictability of our situation when the weather gets nasty. 

I'll share information received from last year's Delaware Emergency Preparedness Forum hosted by the University of Delaware's Center for Disabilities Studies.

Please come and share YOUR emergency plans.

If you are uncomfortable typing, you are still welcome to come and watch the conversation.

Although targeted to people living in the Delaware Area, these chats are open to anyone affected by MS.

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The Ups and Downs of Nature

It's been a long time since I've posted nature stories on this blog. Facebook is easier for quick status updates, but it's just too noisy and crowded for me.  Plus, I don't care about your farm or casino games or your friends' children.  But this is taking a long time to write so I'll probably just succumb to that dreaded network.


Anyway, here is today's news:


We have a mamma duck who has been nurturing eight ducklings for a while. It is fun to watch them running around and plopping down to eat our bird seed. Alas, as is the way of nature, today there are only four ducklings.  Not sure why we lost four ducklings overnight.  I'll let you speculate for me.

On the other hand, we finally have a nest in our Bluebird nest box, and today there are three eggs.  Time to reconnect with Cornell's NESTWATCH program and follow their protocol for nest watching.   Last year's eggs showed up much earlier in the season and the female disappeared just after the eggs hatched, which was during a very severe cold snap.  Not a threat this year, since we are about to experience our second heat wave of the year.  Maybe this year's clutch will be successful.


Today is a good day to disconnect and sit outside. So I'm signing off for the rest of the day.


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Delaware Area MS Chat Friday: Disclosure

Delaware Area MS Chat
Friday 27 May, 2011
7:00 - 9:00 pm (eastern)
To Disclose or Not To Disclose: That is the topic

Format:
Open chat 7:00 - 7:30
Topic begins at 7:30 pm (eastern time)

To attend, just click HERE or click on the coffee cup in the right margin.

How, when, and if to disclose your multiple sclerosis is a topic that has been coming up in our chat room, lately.

This is a tricky issue for the newly diagnosed as well as for long-time MSers who find themselves in a new environment with new people who don't know. Yet.

It’s time we focus on this important topic.

The Summer 2011 Momentum magazine (NMSS publication) has an article called “Disclosure how-to's from our Information Resource Center” with tips on disclosure issues in the workplace.  We'll discuss the information in that issue, information from other MS organizations, and hear from someone who recently successfully disclosed her illness to her son.   

Please come and share your own disclosure stories – the good and the bad. We can learn from each other's experiences and tips.

Note that the format for this chat is a little more structured than normal. 

Although targeted to the Delaware Area, these chats are open to anyone with an interest in multiple sclerosis.

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Delaware Area MS Chat Friday - What Makes You Happy?

Delaware Area MS Chat
Friday 13 May
7:00 - 9:00 pm
What Makes You Happy?

To attend, just click HERE or click on the coffee cup in the right margin.

As I type this announcement, I'm watching bluebirds in my backyard. They appear to be building a nest in our nest box, and I am enthralled. Bird watching is something that makes me happy.

What makes YOU happy? On some days, it is really hard to remember the good and nice things in our lives. So let's devote time to focus on positives in our lives this Friday the 13th as we gather on line for fun and support.

Remember that chat topics are just a SUGGESTION. We'll chat about this PLUS anything else that comes up. If you need to chat about a problem or concern, you are welcome to bring that up in the chat room, too.  Feel free to pop in anytime between 7:00 - 9:00 pm.

Although targeted to the Delaware Area, these chats are open to anyone with an interest in multiple sclerosis.

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Delaware Area MS Chat Friday: MS Walks

Delaware Area MS Chat
Friday 22 April 7:00 - 9:00 pm
MS Walks

To attend, just click HERE or click on the coffee cup in the right margin.

The Delaware National MS Society has held three fundraising walks (Newark, Wilmington, and Dover). There are a few more planned in DE, and many being held throughout the country as well.

Did you participate, or do you plan to participate in one of the many NMSS walks? Come and share your stories (the funnier, the better). If you aren't/weren't able to participate, you are still welcome to come to the chat.
 

Although targeted to the Delaware Area, these chats are open to anyone with an interest in multiple sclerosis.

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Thank You Wheeler's Wobblers

I want to thank everyone who came out to walk with Wheeler's Wobblers last Saturday. In spite of the cold, wet weather, everyone had a fun time. I won't know the total raised for a few weeks, but we raised over $8,000!

There are photos available in a Facebook album at http://www.facebook.com/media/set/fbx/?set=a.1894005823726.104978.1048952543

I will post the official team photo when it is available, but in the meantime here is a photo that I took of the team:

And here you can see our Wheeler's Wobblers sign:

Wheeler's Wobblers MS Walk This Saturday

MS Walk in Wilmington, Delaware is this Saturday, 16 April!


I am grateful to those who have donated to me and the team, and to the teammates who have brought so much support and enthusiasm to this team.  


There is still an opportunity to donate to me or the team by going to 


http://main.nationalmssociety.org/site/TR/Walk/DEDWalkEvents?px=4181026&pg=personal&fr_id=15401


See you on Saturday, rain or shine!

Delaware Area MS Chat Friday: Who is on YOUR MS Team?

Delaware Area MS Chat
Friday 8 April
7:00 - 9:00 pm
Who is on Your Team?

To attend, just click HERE or click on the coffee cup in the right margin.

Now that March Madness basketball is over, let's talk about one really important team: YOUR MS team.

I believe that the people who cope best with MS are the ones who approach life with a Team attitude. For example, they surround themselves with supportive and understanding friends and family, take advantage of social services, and create lists of people to call for assistance.

So who is on your Team? And more importantly, who didn't make the cut?We'll chat about this topic and anything else that's important to you. Feel free to pop in anytime between 7:00 - 9:00 pm.

Although targeted to the Delaware Area, these chats are open to anyone with an interest in multiple sclerosis.

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Delaware Area MS Chat Friday

Delaware Area MS Chat
Friday 25 March

7:00 - 9:00 pm
Spring is here!

To attend, just click HERE or click on the coffee cup in the right margin.

Spring began this week, and it's time to come out of hibernation. Let's chat about the ways we can become more active – physically, socially, etc.

We'll chat about this topic and anything else that's important to you. Feel free to pop in anytime between 7:00 - 9:00 pm.

Although targeted to the Delaware Area, these chats are open to anyone with an interest in multiple sclerosis.

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