A Short in the Cord

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

2011-12-28T12:34:00.000-05:00

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!

2011-12-23T14:24:00.000-05:00

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

2011-12-21T17:38:00.000-05:00

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

2011-11-06T15:15:00.001-05:00

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

2011-10-26T16:37:00.000-04:00

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?

2011-10-25T22:39:00.000-04:00

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!

2011-10-24T16:58:00.000-04:00

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

2011-10-17T10:16:00.000-04:00

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

2011-10-13T18:43:00.000-04:00

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

2011-10-08T21:05:00.000-04:00

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?

2011-09-24T12:08:00.000-04:00

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

2011-09-23T22:11:00.000-04:00

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

Alas, I am going through a lot of changes right now. As you’ve read in my previous blogposts, I’m focusing a lot of attention on my MS treatment changes due to mychanging symptoms and functionality. I’m also experiencing changes at mychurch, where a new interim minister is challenging the congregation to try newthings, 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 inimbalance!

Welcome autumn!

Time to Change My Direction

2011-09-22T19:40:00.001-04:00

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

2011-09-13T21:10:00.000-04:00

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

2011-08-12T11:21:00.000-04:00

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

2011-08-09T16:06:00.000-04:00

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

2011-07-14T10:06:00.000-04:00

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

2011-06-15T13:43:00.000-04:00

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

2011-06-14T17:42:00.000-04:00

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

2011-06-08T07:00:00.025-04:00

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

2011-06-06T19:10:00.001-04:00

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

2011-05-25T21:17:00.000-04:00

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?

2011-05-11T12:00:00.001-04:00

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

2011-04-21T09:00:00.001-04:00

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

2011-04-20T12:36:00.000-04:00

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

2011-04-13T22:15:00.000-04:00

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?

2011-04-06T11:47:00.001-04:00

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

2011-03-23T15:00:00.001-04:00

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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Delaware Area MS Chat Friday: MS Awareness Week

2011-03-11T10:43:00.000-05:00

Delaware Area MS Chat
Friday 11 March
7:00 - 9:00 pm
MS Awareness Week
What does MS = to you?

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

Did you know that next week is MS Awareness week? Let's talk about how you can spread the word and participate in various events.

Check out this NMSS web site to see how others answer the question, "What MS ="

http://www.nationalmssociety.org/about-multiple-sclerosis/ms-equals/index.aspx

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.

You don't have to live in the Delaware area to join.

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Wine Tasting Fundraiser for MS

2011-03-06T15:48:00.001-05:00

My MS Walk Team, Wheeler's Wobblers, is hosting a wine tasting fundraiser on Thursday, March 10. Here are the details. Bring your friends!

Wine Tasting Fundraiser
for the Multiple Sclerosis Walk MS Team, Wheeler’s Wobblers
“Wheelers wobble but we don’t fall down thanks to YOUR support!”

You will have an opportunity to taste wines from nine different regions. There will be music, appetizers, raffles, good company and wine!

Thursday, March 10, 2011, 5:00 – 8:00 pm
Deerfield Wines, Shoppes at Louviers,
off Paper Mill Rd
205 Louviers Drive, Newark, DE, 19711; 302-266-8061
You must be 21 years old to attend.

Raffles: Keurig coffee maker PLUS a variety pack of coffee K-cups PLUS four more boxes of coffee K-cups ($150 value),
Gift certificate from Pagave salon and spa,
$25 Amazon.com gift certificate,
Car Washes from Magic Car Wash (we'll raffle these off every 15 minutes),
and a signed book "Reading the Stones, a Collection of Memories from the First State" by Dr. Lee Anderson.

Food items:
Cheese tray (donated by Deerfield Wines), variety of breads (donated by Great Harvest Bread Company), 10 pizzas (donated by Pat's Pizza), vegetable tray (donated by Timothy's), and potato chips and pretzels (donated by Herrs).

Suggested donation is $10.

All entrance donations and 10% of wine sales benefit Wheeler’s Wobblers fundraising.

Multiple sclerosis is a chronic, often disabling disease that attacks the central nervous system.
Symptoms can range from dizziness, numbness in the limbs, extreme fatigue, to paralysis or loss of vision.

Delaware Area MS Chat Friday: Open Mic Night!

2011-02-24T09:17:00.000-05:00

Delaware Area MS Chat
Friday 11 February, 7:00 - 9:00 pm
Open Mic Night!

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

Do you have a topic you want to discuss? Here's your chance to grab the "microphone" and take the stage.

Join us this Friday for an informal chat, to exchange information, and to check in. 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.

You don't have to live in the Delaware area to join.

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Delaware Area MS Chat Friday: Newly Diagnosed

2011-02-09T13:25:00.000-05:00

Delaware Area MS Chat
Friday 11 February, 7:00 - 9:00 pm
What do YOU say to the Newly Diagnosed?

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

Our Chat Room visitors represent a wide range of people in various stages of multiple sclerosis. Some are not officially diagnosed, some are newly diagnosed, and some have had MS for years or decades.

I am one of the people who has had MS for decades. Recently, I realized that I am not sure what to say to someone newly diagnosed. I don't remember what questions I had all those years ago when I was first faced with an MS diagnosis.

Let's spend some time chatting about what YOU say to someone who is newly diagnosed, or if you ARE newly diagnosed, what questions you have. What is the most important piece of advice you would give to someone newly diagnosed? How can WE better support the newly diagnosed?

Join us this Friday for an informal chat, to exchange information, and to check in. 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. You don't have to live in the Delaware area to join.
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DE Area MS Chat Follow-up Information

2011-01-29T21:34:00.000-05:00

Thanks to the TWELVE chatters who popped in for the Delaware Area on-line MS Chat last Friday. What a busy night! As promised, here is a summary of the resources we discussed, in no particular order.

For people in the Newark, Delaware area -
Yes U Can Assisted Exercise Program: If you are an adult 18 and older with limited mobility or disability who wants to exercise but need assistance, sign up now to receive one- on- one assistance from student volunteers. Contact the Yes U Can Extension Program via email info@yesucandelaware.com or call 302-286-1399.

Also related to exercise: Get a FREE My MS Yoga DVD at http://www.mymsyoga.com/yoga

"My MS Yoga is a yoga program created especially for those with multiple sclerosis by Baron Baptiste and Dr. Elliot Frohman. My MS Yoga was developed so that you can adapt and modify the exercises based on your needs. If you’re having a bad day, you can modify your program and do something less intensive. On better days, you can challenge yourself to enhance your yoga capabilities." Please note that this is sponsored by Biogen Idec and Elan Pharmaceuticals.

Speaking of yoga, we discussed meditation as a way to manage pain.
Shinzen Young teaches mindfulness meditation, and has innovative techniques for pain management http://www.shinzen.org/

He offers a number of CDs on his website, including Meditating Through Fatigue and Break Through Pain. Some are available on Amazon.com.

Another mindfulness blog from Lhasha Tizer (Denver’s mother): http://themindfulnesspath.blogspot.com/

Our official discussion topic was “where do you get reliable information about MS?” and our answers included a wide range of resources, including the following websites:

Brass and Ivory (Lisa’s): http://www.brassandivory.org/
Wheelchair Kamikaze (Marc's): http://www.wheelchairkamikaze.com/

Health Central: http://www.healthcentral.com/multiple-sclerosis/
Rocky Mountain MS Center: http://www.mscenter.org/
Patients Like Me: http://www.patientslikeme.com/multiple-sclerosis/community
MS World: http://www.msworld.org/
About. com: http://ms.about.com/
North America Research Committee on MS: http://narcoms.org/
MS Foundation: http://www.msfacts.org/
National MS Society: http://www.nationalmssociety.org/
MS Association of America: http://www.msassociation.org/

There are "aggregate sites" which collect latest information from blogs:

Alltop: http://multiple-sclerosis.alltop.com/
The Daily Reviewer, Top 100 MS Blogs: http://thedailyreviewer.com/top/multiple-sclerosis

The question was raised, "can people with MS drink green tea?" because there is a large amount of antioxidants found in green tea. This led to a discussion of Complimentary and Alternative Medicines (CAM), and frustration over the conflicting information found in books and websites.

Check out this link for one doctor’s opinion from the Swank MS Foundation:
http://www.swankmsdiet.org/Ask%20the%20Doc

"Antioxidants stimulate the immune system. MS is an autoimmune disease, therefore, it is theoretically possible that increasing immune activity by using antioxidants can stimulate MS disease activity, though most studies show improvements in MS symptoms with the use of antioxidants. Inflammation in general exacerbates MS, thus, if antioxidants reduce free radicals and inflammation, this is a therapeutic treatment that is recommended to MS patients."

This from the Rocky Mountain MS CAM Center: http://www.ms-cam.org/
"Green tea contains polyphenols, which have antioxidant effects, and caffeine (10-50 mg caffeine/cup). In modest doses (up to 250 mg daily), caffeine is usually well tolerated and may improve mental alertness. The urinary irritant and diuretic actions of caffeine may worsen MS-associated bladder difficulties. Also, caffeine may be a risk factor for osteoporosis, a condition to which MS patients may be especially prone."

Books: Complementary and Alternative Medicine and Multiple Sclerosis, by Allen C. Bowling, M.D., PhD. This and many other books by Dr. Bowling such as "Alternative Medicine and Multiple Sclerosis" are available on Amazon.

Phew!

Next chat 11 Feb 2011

Home

Delaware Area MS Chat This Friday

2011-01-26T11:58:00.000-05:00

Delaware Area MS Chat
Friday 28 January, 7:00 - 9:00 pm
Where do YOU get MS information?

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

In the past few years, there have been big developments in MS research, drugs, and therapies. From Vitamin D to CCSVI to the first oral disease modifying drug, there have been lots of new things to learn about this disease.

Whether newly diagnosed or not, we all have the responsibility to be an informed patient. So how do YOU find up-to-date, reliable information? What sources do you trust?

Join us this Friday for an informal chat, to exchange information, and to check in. 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. You don't have to live in the Delaware area to join.

If you are uncomfortable typing, you are still welcome to come and watch the conversation.
If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.
Home

Delaware State Parks Celebrating Inclusion

2011-01-24T12:21:00.000-05:00

http://www.destateparks.com/

Save these dates for "Adventures in Recreation: Celebrating Inclusion in Delaware."

I know these are a few months away, but I'm very interested in attending the event at Lums Pond, so let me know if you plan to go, also. I will try to remember to re-post this closer the the spring/summer.

At each event, the State Parks personnel will be highlighting inclusive recreational opportunities for people with disabilities in all the State Parks throughout Delaware.

Additionally, inclusive recreational opportunities throughout the rest of Delaware and nearby states for people with disabilities will be advertised. Food vendors will also be present at each event.

Saturday, May 28th, 2011: Trap Pond State Park 10:00 a.m. – 2:00 p.m.

Saturday, June 4th, 2011: Lums Pond State Park 10:00 a.m. – 2:00 p.m.

Sunday, June 5th, 2011: Killens Pond State Park 1:00 p.m. – 5:00 p.m.

Did you know that you can buy State Park yearly entry passes on line? Go to this link: https://egov.dnrec.delaware.gov/egovpublic/dnrec/disp?doc=shoppingcart&op=catalog&channel=public&CatalogType=ParksAndRecreationPasses

More information is also available here:
http://www.destateparks.com/fees/entry/annual-pass.asp

Return to A Short in the Cord home page

University of Delaware's Multiple Sclerosis Assessment Clinic

2011-01-24T11:29:00.000-05:00

University of Delaware
MS PHYSICAL THERAPY
ASSESSMENT CLINIC

Have you experienced some functional loss recently?
Was your last assessment more than one year ago?

Now is the time to schedule a FREE ‘pit stop’ with the MS Assessment Program at the University of Delaware Physical Therapy Department.

It is designed for those who feel they have some level of functional loss, particularly for those who have not had an assessment done in the last 2 years. The assessment may consist of one or more of the following services:

Physical Therapy Assessment
Occupational Therapy Assessment
Assistive Device Assessment
Ambulation Analysis
Emotional Counseling
Bowel and Bladder Management Consult
Nutrition Consultation
Optometry exam

The number of appointments are limited and the slots can fill up quickly so don’t delay!

Call Cathy Ciolek at (302) 831-0138 to schedule an appointment.

Clinic location: University of Delaware, McKinly Lab Building
63 East Delaware Avenue, Newark, DE 19716
(Directions will be mailed to participants)

This service is made possible in part by support from the Delaware Chapter of the National Multiple Sclerosis Society

Delaware Area MS Chat Friday:

2011-01-12T11:01:00.000-05:00

Delaware Area MS Chat
Friday 14 January, 7:00 - 9:00 pm
Recovering from the holidays

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

After weeks of November/December holidays, it's time to recover, recharge, and reconnect.

This will be a lighter chat and open to anything people want or need to talk about. Newcomers are always welcome.

If you want to connect on-line with others with MS in Delaware and surrounding areas, please join us THIS FRIDAY between 7:00 - 9:00 pm. You don't have to be from Delaware to join.

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

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.

Home

The Year of Doing Less

2010-12-31T22:37:00.000-05:00

I'm going into my fourth year of "early retirement" due to disability. As is my custom, I am reviewing lessons learned from last year.

The most important lesson learned is that I should not plan to have the same level of energy that I had before disability. Last year, there were too many times when I believed that I was normal and had the same energy level that I had before. So I filled up my schedule, made commitments, volunteered endlessly, and then crashed in confusion. "What happened?" I would whine. Then I would go to the doctor looking for yet another prescription, or try alternative therapies that friends said were successful for them.

But last year, I lost sight of my authentic self. I lost sight of the reason for my disability. This next year, I am going to ignore the cultural message that "You Can Do Anything You Set Your Mind To and Don't Let Anyone Tell You Otherwise." Bullpoop. I'm going to avoid going to lectures by people with MS who climb Mt. Everest or travel the world in 80 days. I am not using them as role models any more. I will be my own authority and not succumb to peer pressure.

This next year, I pledge to do less. I pledge to focus on a few fundamental activities, and to avoid saying 'yes' to everything. I pledge to give serious thoughts to my priorities. And I AM prepared to deal with the disappointments - mine and others.

Just thought you should know this now so that you will be prepared for a different year, too.

Happy New Year!

Home

All About MS: Yet Another MS Aggregate Site

2010-12-29T07:59:00.000-05:00

All About MS is another information collection site that covers a wide range of Multiple Sclerosis topics. The creators contacted me because A Short in the Cord has been added to their MS resources section (another good list of MS bloggers section). It's a broad site with lots of information, but I haven't had time to assess its accuracy.
The full title of the site is Multiple Sclerosis Symptoms, Diet, Exercise and Living with Multiple Sclerosis

PHEW!

According to the creators, "We provide useful information and resources for people who are diagnosed with Multiple Sclerosis Disease or people looking for information on Multiple Sclerosis. We provide resources on MS Symptoms, MS Exercise, MS Diet and Living With MS."

Of course, there is no MS Diet, which they explain nicely.

I can't help but wonder at the large number of bloggers who write about this disease, and the huge amount of information available on line. I will confess that I find their numerous advertisements to be a distraction, but I'm not willing to write them a big check to eliminate the need for revenue.URL=http://www.allaboutms.com

Back to A Short in the Cord home

Phew! I survived. How about you?

2010-12-28T16:31:00.000-05:00

December is almost over and I only crashed one time (for two days). I'm getting better at managing my obligations, and balancing my limited energies with my unlimited interests. I am looking forward to getting back to Delaware Area MS Chats on the second and fourth Fridays of each month.

Do YOU have any topics that you would like to see in one of the chats? If so, please leave a comment here, or on the Facebook feed.

Happy New Year!

YOU Are Invited to a Delaware Area MS Chat Friday: No-Stress Holiday Party

2010-12-07T17:18:00.000-05:00

Delaware Area MS On-Line Chat
Friday 10 December, 7:00 - 9:00 pm
NO-stress Holiday Party

Welcome to the December Holiday season. With so many celebrations to choose from, are you energized? Or do you get blue amid the red, green, and gold of December holidays?

People with MS have additional pressures to face at this time of year, with increased demands on our energy and time. Parties, travel, and expectations for perfection can send us into despair.

So let’s throw a no-stress holiday party for ourselves. Everything is imaginary in our chat room except for our friendships, so bring an imaginary treat to share, wear whatever imaginary finery you dream up, and get ready to laugh and share your tips for dealing with holiday stress.

To attend, just click HERE or click on the coffee cup in the right margin of this blog, then follow the directions.

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

Home

Another "Dear Joan" Letter

2010-11-30T21:14:00.000-05:00

This is a post about losing connection to self due to extreme fatigue and bodily discomfort. Thought I'd tell you upfront so you can decide if you want to continue reading. I'm going to write it, regardless, as I have written so many times in the past. (Refer to Exhale, and 2007 Update ) I have to do this to remind myself, yet I obviously keep forgetting that I've gone through this before.

Dear Joan,
Recently you were so desperate to relieve your fatigue and pain that you caved into pressure and switched to a different anti-depressant that is known for its energizing properties. Side effects were severe. Anger and agitation were constant, yet the outbursts in your head were intoxicating. Energy is energy, and anger is energizing. It was tempting to stay in this drug-induced state, skewing reality to emotional outbursts. Anything to stop feeling like a sumo wrestler is pushing you to the ground.

The energizing drug caused sleeplessness, restlessness so you loaded up on sleeping pills and relaxants. One pill makes you happy, and one pill makes you sad. More drugs needed to counter the first. And these drugs are all legal, prescribed by doctors upon your request.

That "Alice in Wonderland" effect was your red flag, and we are glad that you recognized the rabbit hole you went down in time to crawl back out.

Dear Joan, if you are ever that desperate again, try something different. Pretend to be T'Pol and meditate to control emotions like all Vulcans in Star Trek. Accept the fatigue and stop fighting it. Be grateful for disability insurance. Remember to listen to yourself. Be strong. Be unique. Honor yourself as your own authority.

Good luck with your current detox, you will be here for you.

Delaware Area MS Chat Friday is CANCELLED

2010-11-21T20:53:00.000-05:00

Due to the Thanksgiving holiday, this Friday's MS Chat is cancelled.
I hope that everyone has a relaxing Thanksgiving. Hey, I can dream, can't I?

Next chat: 10 Dec

Training my Dragon

2010-11-19T18:55:00.000-05:00

Hello everyone!

I am speaking to you (instead of typing) today. This is courtesy of my Dragon voice recognition software. Normally, I do not use my blog to test products, but I'm really impressed with Dragon.

If you have difficulty typing you may want to consider a voice-recognition software package such as Dragon, and check out the built in voice recognition software that comes with some operating systems.

This is especially important for the Delaware area multiple sclerosis chats that I host. For those of you who have difficulty typing and have avoided chat, I can assure you that Dragon software will work in the chat room.

Now be warned, this program will not eliminate all typing. At least not the version I purchased. It does have a lot of capabilities that I have not yet learned so I am looking forward to exploring my new friend Dragon.

Our next chat will be 10 December, and I look forward to speaking to you through my Dragon!

Home

Awesome Chat Last Night!

2010-11-13T12:35:00.001-05:00

A big thank you to the nine chatters who participated in last night's Delaware Area MS Chat. Here is a summary of the discussion.

Voice recognition software: "Robert" successfully used Dragon Voice Recognition Software during this chat. He was able to speak his comments instead of typing, which opens the door to people with MS who have difficulty typing. THANK YOU Robert for participating and giving us good information about this tool.

MS Specialist Now in Delaware: Three chatters are now seeing or will soon see Dr. Jason Silversteen, who spoke at the recent NMSS DE Annual Meeting. Dr. Silversteen comes to DE from an MS Clinic in Texas, and is planning to set up an MS Center in Delaware, through the Christiana Hospital. This news has sent a wave of hope and enthusiasm through our little state.

Medications: Success stories with Ampyra were shared. Although it doesn't seem to help that much with walking, which is what the FDA approved it for, it does seem to help with fatigue and other sensory issues.

The drug Acetyl L-carnitine has been "prescribed" for fatigue (by Dr. Silversteen to one chatter). This is an antioxidant that is used as a supplement, and is available from health stores or on line.

Holiday Stress:
Stress at this time of year is VERY high on our list of things we'd love to eliminate. Here of some of the tips we shared:

1) Be clear about your values for the holidays, then prioritize your activities based on those priorities. For example, if you value family, then plan for activities that include family. If you value decorations, cookies, or presents, then plan for those activities. If you have too many things to do, and you DON'T value cookies or decorations more than family, then you can prioritize you activities accordingly. Now if you value everything equally, then read the results from our chat on DISAPPOINTMENT.

2) Examine your expectations and be willing to accept an IMPERFECT holiday.

3) Be aware of external pressures this time of year, pressures from 'society', family, neighbors, or culture. Do what you can, but don't "should all over yourself."

4) Beware about doing too much. Many people with MS have fatigue, which is more severe than non-MS people. We have to face reality of our lives, and be clear in our priorities and abilities. Again, refer to our chat on DISAPPOINTMENT.

There were lots of good comments about dealing with travel, crowds, and demands at this time of year. I hope that we all can remember that we must take care of ourselves first.

Due to the holidays, there will be no second chat in November.
NEXT CHAT: 10 December

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Delaware Area MS Chat Friday: Holiday Stress

2010-11-10T17:18:00.001-05:00

Delaware Area MS On-Line Chat
Friday 12 November, 7:00 - 9:00 pm
Are You Ready for Holiday Stress?

I went shopping this week and discovered that stores are already playing Christmas music. Yikes!

I need to get ready to manage the upcoming holidays and the inevitable stress. How about you?

Let's come together this Friday to share holiday stress management tips and maybe even have a few laughs.

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

Home

Thanks, Friday Night MS Support Chatters

2010-10-23T19:02:00.000-04:00

Thanks to the seven chatters who popped in to discuss "whatever."

We talked about topics like Ampyra (although it is prescribed to assist mobility it seems to help fatigue), my silly scooter accident (you had to be there), van conversions, devices that make you home more accessible, etc.

It's nice to talk to people who understand that this disease is confusing and the tools available to help us are varied.

Next chat: November 12

Delaware Area MS Chat Friday: BYOT

2010-10-20T18:37:00.000-04:00

Delaware Area MS Chat
Friday, October 22
7:00 - 9:00 pm (eastern)
BYOT
(Bring Your Own Topic)

We can continue our last conversation about “disappointments” or any other topic of interest to you.

Let's come together this Friday to check in with each other, to have a few laughs, and to let each other know that this is a journey best not taken in isolation.

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

Home

Newark DE MS Support Group Meeting Wednesday, 13 Oct

2010-10-11T10:52:00.000-04:00

Newark MS Support Group (aka Main Street Circle of Friends)
Newark Senior Center
200 White Chapel Drive, Newark, DE 19713
Contact Marie Eldreth, NMSS DE: 302-655-5610

Next meeting:
Wednesday, 13 October, 7:00 pm
Topic:
Disaster Preparedness for People with Disabilities

Are you prepared for a flood, hurricane, gas leak, or snow storm? Can you manage if no one can get to you for several days? At the next Newark MS Support Group, we’ll discuss ideas for being ready for the un-predictability of our situation when the weather gets nasty.

Joan Wheeler will share information she gathered from the Delaware Emergency Preparedness Forum, which was hosted by the University of Delaware's Center for Disabilities Studies and is part of Delaware's Workgroup on Emergency Preparedness for Individuals with Non-Typical Functional Needs.

You will receive a Disaster Readiness Planner, and leave with good ideas for being well prepared should an emergency happen.

Back to A Short in the Cord Home Page

DE Area MS Chat was NOT Disappointing! SUMMARY

2010-10-09T13:34:00.015-04:00

Thanks to the eleven chatters who tore their attention away from the political ads on TV to chat about MS and disappointment. We had three new people join, and we were happy to welcome them.
As promised, here are highlights from Friday night's chat:
Disappointment manifests as guilt, anger, self-pity, blame, sadness, etc. These are tough emotions, and I highly recommend a book called:

“MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis" by Allison Shadday LCSW
You can find this on Amazon or at Hunter House
http://hunterhouse.com/shopexd.asp?id=605&bc=no

In Delaware, you can call the National MS Society at 302-655-5610 if you want to speak to a counselor to help you with your emotions. Or you can use the Delaware help line at 800-464-4357 to get confidential referrals.

We discussed two types of disappointment:
1) When we are personally disappointed by the things life hands us and
2) when we disappoint others.

I shared three tips when YOU are personally disappointed. They are:

TIP #1: Allow yourself to feel your emotions (don’t beat yourself up), then create a new plan.

TIP #2: Prioritize – disappointment will still be there, but you’ll be able to deal with it knowing that you are doing what’s important and best for YOU.

TIP #3: Accept Reality

The best advice I've seen, but just keep forgetting, is "Accept the Disappointment and then Move On." Arrgghh! That's tough to do, and I allow myself time to wallow in self pity, then I have a piece of chocolate and set some new (easier) goals. But it really is good advice. I get into trouble when I deny reality and tell myself that I’m healthy (hey, I look great!) and energetic and clear minded.

NO, I’m NOT giving up. I’m accepting and regrouping.
Acceptance is NOT quitting! Denial just takes too much energy.
Accepting means seeing what is true and taking responsibility for it.

One chatter ("Sister Susan" a licensed psychologist) suggested that we use a JOURNAL to keep these tips handy and reflect on our success in dealing with disappointment.

She also said:
"The bottom line is that life can be very disappointing in many different ways, the goal is to learn to acknowledge the pain & tolerate the feeling. If you can feel the pain, it begins to heal a little. Tolerate the pain without distractions for a while, as it diminishes it is then OK to distract." Grieve and heal.

She recommends a guided imagery CD from Belleruth Naparstak called "A Meditation to Help You with Multiple Sclerosis, which can be found at http://www.healthjourneys.com/Product_Detail.aspx?id=17

We also touched on disappointing others. I shared a negotiating technique from my life coach called
BETTER IT, BARTER IT, BAG IT.

If someone asks you to do something and you can't, you can figure out ways to make the task easier (better it), negotiate to do something differently (barter it), or decide not to do it at all (bag it).

I confessed that after trying my best to negotiate and be considerate, I will wash my hands of responsibility if they choose to be offended, hurt, or disappointed. If I have communicated, stayed true to my priorities, and tried negotiating, then how they feel inside is their choice. It is not my business to tell someone how to feel. It is THEIR choice and I don't feel bad if they feel disappointed.

That may sound hard-hearted, but my PRIORITY is to manage my energy, and dealing with whining people is not a good use of my energy. My recommendation is to BE POPEYE: I am who I am (I yam who I yam) with no excuses. I can't worry about how someone else feels; I can be sure not to hurt someone intentionally, but I YAM WHAT I YAM, and what I yam is a person with low energy.

Christina shared a poem with us that I'm reprinting here with her permission:

A Poem About My MS

You’re taking over my life
You’re cutting through like a knife
I want to get control again so the
things I want won't end.

You cause me so much pain
and depression it's like I'm
supposed to learn some lesson.

A lesson about not taking things
for granted appreciate them the
way they are and not to let the
ones you love get too far.

Keep them near keep them dear
for they are the ones to wipe
away all your tears.You have to
stand up and be strong it will
soon all be gone.

Now don't be afraid don't run away
there will be a cure someday then all the pain
and depression will end forever
so what ever you do don't say NEVER!

By Me Christina Spiess

Thanks to EVERYONE for sharing your stories of disappointment. Thanks for the honesty and the open hearts. I learned a lot from you.

NEXT CHAT: FRIDAY, OCTOBER 22.
HOME (to A Short in the Cord home page)

Delaware Area MS Chat Friday: MS is Disappointing

2010-10-05T07:27:00.000-04:00

Delaware Area MS On-Line Chat
Friday 8 October, 7:00 - 9:00 pm
MS is Disappointing
Open conversation 7:00 - 8:00
Topic begins at 8:00

I’m getting very good at saying, “I’m sorry to disappoint you, but I just can’t do that right now.” MS is such an unpredictable disease that often we find ourselves in these situations. But it doesn’t feel good to disappoint others.

MS also disappoints us. It messes with our goals, our plans, our dreams. So it’s important to recognize warning signs when our feelings and disappointments become overwhelming and to reach out for support. I’ve collected some tips for dealing with disappointment that I’ll share beginning at 8:00.

Let’s come together this Friday to check in with each other, to keep our lives in perspective, and to let each other know that this is a journey best not taken in isolation. We are not alone in the struggle so let’s cheer each other along!

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

Home

Delaware Area MS Chat Friday: Changing Seasons

2010-09-22T08:30:00.020-04:00

Delaware Area MS Chat
Friday 25 September, 7:00 - 9:00 pm

Changing Seasons; Changing Symptoms?

In the northern hemisphere, Fall begins on September 23rd.

Do you have an increase or decrease in symptoms when the seasons change? Do they get better, worse, or no change?

We need some upbeat, fun time together now that the hours of daylight will begin decreasing.

P.S. ARE YOU STILL WORKING ON YOUR EMERGENCY PREPAREDNESS PLANS?

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

Home

Delaware Area MS Chat Resumes THIS Friday

2010-09-08T11:06:00.000-04:00

Delaware Area MS Chat
Friday 10 September, 7:00 - 9:00 pm

Glad That's Over!

We just experienced one of the hottest summers, ever. Phew! I’m glad that’s over.

We need some upbeat, fun time together. Come chat about what makes you glad or happy. If you whine, make it a cabernet!

P.S. ARE YOU STILL WORKING ON YOUR EMERGENCY PREPAREDNESS PLANS?

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

Home

Delaware Area MS Chat Friday is CANCELLED

2010-08-24T17:22:00.000-04:00

Delaware Area MS On-Line Chat
Friday 27 Aug
CANCELLED

The last week of August is a busy week for a lot of people, with transitions from summer to fall schedules.

The Delaware Area MS Chats will resume on September 10.

Emergency Preparedness Chat Results

2010-08-14T12:24:00.000-04:00

Thanks to the six 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 shared information I received at last week's Delaware Emergency Preparedness Forum. Below, I'm providing the information I shared, and the links I mentioned in the chat:

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.

http://www.ready.gov/america/getakit/disabled.html

http://www.inclusivepreparedness.org/DisasterReadiness.html

Although emergency planning is important for everyone, it is critical for people with special needs or disabilities.

We are heading into the heart of hurricane season for our area. Although Delaware has never experienced a head-on hit, we have gotten hit with glancing blows. Remember Hurricane Isabella in September 2003 or Floyd in September 1999?

What if one 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.

Start by identifying the emergencies you have to prepare for. For example, in Delaware we probably don't have to worry about volcanoes, but the most common emergencies in DE are caused by Nor'easters. They cause flooding and blizzards, and we get them all year.

Example: In preparing my personal emergency plan, my first concern is loss of electricity during a storm. Without electricity, I have no refrigerator for medications, no Air Conditioning (and getting overheated causes loss of functionality), and the basement could flood due to the sump pumps not working.

Another concern is that during a blizzard, like the one we had this March, I don't have the energy to shovel the driveway after a blizzard so an ambulance couldn't get to me if I'm injured. I have to be ready in case I can't walk or see when the storm hits, also.

There are a number of on-line resources to help you plan how to maintain your independence BEFORE a disaster strikes.

http://www.preparede.org/ - I suggest you start with this one, no matter which state you live in.

http://www.ready.gov/america/getakit/disabled.html

http://www.inclusivepreparedness.org/DisasterReadiness.html

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?

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?

An eye opener for me:
The Delaware Emergency Preparedness Team recommended 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. I think you all know how miserable that was.

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.

Let's assume that your neighborhood gets evacuated, you can find a place 15 miles away. But if all of Rehoboth 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. Delaware is working on a registry, and hopes to have it ready by September. Keep your eyes open for that. And 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.

NEXT CHAT: Aug 27

Delaware Area MS Chat Friday!

2010-08-11T22:48:00.000-04:00

Delaware Area MS On-Line Chat
Friday 13 August, 7:00 - 9:00 pm (east coast time)
Topic: Emergency Preparedness
Open conversation 7:00 – 8:00
Topic begins at 8:00
To attend, click HERE

On Friday the 13th, 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 from a Delaware Emergency Preparedness Forum that I'm attending Thursday. This will be hosted by the University of Delaware's Center for Disabilities Studies and is part of Delaware's Workgroup on Emergency Preparedness for Individuals with Non-Typical Functional Needs.

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

Free Transformative Writing Workshop (Delaware)

2010-08-03T10:27:00.003-04:00

TRANSFORMATIVE WRITING WORKSHOP

Wednesday, September 8th
10:00am – 12:00pm

MS Society office
2 Mill Rd., Suite 106Wilmington, DE 19806
Cost: Free!

Research has shown that writing in a journal can actually boost your immune system. Learn how keeping a personal journal can empower and transform your life. The writing is entirely private.

This program will be professionally led by Joan Leof, of Write to Heal. Joan has been journaling for over 40 years and leading workshops in self-expression for over 20 years.

Call Marie at 302-655-5610 to register. Registration deadline is September 3.

Marie Eldreth

Programs & Advocacy Coordinator

National MS Society Delaware Chapter

2 Mill Road, Suite 106

Wilmington, DE 19806

302-655-5610 ext. 116

Delaware Area MS Chat Friday: BYOT

2010-07-21T14:15:00.000-04:00

Delaware Area MS Chat
Friday 23 July, 7:00 - 9:00 pm
BYOT (Bring Your Own Topic)

It's just too darn hot to plan anything, so this is an open chat. I can tell you about my new scooter if you are interested. Join us during this Friday for an open discussion about anything you need or want to chat about.

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.
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Delaware Area MS Chat Friday!

2010-07-07T13:00:00.001-04:00

DE Area MS Chat

Friday 25 June, 7:00 - 9:00 pm

Chat Topic: GOAL!

In honor of the World Cup Soccer Tournament, let's talk about "goals" (pun intended!).

I've had to redefine my goals due to multiple sclerosis, many times. How about you? How has MS affected your goals? How have you adjusted?

We’ll chat about this PLUS anything else that comes up, like stories from the MS Cruise for a Cause. Remember that the chat topics are just a suggestion.

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.

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Delaware Area MS Chat Friday: No Host, but Chat Still On

2010-06-20T22:41:00.001-04:00

Delaware Area MS Chat
Friday 25 June, 7:00 - 9:00 pm
No-Host Chat

The host for the on-line MS chat will be unavailable this Friday, but the chat room will be open to anyone who wants to talk.

It just takes two chatters to make an interesting conversation. If anyone wants to host, just log in at 7pm and stay on line until 9pm and welcome new people. You can even pick your own MS topic.

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.

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Delaware Area MS Chat Friday! Your Team?

2010-06-10T09:06:00.005-04:00

Delaware Area MS Chat
Friday 11 June, 7:00 - 9:00 pm
Who's on Your Team?

Americans value independence, but with a chronic illness our independence is challenged. 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?

Remember that chat topics are just a SUGGESTION. We’ll chat about this PLUS anything else that comes up.

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.
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In Delaware: Free Summer Power Chair & Scooter Safety Check

2010-06-02T21:32:00.005-04:00

Summer Power Chair & Scooter Safety Check

Hi, I’m Rick Hofmann, a member of the “disability” community and Service Manager at American Mobility in New Castle.

We’d like to invite you and your constituents for a free power wheelchair and mobility scooter check-up event next weekend, June 4/5. Please see the attached flyer.

In addition to the free check-ups to help keep equipment safe for the summer, we’re also offering a discount coupon for parts and labor should anyone need maintenance.
Free Lift Chair

We’re also giving away a free fully-functional Golden Technologies lift chair. Everyone who attends will be entered to win.

Please feel free to circulate as widely as you wish. All are welcome.

Many Thanks,
Rick Hofmann
American Mobility
101 J and M Drive
New Castle, DE 19720(302) 276 – 1801

Relaxing Moment

2010-05-21T14:02:00.005-04:00

Take a break. Listen to an American Robin accompanying the sound of the bubbling water from the fountain on our deck. Is the Robin saying, "be at peace" ?

Breathe in... Breath out... Breathe in peace... Release anxiety...

IF YOU DON'T SEE THE VIDEO, go to http://www.blogger.com/video-play.mp4?contentId=30b564644b6ad294&type=video%2Fmp4

Ommmmmmmmmmmmmmmmm

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Grieving

2010-05-19T14:46:00.000-04:00

I'm sorry to report that the five bluebird hatchlings in our backyard nest box have died. It appears that they were only a few days old when unusually cold weather and severe storms hit our area. The box has been cleaned and prepared if the bluebirds want to try again. I'm beginning to look at birdwatching as a spiritual journey, watching miracles and the cycle of life from birth to death.

Speaking of grieving, though, the Winter/Spring 2010 edition of MSAA Motivator magazine has a good article about "Grief and Loss in the MS Journey." I read this before I knew about the birds, and found it useful because I've been feeling just awful lately. I suspect I understand why, now.

This article explains that grieving is not necessarily a linear process; not one that finally comes to completion. Especially with chronic illness, we may go back and forth through the stages of grieving. Grieving will also be chronic. Theresa Rando refers to "Sudden Temporary Upsurges in Grief" and notes that MS patients can have upsurges in grief when we have a relapse or discover something else we can no longer do.

A few weeks ago, I had a few absolutely wonderful days. I had energy. I walked without assistance. Life was fun and terrific. Then things went back to my "normal" and I slumped into depression and hopelessness. I suspect that I am "STUG" ("sudden temporary upsurge in grief") I'm gonna use that term from now on. I'm STUG, in a STUG, feel like STUG, oh go eat STUG. You get the picture.

I see now that what I experienced, and am still experiencing, is grief for the loss of those wonderful energetic days. According to this article, this is typical of MS. Now that I think of grief as chronic, it helps me to understand what's happening.

There is useful information in this article, including some tips from Anne Marie Buck such as: "Don't let fear of grief stop progress... Think of grief as waves at the beach that come and go. Each wave has a crescendo and eventually disappears. Some waves are strong and some are mild. Make peace with that ebb and flow." Each wave of grief helps us to become more resilient.

Terrific. One more challenge to make me resilient. As they say, "what doesn't kill you makes you very, very sick." LOL!

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Thanks Friday MS Chatters!

2010-05-17T11:01:00.000-04:00

Thanks to the chatters who visited last Friday’s Delaware-area multiple sclerosis chat.

It was a night of information and encouragement (we skipped the planned topic in favor of exercise and travel topics). Along with five Delaware people (Susan, Barb, Hope, Kathy, Joan), we hosted five out-of-staters. A newcomer, Brian from western PA, joined the party. Our favorite MS caregiver, Carla from Florida, and some other cherished bloggers (Denver, Jen, Cathy) came, too.

Hope from Newark, DE, told us about the MS Aquatics program that recently started at the Bear (Delaware) YMCA. She was so enthusiastic about the program that Susan and I promised to sign up. Susan agreed to be my exercise buddy to encourage me to actually show up. Thanks Susan and Hope.

Anyone who lives near Bear, Delaware, is encouraged to join us; the more the merrier and the guiltier I’ll feel if I don’t show up. Contact the Delaware MS Society at 302-655-5610 for more information.

Cathy from Wisconsin (Navigating the Journey of MS blogger) is featured in the Spring 2010 edition of MS Focus, the Multiple Sclerosis Foundation’s magazine. Her article, “European Vacation with and Exacerbation: It Takes Determination” is very encouraging, especially to people like me who have become reluctant to travel. It’s a nice article with lots of beautiful pictures. Just a plug, Cathy is also the owner of the MS Shoppe, an on-line store to get cooling products and cool T-shirts (I own a few). Go to http://www.themsshoppe.com/

Be sure to read your Summer 2010 NMSS Momentum magazine’s Research Now section for updates on some of our prior chat topics including CCSVI, Vitamin D, and red wine. Okay, we just drink virtual red wine… (PS – see quote from my writing on page 65).

NEXT CHAT: MAY 28

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Delaware Area MS Chat Friday! (Don't have to live in Delaware to join)

2010-05-13T11:14:00.000-04:00

Delaware Area MS Chat
Friday 14 May, 7:00 - 9:00 pm
Energy Conservation and MS (suggested topic)

How do you manage your energy? Can you share any tips? Have you received guidance from occupational therapists that have helped you to conserve energy?

I will share changes that have helped me, and will pass along information from MSAA’s Energy Conservation and MS webcast that is scheduled for May 13.

Of course, we WILL chat about birds. The chat topics are just guidelines, so feel free to bring your questions or topics to discuss.

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

Newcomers are always welcome and you don't have to live in the Delaware area to join. If you are uncomfortable typing, you are still welcome to come and watch the conversation.

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.
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More Bird Photos

2010-05-11T16:51:00.001-04:00

More fun with the BirdCam - click on the photo to see it better.

Tufted Titmouse with mealworms

Crow taking flight

Female house finch

My First Day on the Job

2010-05-08T14:02:00.000-04:00

Yesterday, I joined the Nest Watch program, which is a citizen-science project developed by Cornell Lab or Ornithology in collaboration with the Smithsonian and the National Science Foundation. Reporting the status of bird nests engages birders like me who want to learn more about birds, and provides important data that will give scientists an understanding of reproductive success on a large scale, which helps them understand environmental impacts.

This is not a task or responsibility to be taken lightly. There is a code of conduct and you have to pass a quiz to show that you will be responsible in your work. I did a bit of reading about procedures, minimizing impact on the birds, predator awarenessyesterday, passed the test and am now a Certified Nest Watcher, complete with certificate suitable for framing.

Needless to say, I was so excited to go to work today. I waited until the afternoon, I saw the female leave the box and I took my camera and a stool out to the box. I made noise as I approached, I knocked on the box to give anyone still inside a chance to leave. Knowing how bad my memory is, I decided to photograph the inside of the nest box. This seemed like the easiest way to monitor the nest with little impact to the birds. I can get in and out quickly.

I snapped a photo, locked the roof, then took a circuitous loop back to the house, per instructions.

When I finally looked at the photo, I was stunned! Mamma didn't leave the box - she was still inside. I wonder what she thought of the strange evil eye that was poking in the roof of her house?

I will surmise that she is sitting on eggs. I won't check again for a few days, per instructions. So stay tuned for more exciting adventures of "the bumbling nest watcher."

Zen Deck

2010-05-07T19:58:00.000-04:00

It's amazing how a little change can transform a space, which can transform an attitude.

We added a water fountain to the back deck. A simple fountain from the hardware store, but its shape and coloring appealed to both of us.

I sat on the deck like I have before, but this time it felt like a new place. It felt different, more serene, cooler, calmer.

And so did I.

Inertia? Not the Hummingbirds - they're back!

2010-05-04T18:49:00.000-04:00

The Law of Inertia says something like an object at rest will stay at rest unless another force acts on it. Or something like that...

So, am I a body at rest or just lazy?
Am I out of energy or do I have an excess of inertia?
Did I do too much today or am I making excuses?

I don't know. But I do know that the HUMMINGBIRDS are back in town (feel free to sing something like, "The Birds are back in town, ..." LOL!)

I have no pictures of this years' hummers, so you are welcome to revisit an old post where I captured a movie of a hummingbird in motion.

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Bluebird Pictures

2010-04-30T21:11:00.000-04:00

This WebCam from Wingscapes has proven to be a good investment! Check out these bluebird pictures.

Honey, are you home?

King of his castle

Kudos to The Husband

2010-04-29T09:00:00.003-04:00

Congrats to Tedd Cocker (aka "the husband") for the recognition award he received from the Friends of the Historic Riverview Cemetery at their annual meeting on 26 April 2010. It was "In recognition of your gifts of time helping people, honoring the dead, naming the veterans, mapping the cemetery, researching the records, ...protecting the monuments, and inspiring us to do our best!"

For more information about Historic Riverview Cemetery, go to their website at http://www.riverviewcem.com/

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Wheeler's Wobblers Official Team Photo, minus a few members

2010-04-28T16:02:00.001-04:00

The Wheeler's Wobblers MS Team raised $3,767! Some last-minute donations are still trickling in. This is the BEST team ever! Thanks to everyone who walked and donated.

Yes, that's Tedd in the back wearing an orange pom pom on his head. We were just trying to get into the Orange spirit.

My T-shirt says, "I do the MS Walk everyday" (available at the MS Shoppe at http://www.themsshoppe.com ) and you can see my JW flag that Terri in Colorado made for me. Thanks, Terri!

Liz was missing from the official photo so Paul took one at the second rest stop. You can see more on Facebook.

Unfortunately, we didn't get a photo of Paul . :-(

YES, we plan to do this again next year, but I will use a scooter.

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Birdcam

2010-04-27T18:23:00.009-04:00

For the bird watching fans, I've got great news: I got a BirdCam from Wingscapes (I bought it thru Amazon.com).

This camera can be set up outside and will snap a photo when the sensor detects motion. I was so looking forward to seeing my very first photo, but it was not what I expected:

Oops...

Here is a more successful picture of a mockingbird.

I'm still learning how to set this up, so stay tuned for some decent pix in the future (I hope).

Thanks Chatters for an Interesting Chat!

2010-04-24T11:46:00.000-04:00

Thanks to the five chatters who joined the Delaware Area MS Chat last night. As always, it was an open, candid, and engaging conversation. And FUN.

We talked about Low Dose Naltrexone (LDN),

MS Walks, the challenges around creating a successful MS Walk Team, ideas for next year's teams, Seasonal Affective Disorder (SAD), and Skype (the web cam application that lets you see and talk to someone over the web).

Oh yes, we did talk about alcohol. And food.

Just another night in the chat room! I hope you can join us for the NEXT CHAT: 14 May 2010. Same time, same place.

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Delaware Area MS Chat Friday

2010-04-22T09:29:00.000-04:00

Delaware Area MS Chat
Friday 23 April, 7:00 - 9:00 pm
Topic: MS Walks and anything else you want to chat about

Two of the five Delaware MS Walks were held this weekend: Wilmington Riverfront and Dover. Did you walk, volunteer, or form a team? Do you have a walk coming up in the next few weeks? IF YOU DO NOT LIVE IN DELAWARE, you can still tell us about your walk plans.

We’ll chat about this PLUS anything else that comes up (like CCSVI?). The chat topics are just a suggestion.

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

Newcomers are always welcome and you don't have to live in the Delaware area to join.If you are uncomfortable typing, you are still welcome to come and watch the conversation.

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.
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And Now, the Rest of the Story

2010-04-19T13:04:00.000-04:00

Now that the MS Walk in Wilmington, Delaware, is over, I've had a chance to reflect back upon that day. Unfortunately, I can't remember much about it. It was, after all, two days ago.

Although physically I was able to walk about 1.5 miles with minor foot drop and leg spasms, the invisible symptoms were raging. People might have noticed my right foot dragging, or my slight limping, or me leaning heavily on the rollator.

But I suspect no one noticed the brain fog swirling around me putting me in a puddle of confusion. I was unable to remember anyone's names, except for Tedd's, and could not introduce my teammates to each other without a lot of brain energy expenditures.

When I was walking, I was unable to carry on a conversation. When I was fighting the wind and trying to hold onto my hat, I couldn't walk or talk. Tedd showed me a map suggesting a short cut, and all I could do was stare at the map wondering what it was. I just told Tedd that I would follow him. He understood. I hope.

On the way out, I met Chris Coons, our County Executive and Senate hopeful. I have met him before and have found him to be very approachable and interesting. I was trying to have an adult conversation when my brain synapses fried and I could no longer complete full sentences or select particular words. Darn! I hate it when that happens with someone who does not know my MS history. All I can hope is that he figured it out since I was clinging to a rollator at an MS walk.

I apologize to anyone I saw that day who might have felt slighted that I could not remember your names or remember how I know you. But I suspect that you've all forgiven me. If not, I won't remember anyway.

I found a good blog post about "socially disabled" people such as myself. Check it out at
http://ms.about.com/b/2010/04/13/are-people-with-ms-socially-disabled.htm

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IMAGE from Brain Flames

Report from the MS Walk Wheeler's Wobblers

2010-04-18T11:56:00.001-04:00

Thanks to everyone who made this walk and this team such a success. The Wheeler's Wobblers raised over $3,500! We had eight team members at the start (Donna, Ed, Angie, Neal, Liz, Beth, Tedd, Joan), and one team friend (Paul) joined us at the second rest stop so we made him an honorary team member (alas, I have no photos of Paul).

We plan to do this again next year, so start saving your vacation time to join us - we had four people from out of town, so don't be afraid to travel to Delaware. One stranger asked if she could be on our team next year because her MS is progressing and she's wobbling more and thinks she'd like to wobble with us, so I think the team name was definitely appreciated.

I'm pleased that my body cooperated for most of the walk, but sorry that the wind didn't. The "Wheeler's Wobblers" sign on the front of my rollator and the JW flag turned into sails and I found myself pushed backwards. Also, I was happy that I wasn't penalized for taking every short cut I could find. I probably walked about 1.5 miles out of three.

I caught up with a number of friends from MS Support Groups, including Linda from the team "Linda's Loafers." It was a supportive event and definitely an accessible walk.

See you next year, in the meantime "Wobble Well" everyone!
PS - more photos are posted on Facebook.

UPDATE: PHOTO CREDITS: PAUL WEAVER and TEDD COCKER
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How to find the Wheeler's Wobblers Team Captain at Saturday's MS Walk

2010-04-15T19:30:00.000-04:00

Need to find me on Saturday at the Wilmington, Delaware, MS Walk at Frawley Stadium? Look for this contraption.

Tedd, aka the Husband, "pimped my ride" and spiffed up the rollator. He created the Wheeler's Wobblers sign, and got creative with tie wraps.

Terri O., a dear friend who now lives in Colorado and I miss dearly, made the JW penant years ago when she and her husband did an MS Walk with Tedd and me in Columbia, Maryland. It is sitting high on the rollator.

Thanks to Karen K., the MS Walk Teams Coordinator, for sending me the MS tote bag and socks after I whined a bit. Thanks to the Embroidery Store at Christiana Mall for giving me a discount on the Wheeler's Wobblers hats.

You should have no trouble finding me on Saturday! - Joan

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Wheeler's Wobblers

2010-04-14T11:28:00.000-04:00

To understand this team name, you need to know that my last name is Wheeler.

MS Walk Fundraiser in Wilmington, Delaware, is this Saturday. I formed an MS Walk Team is called Wheeler's Wobblers. Our motto is "Wheelers wobble but they don't fall down thanks to your support!" And I'm grateful to all the support I've received for this event. There's still time to donate to this good cause. Simply go to THIS PAGE , which is http://main.nationalmssociety.org/goto/Joan.Wheeler

Thanks to everyone for their continuing support!

Joan
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Home Able Funds for Newark, Delaware

2010-04-13T20:05:00.000-04:00

FROM Debra Veenema, Delaware National Sclerosis Society:

"I am pleased to tell you that we (NMSS-DE) recently received funding from the City of Newark for our Home Able Program. The Home Able Program provides financial assistance to individuals living with MS who need to have their home modified to improve accessibility and independence. Some examples of possible modifications are:

- Widening of interior doorways
- Installation of grab bars
- Construction of ramps or lifts
- Bathroom modifications

If you currently own a home within the city limits of Newark and have a home modification need of this nature, please contact Carol Cave at 302-655-5610 or Carolyn.cave@msdelaware.org for additional information. These funds are limited so please contact us as soon as possible!

Debra
Debra Veenema
Programs and Services Director

Bull's Eye!

2010-04-12T14:03:00.000-04:00

Last week, during our hot spell, I scratched my leg and pulled off what I thought was a dangling scab. When the scab started to move, I realized that I had pulled a tick out of my leg.

A few days later, a very tiny bull's eye mark appeared at the site of the bite (a sign of Lyme's disease). Yes, I saw a doctor today. Yes, she confirmed that it's a bull's eye. Yes, she confirmed that I was bitten by a tick (I still had the tiny beast locked away for dissection if needed).Yes, I started on antibiotics.

No, I do not have any symptoms. No, I don't have fever, itching, sore throat, abdominal problems, joint aches. No, the spot's not itchy and it's not very big (maybe a few centimeters across). No, I don't know where the tick came from or how I got it.

Have a great day, everyone, and watch out for ticks and bull's eye rashes!

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For Couples Dealing with MS: Jumpstart Your Relationship

2010-04-12T13:50:00.000-04:00

I received this notice from MSAA Life Coach:

Jumpstart Your Relationship Teleclasses

Reclaim Your Well-Being is a teleclass series for couples who are looking for solutions to the emotional havoc brought on by MS. In this series, scenarios of couples living with MS will demonstrate how couples can effectively manage some of the emotional backlash triggered by common MS symptoms.

Experts from the National MS Society and Can Do Multiple Sclerosis (formerly The Heuga Center for Multiple Sclerosis) will review symptoms and treatments, as well as skills for couples to talk about and solve some of these very difficult problems.

Teleconferences are 90 minutes each week for 6 consecutive weeks
Space is limited. Click HERE for details.

Program Dates:

Thursdays: April 15 – May 20: 6:00 - 7:30 PM ET
Tuesdays: June 1 – July 6: 7:00 - 8:30 PM ET
Thursdays: July 22 – August 26: 9:00 - 10:30 PM ET

To get started, call 1-800 FIGHT MS (option #1) and tell an MS Navigator you want to sign up for the teleclass series you are interested in. Or you can send an email to couplesprogram@nmss.org.

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Enjoyed the Masters Golf Tournament

2010-04-11T18:59:00.000-04:00

No, I'm not a golfer. I agree with Mark Twain that "golf is a good walk spoiled." I've never understood the desire to get a little ball in a little hole all the way down there by whacking it with a stick.

But I enjoy watching golf on TV. I have a secret crush on Phil Mickelson, but don't tell his wife (who is battling cancer). I was touched when he kissed Amy and hugged his kids when he won.

"So why this post?" you wonder. I love LISTENING to the Masters. I'm trying to learn to identify birds by their songs, and The Masters offers a great opportunity to practice. While the commentators are chatting about birdies and eagles, I'm listening to the chirps and trills in the backround. So far I've been able to identify an Ovenbird (I've never seen one), Tufted Titmouse, Cardinal, Woodpecker, Blue Jay. I'm still learning, and it's a lot of fun!

Have a good week, everyone!

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MS Chat Followup Info: Low Dose Naltrexone

2010-04-10T14:40:00.000-04:00

Thanks to the seven chatters who visited the Delaware Area MS Chat last night.
NEXT CHAT: April 23.

"Open Mic" night seemed to work out very well. We talked about neurologists in the Delaware area, scooters, and handicapped seating in public spaces like movies and concerts. We touched on CCSVI and collected a few questions to submit for the upcoming webforum.

Lose Dose Naltrexone (LDN) received the most attention, thanks to Taggie, and here is follow-up data for those of you who are unfamiliar with it.  LDN is a drug that has been credited with helping to improve many MS symptoms. The NMSS released a paper in March 2010 (found HERE) stating that in a clinical trial involving 60 people with all types of MS, LDN improved some quality of life, mental health, and pain symptoms. This paper has been accepted by the Annals of Neurology, abstract found HERE. There are more clinical trials in the works, and you can read about them HERE. LDN is being used throughout the world, and you can see the global tracking database HERE.

Because LDN is "off label" for MS, it won't be covered by insurance but is relatively cheap. You can NOT take it with Avonex, Betaseron, or Rebif, but you can take it with Copaxone. There are other drug interactions to be aware of (like cough syrup), so be sure to do some research before asking for a prescription. LDN must be obtained through a compounding pharmacy because the regular dose is much higher than the low dose used with MS patients. In Delaware, a compounding pharmacy is the SaveWay Pharmacy in Newark (Albe Drive, off of Old Baltimore Pike).

Taggie credits it with helping to relieve many of her symptoms, and I thank her for sending me so many links to credible informational sites.  I suspect she'd love to tell you more if you have any questions.

Here are a few more links if you want additional information:
Low Dose Naltrexone Home Page is HERE
Julie's LDN Journal that tracked her experience is HERE
Video from 2008 CBS news report is HERE

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Delaware Area MS Chat Friday!

2010-04-08T09:21:00.000-04:00

Delaware Area MS Chat
Friday 9 April, 7:00 - 9:00 pm
Open Mic ("mike") Night

This will be an open chat – whatever you want to talk about.

A few topics of interest could be:
CCSVI - webforum coming up April 14
MS Walks in April– are you participating?
Latest heat wave – knocked me out, how about you?

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

Newcomers are always welcome and you don't have to live in the Delaware area to join.If you are uncomfortable typing, you are still welcome to come and watch the conversation.

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.
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CCSVI Webforum - What could it mean for people with MS?

2010-04-07T11:57:00.000-04:00

I registered to attend this webforum. Be sure to submit questions in advance if you are interested. -Joan

CCSVI, or chronic cerebrospinal venous insufficiency, is the exciting new topic in the MS world. With CCSVI, the veins that drain blood from the brain are blocked or narrowed. Dr. Zamboni from Italy discovered that, in patients with MS, this condition is common and believes that this is the cause of MS lesions. He has been doing procedures to open the veins, such as angioplasty or inserting stents. I have been monitoring the CCSVI Tracking website and results seem to be mixed so far, but further study is on-going.

On April 14, 12 p.m. eastern time, the National Multiple Sclerosis Society and the American Academy of Neurology (AAN) will hold a live 90-minute web forum for journalists and the general public on the topic of chronic cerebrospinal venous insufficiency (CCSVI) and what it could mean to people living with multiple sclerosis. The event will cover what is currently known about CCSVI and what yet needs to be determined in order to establish what its relationship to the MS disease process might be and whether surgical intervention can improve the disease course. The live Web forum will feature the following panel:

•Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
•Dr. Robert Zivadinov, Associate Professor of Neurology at the University at Buffalo, State University of New York
•Dr. Andrew Common, Radiologist in Chief at St. Michaels Hospital, University of Toronto, Ontario, CA
•Dr. Aaron Miller, Professor of Neurology and Director of the MS Center at Mount Sinai, New York, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society

Register now online (12 p.m. ET April 14) and ensure your system will support the live Web forum player. Questions for the panelists can be submitted online in advance of the live Web forum through Facebook or Twitter, or in real time through the live Web forum player. The recorded webcast will be available online after the event for those who are unable to attend.

Thanks!
_______________________
Beth Clark
National Multiple Sclerosis Society
Broadway Station
900 South Broadway, Suite 200
Denver, CO 80209

We Might Have Sold Our House!

2010-04-04T13:17:00.001-04:00

A lovely young couple came to visit our house today.

She likes the view from the window.

Of course, they had to discuss it with their agent. Not sure if they'll want to move in. Stay tuned!

Bloggers and Chatters Meet Face to Face!

2010-04-01T21:37:00.000-04:00

From left to right: Jen (of MS Strength blog), Sonia (a regular at the Delaware Area MS Chats) and Lisa (of Brass and Ivory blog among others) joined me for the first annual Mid-Atlantic Bloggers and Chatters Lunch at my house. Okay, maybe I just made up the name, but we had such a good time we decided we will get together again. This is the first time some of us have met in person, but it felt like we grew up together. Web interactions are great, but will never replace the connections that come from sharing a meal, a drink, and a laugh in person.

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Delaware Area MS Chat Friday! Spring Forward

2010-03-24T18:01:00.001-04:00

Delaware Area MS Chat
Friday 12 March, 7:00 - 9:00 pm
Spring Forward

In the last chat, we had fun bragging about ourselves and others. Let's keep up the positive energy by identifying things that keep us 'moving forward'.

For example, I formed an MS Walk Team (Wheeler's Wobblers) and as a result I am discovering great cheerleaders. Those cheerleaders and friends keep me going even on my worst days.

One person on the national poster for the MS Walks is our own chatter "Denver" who keeps moving forward through yoga. Other chatters use music. What keeps you moving forward on the days when you just can't get out of bed? Can't think of any? Make something up! This should be fun.

To attend, just click HERE or click on the coffee cup in the right margin, then follow the directions.
Newcomers are always welcome and you don't have to live in the Delaware area to join.
If you are uncomfortable typing, you are still welcome to come and watch the conversation.

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.
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Delaware Paratransit Public Hearing Workshops Scheduled

2010-03-15T13:54:00.000-04:00

Delaware Transit Corporation will be conducting Public Hearing Workshops to obtain comments on proposed changes to DART First State Paratransit Service to become effective July 1, 2010.

Read a Summary of Proposed Changes HERE

Sussex County: Monday, March 22, 2010 10:00 am – 1:00 pm
Easter Seals – 2nd Floor Conference Room, 22317 DuPont Hwy, Georgetown

New Castle County: Tuesday, March 23, 2010 10:00 am – 1:00 pm
DART First State Admin Office – Cafeteria, 119 Lower Beech St, Wilmington

Kent County: Thursday, March 25, 2010 10:00 am – 1:00 pm
DelDOT Admin Bldg – Farmington/Felton Room, 800 Bay Rd (US 113), Dover

People unable to attend may send their comments to:

DART First State Public Hearing
900 Public Safety Blvd, Dover, DE 19901

Comments can be also be emailed through DART’s website at www.DartFirstState.com/publichearing. All written and e-mailed comments must be received by April 2, 2010

I Hate to Brag, But This Was a Great Chat

2010-03-12T21:20:00.000-05:00

I was a little worried when no one showed up for the first hour. I was about to shut down, then four chatters popped in. And what a wonderful group it was - we bragged about each other! It was so easy to do because these are great people. And it felt wonderful. (Just in case you missed the announcement, the topic of tonight's chat was "Bragging Rights.")

Thanks, chatters, for coming out to cheer each other on!

Next chat: March 26
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Delaware Area MS Chat Friday! Bragging Rights!

2010-03-11T09:42:00.004-05:00

Delaware Area MS Chat
Friday 12 March, 7:00 - 9:00 pm
Bragging Rights!

Having a disabling chronic disease does not stop us from contributing to society in positive ways, although they might be very small ways.

When you don't feel well and your future plans have crumbled due to multiple sclerosis, it's hard to think that you have value, but you do. So let’s band together for a night to brag about ourselves and cheer for each other.

Come to this chat and share the accomplishments you are really proud of. It might be as simple as getting out of bed and getting dressed. Hey, just logging in to the chat to be with other people is an accomplishment worthy of bragging!
To attend, just click HERE or click on the coffee cup in the right margin, then follow the directions.
Newcomers are always welcome and you don't have to live in the Delaware area to join.
If you are uncomfortable typing, you are still welcome to come and watch the conversation.

If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.
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Facebook Killed the Blogging Stars?

2010-03-08T11:44:00.000-05:00

In June 2007, I began publishing my experiences with multiple sclerosis and other topics via this blog. I discovered many other blogs with postings that were thoughtful, interesting, and informative. It was an expansive world for me.

Now, most bloggers (including me) have pages on Facebook or Twitter.

But I've noticed that since I began using Facebook, I don't read as many blogs as I used to. And I've reduced the postings on my blog. It's so much easier to type "March is National Multiple Sclerosis Awareness Month" in a little box on Facebook than it is to create a well-written essay on the topic, including the significance of this month and a list of activities to raise awareness.

With Tweets being limited to 140 characters, and Facebook's "What's on Your Mind" box taking no more than a few sentences, my social networking world has become staccato. Gone are my days of writing about how bird watching sooths my soul and lifts my spirits when my multiple sclerosis fatigue has pushed me down into the floor for days on end. Instead I write, "I'm really tired and all I can do is watch birds."

Has Facebook killed the blogging world? Has Twitter reduced us to a bunch of twits who just want to know that you are in aisle three of the grocery store instead of how you pull yourself up when you've been knocked down? No where on Facebook do I read about important things like breakthroughs in medicine; rather I read about everyone's lucky number or what animal they need for their farm game.
Facebook and Twitter have made me lazy and numbed my brain!
Remember the song "Video Killed the Radio Star" by the Buggles? Some of the words are
Video killed the radio star.
Video killed the radio star.
In my mind and in my car
We can't rewind we've gone to far
Ironically, this was the first song to be played on MTV. Inspiration for this song came from J.G. Ballard's short story The Sound-Sweep, in which the title character, a mute boy vacuuming up stray music in a world without it, comes upon an opera singer hiding in a sewer. As all music has been outlawed and destroyed, the opera singer is obsolete. Reference here
Are bloggers becoming obsolete? Are we living in a world were deep thoughts are becoming obsolete?
Here's a YouTube reminder of the song (see box below). If you don't see anything below, then you need to go to my blog (shortinthecord.blogspot.com) to access it.
Too much work to go to my blog? Then I think I've made my point!

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Thanks for Another Interesting Chat

2010-02-26T21:43:00.000-05:00

Thanks to the seven people who showed up for the chat! All were wonderful cheerleaders, encouraging me with my plans to start an MS Walk Team.

We talked about MS Awareness Week coming up in March, and discussed who is planning to volunteer. A few people expressed interest in helping at the tables that will be set up at YMCAs and other places. Be sure to contact Marie or Debra at the NMSS office at 302-655-5610. And thanks to everyone who encouraged me to move forward with my MS Walk Team "Wheeler's Wobblers: Wheelers wobble but they don't fall down."

Sonia shared information from the recent MS Telecon on traveling with MS, and it appears that cruising seems to be the best option for people with fatigue. Good tips, thanks Sonia!

Thanks to everyone who came to support each other on such a cold and windy night.

Next chat: March 12th.

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Research Study for Speech, Language, or Cognitive Changes

2010-02-26T21:13:00.003-05:00

I have signed up for this study because my speech and cognitive functions are declining.

Research Opportunity – Make an easy $20!

For individuals who have speech, language or cognitive changes due to MS

Researchers at the University of Washington are conducting a study exploring the impact of various health conditions on participation in everyday communication activities (activities in which you are talking to people). We are currently seeking individuals who have been diagnosed with multiple sclerosis.

Participants in this study will be asked to complete a set of questionnaires. You may fill these out at home on your own schedule. We anticipate that it will take you about an hour to complete all the questionnaires. You can take breaks as you need to and complete them at a pace that is comfortable for you. You may fill out these questionnaires online OR on paper forms that we will mail to you.

You are eligible to participate if you are an adult age 18 years or older. You must have been diagnosed with MS at least three months ago. You must be living in the community (e.g. at home or in assisted living). Nursing home residents are not eligible for this study. You must use speech as your primary method of communication. You may use writing or augmentative devices to help you communicate, but most of your communication must be by speaking. It does not matter what kind of treatments you have had for your condition. We seek racial and ethnic diversity. Minorities are strongly encouraged to participate.

You will receive $20 for completing the questionnaires (your choice of a $20 check or $20 gift card to Amazon.com). Participation in this study is voluntary. You are free to stop your participation at any time. Your participation is not related to any medical care you are receiving at any facility. Your participation is not related to your involvement in any support or advocacy groups.

More information about this study is available at: http://staff.washington.edu/cbaylor.

If you have questions or are interested in participating, you may contact us using the contact method you prefer:

Email: commpart@u.washington.edu (please remember we cannot guarantee the confidentiality of information sent via email)

Phone: 206-221-3563 (you may leave a voicemail with your mailing address if you would like a questionnaire mailed to you)

Mailing address: Carolyn Baylor, Ph.D., Box 356490. Dept. of Rehabilitation Medicine, University of Washington, Seattle, WA 98195.

Thank you for your help with this research.

Carolyn Baylor, PhD, CCC-SLP
Acting Assistant Professor
Department of Rehabilitation Medicine
University of Washington
Box 356490
Seattle, WA 98195
email: cbaylor@u.washington.edu
phone: 206-221-3563