Want to Wish Me a Very Happy Birthday?

In honor of my upcoming 54th birthday (yes, I'm being honest about my age), please consider making a donation to my MS fundraising efforts.  For the fourth year in a row, the Wheeler's Wobblers MS Walk Team will participate in the Wilmington, DE, MS Walk to raise money for research and programs.  Wheeler's Wobble but we don't fall down thanks to YOUR support!


I've struggled with MS for over 27 years, one-half of my life, and have seen breakthroughs in treatment options.  I am benefiting from one of the recently-approved MS disease modifying therapies, and hope to be able to actually walk in the walk this year.

But there is still more to do.  These therapies are not cures, and don't repair existing damage to our brains or spinal cords. 

To make a tax-deductible contribution via credit card, go to MY WALK PAGE and select "Donate to Joan."  Let me know if you prefer to donate by check, and I'll send you a self-addressed stamped envelope.

Any donation of any amount will be greatly appreciated. Even small donations make a difference.

Thank you and Wobble on!

YouTube Therapy: Making MS Manageable with the World Wide Web

This Guest Post from Katie Brind’Amour provides a broad look at the variety of on-line videos to help our myriad MS symptoms.  Thanks, Katie, for such a good overview.

Katie Brind’Amour, MS, is a Certified Health Education Specialist. She is a freelance health and wellness writer for sites such as Healthline.com and WomensHealthcareTopics.com. In her spare time, she’s chipping away at a PhD in Health Services Management and exploring the food and cultural scene of Columbus, Ohio.

Although progress in the treatment of MS has been slow, individuals with this condition can at least be grateful for one of the best free resources now available: the Internet. This venue for at-home treatment clearly should not replace treatment advice from your own physicians, but things as simple as YouTube videos can offer a new world of simple symptom improvement advice that can improve your daily life. 

According to Healthline.com, the typeof MS  you have or the degree to which your MS has progressed will impact the type and severity of symptoms you experience. Always remember that your own at-home treatments should be tailored to the severity of your condition—start small, and work your way up!

YouTube Videos to Address Multiple Sclerosis Symptoms

Use YouTube advice to get a handle on bladder control problems. These Pelvic Control Tips
offer viewers five strategies for keeping it in. By doing exercises daily, you can both prevent some bladder problems and improve symptoms you may already have.

Get your balance with simple home-based exercises. For those in early stages of MS or with periods of total remission, more advanced balance exercises may be appropriate. For those with more difficulty balancing or a more advanced stage of the condition, balance techniques designed for seniors  may be more comfortable. Regardless of your ability level, start all exercises close to a bed, countertop, or wall that you can use for support and stability in case of a totter or fall. Check out the video instructions for guidance!

If you want to avoid losing your hand-eye coordination as long as possible, YouTube has an answer for that, too! Try early preventative exercises (that require agility) to hone your hand-eye skills.  Start with a basketball (sitting, if needed), and work your way up to the tennis ball as shown. For those with more difficulty, try one of the numerous videos for children  to rebuild your hand-eye coordination. Stringing beads or foam onto a pipe cleaner can be tough at more advanced MS stages!

Another problem that commonly accompanies MS is depression. Use YouTube videos for a little meditation-like pep-talk, or learn tried-and-true strategies for fighting depressive symptoms

naturally. If fatigue is a problem for you, consider searching out freebie videos like this little clip of using yoga to fight fatigue.   

Finally, we all know that MS can negatively impact both concentration and memory. Although options abound, try this video to learn a single exercise  that may improve your ability to concentrate during a task. Memory techniques may be good to mix up from time to time, but advice on starting to improve your memory  can be key to getting your at-home training off the ground.

No matter what you choose to focus on—just one symptom or a bit of everything—it seems like a bit of a blessing to be living in such an electronic age. Take advantage of everything YouTube has to offer for making your at-home preventive efforts as effective as possible!

Written by Katie Brind'Amour

Wheeler's Wobblers MS Walk Team Fundraiser 12 March at Ruby Tuesdays

Treat yourself to a nice lunch or dinner and join the Wheeler's Wobblers MS Walk Team to raise money for MS Research and Programs.

We've partnered with Ruby Tuesdays restaurants in the Delaware, New Jersey and Pennsylvania tri-state area for a big fundraiser this year on March 12, 2012. 

Print out this coupon:  COUPON
Then take it to your favorite Ruby Tuesdays for lunch or dinner, and 20% of your bill will be donated to our team. This is a part of MS Awareness week in March.

Six Ruby Tuesdays locations in Delaware:

• 928 Bear Corbitt Road (off Rt. 40), Bear, DE
• 474 West Main Street, Middletown, DE
• 4737 Concord Pike, Wilmington, DE (Concord Mall)
• 4732 Limestone Rd., WIlmington, DE (Pike Creek)
• 719 Christiana Mall #607-A, Newark, DE
• 19340 Lighthouse Plaza Blvd., Rehoboth Beach, DE

Click HERE for list of participating restaurants in NJ and PA.

As we say, "Wheeler's Wobbler but we don't fall down, thanks to your support!"

Laughter as Medicine

Laughter is the best medicine, so they tell me.  This certainly did make me feel good - click on the picture below to see the video.

"Fatigue" by Laurie Clements Lambeth

This is a recent post  by Laurie Clements Lambeth on the National MS Society's blog, and really hit home with me. If you have MS fatigue, you will probably resonate with her thoughts, also.  She tells about how fatigue has been a symptom for so long, it just seems like the norm. 

Fatigue is a symptom so difficult to explain (but Laurie does a good job), and a problem that I've had for so long that I no longer remember what it was like to be without it.  My new normal, I guess. 

Read her post at this link:

http://blog.nationalmssociety.org/2012/12/fatigue.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+NationalMsSocietyBlog+%28National+MS+Society+Blog%29

MS and Me - A Retrospective (Re-print)

As requested, I've reposted my story with a slightly larger font.  You can follow the entire book by following the links at the bottom of each chapter.  Joan

MS and Me – A Retrospective

I wake up one morning after a refreshing night’s sleep, fumble to find my glasses, stand up and walk to the bathroom for a morning shower. After dressing I joke with my sweetheart at breakfast and drive to work. I walk from the car to my desk, greeting people on the way in. I tease some guys because the Steelers had won their last football game and they are Baltimore Ravens fans. I check voice messages and e-mails, and then meet with my manager and the financial people, pouring over some challenges in the budget. I write a weekly report and draft subcontract agreements. I review new procedures for status reviews. An hour later, I am slouching in my chair. I can’t concentrate on my work and have trouble speaking and thinking clearly. When I try to walk to the printer, my leg is tingly and weak and I am unsteady so hold on to the walls to get back to my desk. I feel like heavy weights are pressing down on every part of my body and it is difficult to move or see or walk or comprehend anything that people say to me. I grab my fold-up cane that I leave in my drawer for times like this and leave work early while I can still drive. I manage to open a can of Vienna sausages to eat and, in a state of extreme exhaustion, lay down on the couch for the rest of the day and night. I’ll try life again tomorrow. Maybe it will be better.

Oh don’t worry, it’s okay. I’m used to it.

The First Attack – 1986

The year was 1986 and the US was still in the Cold War with the Warsaw Pact nations so the Russians were the bad guys. I was married and living with my husband and our dog in a duplex in Severn, Maryland, a small home with no basement but a wonderful back yard. The space shuttle Challenger had exploded in January, the worst nuclear disaster had occurred in Chernobyl, Russia, in April. Halley’s Comet was in the sky, and Reagan and Bush (Senior) were in the White House. Corey Aquino had won election in the Philippines. Top movies were Top Gun, Crocodile Dundee, Star Trek 4, and Ferris Bueller’s Day Off. 1700 people died in Cameroon from toxic gas that bubbled up from a quiet volcanic lake. A postal employee gunned down 14 employees and himself, thus starting the term “going postal” for someone about to lose control in a big way.

I had been out of the Air Force for five years and was working for RCA in Hanover, Maryland, and my desk was in the basement of a Department of Defense agency in Ft. Meade. My desk was a steel gray monstrosity jammed up against two other desks all in one row. We were so crammed in the small office that some employees had to get up out of their seats to open their drawer. I started with RCA as a computer operator working shift work on one of the first computer systems that used networked ‘mini’ computers. Mini computers, which were the size of coat closets, were new, and the idea of networking nine together to process data was a unique concept. I had moved from computer operator to configuration manager where I was responsible to ensure that the computer code was baselined, changes tracked and documented, and tested before being put on a live mission system.

One day, I felt just a little light headed. I didn’t think much about it, but it lasted for a few days. Because I worked in a Government building I was allowed to go to their medical center. I took a break one day at the urging of co-workers and ventured to the first floor med center and waited my turn to see a doctor.

Two doctors walked into my room and as they talked to each other I suddenly flashed back to Germany where I was stationed as a Czech linguist with the Air Force. I didn’t have a television so listened to Armed Forces Radio Network for entertainment. Once a week, we heard old radio shows like Mystery Theater (with “The Shadow”) and comedy shows including Burns and Allen and the "Bob and Ray-dio Show" featuring two guys who were pretty clueless and silly and very funny.

After listening to these two doctors banter for a few minutes, I was convinced that “Bob and Ray” were seeing me. With only asking me what was wrong, one looked up my nose and said, “Oh that’s your problem.” Then they started bantering again. They gave me antihistamines and sent me off scratching my head, wondering about the quality of medical treatment for the nation’s defense department employees who were keeping the US safe from those pesky Communists.

The antihistamines did not make me feel better, and the lightheadedness turned into full dizziness. Much of the next few months are fuzzy because I became so dizzy and sick, but I remember being on the phone with Mom and crying about not being able to eat. I was alone because my husband, Tom was working for the Johns Hopkins Applied Physics Lab collecting and analyzing telemetry from missile firings, and was working in Florida. Next thing I knew, Mom and Dad had driven from home in Greensburg, Pennsylvania, to stay with me. I remember Mom fixing me a sandwich with tomato, and it tasted so sweet!

I later went to a (real) doctor who referred me to a neurologist. By this time, I was in really bad shape and unable to work. I called the neurologist’s office for an appointment and the receptionist said that I couldn’t see the doctor for two months. I don’t know what I said but she replied, “Oh you sound really bad. I’ll try to get you in sooner.” I have vague memories of a CAT scan, where they injected me with some contrasting material that made me shake uncontrollably. Fortunately, Mom was there with me. No conclusive findings from the CAT scan led to an EEG. The results of the EEG were abnormal, showing that my central nervous system had gone berserk. The doctor said that either I had a virus that was attacking my CNS, or my CNS was fighting a virus. End result was a Dramamine patch that I put behind one ear.

Mom and Dad eventually went back home to Greensburg – Dad had to work and my youngest sister was still in high school. But I still could not work and ended up on disability for two months. I could not see well and I couldn’t sit up or stand. But I could lie outside on a chaise lounge and watch the birds. My neighbor would periodically check on me and bring me birdseed. I would then hang on to the fence and struggle to fill the bird feeder, then crawl back to my lawn chair and watch more birds.

Although memories from that time are jumbled, missing, or confused, I do remember Dad building a trellis. I had a tiny planter and wanted a little trellis for roses but Dad took two days to design and build a huge trellis with a shelf that spanned the entire length of the patio. It was beautiful and withstood a number of hurricanes!

I also remember lying on the couch watching TV and, because of the Chernobyl incident and the Cold War and the 41st anniversary of the bombing of Hiroshima and Nagasaki, the nation was paranoid about the Russians nuking us. There were lots of horrific nuclear holocaust movies and shows and documentaries. Watching those shows all day and not being able to stand up or go to work and spending a lot of time alone caused me to become severely depressed. I remember my husband Tom’s reaction: “Well then, just buy a gun and kill yourself now.” He had no idea how close I was to doing just that.

It was a few more months before I was able to function normally. But I did have some side effects that stayed with me for many months. I developed a tremor. Whenever I looked down at my feet I would experience a shock that ran from my neck to my feet. I had lost memories. These eventually subsided. Mostly.

One year later, Annette Funicello will start to experience MS symptoms. I won’t be paying attention, though, because I have no reason to. Or so I thought.

THIS STORY CONTINUES HERE

So I'm Playing This PC Game...

So I’m playing this PC game. 

It’s a “hidden objects” game where I go into rooms of a mansion and find hidden coins and specific objects to sell.  I get more money the faster I find things or solve puzzles. The money is used to buy objects to fix up my garden.   So I finally finish fixing up the garden, then am told that I did a great job and my garden won first prize.  But the game lets me keep playing, going into rooms to find hidden objects and rack up points.  And I keep playing, wondering what is supposed to happen next.  I know where everything is in the rooms; know how to solve the puzzles.  But nothing else happens.  I keep going into the rooms, wandering around the completed garden, but the story and challenge are over.  It’s pointless now.

So I’m living this life. 

I’ve gone through all the rooms and completed my goals.  I keep playing, wondering what is supposed to come next...

The Second Bluebird Brood

Just a few weeks after the first brood of Eastern Bluebirds left the nest, momma laid four more eggs.  When I checked today, I discovered that they had just hatched.  One baby must have thought I was the momma, and opened a huge, wide, yellow mouth for food.

    

Bluebirds are fledging!

We watched two of the five bluebirds fly away from the nest box this morning, and a third keeps poking its head out of the window.  Both the male and female are still around this year, unlike last year when the female disappeared about a week before the babies fledged (she either succumbed to predation or had a mid-life crisis and moved to Florida).


Welcome new baby!

Baby # 2 asking, "Is it safe to come out?"

MSAA Ambassador Missy Franklin Makes US Olympic Swim Team

Cool news from the MS Association of America (MSAA), headquartered in New Jersey.

	Missy Franklin Makes USA Olympic Swim Team! Missy Franklin, MSAA's Swim for MS Ambassador,  is now an official member of the 2012 USA Olympic Swim Team and  will be competing in seven events - the most ever for a US female  swimmer - in the London 2012 Olympic Games! During the USA Olympic Team Trials in Omaha, Nebraska this past week,  Missy competed in four events, including: 100m and 200m backstroke 100m and 200m freestyle Missy's time of 2:06.12 in the 200m backstroke was the fastest time in the world this year! Over the next four weeks Missy will be practicing with the US Olympic  Swim Team in preparation for the Games of the XXX Olympiad from  London, which begin on July 27 with the Opening Ceremony and  conclude with the Closing Ceremony on Sunday, August 12.  MSAA will be posting all of the dates and times of Missy's races when  they become available. As a great way to show patriotism, cheer on Missy, and help support  MSAA, we are encouraging volunteers to  host a Swim for MS Pool Party  leading up to or during the Olympics.  Be sure to take pictures or videos and post them to MSAA's Facebook,  Twitter, or YouTube pages! The Swim for MS Pool Party is an offshoot of MSAA's popular Swim for MS program.  The Pool Party is a one-day event volunteers host in their  own backyard or community pool. To begin to plan their  Swim for MS Pool Party,  volunteers first select a date,  then select an activity - such as  cannonballs, swimming laps, or  even a game of Marco Polo -  and collect pledges from  friends and family for the  activity chosen.  Sign up today by visiting msaapoolparty.org.  Once again, go Missy Franklin!  #SwimForMS Pick a Date, Join the Party, 100 Days to Make A Difference! Call or go online to learn more and register your own  Swim for MS Pool Party: MSAAPoolParty.org  / (800) 532-7667 ext. 157 /  msaapoolparty@msassociation.org The Multiple Sclerosis Association of America exists to enrich the  quality of life for everyone affected by multiple sclerosis.
	Copyright 2012 - Multiple Sclerosis Association of America National Headquarters · 706 Haddonfield Road · Cherry Hill, NJ 08002 (800) 532-7667 www.msassociation.org Learn More about MSAA's summer Pool Party | Forward to a Friend

Bluebird Soap Opera?

A bluebird pair set up house in our backyard nest box. It was love at first sight...

But then he became extremely jealous, and obsessed that no other bird show any interest in her, no matter how platonic.  He now spends most of his time, not paying attention to her or the nest, but attacking his reflection in our sliding glass door.  I taped newspaper over the door, but he is convinced that there is another bird behind the paper. He'll hang on the paper going after the tiniest of a reflection until she comes out of the house to yell at him.  Or I do.  


There are five eggs as of today. Stay tuned!

Wheeler's Wobblers Wrap Up Report

I just realized that I never reported the end result of the 2012 MS Walk in Wilmington on this blog (blame Facebook).  So drum roll please....

The Wheeler's Wobblers 2012 MS Walk Team raised $10,301!

The weather was perfect for once, and we had about 40 walkers show up.  There would have been a few more walkers but Donna (my step-daughter) was in the hospital about to deliver a baby boy (yes, a future wobbler!).  Physiotherapy Associates provided apples and registration staff (thanks Becky and her mom!).  At the start of the walk, I accepted an award on behalf of the 2011 Wobblers Team, who was a top fundraiser in the state (3rd highest) and won "Best Team Name."  So we now have a legacy of being a great team thanks to all the people who raised money and got corporate sponsors (we had nine).  We raised $200 from our Union City Grille fundraiser, which was a lot of fun as well.

So it was an exciting day and I appreciate all the hard work that everyone put in this year to reach such a high fundraising goal. It was fun, too!

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MS Walk in Wilmington, DE, on April 14th

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

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

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

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

March is MS Awareness Month!

Hello! Remember me? 

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

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


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

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

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

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

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

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Happy Holidays!

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

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

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

FDA MedWatch Alert for Gilenya

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


This was issued Dec 20 2011.

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

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

Thanks to the DE MS Society, and Bianca

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

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

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

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

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Good News - First Dose was a Non-Event

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


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


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Is This My Gethsemane?

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

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

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

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

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

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End of the Road is in Sight!

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

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

Stay tuned...

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A Right Turn in the Road

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

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

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

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Another Bump in the Road

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

The Long and Winding Road... to Gilenya

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

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

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

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

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

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

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

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

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Does a Sitting Bird Still Hum?

Landing

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

On Guard

Don't even think about approaching me!

Sticking out her tongue... Pthhh!

Balanced Imbalance

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

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

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

Welcome autumn!  

Time to Change My Direction

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

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

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

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

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


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

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Starting Over - Again

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

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


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

All was going well until…


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

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

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

Stay tuned...

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Update on Delaware Area MS Chats - CANCELLED

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

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


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


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


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

NMSS Learn On-Line Video Series on Fatigue

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

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

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