Joan ..'s Posts - Wellsphere

MS Walk in Wilmington, DE, on April 14th by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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, F ... Read on »

March is MS Awareness Month! by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 ... Read on »

Patient Who Died on Gilenya - the rest of the story... by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 medic ... Read on »

Happy Holidays! by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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. ... Read on »

FDA MedWatch Alert for Gilenya by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 app ... Read on »

Thanks to the DE MS Society, and Bianca by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 Dela ... Read on »

Good News - First Dose was a Non-Event by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 ... Read on »

Is This My Gethsemane? by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 ... Read on »

End of the Road is in Sight! by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 m ... Read on »

A Right Turn in the Road by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 ... Read on »

Another Bump in the Road by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 ins ... Read on »

The Long and Winding Road... to Gilenya by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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). ... Read on »

Does a Sitting Bird Still Hum? by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) Landing A female hummingbird has claimed sole ownership of our hummingbird feeder. She is a militaristic guardian of her territory, attacking all other humm ... Read on »

Balanced Imbalance by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 ... Read on »

Time to Change My Direction by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 h ... Read on »

Starting Over - Again by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 m ... Read on »

Update on Delaware Area MS Chats - CANCELLED by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 s ... Read on »

NMSS Learn On-Line Video Series on Fatigue by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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. ... Read on »

Measure Twice THEN Cut by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 ... Read on »

Delaware Area MS Chat: On Summer Break by Joan .. Patient Expert

Posted in: Blog Posts in Multiple Sclerosis (MS) 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 peopl ... Read on »

Joan ..

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