This study was just presented in Greece at the European Committee for the Treatment and Research in Multiple Sclerosis. Glycominds test seems able to identify what path your MS will take based on your first attack. This could help in determining what kind of treatment you would need ect. Interesting stuff.
Study results on living with MS and outside perceptions
Just came across these study results that I'm bit shocked at. I know lots of people have no idea what MS is, but with so many of us worldwide with it, why is this still happening!? It seems like any time I talk about my MS with someone, they know of someone else, or a friend of a friend or family member... but none of those people seem to really understand what the damn disease is and what it means! How is this still possible?
Good results from FTY720 Phase II trial
This shows some good results so far. Made by Novartis and is an oral drug! Finally, some that isn't injectable.
"We are excited by these full-year study results confirming the significant effect of oral FTY720 on reducing both clinical relapses and inflammatory disease activity that we first saw during the six-month placebo-controlled phase of the study," said chief investigator Professor Ludwig Kappos, MD, Department of Neurology at the University Hospital in Basel, Switzerland, "We hope that the magnitude of benefits shown in Phase II will be confirmed in the larger scale Phase III study program expected to be launched soon."
Does kitty litter work?
Well, I have 2 less mole holes today after shoving a whole lot of my cats litter in the hole. I also brushed the cats and then put all their hair in the holes. Maybe that little mole will think they moved in ;)
I survived month end/quarter end yesterday at work. It was an okay day and I didn't have to work a whole slew of overtime or anything. Thank god!
Today is a great day. Tod comes home today! He's been gone for pretty much 2 weeks with the exception of one day at home in the middle. I have this secret day planned for us tomorrow that Tod has no clue about. I can't post about it though because he reads my blog! But it starts at 4pm and lasts all evening and has two main events :) I'll tell you all how much he liked it next week! :) Have a good weekend.
Treatment of active secondary progressive multiple sclerosis with Treosulfan
More news from the Late Breaking category from the conference in Greece. This being good news for those with SPMS.
"Results: Treatment with treosulfan was safe and well tolerated. Nine of 11 patients remained on study drug over the complete treatment period and showed clinical stabilisation or improvement as determined by EDSS and MSFC. Two patients discontinued study drug because of leukocytopenia and withdrawal of consent, respectively. No clinical relapses were observed during the treatment period. Thus, the median number of relapses per year was reduced significantly by 1.5 (range -3 to 0), p<0.016, compared to pre-study. Therapy with treosulfan lead to a clear reduction of MRI activity as revealed by a reduced number of Gd+ enhancing lesions on T1 weighted images. The mean number and volume of T2 lesions remained unchanged over 1 year. Four out of 9 patients under treosulfan showed no detectable disease activity (no Gd enhancing lesions, no new or newly enlarging T2 lesions).
Conclusions: Clinical as well as MRI measures investigated in this proof of principle study provide initial evidence of efficacy of treosulfan in the treatment of active secondary progressive MS. Overall the treatment was safe and well tolerated. Further clinical investigation of this treatment in secondary progressive MS is warranted."
Home or away? Another interesting study from the UK
This study is for testing whether patients receiving IV steriods for an attack do better at home or at a hospital for the 3 days of treatment. The study shows these (not surprising in my mind) results:
"The baseline characteristics of the two arms were equivalent. A clear advantage to home delivery was seen in the Co-ordination of Care domain of the primary outcome (p<0.05). There were no differences in the other three domains. Secondary outcomes improved in both cohorts following steroid administration, but showed no difference between the two arms. No major side-effects were experienced in either setting.
This trial has demonstrated, for the first time, that from the patientâ€™s perspective, home delivery of steroids during an acute relapse, is superior to the out-patient experience, and is safe to administer. This has important implications in formulating a patient-centred service. An accompanying economic analysis will be provided."
What it's really like on date night with Tod on a breaking news night
What a fun night. This posting will be directed towards Tod's CBCunplugged readers as many were posting on his site that he was "supposed" to be on a date with me and how on earth was he still breaking news!? So, here's the real scoop.
First off, I won't plan a nice date night again on a night where the locked out union and management are negotiating on. That was foolish, no? :) Okay, so dinner started out at the Cannery in Vancouver. Mmmm... lovely food, atmosphere and company of course. The hiptop phone came out briefly about midway through dinner. No deal yet.
Next on the agenda: Mamma Mia! FUN. We have seen this musical before, but couldn't resist it again. We don't get a lot of big broadway shows here in Vancouver, so whatever comes, we see it! However, at intermission it was the pivotal hour. The hour in which there should/could/hopefully-would-be a deal made. The hiptop rang once with a reporter looking for scoop I believe. The one thing about this little hiptop, (as much as I can't stand the darn thing at the best of times!) is it does have email access. So, during the second act in the one scene where the wedding is about to happen the great news came through and Tod was able to quickly email his backup contact to move forward with updating the blog and banners with the news. Big moment and it passed in a flash. Abba music was front and center again :)
Just came across these PSA's. I haven't seen or heard any, but they're good. They need more play time!
Great review on what went on at ECTRIMS in Greece
Read away here... On the Accelerated cure site. Theres a lot of really great stuff here.
Wish me luck!
The luck is needed for more reasons than one. In a hour hour I will start stuffing the turkey and attempt to cook Thanksgiving dinner and not have it be 2 hours late like last Christmas! This year, I am properly equipped. A proper pan (with a lid) with the stringy thing that lets you lift the turkey properly, a bag for the stuffing and REAL cranberries for proper sauce!! Dinner is to be served at 6. I'll let you know the real time later ;)
And, at 1pm we are finally doing the interview with Dr. Murray for the podcast. I'm super excited, but knowing that I have no interview skills am glad Tod will be there to move it along nicely. He's damn good at interviewing. I have all your questions that many of you sent in and am looking forward to seeing the responses to all of them.
I think I've got it!
Okay, so the turkey turned out FABULOUS! :) I think I finally get how to cook a turkey. I also have a new recipe for orange glazed yams that my step mom always does. I think its the new favourite. If you wanta copy sent you an email and I'll fire it your way :) Happy Thanksgiving!
Does everyone remember Bob Ross the painter that did the PBS show The Joy of Painting? He would paint the happy fluffy clouds, a little friendly tree... So, a girlfriend and I are taking a painting class in the Bob Ross style of painting! My first class was last week and this is the painting (taken with a cell phone camera - so bad quality).
I'm happy with some of it (Don't look at the mountains!), but mostly I can't wait to go to the next class and start the next painting! It was so fun!
Calgarians Need Much More Vitamin D
Very interesting article siting that we're Vitamin D difficient. And more so in Calgary! I always wonder about that... I mean you get snow, then you have those lovely chinooks that bring sunshine. We don't get sunshine once the rain starts here in Vancouver... so... wouldn't we be more vitamin D difficient than your sunny (yet cold) winters? Maybe because we all still go outside in Vancouver in the rain and Calgarians don't when its below zero yet sunny conditions is where the difference lies? I wonder, can you get vitamin D from the light coming through the clouds? Interesting.
Would you jump from an airplane to raise money for MS?
Well, Dave is! A fellow blogger has taken up the UK MS Society's fundraiser. He has more money to raise before he jumps from an airplane (tandem style) so if your looking for a charity to fund here it is! Click on this link to go straight to Dave page and sponsor him! **FYI for fellow Canadians... my 20 Pound donation equates to approximately 41 Canadian dollars**
Oh, and to answer my own question... in theory I would jump from a plane or bungee jump in a heartbeat! I love scary rollar coaster rides and all those fun more scary sports. However, with this degenerated disc in my back which clearly would be affected by the jump :( I was told many many years ago by my doctor when I was going to sign up for a tandem jump that I should NOT ever do it. It would jar my back and wreck me. Darn it. So, I went and got myself scuba diving certified instead. Much longer lasting sport... :)
Speaking of charities
Yesterday the mail arrived. And there was a beautiful card with a carnation on the front from the MS Society. An anonymous person has made a donation to the Canadian MS Society in MY name! The card simply states:
A donation has been made to the MS Society of Canada Kim Maffin in honour of your thoughtfulness. From: Someone who benefitted from your sacrifce of Tod during the lockout.
I know that some people were wanting to donate to Tod's site to help pay for the hosting costs and such, but he recouped those costs through google ads ect and so he started telling people to donate to his choice of a charity. Which of course is the MS Society!
So, in short, thank you SO much to the person who sent this money to the MS Society in my name. I'm forever thankful to your generousity of contributing to my (and Tods) future with MS. It was no sacrifice of mine watching Tod in his glory doing what he does best, which is simply being passionate about the CBC (his other "wife").
JK Rowlings story about her moms MS
I hadn't come across this before, written by none other than J.K. Rowling. Clearly its been around for some time but its a good read to understand her perspective on MS stretment in light of her mothers diagnosis.
"The author of the Harry Potter books wants better standards of care for people affected by MS. Her mother died of complications from rapidly progressive MS at the age of 45. The MS Society she refers to is the British MS Society, established through the efforts of National MS Society founder Sylvia Lawry.
This article, first published in 2001 in the U.K. MS Society magazine, MS Matters, encouraged protest that resulted in a bold reform."
So many things going on! Fun things, surprising things, happy things, busy things... but mostly I'm tired! I finally seemed to have gotten a good sleep last night, although I could have slept for another 6 hours and been happy. But commitments didn't allow that to happen. Now, where to start?
Friday - Tod surprised the heck out of me! He had set up the day and told me that we had plans and that I was to just pick him up at the airport at 2:40. And I had an envelope that said 'do not open until I tell you to'. : - ) Fun! So, I'm at the airport and Tod phones and says he's landed and to proceed to our pre-set pick-up place. When I arrive, Tod doesn't! But my best friend from Calgary walks out the airport doors! COOL! Tod was in Montreal for a day longer and had flown Denise out on points so we could hang out for the weekend! When I opened the envelope there were Jann Arden tickets for us for that night! YAY! The concert was fabulous. Jann Arden is so great live... she's a very funny person.
Saturday - ahhh sleep in day and then off to Stanley park for a walk around. Then we just hung out and went for dinner. Relaxing day. And Tod arrives home (for real this time!).
Sunday - Denise and I went out to Abbotsford to my parents place for yummy brunch, then a quick stop over in Surrey at a friends place AND then on to the airport in Vancouver. I didn't get home until early evening and I should have just gone to sleep, but of course went downstairs and chatted on Skype with Dave and just goofed off.
Monday - had to get up at a decent time because the New York Times photographer came to take pics of Tod and I for a story they might run on the MS Podcast! The pics were taken in our home studio voicing booth and at my computer. I did the interview last week so we'll see if they run the story. It'd be great if they did! The more exposure for MS the better I say.
And now, I'm tired. Big time tired. I think I've had about 12 bad sleeps in a row. Ugh I need to catch up! So the rule is to be in bed asleep by 9:30 at the latest tonight. We;ll see.....
Copaxone Safe for Paediatric Multiple Sclerosis
A new study released says that Copaxone is safe for kids to take.
"Children get multiple sclerosis, and we found in this study children can be treated
with multiple sclerosis in the same way adults can be treated," said lead investigator
Lauren Krupp, MD, professor of neurology and director, National Pediatric Multiple
Sclerosis Center, State University of New York Medical Center, Stony Brook, New
York, United States. "We found that they can be treated equally safely with Copaxone,
or glatiramer acetate."
Update on Bee Sting therapy in MS
Well, I think this excerpt sums it up:
CONCLUSIONS: In this trial, treatment with bee venom in patients with relapsing multiple sclerosis did not reduce disease activity, disability, or fatigue and did not improve quality of life.
Low fat dietary intervention with omega-3 fatty acid supplementation
And in other Alternative therapy news... this small study in the use of Omega-3 Fatty Acids has been released showing moderate benefits of less fatigue and relapses.
So, both my legs are numb/pins and needles for the last week from about mid shin down to my feet. My back has been very bad too so I'm thinking I need to do some intensive massage therapy/physio to stop this. I'm certain its not MS (okay, I'm telling myself that), but postural as the last time this happened, my massage therapist was able to help get it back in check quite fast after a few facial treatments.
Ontario MRI wait times
The province of Ontario has posted their hospital wait times to get particular procedures done. I of course had to see what MRI wait times are like. You have to put in the particular city your in, but if you do a search in let's say Mississauga (Hi, cousin Colin!) then you have three hospitals to choose from:
Trillium Health Centre - 73 days average wait time
Halton Healthcare Services Corporation-39 days wait time
The Credit Valley Hospital - 94 days average wait time
Interesting. So, I guess the question that needs to be asked is can one choose what facility they want to go to? I choose Halton! I know here in BC, I was not given that option. There seemed to be a pool of hospitals and I was just given a date, location and time, no other options. Of course the thing I found out is that if you put yourself on the waiting list for cancellations, I was given a 4 day turn around. Too bad they don't tell you that there are 10pm appointments available. They could alleviate a lot of waiting time if they gave people those options!
Three hours and counting
Well, the numbness has moved up my thigh in my left leg. Its kinda funny, because thats really all it is. It doesn't stop me from doing anything. Its just noticable. My massage appointment is in 3 hours though, so I'm happy for that. And its Friday and I slept in until 9!
I'm also happy to see that Eric is again encouraging the Glyconutrient conversations on his blog. They always make me laugh
Yesterday I found out that this Sunday's New York Times will have the article about the MS Podcast! Wow! I'm actually kinda shocked. I'm also interested to find out what the photo will look like. The photographer that came over to our studio took a lot of photos and I've no idea what they'll choose. But anyways, the more MS stays fore front in the news perhaps the more money will come its way to continue research.
There's a couple new posts about trials in mice showing some good early resutls. I've been reading a book called "Curing MS (which so far has been a great scientific style read) and Dr.Weiner goes into great detail about MS in mice called EAE. So, I'm now finding it quite interesing reading both these articles having some understanding.
"From Your Living Room to the World, Via Podcast"
When Kim Maffin learned that she had multiple sclerosis about a year ago, she
decided to use a new technology to reach out to others coping with the disease.
She started making podcasts - recorded audio programs that people can download
from the Internet and hear on their computers or MP3 players.
From her home near Vancouver, British Columbia, she
spoke about her devastating disease into a microphone, connected to her computer,
and then posted her thoughts on the Internet. Since then, thousands of people
have listened to that first podcast and many others she has made about her disease
and related issues, and she now interviews others as part of her program. "There's
no reason I have the disease, and no cure for it," she said. "As it
turned out, that situation spoke to a large community of people."
Ms. Maffin is among the growing numbers of people creating
their own podcasts. Listeners find these programs by searching Google by topic,
for example, or by using a podcast directory like those on Yahoo or iTunes.
Podcasts are as varied as the interests of the writers; the programs may offer
recordings of family reunions, walking tours of a neighborhood, comic routines
of a stay-at-home dad, discussions of favorite movies and books or, in Ms. Maffin's
case, the personal exploration of an illness.
Entry into this form of broadcasting is open to anyone
who owns a computer. The cost can be as little as $10 for a microphone - and
The recordings don't have to be perfect, Ms. Williams said. "Podcasts with
a little background noise aren't bad," she said. "They have their
own rugged charm."
Dave Winer of Berkeley, Calif., who develops technology
for Web logs and podcasts, said he preferred minimal equipment for his programs
about computers and podcasting technology (scripting.com).
Using a personal digital assistant and a $100 microphone
intended to pick up voices of people sitting at a table, he recorded his 50th
birthday celebration at a restaurant. And by using a Wi-Fi connection, he sent
the recording to his computer server so it could be posted online. He said that
the birthday podcast was popular with listeners and that it revealed, among
other things, his parents' strategies for selling on eBay, adding, "I love
podcasting because it turns us all into investigative journalists of our own
Michael W. Geoghegan, co-author of "Podcast Solutions"
(Friends of ED, $24.99), also started with minimal equipment. "I did the
normal thing," said Mr. Geoghegan, of Newport Beach, Calif., who podcasts
a program of movie reviews (reelreviewsradio.com).
"I bought a simple mike and a mixing board for $50 each and recorded straight
into my computer."
Then, he said, "I decided I wanted to see how
good I could make everything sound." So, for about $500, he bought a Mackie
Onyx 1220 mixing board, which combines audio from several sources. He chose
a powerful microphone, an Electrovoice RE20, that cost about $420. He added
hardware to process the audio feed from his mike: a Symetrix 528E voice processor
(about $550) to ensure, for example, that the volume of his voice stays relatively
constant, and an Aphex 204 aural exciter (about $200). "When you digitize
the voice," he said, "it sounds somewhat dull, so the aural exciter
puts a bit of sparkle back in."
Instead of recording on his computer, he decided to
invest in a Marantz PMD 670, a $700 digital recording device. The machine records
to a memory card that he pops into his computer to edit the recording. He prefers
equipment that is dedicated to recording. "The standard laptop is not set
up to be the optimal recording device," Mr.Geoghegan said. "Fifteen
minutes into the show, the software can quit" - or other glitches can occur
when the hard drive on the computer is required to do many other tasks besides
Doug Kaye, of Kentfield, Calif., is executive producer
of IT Conversations, a company that presents podcasts on technology. He has
gradually acquired roughly $30,000 worth of equipment in his studio, he said.
The most important piece of equipment for podcasters who want to monitor their
voices is the headphones, he said. He uses a Sony Pro MDR-7506, which costs
Ms. Maffin, whose podcast discusses her multiple sclerosis,
did not need to buy podcasting equipment. Her husband, Tod
Maffin, a radio producer for the Canadian Broadcasting Corporation, already
had a full studio at home for podcasting on his own; she borrowed it for hers."All
I had to buy for studio interviews was a $10 phone tap from RadioShack,"
of a series of interviews, some of them recorded outdoors. He recently
bought a Griffin iTalk mike, with a retail price of about $40, that
connects to his iPod, and a Griffin lapel mike that sells for about
Some podcasters do post-production work. Mr. Geoghegan uses a $600
audio editing suite called Bias Peak Pro 5, for example, to trim
stumbles and pauses.
Mr. Winer, on the other hand, never edits his podcasts. "I don\'t have
the patience for it," he said. "If I had to, I would do fewer
Roving reporters have many choices in microphones. Travis Kennedy, a part-time student at Palm Beach Community College in Florida who works at the Apple retail store in Palm Beach Gardens, is planning podcasts of a series of interviews, some of them recorded outdoors. He recently bought a Griffin iTalk mike, with a retail price of about $40, that connects to his iPod, and a Griffin lapel mike that sells for about $15.
Some podcasters do post-production work. Mr. Geoghegan uses a $600 audio editing suite called Bias Peak Pro 5, for example, to trim stumbles and pauses. Mr. Winer, on the other hand, never edits his podcasts. "I don't have the patience for it," he said. "If I had to, I would do fewer podcasts."