Hi everyone -- this is Tod (Kim's at work, bringin' home the bacon!) ;-) Her podcast was just featured in a major community newspaper here in Vancouver so I thought I'd brag a bit and post a clipping of it:
One day in 2004, Kim Maffin woke up feeling not quite right. She came home from work half way through the day. Over the next few weeks she had problems with her vision and felt motion sickness. She had a CAT scan, blood work and an MRI. Three months later, her diagnosis was confirmed: she had benign remitting relapsing multiple sclerosis. When Maffin received the news, she had no idea what it meant to have this chronic disease for the rest of her life. The disease, which attacks the nervous system, has no typical path and affects each person differently. Maffin searched the web and discovered no personal stories about people with multiple sclerosis online. She decided to tell her own story through a podcast. Now Maffin's stories, voice and laughter are heard by hundreds of people around the world who've never met her. On the Multiple Sclerosis Podcast, which has run the past six months and is posted online once every couple of weeks, Maffin, 29, tells her story in a friendly, conversational style, updates her situation, reviews books about the disease, interviews guests, presents the latest multiple sclerosis news and discusses a host of related issues.
You can read
the full article.
New drug in trial for Secondary Progressive MS
GemacBio announces the successful conclusion of Phase IIa clinical trials for
its new molecule designed to treat multiple sclerosis A company in France
developed this drug and is now in further clinical trials for SPMS. I can't
find a whole lot about the actual drug other than it's oral and not injectable
and has a low side effect profile.
Tod's really going to surpass me now
He's so smart. He's decided to offer his radio workshop based on his book
on being a radio freelancer. And all the proceeds from the event will go the
MS Society! The admittance fee is by donation. Check
It's like crack
We rented the first couple DVD's of season two of 24 today. 6 hours down and
2 more to go! And we know that the next 3 discs are due back at the rental store
today before 11pm. So, we're taking a break so we don't catch up to not having
any more to watch! Damn that Jack Bauer!! It's just like crack!! We've watched
all the other seasons, but somehow skipped over this one and really, the best
way is to hole up for the weekend and take it all in on DVD! Forget waiting
weekly! We keep looking at each other and ask "Just one more?" It's wickedly
stormy outside today, so what better way to spend the weekend :) And even better,
I'm on holidays again! We're going to head out to the island later next week
and I have to get a bunch of work done on the car. I hate that part. But the
brakes must be done, and my truck is leaking water through the tail lights.
So, thats all gotta change. Oh, an if your reading through an aggregator, go
to my actual site. Tod redesigned the colour scheme and look so it would be
more readable after a wonderful MSer told me that the latest colour wasen't
working from an ON (Optic Neuritis) perspective. I'm so grateful to have been
told as I didn't at all know! Thanks again! Speaking of change... I've been
hesitate to even blog this fact but I think it's time I do. As of this week
I have now lost 45 pounds since June. Phew! It's always been a struggle for
me and I never want to really tell people that I'm trying because I've always
failed. I'm not entirely certain why I've been so successful this time around.
I think everything just seems to be falling into the place it should be. I'm
at piece with my MS, getting diagnosed has explained a lot to me about my body
that I never understood before. And maybe more importantly it gave me an even
better reason to preserve my health as I want to be as healthy as I can be when
that next attack hits. I'm not foolish to think that it won't and if I can't
control when, then maybe I can control my ability to heal. We'll see. :) Anyways,
thats me this weekend. What's everyone else up to?
Stem Cell results in MS
news, TWNKeys, TWNNews, Press Releases, NewsWire This is a small capture
of 3 patients after receiving Stem Cell implant. Here's the low down: Three
MS patients, all wheelchair bound, have reported the following results 4-6 days
after the stem cell / placenta implant 1. Cold feet needing various forms
of heating during the night become warm with no need of heating. 2. Substantial
improvement or disappearance of spasticity. 3. Being able, while in the wheelchair,
to move their legs with relative ease. 4. Urinary frequency markedly reduced.
MBP8298 for Treatment of Secondary Progressive MS
drug making it to clinical trials for SPMS. This drug is made by BioMS Medical
Group and so for seems to have treated 100 patients successfully. Here's a little
about how the drug works. Looks like trials are being done in Canada, UK and
Back in town!
Well, I'm not sure what I'm still doing awake, but I am :) We took off for
the last several days to the Island. We had a chance to catch up with friends
and hang around at the beach. Amazingly the weather was absolutely gorgeous
and we had plenty of opportunity to just relax. Just what the doctor ordered
I tell ya! The downfall of course is that my back is completely trashed from
the poor quality bed we slept in. Never fails to happen when we travel. I seriously
have to look into getting a bed that I can bring with me so I can avoid this.
Any ideas? I see that our PVR recorded Extreme Makeover Home Edition tonight...
I'll watch it tomorrow as they rebuild a house for a woman who has MS. I'm keen
to see what new technologies they installed. Anyone see it?Â Okay, time for
bed. I'm so glad I'm not working tomorrow!
Extreme Makeover Home Edition rebuilds house for MS
Okay, I've watched the
episode. Only the later hour was taped though, but I think I got to see
the majority of stuff. I was happy with the fact that they did give some infomation
about what MS has done and can do to people. I liked that they made her a one
level house and they installed a lift at the ballet studio she teaches at to
help get up the stairs. I would guess that most people currently living with
MS don't have the option to just get a rancher style house and lifts are a better
option. I liked the bars they put in the house in the hallways and such. They
were black iron and looked stylish and not like a medical facility bar. Nice
touch. I was more impressed by far with Carol when she viewed the outside of
the house and then asked to be carried to the front door. I have so much respect
for her for not playing a martyr and acknowledging that she would do better
if someone would just carry her to the front door to continue on. I think a
lot of us try to hide the true symptoms we feel and "push through" the pain,
unsteadyness or fatigue. I can only hope I'll stay as honest throughout my lifetime
with this disease.
Cancer drug (Rituxan)Rituximab: B Cell treatment for PPMS
Clinical trials are moving forward for this
drug that treats the B cells and not the T cells as most other RRMS drugs
do. From the article: "With the rituximab clinical trials, patients have one
infusion and then around two weeks later, which is repeated every six months
-- a big difference from daily or weekly injections. In patients who have been
treated with rituximab and haven't responded to other treatments, Dr. Stuve
says, "The response to the Rituxan was really dramatic, in terms of not only
stopping disease progression but really helping the patients recover some of
the neurological function that they had lost in previous month and years. So,
the anecdotal evidence in these cases has really impressed me personally of
the efficacy of this agent."
Ibot being considering in MI for medicaid coverage
Thanks very much to Carrie on sending me this info. If you live in Michigan,
please read and act on this info below now! This is great news, and even better,
I didn't know the Ibot was now fully to market for purchse! It's the coolest
wheelchair I've ever seen! It uses the same technology that the Segway does.
Here's the info: Who: You and your Friends and Family What: Medicaid is considering
coverage for the iBOT. Public Comment period is now. We need our Senators and
Reps to sign onto letters that are circulating in Congress now. When: 1/26/2006
- 2/26/2006 Where: In Congress Why: It is allowing people with disabilities
to lead independent lives How: Its really Easy.Dial toll-free 1-877-224-0041
to be connected to the Capitol switchboard. Ask to speak to your Representative's
office (the operator will be able to locate your representative by your zip
code) and urge him/her to sign the Bass-Langevin letter supporting Medicare
coverage of the iBOT. Let them know that individuals with disabilities should
have access to innovative technology that will improve their health, function
and independence. Then make two more calls to both your Senators asking them
to sign the Enzi-Levin letter! Here are some links to information on the iBOT:
Short News Video http://www.koaa.com/news/view.asp?ID=4522
Short news Video http://www.itemcoalition.org/
Info on coverage for the iBOT
FDA Allows Clinical Studies of Tysabri to continue
Looks like the FDA made a decision
that clinical trails can resume for Tysabri. Is there anyone out there gong
back in to get back on the trial they were a part of? Leave some comments if
you are! I think much of the MS community is watching this one closely.
Symadex (formerly C-1311) shows signs of Remyelination
Well, in mice anyways. The results
from testing mice show all levels of the disease are showing good signs. "The
early results from this study showed that the animals in the study, which were
paralyzed due to neurological impairment, were able to recover and regain their
mobility after treatment with Symadex," commented Dr. Karlik. "Symadex is now
in Phase 2 trials in oncology and the positive results of this animal model
study show the candidate's potential for treating MS and provide the support
needed to advance Symadex towards human trials for MS,"said Michael A. Boss,
PhD. Chief Business Officer at Xanthus."
A connection made with Aluminum and MS
at Keele University in Staffordshire, England, have discovered the first evidence
of a link between human exposure to aluminum and multiple sclerosis.Their research
has demonstrated very high (up to 40 times the control level) urinary excretion
of aluminum in MS, particularly so in the relapsing-remitting form of the disease.
Urinary excretion of iron was also significantly elevated in MS and particularly
so in the secondary progressive form of the disease."
So where to from here? Are there prevention stategies that can be provided?
Interesting... inquiring minds would like to know...
Bye Bye Balance
Had a weird moment last week. I woke up at my usual time for work and got
up out of bed. As soon as I tried to take one step I immediately fell backwards
and down on the bed again. No balance. None. I got back up again right away
and stumbled forward to my dresser and hung on to the edge while I hoped my
body would stop with the motion. After a minute or two everything settled down
and I was able to properly stumble to the shower. I haven't felt it again since,
but it was a little unnerving. I'm blaming it on lack of sleep this time though
and not Larry the Lesion.
It was day 5 of poor sleeps (maybe 5 hours max a night) and I think it just
all caught up. Still, I was glad it was my last day of work for the week as
I needed a good nights sleep. Or at least, if not a good sleep, many hours of
interupted sleep always do me well :) Oh, and a new podcast
is up! Show 18 if you can believe we've done that many!