caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Sunday, July 16, 2006
July 2006 Archive
 
Is Vitamin D helping?
2006-07-03 13:37:15

I finally found a
published article
on Vitamin D but it didn't have the conclusions I would
have liked to see. "CONCLUSIONS: Vitamin D supplementation may help prevent
the development of MS and may be a useful addition to therapy. However, current
studies are in small populations and are confounded by other variables, such
as additional vitamin and mineral supplementation." I'd like to see a dose!
And why do a study if it's not controlling all aspects of how people are responding
(ie: other minerals and supplements).

Medical Marijuana: National Multiple Sclerosis Society to Fund Study

2006-07-03 13:45:49

Finally! "In what could be the first sign of a course reversal by the National
Multiple Sclerosis Society, which has scoffed at medical marijuana in the past,
the group announced this week that it will fund a
study
on the effect of marijuana on spasticity in MS patients
. While the Society
acknowledges that up to 15% of MS patients use medical marijuana, funding the
new study is the first time the group has indicated it is hearing what those
patients are saying.

The society currently rejects the use of marijuana to relieve MS symptoms.
As it notes on its web site, "Based on the studies to date, it is the opinion
of the National Multiple Sclerosis Society's Medical Advisory Board that there
are currently insufficient data to recommend marijuana or its derivatives as
a treatment for MS. Long-term use of marijuana may be associated with significant
serious side effects. In addition, other well-tested, FDA-approved drugs are
available, such as baclofen and tizanidine, to reduce spasticity in MS."The
Society said it was moved by inconclusive earlier studies on the effect of marijuana
on MS spasticity to fund a one using a new measure. The study is not a new one;
the group is taking over funding for ongoing research at the University of California
Center for Medicinal Cannabis Research, which lost funding when the investigation
was only partially completed."

Do Aquatic exercises help MS?

2006-07-03 13:53:14

If you live in NY there is a trial that is recruiting to find out the answer
to this question. Damn I wish this was being held in my town! I'd be all over
this! Free swimming for 10 weeks! If anyone reading is joining this trial, I'm
dying to hear how you do with it. "An exercise physiologist at SUNY Upstate
Medical University's Institute for Human Performance is looking for Central
New Yorkers who have moderate to severe disability from multiple sclerosis.
She's conducting a study sponsored by the National Multiple Sclerosis Society
to see whether an aquatic exercise program can help. Participants will take
water exercise classes at the institute three times a week for 10 weeks, for
free. The exercises focus on ambulation (walking or movement), trunk strength,
upper- and lower-body strength, flexibility, balance and cardiovascular endurance.
The pool is accessible by use of a ramp, and waterproof wheelchairs and assistance
are also available. If you are interested in joining the study, you must have
a diagnosis of relapsing-remitting or secondary progressive multiple sclerosis
and be between the ages of 18 and 65. You must use a cane, crutch, walker, wheelchair
or scooter for assistance with movement. Carol Sames, who also directs the institute's
Vitality fitness program, is looking for people who have had no organized exercise
program or physical therapy in the previous six months, who have the ability
to walk 25 feet, with assistance, and who are able to participate in 50 minutes
of exercise three times per week. If that describes you, call 464-9992 for details.

Podcast show 27 with the MS Society of Canada is posted!

2006-07-03 14:32:18

For those that wanted to have a listen, the show
is posted
where Tod and I got to talk to Stewart Wong over at the MS Society
of Canada. Tod's put a fancy listening thingy on that page too, so you can just
go to the page and press the play button and listen from there. I've been on
their new Ask and Expert site too...Â
Have a browse at past questions and answers. I think people are asking good
questions and it's nice to be able to go back and read at any time. I'll especially
be watching for those answers by both my Neuro Dr. Devonshire and Dr. Murray
who we got to interview before.

Rowling received an honorary doctorate

2006-07-07 09:39:08

London
Free Press - International News - Rowling honoured for aiding Scottish MS research

JK Rowling... thank god she wrote all the Harry Potter books and thank god she's
given back some of that profit to benefit all of us with MS! And now she has
an honourary Doctorate of Law degree from the Aberdeen University of Scotland
for her charity work.

Could a dogs DNA really help me?

2006-07-07 09:43:42

Dog DNA provides clues to
combating diseases such as diabetes and multiple sclerosis in humans
Looks
like thats where this research is heading based out of Australia. Now, what
I didn't know is that dogs have a similar disease to MS! Its called granulomatous
meningitis. Who knew? "Using molecular biology, the research will seek out the
genetic components of affected dogs that are responsible for creating immunity
and then look at the DNA sequences to determine if there are any specific patterns
responsible for causing certain diseases."

Dear Larry (The Lesion)

2006-07-08 17:16:17

Dear Larry, I know, I know, I'm a great host! I love having company, and I
love to entertain folk. And I hardly see you very often, so thanks for popping
round to remind me your still out there kicking! Good to know, and good to feel
your vibe. It's with awkwardness that I need to inform you that your stay has
just become a little overdone. You are intruding and over stepping that common
curtesy boundary. I'm afraid you've left me with other option. It's time for
you to go, Larry. Go out in the world and explore other areas that might interest
you! I know my spinal column and brain are comfy and familar, but the world
is large! It's time to grow up and move on.

Yours Sincerly, Kim

Link Between Diabetes And MS

2006-07-18 11:48:03


Study Suggests
Links Between Diabetes And Multiple Sclerosis
Interesting new study says
that people with type 1 diabetes are more prone to developing MS. "
Dr. Nete M. Nielsen, from the Statens Serum Institut in Copenhagen, and
colleagues, evaluated the emergence of MS in 6078 patients with type-1 diabetes
with more than a decade of follow-up, and observed that patients with type-
1 diabetes had a more than three-fold increased risk of MS."


Survey for MS'ers

2006-07-19 14:58:28


I just completed this survey hosted by the University of Regina on health anxiety and coping with MS. Give yourself about 20 minutes and you can enter yourself at the end to get some Chapters gift certificates. I heart Chapters. Here are the details:

Survey on Multiple Sclerosis - Participants Wanted

Who: People with multiple sclerosis, over age 18.

What: Online survey about health-related anxiety, disability and coping with MS.

Why: Multiple sclerosis is an unpredictable neurological disorder that may result in disability, depression and anxiety. Therefore, coping effectively with MS is important. We are studying whether higher health-related anxiety influences the response to MS.

Where: For details, visit the survey website and enter the password “CopeMS”.

Note: password and URL are case sensitive

For further information on the survey, including confidentiality and security, please be sure to read the entire “Information for Potential Participants” pages.

Incentive: A draw to win one of five $20 Chapters gift certificates.

Investigator: Melissa Kehler, M.A. Candidate, Clinical Psychology


Supervisor: Dr. Heather Hadjistavropoulos,
Professor, Psychology, University of Regina. E-mail: heather.hadjistavropoulos@uregina.ca


They can tell a difference between RRMS and PPMS

2006-07-21 08:40:25


I just came across this study that shows a clear difference between the 2
forms of the disease. Here's
a link to the study if you want to read a little further.
summary:
After comparing brain atrophy, brain MTR and cord atrophy in patients with early
PP and RR MS, this study found that cord atrophy was present in the PPMS group
only. This is consistent with the fact that most PPMS patients present with
problems in the spinal cord.

 


Summer days are here
2006-07-21 11:26:45

Well much has been going on in my life lately. I won't get into all the details,
but there are a few worth mentioning. We bought a new car finally and sold my
little Civic. The new car has Air Conditioning!!! Wow, I never thought I would
be so happy about that but I am. Its an amazing difference to sit in AC for
the ride home rather than a black little hot box that I used to have. I think
I might be an adult now having this new car. Its a Subaru Forrester and it's
lovely. The other interesting thing that I find with this car is the leather
seats. Not an option that I was seeking out, but an interesting bonus. I'm finding
it way easier on my back to get in and out of these seats. You kinda slide on
them as opposed to sitting on fabric that keeps you somewhat glued to the seat.
Who knew? I've also stopped taking the Amytriptalene for my back pain. I found
it all of a sudden making no impact and when I stopped taking it (no withdrawal
btw), I can properly feel what my body is telling me which isn't much. I still
have lumbar pain, but my massage therapist is convinced that it's from being
weak in those crucial stabilizing core muscles. At least that's something
I can work on. I can't seem to find any position that initiates the L'hermittes
syndrome either anymore. Thank god! That was just irritating. And lastly, (boy
this MS crap is taking way more of my time than needed ;) the double vision
continues to be further and further into my perifery (sp) view and is only really
noticable when I'm super tired or stressed. So, once again my body is just doing
it's own thing and healing when the heck it wants! Yay. Yesterday I got a cool
phone call from the MS clinic to take part in a survey regarding environment
and movement of locations that I've lived. As well as siblings and step siblings
which is all part of a study that has been in play for about 9 years I believe
they said. They also wanted to ask my mom some questions and use Tod as a
control person who doesn't have MS. Fun. I love those surveys. I've also got
a bunch of info from the research team on other data has come out of these types
of surveys. Good reading for a too hot afternoon. I'll share what I find in
those too. One can only hope they are just coming closer and closer to figuring
MS out. And here's a lovely photo I took a couple weeks back. I'm seeing this
guy at our back window almost daily these days and at least he's very scared
of humans. I can just shake my keys and he's off at a full run away from me.
And there hasen't been any other damage done to the house either. I just wish
he wasen't so cute with those ears! 169303360_ad9f692549_o.jpg

Is summer over now?

2006-07-24 20:39:05

Enough with the heat already mother nature! Jeesh! It's been going up to 34
every day here the last few and we're just dying! Thank god for the little AC
unit in our bedroom window otherwise sleeping would be out of the picture. I'm
always all happy when I get into the shower and do my regular cooling off cold
shower routine, but the good results don't last long in this kind of heat. I
just can't recall even feeling these types of temperatures here. I used to think
27 was SO hot and now that seems the norm! Does anyone having any good beat-the-heat
strategies I (and others) should know about?

Good Posting

2006-07-25 21:41:15

I was just purusing MS'ers blogs and see that Natalie
posted a letter that's a must read. I see that it's been around for a few years
and was originally written by someone with an invisible illness and people have
changed it to suit different diseases. It very much reminds me of the spoons
theory/story. Anyways, I thought it was pretty darn good.

On the road!

2006-07-29 10:59:56

Today is packing day. Tod and I are leaving on an unknown camping road trip.
Seriously! We don't have an agenda. We know we'll stay in BC but we don't know
what direction we'll head. We have 3 choices. North, East or West. :) We're
totally looking forward to the getaway! I'm planning on swimming for sure. There
are so many beautiful lakes in BC so that'll be great. And I'm thinking we'll
hit up a hot spring here and there too. We'll see! I can only hope that the
weather will continue to cooperate. The clouds have moved in and the temperature
is much nicer, but that might mean rain too! If your from BC and you think we
should go to a particular town or park, let me know!

Others are jumping out of planes to raise money for MS, are you? ;)

2006-07-30 08:18:42

ms not just a diary.: I'am finished!hehe! I rock...I think??? Dave - You seriously rock! I'm glad you liked jumping! I'm SO impressed and proud that you took on this charity challenge!! It's unheard of up here! I can't wait to see pics. :) Update - Here's a link to dave's video of the jump.