december meeting!

Is on Friday, December 11th. Hopefully it's not snowing, but I'll be there either way!

New Findings?

Or at least new to me! Check this out!

http://www.thisisms.com/ftopict-6488.html

I'm in the process of reading and digesting this thread...

Which has ties to this blog post...

http://www.wheelchairkamikaze.com/2009/05/is-ms-actually-vascular-disease.html

Could this vascular problem (blood flow not correct out of the brain) explain my pressure "headaches"? Which have been quite intense these past two days. I will definitely be printing out the paper and giving it to my Neuro in Jan. during my checkup.

Meetup.com

I'm forming a group on meetup.com, in an effort to get more of us connected! The group web address is meetup.com/RubyMountainMSMeetup. Just another way to get the word out!

I'm also thinking that our meetings can vary a bit...I'd love some input Cindy!

Perhaps meet at NNRH at our usual time to start, and then go...get coffee, piazza, something. I know that Cindy would like to get some guest speakers to the meetings. A bit more of an agenda, I'm thinking. Or a topic for each month. The different types of MS (RR, SP, PP) and ways for each of us to function. The latest findings in the research world. Perhaps I will try to get more organized and come up with ideas and get the ball rolling. Any help would be appreciated!!

---OK, scrap the meetup.com thing. I don't want to pay $20 for a meetup group!! There are currently no groups in the Elko area, the closest I can find right now is Twin Falls-none relating to MS but a few other topics. I'll keep looking and see if this can be a go after all. Stay posted!!

Winter edition of Momentum

Which is the magazine of the National Multiple Sclerosis Society, is full of very informative articles. I would encourage you to get signed up for the magazine (if you aren't already!). I will be. Thought I already was. Oh well, try again! Thankx Cindy for letting me read yours!

Fatigue, sleep studies to see if there is something more to your fatigue than just the MS, low vision and preventing falls, PT to help with/assess mobility, some articles about the latest research....Definitely worth checking out!

They have lots of great things on their website, nationalmssociety.org/magazine , and it says you can find the articles from the magazine issues there, but I think I'd still like to get it at home. Don't always have time to sit in front of the computer to read. Plus I like to read while I'm waiting in the car.

November meeting....

Was Friday the 13th. I was early for once!! Cindy was juggling things at home, and after waiting about 45 mins. or so, and no one else showed up, I called it a night.

Now a person could start to feel rather discouraged, with the seemingly poor interest in these meetings. Hope you aren't feeling that way, Cindy! I feel that by continuing to show up, that one of these days someone new is going show up that needs some support, needs to know that they aren't alone.

You will still find me the second Friday of the month at Classroom A of the NNRH, from 6-8 pm. Cindy too! :)

TV Spot!

This morning I got to sit down with Lori Gilbert, of our local NBC news, KENV, to talk about MS. It will air on Saturday, at 4:30 pm. (the day after November's meeting, but at least we are getting the message out there!)

Lori did her homework and had some printouts off of the MSAA website, which I need to check out again!

Lori asked me if I was OK talking about my experiences, which I am. I hope I didn't talk about myself tooo much. I tried to keep things going, not focusing on just me, as this was meant to get awareness out there for all of us, and to let people know about the blog and our monthly meetings.

Remember, I'm not a medical professional, don't take anything I said as law. I tried to make sure that I mentioned all the different types (RRMS, SPMS, PPMS).

All in all I think it went really well!! I'd love to hear some feedback!

Ok-So this Saturday @ 4:30 pm, KENV local NBC station, or check it out on KENVTV.com

:) Alica

MS Meeting

Is this friday!! Friday October 9th, from 6pm to 8pm at NNRH (the hospital). Classroom A, which is just through the cafeteria. Reception will be able to point you in the right direction.

See you there!!

Shared Solutions teleconference series

Welcome to the Shared Solutions teleconference series.

These events are open to all individuals impacted by MS. In these discussions we address

a variety of important issues facing the MS community. They are hosted by leading MS

experts & feature a live question and answer session.

Our upcoming teleconferences include:

• Depression – Jayne Ward, DO - Alice S. MS Advocate

Monday, October 26, 2009 – 8:00 PM ET – 5:00 PM PT

Tuesday, October 27, 2009 – 9:00 PM ET – 6:00 PM PT

• Managing Spasticity – Christopher Hughes, MD – Michelle T. MS Advocate

Tuesday, November 17, 2009 – 8:00 PM ET – 5:00 PM PT

Wednesday, November 18, 2009 – 9:00 PM ET – 6:00 PM PT

• Year in Review – Elizabeth Crabtree, MD – Linda B. MS Advocate

Tuesday, December 15, 2009 – 8:00 PM ET – 5:00 PM PT

Wednesday, December 16, 2009 – 9:00 PM ET – 6:00 PM PT

It’s easy to participate, No RSVP required!

Dial 1-800-823-1880 to join a teleconference on a designated evening. Or, dial the same

number to set up a reminder call so you don’t miss the teleconference you would like to

attend!

Warmest regards,

Your friends at Shared Solutions

www.sharedsolutions.com

September Meeting

Was just Cindy & I! We did manage to get some good brainstorming done. Some more ways to get people to the meetings, or linked to this blog.

While it seems that Cindy and I are developing a good friendship, we would love to see some more faces!

Now I just have to find the paper I made all those notes on......hahaha

Knowledge is Power DVD

Cindy, I finally got around to watching the DVD you had given me to view at the August meeting. It seems geared toward the newley diagnosed and those in diagnosis "limbo land". Also, freaked out spouses would probably also benefit! (I'm gonna make my hubby watch it). I know of someone going through the Dx hoops, so I'm going to let her borrow it as well.

Reminder: MS Meeting

Just a reminder and an invitation, that our MS Self Help Group meeting is this Friday, September 11, 2009. We hold them at NNRH. If you need more information just ask Alicia or Cindy!

AWESOME JOB ALICIA!

This is absolutely wonderful!!! Alicia you have done a fantastic job!!!! Now all I have to do is learn how to work it...LOL We will let as many people we can know about your site. Now we will be able to each alot more people. YEAH ALICIA!!!!

Information Resources

Just a few places where I have been able to find some helpful information

-Web MD puts out an e-mail newsletter every few weeks which is MS specific. If I remeber right you have to go to the web site and sign up for it. This newsletter has all sorts of information, from tips to managing stress, diet, to the latest advancements in treatment options. Every newsletter has something different, although I have found that over a few months it can be a touch repetative.

-Neurology Now is a bi-monthly magazine that is free to subscribe to for individuals with a neurological disorder, their families and caregivers. Every issue that I have seen has at least one major article regarding MS, and a few smaller articles. The July/August 09issue's cover story is about singer Victoria Williams and how she copes with her MS. To subscribe you can call 1-800-422-2681 or visit their website, www.NeurologyNow.com

-The June/July 09 issue of Health Monitor featured Montel Williams and his battle in coming to terms with an MS diagnosis on the cover. This is also a free publication, available from your doctors office. It is available at home, you are supposed to fill out a card on the back of the magazine and mail it in. Not helpful if you don't have the magazine in your hand! Check out their website at www.healthmonitor.com , there should be a spot to sign up for a subscription there.

-If you are a mom/female one place that I have found very helpful for peer support/questions is www.Cafemom.com (sorry boys!). You set up a profile, similar to myspace or facebook, but there are two great MS support groups there. Moms with MS, and Moms with Multiple Sclerosis. You will find a diverse group of ladies dealing with all sorts of symptoms/issues, on a wide range of therapies. If you have a question (of course all questions should also be directed to your Dr.!), or just need to vent this is a great resource.

Of course there are also the major MS groups. One of them is the National Multiple Sclerosis Society, www.nationalMSsociety.org

Support Meetings

Cindy has taken it upon herself to organize monthly support/self help meetings.

Multiple Sclerosis Self help groups are meant to be a source of information and support to those in attendance. It is an environment for people to gather and share information.

People with MS, family or friends of someone with MS are all welcome to participate.

Meetings are once a month. They are scheduled for the second Friday of each month from 6:00 to 8:00 pm.

They are held in Classroom A at the Northeastern Nevada Regional Hospital in Elko. Ask the reception desk for directions. (The classroom is through the cafeteria).

For more information or questions please contact Cindy 775-738-4564.

Welcome!

The purpose of this blog is to connect all of those dealing with Multiple Sclerosis in some form (whether you have the disease, or are the family memeber or friend of someone with MS). To share information and experiences, support each other, and even vent a little if you need to (please keep it clean! Comments will be monitored and inapropriate content will be deleted).

But please, if you have anything to add/correct, whatever, leave a comment!