This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Advocacy Conference 2007

Tomorrow morning I get on a bus to head for Olympia for the 2007 Advocacy Conference. I will have the opportunity to meet with my State Representatives to discuss a variety of topics that directly effect people with MS. Some of these topics include Health Care Access & Funding, a Sales Tax exemption for Durable Medical & Mobility Equipment, Medicare Part-D Co-Payment Coverage, Transportation for Persons w/Disabilities, an Accessible Parking Violation Hotline (Mdmhvonpa...you may need to work on this for your state as well, lol), and the Definition of "Disability".

I have to tell you this last one makes me a bit nervous. I for one would like some clarification on this because my thought is that if the Washington State Supreme Court changes the definition of Disability what will that do to the people who are already getting Social Security benefits that need them. Will that have an impact on them? I am really excited to finally talk to someone about Health Care Access & Funding however. I know that there is not a lot that can be done on a state level in regards to the two-year waiting period for Medicare for those people who are on SSDI and not SSI, however the state does have the ability to decide if recipients of SSDI qualifies for Medicaid....they also control the amount of spend down, deductible, and accessibility someone with a chronic illness has to other possible health plans....seeing how an illness like MS pretty much limits your options once you are no longer working.

I will be taking along with me my camera in hopes of taking lots of pictures and I promise to take good notes as well. This way when I return I can fill you all in on what I have found out. I figure if we don't stand up to make a change then who will? This is our time to let the world know what our needs are....and this is just the first step!

7 comments:

mdmhvonpa said...

"Accessible Parking Violation Hotline".... Ohhhh, yeah. Do they give out free aluminum bats with the number on it!?

Miss Chris said...

I like MDMHVONPA's idea!

Charles-A. Rovira said...

You know, being a podcaster you'd think I'd be used to music, (heck, I love music,) but I actually hate having to look at a darn page, scrolling furious and furiously up and down the page trying to shut the friggin' page up!

Sorry but you have to turn the audios and videos by default when they load.

I won't be back until somebody tell me they your site is safe for my ears. (To paraphrase Samuel Johnson, Music is merely the least unpleasant noise.)

personallog! said...

Good on ya girl. Do your thing. Dont work to hard eh and take it easy when you get back.

Love ya
Dave

Jaime said...

Charles,
You must be using Firefox. This is a major problem with the Firefox formating....try using Internet Explorer! I am not sure what the deal is, but for some reason firefox just does not accept the blogging format for the music and videos. The advantage you have is that you are a podcaster and have everything through a podcast...mine is not set up that way...I would love to have you continue to keep in touch, and so I would suggest using IE from now on! :)
Jaime

Mystic Mountain Boutique said...

Charles, I use firefox and don't have this problem with Jamie's blog. Maybe it is something with your computer??? Hopefully you will get it figured out. Danielle

Trevis Gleason said...

Jamie:
Great fun to meet you last week; you flatter me. I think we got some good work done and, well at least they couldn't help but take note that we were there, eh?
Cheers to all on this site and I wish you and your family the best of health
Trevis Gleason


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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