Happy Holidays!

It's hard to believe that Christmas is again upon us. The time sure does fly that's for sure.

This past year has been a good one and there are a few highlights that I'd like to share. Last spring I started the Northern Plains Ventilator Support Network (NPVSN). The NPVSN is an Internet based support group that has become a growing forum for vent users to communicate. It's been awesome to meet many people from around the country and to have made many new friends. In the next year I look to expand the NPVSN and to continue meeting wonderful people.

2005 has also been a busy year for the disability advocacy work I've been involved with. In March I was interviewed by Tracy Briggs from WDAY TV in Fargo. She did a story on me being stuck in a nursing home and the great need for increased home and community based services/supports. The word needs to continue to spread that the current long term care system is not letting many people across this country choose where they want to live.

Also in 2005 I was selected by the International Ventilator Users Network to serve on their Consumer Advisory Committee (CAC). The CAC deals with issues and policy matters as it relates to the international ventilator community. We recently drafted a resolution that put forth our concerns as it relates to the current threats to Medicaid and other government programs. This resolution was sent to the President, several state Governors, and other important political folks. My hometown paper The Jamestown Sun also did a story on my involvement with the resolution.

These are a few of the highlights from the busy year gone by. There is much to do in '06 and I look forward to the adventures ahead of me.

Happy Holidays,

Mark

Murderball

I recently watched the acclaimed documentary Murderball and what a great show! Murderball follows the growth of Quad Rugby as it's risen to become an Olympic sport. The members of the US and Canadian teams are the main focus as the film lays out many different interesting story lines.

The thing about this movie I really like is the realistic and honest portrayal of active adults with disabilities. It's not a pity filled "oh poor me" movie but rather a film about people living life and doing what they want.

This film not only deals with athletic competition but with the everyday life of these athletes. It shows them as regular guys who like to party, have fun, and just plain enjoy life. Alot of the quad rugby guys have girlfriends and wives and love/relationship issues are portrayed in a open and honest way.

I hope many people with disabilities and able bodied folks check out Murderball. This film shatters many misconceptions about disability and it shows that people with disabilities can do anything they choose.

If you wanna check out a little bit of Murderball visit http://www.murderballmovie.com

Peace,

Mark AKA The Nodakwheeler

Winter/IVUN/Mark S.

The winter season has finally hit North Dakota this week. A combination blizzard & ice storm wreaked havoc on parts of the region. Oh well when you've lived in the northern plains, winter is just something that's taken in stride. The scenery sure is pretty with our first fallen snow and the feeling of the holiday season is in the air.

This week the International Ventilator Users Network put my recent newspaper article on the proposed Medicaid cuts on their website. To view the actual article please visit http://www.post-polio.org/ivun/images/BoatmanArticle.jpg It has been great to get the truth out there on the things that could devastate the lives of the poor and people with disabilities in this country. We must keep fighting and make the politicians accountable for their actions. The time for change is here and my hope is the 2006 election will bring that.

On Monday, I sadly lost a dear friend. My friend Mark Schager lost his strong and brave fight with Duchenne MD at the age of 38. He proved the medical establishment wrong by showing people with Duchenne's are living much longer quality lives. Mark had a great, funny, and intelligent personality that touched my life as well as many others.

Mark thanks for showing many of us with Duchenne's how to live strong and never give up the fight. Peaceful rest my dear friend.

The Nodakwheeler