Tuesday, December 21, 2004

My band of brothers

Recently I joined a internet support group for adult guys with Duchenne's. There are alot of folks on this group that have beat the odds that the medical establishment have set upon us. Many of us in this group are vent users that are battling to keep on thriving and surviving against our disabilities.

Even though I've only known these guys a short time and may never meet them in person, I consider them my band of brothers.

They are there for me when I need to talk about the many issues that my disability brings up. I can't put into words what it means to talk to others who have been in my shoes. There is an understanding there that no one but someone affected by Duchenne's can fully understand.

These guys have demonstrated a tremendous will and they inspire me to fight on. I guess that’s what brother's are for.

I want to extend Season's Greetings to everyone. It's my hope that everyone will have a safe and joyous Christmas.

The Nodakwheeler

Monday, December 13, 2004

Legislative Working Group

Friday I went to city hall for the first meeting of the Jamestown Legislative Working Group. The working groups around the state deal with disability issues that will be dealt with during the 2005 legislative session. It was a small group but the meeting was well worth attending.

The two Representatives that serve the Jamestown district were in attendance. I learned a little more on the legislative process and was able to tell my elected officials about my situation of wanting to receive home based medical care.

This upcoming session should be interesting. There is potential to change things greatly for North Dakotans with disabilities. I will post updates regularly throughout the session on how it's going with the legislation that I'm helping to get passed.

The Nodakwheeler

Thursday, December 09, 2004

Live Strong

The other day I received a Live Strong bracelet in the mail. They are the yellow ones that benefit the Lance Armstrong Cancer Foundation.

This bracelet is much more than a piece of yellow rubber. It is a symbol of strength to me. I wear it with a sense of brotherhood for all who have fought tough battles in life. Life was never promised to be easy but if we try to live as strong as we can, there's no limit to what a person can accomplish.

Tomorrow I will be attending a strategy planning meeting for the upcoming ND legislative session. I hope that this meeting will be a step towards positive changes for all North Dakotans with disabilities. More on tomorrow's meeting in the next few days.


The Nodakwheeler

Sunday, November 28, 2004

An Encouraging Word

Last week I got an email from a gal named Sara. Sara is a home care nurse that lives in Southeast Minnesota. She takes care of a young man with Duchenne Muscular Dystrophy who is on a vent and trach.

Anyways, she read my article in the latest IVUN newsletter on wanting to get out of the nursing home and live in the community . She wanted to tell me that it was great what I was doing and to keep being persistent.

It's hard to put into words what it meant to hear this person I've never met giving me such encouragement. She made me feel so positive about my effort to try living again back in the community. All I can say to that is thanks Sara!

People with disabilities and their families just want a system that provides equality and not restriction in living life. Until things change, the fight for equality goes on.

The Nodakwheeler

Tuesday, November 23, 2004

Every second counts

Last night I started reading Lance Armstrong's second book “Every Second Counts”. This book covers his life after battling cancer, having kids, and winning his 1st Tour De France. In the first chapter he talks about living his daily life after facing death. He tries to do all he can to get the most satisfaction out of life. He said that we all have a choice how we handle each day. I very much agree with that.

My disease of Duchenne Muscular Dystrophy has made me think about death. Something not pleasant mind you but a reality none the less. When I was having respiratory failure, I made a choice to go on a ventilator to stay alive. People have said it was a brave thing to do but I really don't think so. I just did what I had to do to keep going, simple as that. I wasn't ready to quit living.

Now that those days of transition are over, I now face each day with many possibilities. I have tried to choose to live with as much of a positive light as I can. Though some days I get down about things and that’s fine but I just can't stay that way. I just find something to refocus me on where I want life to take me.

I just want to keep spending time with my family and friends, advocating for people with disabilities, educating people on vent use, and enjoying the things I love like music, reading, my computer stuff.

Life is short and precious. We need to make every second count.

The Nodakwheeler

Thursday, November 18, 2004

Back To School

Tuesday I went back to school. Well kind of.

I went over to Jamestown College to speak to a class of student nurses about my life as a vent dependant adult. I spoke for an hour about my disability and how I came to need a ventilator. Also I addressed the pros and cons of needing a vent to breathe. Thankfully there are more positives than negatives.

It was a positive experience for me, and hopefully the students learned some valuable things from my life experiences. It's important to me that people in or entering the medical field can see that life still has a high quality for vent users. There may be an opportunity to speak to another class of student nurses next year. I look forward to doing it again.


The Nodakwheeler

Thursday, November 11, 2004

IVUN article is now online!

I apologize for not posting on a more regular basis. There are just times when I don't get to it.

Yesterday, the International Ventilator Users Network (IVUN) posted to the net my article that I wrote for their Fall 04 newsletter. They are a great organization and a big help to all the vent users out there. To view my article follow this link! or you can pay a visit to IVUN's web site..

There's not much else going this week but next Tuesday will be busy. I will be giving a presentation to the student nurses at Jamestown College. I will be talking about my life on a ventilator and how it's impacted my life. This is an excellentt opportunity for me to share my thoughts and experiences with future nurses. I will post how everything goes. Until next time.


The Nodakwheeler

Monday, October 25, 2004

I'm Back!

I am finally back to update my blog. I have been dealing with some health issues over the past few weeks but everything is back to normal. It just takes a little time to ride out the bumps in the road.

Today was a good day with a couple positive things that happened. First off I had a article published in the IVUN Fall 2004 newsletter. It came in the mail today and it turned out awesome. I love to take every opportunity I can to share with people the many barriers that ventilator users face. If the article is posted on the net, I will put the link on my blog.

Tonight I watched the Brooke Ellison Story on A & E. Brooke suffered a spinal cord injury as a young girl and she also uses a vent to breathe. The movie deals with her life after her accident and her attaining a degree with honors from Harvard. It is so great to see disability covered in a positive light. This show really inspired me to strive for the best in my life. You go Brooke!!!

Tomorrow is game 3 of the World Series. Can the Red Sox go up 3-0 and be one step closer to making history? We shall see.

The Nodakwheeler

Tuesday, October 19, 2004


My blog will return October 22. Sorry for the delay.

The Nodakwheeler

Monday, September 20, 2004

no posts

There have been no posts lately cuz I have been under the weather with kidney stones. Tomorrow I travel to Fargo for a lithotripsy to hopefully remedy the situation. I will get back to posting later this week so stay tuned.

The Nodakwheeler

Thursday, September 09, 2004

Feedback/New Project

I have gotten so much positive response from last weeks articles in the paper on me. The support people have shown me has been awesome. It gives me the energy to fight for a brighter day, when ALL people will disabilities are treated as equals in our society.

On Tuesday I started something that I think will be good for me. There is a transition prgram in town thats helps kids with disabilities get ready for life after high school. One of the students from this program will visit with me twice a week for awhile. I am able to share my experiences and answer questions about my life. He is a pretty cool guy that likes computers and the Vikings. So we will have no problems getting along. I am looking forward to some good visits.

I am off to eat lunch and then go out and enjoy a nice day.


The Nodakwheeler

Friday, September 03, 2004

Great day - part two

The Jamestown Sun ran the last part of my story in today' s paper. Follow this link to view part two.

It has been a great opportunity to educate the general public, elected officials, and others on the good possibility that I could regain my independence. The government must assure that folks with disabilities can live in their own home and not in an old folks home. We can provide quality care to many more in the community and at the same time save money. We must keep working to demand better from the system that serves us.

Today I am going outside to enjoy a 80 degree fall day in the great upper midwest. Til' next time.

The Nodakwheeler

Thursday, September 02, 2004

Great day - part one

Today is a very good day for me. My hometown newspaper the Jamestown Sun is ruunning a two part article on me. The first article can be viewed by following this link. I will post a link tomorrow for part two.

These articles deal with my life on a vent and my quest to live in the community instead of in a nursing home. It is exciting for me to share my story with others and speak out on community based care versus instituitional care. I am working hard to help find solutions for nursing home alternatives so people can live in freedom. That is my hope for the future and we must keep working until this becomes a reality.

Tomorrow I will post the second article, so stay tuned.

The Nodakwheeler

Tuesday, August 31, 2004

Short post

It is finally summer out today. I am going to go visit some family today and catch some rays also.

Sorry for such a short post but I will make up for it tomorrow.

The Nodakwheeler

Thursday, August 26, 2004

A great day

Today I attended a meeting with several department heads of the ND Dept. of Human Services and other concerned folks. We discussed how to broaden the amount of community based services in the state for all people with disabilities. I was able to share my story of being on a vent and the barriers I face in wanting to return to living in the community.

We all had a good dialogue and talked about the legislative changes needed to allow for more people with disabilities to live in the community instead of in a institution. The local newspaper and a Fargo t.v station covered the meeting. I was on the channel 11 news tonight which was way cool.

I will keep fighting until all of us with disabilities are free to live where and how we want. There is much to be done but progress is slowly happening. I am glad to be working on ways to end the segregation of people with disabilities from society.


The Nodakwheeler

Tuesday, August 24, 2004

Busy week

It's a beautiful and sunny August day out. The next few days will be busy for me but maybe that will keep me out of trouble :)

On Thursday I will be attending a meeting with the brass from the ND Dept. of Human Services (DHS). Myself and other concerned folks are meeting with the DHS to look at ways to expand the Home and Community Based Services waiver in the state. If the waiver was expanded, people like myself in nursing homes would be able to have a better chance at living in the community.

The current waiver is too restrictive on the amount of help a person can get in the community. This leaves a nursing home as the only option for people who don't fit the waiver criteria. It makes sense to expand the current system and return people to their own homes. It also costs much less than a nursing home or other medical facility.

I hope some progress comes from this meeting. Look for a post on Thursday or Friday on how things went.

The Nodakwheeler

Friday, August 20, 2004

Try Your Best

It was very unseasonably cool last night with a low of 34. Not typical August weather that's for sure. Fall is on the way.

I am watching the Olympics tonight on t.v. It amazes me all the years of practice, sweat, tears, and dedication, these athletes put in. Many years are boiled down to one crucial moment, when everything is on the line. It's nor winning that matters but how hard you try.

This kind of attitude inspires me in my daily life. I try do the best I can but sometimes things don't work exactly the way we want. That's life I guess. Every new day brings the chance to do something great or make a difference somewhere. It is our choice if we want to do that.

Tne Nodakwheeler

Wednesday, August 18, 2004

A Windy Day

Today it is partly cloudy and windy here in the land of Nodak. I guess you never know what to expect in the weather department.

I have been writing an article for the next IVUN newsletter. It deals with the barriers that I and my felllow vent users face from the medical system in the U.S. It's frustrating when a person chooses a vent to keep on living but in many cases must leave their own home for an instituition to get care. How can this be happening in the great land of freedom? We must look for ways for all people to be included in society and not be separated from it. Things will stay as they are unless we as people with disabilities demand better.

I plan on posting my article here when it arrives in the next IVUN newsletter.

Tne Nodakwheeler

Monday, August 16, 2004

My First Post

I have decided to start a blog beginning today on my 29th birthday. The purpose of this blog is to share with you my thoughts and happenings that are going on in my life. I plan to make an entry every few days so stay tuned.

Today is a milestone of sorts for me. Since going on a ventilator, birthdays have taken on a much deeper meaning to me. Every year that now goes by means a year of experiences that I never would have had a chance to have if not deciding to be on a vent. Being around my family and friends everyday is the biggest thing i'm thankful for. They give me the strength to face the day no matter what battles come into my life. You never know where life's gonna go next and I wouldn't want it any othet way.

I've just updated my webpage also. Go to http://www.geocities.com/nodakwheeler and check it out!

By the way, August 16th 2004 is the 27th anniversary of Elvis Presley's death. Long live his musical legacy!


The Nodakwheeler