Busy week

Tuesday I went to outpatient surgery for my first trach procedure but thankfully it wasn't much more than a glorified trach change. I have always had a cuffed trach since going on the ventilator back in 2003 and recently we've had trouble removing my old trachs. While I was under sedation, the doctor went in and pulled out the old trach, cleaned up some excess scar tissue, and then put in a new cuffless style trach. Things went fantastic and the entire medical team treated me very well. Hopefully this will be the end of trach problems for awhile.

We will be spending Christmas Eve here at the house and tomorrow we will be going out to dinner with Theresa's son David and his wife Sarah. On Christmas Day, we will be traveling out to near Superior to spend the day with Dustin's relatives. I definitely am missing having Christmas in North Dakota this year but I will be in touch with my family this weekend.

The best Christmas gift this year is the one of freedom. Regaining my freedom has been beyond a doubt one of the greatest experiences of my life and I want to thank everybody who has shown me their support along the way. There are more endeavors ahead in'07 and I look forward to sharing them with all of you.

Merry Christmas and a very Happy New Year!

Mark

I'd rather be a failure at something I love than a success at something I hate -- George Burns

Another good week

It's been another great week here in Missoula and the sun is shining bright on this Monday afternoon. Nothing too earth shattering has been happening but here's a few highlights of what's been going on.

On Saturday we went out to the Big Sky Brewery (they are famous for making Moose Drool) to check out the place and sample their wares. It's really neat to hang out there and even though I'm not a beer fan, I tried their special Christmas brew. I have to say it wasn't bad at all. We visited with a few other folks sitting near us and it was definitely worth the trip.

A little over a week ago we went downtown to attend a thank you celebration for U.S. Senator elect Jon Tester. It was pretty well attended and after the festivities we had the opportunity to speak with Jon on disability issues. We are planning on keeping in close contact with Jon and his staff on the important issues affecting all Montanans with disabilities.

I've been also working on getting a new power chair and I met with the guy from the medical equipment place. There are so many decisions to make but I have a great team of people assisting me. Hopefully I'll have my new chair by sometime this spring.

Always seems like we are on the run and I've finally got all my holiday shopping done. We will be heading over to Helena on Sunday to stay overnight for a Monday meeting Dustin needs to attend.

That's all for now and I'll be back with another update very soon.

Mark

Montana Thanksgiving

This past Saturday I celebrated my first Thanksgiving in Montana. Theresa, Dustin, and I went to visit Dustin's relatives near Superior which is west of Missoula about 50 miles. Dustin's relatives have been great and they made me feel very welcome in their home. I look forward to the next time we can get together.

My parents and sister celebrated Thanksgiving with my grandparents down at their place. My grandpa has been recovering from a recent hip replacement surgery and is doing very well. It has been great to be in touch with all my family by phone since moving here.

All 3 of us went to the Southgate mall for a little shopping on Black Friday. Was fun to check out all the different stores and the deals they were offering. After shopping, we met some friends and went out for mexican.

The rest of this week looks pretty quiet except for the Griz playoff game on Saturday. Our first blast of really cold weather has hit and it sure feels good to be inside with the pugs.

Until next week, stay warm and take care.

Mark

Coeur d'Alene

Last Friday, Theresa, Dustin, and I traveled over to Coeur d'Alene Idaho to visit our friend Moe who was visiting from England. We had a 3 hour trip and the mountains were absolutely gorgeous as we made our way across western Montana & northern Idaho. We met at Red Lobster and had a great evening together. It was great meeting Moe and he is a very nice guy. Hopefully we will get to have the opportunity to see him again soon.

We will be celebrating Thanksgiving with Dustin's family over in Superior on Saturday. I look forward to be spending the holidays with Theresa and Dustin. I'll surely miss my family very much during this season but my new found freedom is reason for us all to be very thankful. I'll try to post some Thanksgiving pictures next week.

I have had a few minor trach issues lately and last week I went to see Dr. Haller who is an ENT. He is a great doc and I'm definitely in very capable hands. He ran a scope down my trach to get a good view of what's going on. After scoping we decided on doing a trach dilation procedure and possibly lasering some of the scar tissue inside my trach site. It's a very simple outpatient surgery and I'm scheduled to have it done December 19th. A nice early Christmas present :-)

I want to wish everyone a very safe and happy Thanksgiving! I'll be back with another post next week.

Peace,

Mark

My new look

Tuesday night was hopefully a turning point in the direction that our country is going. It's been great to see the Democrats take back control of the House & Senate after a hard fought election season. The President got a well deserved defeat and the Executive branch will now need to be more accountable to the American public. Hopefully the Iraq mess can be straightened out fairly soon and we can pay more attention to matters here at home.

On Tuesday, Theresa, Dustin, and I went to our neighborhood polling place to volunteer. We were there to help keep track of the registered voters who came in to vote.

I got to the polling place to vote before we started our shift and found out that I wasn't listed in the voter roster. The election judge called the courthouse and it turned out there was a mixup with the mail and my registration form arrived late. To vote I had to go downtown to the courthouse to register and then I could vote at the same time. After our adventure at the courthouse, we went back to the polling place and finished our shift. Was a great feeling to participate in this election and the turn out of voters was really good as well. I'm hoping to help out again in future elections.

My uncle Randy stopped on Wednesday night on his way through Missoula on business. Sure is great to see some family stopping through Missoula to visit. My uncle gets to Missoula about once a month and I look forward to his next trip to town.

As promised, I've included a picture of my new look and my two buddies Harley and Ugga. I thought if I'm going to live in the mountains, I might as well look the part :-) The beard may come in handy this weekend as we are expecting to receive our first snowfall of the season.

That's all for this week's post. I'll be back next week with another update. Take care until then.

Mark

Back Online

This past week has brought the first real taste of chilly weather to western Montana. The lows at night have been pretty cool but a warming trend has brought milder temperatures this weekend.

I've finally gotten my computer set up and connected to the Internet. I'm very happy to have this done and I'll be online much more than I have been in recent weeks. I can be reached by e-mail at nodakwheeler@yahoo.com and on Yahoo Messenger under the ID jamestownndak

Yesterday I was given a new mouse to trial from MonTech. It's called a SmartNav mouse and I must say it's already transformed how I access my computer. It uses a sensor placed on my computer screen in conjunction with a tiny metallic sticker worn on my nose. All I do to move the cursor is to very slightly move my head and to click I use a easy touch button held in my hand. It's working great so far and once the trial is over, I'll be able to get some funding assistance to purchase it. Technology these days is truly amazing and the opportunities for people with disabilities is ever expanding all the time.

This Tuesday will finally mark the end of a very contentious and hard fought election season. I've gotten registered and look forward to casting my vote. I'm hoping the Democrats can take back the Congress and House and get this country back on the right track. Theresa, Dustin, and I will also be volunteering at our local polling place and I'm sure it will be a good experience. Tuesday night will be filled with intense interest as we watch all the results come in.

That's it for this week and Sunday will be mark two months that I've been in Missoula. Next week I'll return with another update and a picture of my new look.

Peace,

Mark

Meeting Jon

Last night, Theresa, Dustin, and I went to the Iron Horse Pub and Restaurant for a political rally for U.S. Senate candidate Jon Tester. He spoke to a packed house of supporters, encouraging everyone to talk to their undecided friends about the need for change in Washington D.C. I got to meet Jon and he's a real blue collar guy who wants to bring much needed integrity back to the federal government. After the rally we went downstairs and had a nice relaxing meal. We are planning to attend another upcoming Tester rally in Missoula the night before the election.

Things have continued to go very well here and I fully consider myself a Missoulian and Montanan. There always seems like there's something to go do and I really like that a lot. Last week we attended a Q & A for the local folks running for state legislative offices. It was a good opportunity to learn about some of the upcoming disability issues that will be addressed in the upcoming session of the Montana Legislature.

This week has been a little quiet but it's really nice sometimes to be at home. I had a slight problem with my wheelchair tilt and the wheelchair guy was out to fix that problem for me. I'm also awaiting the arrival of my computer. This will allow me to be online a little bit more then I have been in the previous weeks.

There's not a lot else to report in this entry but I will be posting another entry very soon. Until next time, take care.

Mark

Introducing Harley

I thought that I would start this weeks entry by introducing everybody to my favorite little black Pug. Her name is Harley Star and she's one of the sweetest Pugs that I've ever met. When Theresa came to Bozeman to pick me up, she brought Harley along for the ride. All the way home Harley was right under my feet. Ever since that moment she has been bonded to me. When I go to bed at night she's right there to snuggle in with me. She's usually on my pillow sleeping before I can even get into bed. Although Harley is my favorite, I've really grown very attached to all the Pugs.

This past week has been filled with a couple of big highlights. On Thursday my Uncle Randy stopped in for a visit on his way to Butte. It was a great visit and it was awesome to see some family. Randy got to meet Theresa and Dustin along with the Pugs. His job will bring him occasionally to the Missoula area and I look forward to our future visits.

This past week brought a very joyous event to our family. My cousin, Dawn, arrived back in the U.S. after serving the past year in Iraq. I'm so very happy that she arrived home safely and I am proud beyond words of her service. We are quite relieved that she is back in the USA. Hopefully the day will come very soon when all the soldiers can return to their families.

On Saturday night we all went to Nine-mile for dinner with Dustin's family. It was great to meet his grandma, mom, aunt and their families. Everybody was very kind and I was welcomed warmly by them all. I look forward to seeing them again very soon.

During this upcoming week I will celebrate 6 weeks of freedom from the nursing home. I must give my deep thanks and gratitude to my family and friends for all the love and support that they have shown me. Although I am far from home, I hold all the special people in my life very close to my heart.

Well, it's time to go to bed and snuggle with my sweet Harley. Until next week stay well.

Mark

Rolling Stones ROCK Missoula!

Theresa, Dustin and I were a part of Montana history last Wednesday as the Rolling Stones played under the Big Sky for the very first time and rocked Missoula to its core!

Words like "fantastic" and "incredible" don't do justice to what seeing the Stones is like in person. The Stones played their brand of raunchy, bluesy rock to a capacity crowd at Washington-Grizzly Stadium. Mick, Keith, Ron and Charlie had amazing charisma and energy for aging veteran rockers.

The stage itself was larger than life. Standing at 6 stories from the stadium floor, rumor has it that it's the biggest stage ever to go out on world tour. The stage along with it's 50' plasma screen and pyrotechnic rigging, also held a few hundred members of the audience. You could feel the electricity as the opening chords to Jumpin' Jack Flash were played.


The set was filled with classic Stones tunes, amazing pyrotechnics, 20' high flames, a blazing multi-media presentation, and of course Mick Jaggers legendary gyrations. They also pulled off a few surprises like riding a section of stage through the crowd to the north end of the stadium where they played 3-4 songs. Keith Richards sang an old acoustic blues number as well.


This totally awesome night is just one of the many things I've enjoyed in the one month of nursing home freedom that I've had so far. I must also give a big thanks to Theresa and Dustin for being wonderful hosts and making me feel right at home here in Missoula.

I must say that Missoula sure knows how to throw a party and that I can't wait for the many more great times that lie ahead.

Peace,

Mark

Sunny Weekend in MT

It was a beautiful, sunny weekend here in Missoula with temperatures in the 80's. Hopefully there will be a few warm days left before winter arrives in the mountains.

It's been over three weeks since my freedom has started and I'm loving Missoula more and more every day. It seems like there's always something to do and I really like being able to go places when I want to.

Last week I attended the Summit Independent Living Center's 25th anniversary celebration. I was able to meet more great people and everybody has been very welcoming to me.

On Saturday we went to visit some friends who have been patiently awaiting my arrival so that I could become involved with ADAPT. Bob and Marsha travel the country with ADAPT doing actions to help free people from nursing homes and assist them to live in their communities. Theresa, Dustin and I along with other advocates are looking to start an ADAPT chapter here in Montana. I'm very excited to take part in this and it's a great advocacy opportunity to be involved in.

The road crew for the Rolling Stones has decended upon Missoula to get ready for Wednesdays concert. To read more on the Rolling Stones visit to Missoula you can visit www.missoulian.com I'm really pumped to see the Stones in concert and I will have a lengthy blog entry after the concert.

Gotta run and get some supper but I'll be in touch very soon.

Peace,

Mark

High Times in Helena

On Friday (9/22) I got home from Helena after attending the Montana SLTC (Senior & Longterm Care) conference. Theresa, Dustin, and I had such a blast and I met so many great people from around the state. Was a great opportunity to network with other folks with disabilities, caregivers, and the state people who run the home/community based waiver programs in Montana. Very refreshing to meet people in the social service arena that care about the folks they serve.

The drive home from Helena was pretty cool. After leaving Helena we soon began our ascent over MacDonald Pass. The top of MacDonald Pass is at 6300 feet and the view was breathtaking. Was definitely different to see a touch of snow in September!
On October 4th we will be attending a once in a lifetime event here in Missoula. The Rolling Stones will be rocking Grizzly Stadium as a part of their 'A Bigger Bang' World Tour. The Stones will be awesome and I can't wait til they take the stage. Hopefully I can get some pictures to post.

I am very happy to be celebrating the 2 week mark of my nursing home liberation. Living in freedom is a great thing and I couldn't be happier. I will continue to fight so many others can have a better life instead of a life of institutional imprisonment. I will continue telling my story and refuse to give in until real change happens for all.

Peace,

Mark

Rainy Day

Greetings from Missoula. Been raining here the last few days with the temperatures staying around the mid 40's. There was snow up in the mountains, but down here in the valley there was just rain.

It's hard to believe that I've been free of the nursing home for a week now. I'm loving my new independence and am getting very comfortable with my new life. The next few weeks will keep me busy and I really look forward to that.

I'm still busy getting settled in and yesterday was a productive day. I met with my new home care company and they are all set to take over my respiratory needs. The first new nurse also came yesterday to orientate. It went pretty well and it will be nice to get the other nurses trained.

On Tuesday we are all heading over to Helena for the Montana Senior & Longterm Care Conferenece. I look forward to checking out Helena and meeting many new people. I'll post a few pictures from our trip when I return.

Not much on tap for tomorrow but I plan on watching the Seahawk game tomorrow afternoon. I'm off to bed for now but you can look for a post sometime next week.

Take care,

Mark

Montana Freedom

Last Sunday I started my new life outside of the nursing home, here in Missoula, Montana. It is truly an amazing feeling to be living in freedom and not in the confines of an institution. Missoula is a beautiful city and it's awesome to see the mountains everywhere you look.

This week has been busy with adjusting to a new routine, getting my new services set up, and a visit to Target and Albertsons. There have also been new people to meet and everybody has been great to me.

I am living with my friends Theresa and Dustin and their 5 adorable Pugs. Dustin has the same type of Muscular Dystrophy I have and he is also a vent user. Both Theresa and Dustin are very involved in disability advocacy and political issues here in Montana. I very much look forward to getting involved in these issues myself.

In the weeks and months to come you can look for frequent updates to my blog. I'll be posting about my Montana adventures and I will be sure to include many photos as well.

On a personal note, I must extend my thanks and gratitude for all the support that my family and friends have shown me in my battle to exit the nursing home. I miss all of you deeply and will stay in touch.

I will go for now but you can look for another update very soon. Take care.

Mark

Fall is upon us

Whew! Labor day is upon us and with it the unofficial end of summer. Boy it's been awhile since I have posted on my blog but summer has kept me pretty busy. Here's a brief update of the last couple months. Starting in mid September you can expect much more frequent updates here of what I'm up to.

It's been quite a warm summer here for everyone in the upper Midwest. I've spent alot time outside enjoying the weather and the many sunny days we've had. I am always on the go somewhere, whether it be going for a long walk along the reservoir, visiting friends or hanging out at my parent's house. I try to make the most of summer because all too soon the chill of winter will be here.

I have also kept busy with moderating the Vent Support Network. We keep steady with adding new members and I'm so amazed that during this summer we surpassed the 100 member mark. My goal has been to give my fellow vent users and myself a comfortable place in which we can communicate. I couldn't be happier that this has become a reality. There are a couple of our members who are attending college for the first time this fall. I'd like to wish them all the best as they set out on this new journey.

September is here and I very much look forward to this fall. It will be pretty busy but I plan to relax and enjoy watching some football and taking in some walks in the crisp air of fall.

Lastly there is something that my family and I have been waiting for. My cousin Dawn, a 2LT in the Army has been serving for the past year at Camp Anaconda Iraq. She will be home around October and we all are praying for her very safe return. I'm very proud of her service and what's she's accomplished. Hope soon we can start bringing some our military folks home for good!

Peace,

Mark

A brief update

A cloudy Tuesday morning out the window but the sun is trying to come through. Summer is finally about here on the calendar and the weather has been great.

It's been awhile since my last blog update but here's a few things I've been up to.

I spent Father's Day with my folks and despite the wind, it was a pretty nice day out. We grilled some chicken and had a nice relaxing Sunday afternoon.

I'm starting to work on the next newsletter for the Vent Support Network. Hopefully it will be out very soon. I'll post when our newsletter is ready to roll.

There isn't much else going on but I'm managing to sit outside or go for a walk everyday. June has had some terrific days and hopefully the nice days will continue.

I'll try to post again very soon. Take care until then.

Peace,

Mark

Back Home

With a heavy heart I must announce that I returned home last night to Jamestown. Things didn't go as planned out in Missoula and I thank everyone who has given me support during this time. Sorry for this brief post but I wanted to let everyone know I'm ok.

Be in touch soon......Mark

Peterson Editorial

This editorial appeared in today's Jamestown Sun. Was written by a friend of mine who also is fighting the unjust system here in North Dakota.

Peace,

Mark


It’s unfortunate Boatman is leaving North Dakota

Gyle Peterson Fargo

It will be a sad day on May 15 when North Dakota will lose one of its citizens. The person I’m referring to is a man of courage, strength, compassion and intelligence. A man who stands up against injustices and fights for human rights for himself and others. But he will not be missed by the state of North Dakota, because he is virtually being exiled by the state.

Mark Boatman, a 30-year-old ventilator-dependent individual with muscular dystrophy who was forced into a nursing home in Jamestown three years ago, is moving to Montana because his own state cannot provide the care he needs, at less of a cost, than what he is being imprisoned at within a nursing home. Where is the justice and humanity in that?

Because of North Dakota’s inadequacies in taking care of its ventilator-dependent citizens, and its "lack of funding" (funny how there’s never a lack of funding when it comes to the Long Term Care Association), Boatman feels that in order for him to live a half-way normal life, in a noninstitutionalized setting, he has to move away from his friends, relatives and parents.

In October, the state of North Dakota and Medicaid will supposedly have a waiver that will provide care for Boatman outside of the nursing home, but he doesn’t feel he can trust either North Dakota or Medicaid to do this. I hope he’s wrong because, being in a similar condition and having my insurance money run out soon, I’ll be next, only I’ll be exiled into a nursing home.

Citizens of North Dakota can help by calling, writing or e-mailing state legislators to provide more funding to in-home services.

Goodbye ND

There are 5 days to go until my departure and the last minute preparations are in full swing. This will be the last post until I'm in Missoula. I may be away from the computer for a brief period of time but will return with news on my arrival and maybe a few pictures too.

Yesterday I had the pleasure of meeting Kevin Wallevand from WDAY-TV out of Fargo ND. He came out to do an interview on my going to Montana to get out of the nursing home. Kevin is a top notch journalist and I'm positive that this story will expose to many how North Dakota treats some of it's citizens with disabilities. My story was the lead last night on the news and what a great feeling to speak out on how unjust the system is here.

Theresa and Dustin had planned to spend the week here in Jamestown but there was something that came up preventing their journey east. They are eagerly awaiting my arrival on Tuesday and I can hardly wait to get there and meet everyone. Will be a wonderful feeling to roll out of the van and take a breath of mountain air.

Next couple days will be busy with packing, getting the van, getting needed supplies and saying goodbyes. The love and support that has been shown to me by family, friends, and complete strangers has been so amazing and uplifting. It helps knowing that many people are wishing me the very best in all that is ahead for me.

Goodbye for now North Dakota. Montana, ready or not here I come ;-)

Peace,

Mark

Brayden Visits

The time for my new journey to begin is getting close at hand. It's a very strange, exciting, and nervous feeling to know in 14 days that I'll be living outside the nursing home. I believe my return to independence will be a smooth one and I can't wait to for things to begin.

Yesterday my uncle and aunt stopped through Jamestown along with my cousin's little boy Brayden. He is such a sweet, cute and loving 18 month old. He's an active little guy that loves to explore and he's also quite the talker. We had some pizza together before they left and it sure was nice seeing them all. I had to share his picture on my post today.

I've had a great response to my article in last weeks paper. Many people have wished me well and that means so much to me. It's also important that people know why I must leave this state to live independently. It's great to have the opportunity to keep telling my story to as many people as I can. I'm just 1 situation but it must be remembered that there are many others who are stuck in nursing homes waiting for their independence.

This week will the last week of relative calm for me. There's a bit of packing to be done and some more good byes to be said. I'm also preparing for Theresa and Dustin to visit from MT during the week before my departure. More on them next week.

Time to get going for the day. I'll be going to the Kiwanis pancake feed today with my family. Should be a nice time on a rainy Monday. Rain has been great over the weekend and it's sure greening things up.

Peace,

Mark

Sun Article

Here's the text of the article that the Jamestown Sun ran today on my upcoming move to Montana.


Advocate for people on ventilators to move to Mont.


By David Maack The Jamestown Sun

Mark Boatman is giving up the fight and moving next month to Missoula, Mont.

The long-time advocate for people on ventilators has an opportunity to live on his own and he’s taking it.

Boatman, 30, has Duchenne Muscular Dystrophy and has been living in Central Dakota Village, a senior citizens residence for about three years. He has been trying to convince the North Dakota Department of Human Services to allow him to move out of the care facility for nearly two years.

Boatman is on a respirator and requires an attendant to handle any problems that arise with the ventilator, as well as dressing, bathing and eating. He is able to navigate with a motorized wheelchair which is controlled by a “straw,” or control, in his mouth.

“The state isn’t cooperating with integrating me,” Boatman said.

The level of care Boatman would require if he were to live on his own is beyond the state’s Medicaid guidelines, said Maggie Anderson, director of medical services for the DHS. She spoke in general terms because of privacy issues.

“The highest rate that can be paid is the highest monthly rate for a nursing facility,” Anderson said.

In North Dakota, the limit is $10,000 a month. For Boatman to live on his own, it would cost the state more than that to provide 24-hour-a-day care for him, Anderson said .

Boatman has been trying to find a way out of his situation since he’s been in the nursing home.

“I’m going to live with a guy that has the same kind of muscular dystrophy as I have. He is my age and has a live-in caregiver,” he said.

Boatman met Dustin Hankinson through a support group and the men discussed for several months the possibility of Boatman moving to Missoula.

“Montana has a lot better system for taking care of people in the community,” Boatman said. “They will pay for a skilled caregiver and eight hours of nursing a day. For someone who wants to pursue life, (a nursing home) is not a real conducive environment.”

A special Medicaid waiver in Montana means he is eligible for 24-hour nursing care, seven days a week. Boatman has been on a ventilator for about three years. He and most other people on ventilators just need a person skilled in what to do should something go wrong, he said.

He was diagnosed when he was 5 years old, and has outlived expectations for when he would die. Ventilators have added 10 to 15 years for people who are diagnosed with Duchenne, he said.

“I feel the Department of Human Services has let me down. I’ve lived here all my life and I’ve been on Medicaid most of my life,” Boatman said.

Still, the decision to move was not easy, he said.

“I’ve got to leave my family, my friends. I’ve lived all my life in Jamestown. We’re a close family and it’s not going to be easy. Moving 850 miles to Missoula has not been an easy decision,” Boatman said.

Boatman will continue with the ventilator support group through the Internet.

“That takes a great deal of my time each day. That has been very helpful, hearing from other people and how they live,” Boatman said. “Sometimes it’s very tough to face reality in a nursing home.”

Boatman has been researching Missoula, and likes the opportunities there. It has two trauma-certified hospitals, a bonus for people like him who have special health needs. He is also planning to take some courses at the college.

The capitol, Helena, is 90 minutes away, and he will have some advocacy opportunities during the legislative session. He also intends keeping an eye on North Dakota politics. He is hoping to eventually do advocacy work on the national level.

Boatman has a blog and intends to keep people informed about his life through it. He has already made several posts to it about his pending move. More details are at http://nodakwheeler.blogspot.com.

Sun reporter David Maack can be reached at (701) 952-8454 or by e-mail at davidm@jamestownsun.com

The Work Begins

The new week has begun and there are 21 official days until I am Missoula bound. Things will be really picking up from here on in but I'm excited to be gearing up for this new change in my life.

Starting this week I'll be getting ready to begin packing and organizing stuff for the move. Getting a little packing done is my big goal of the week as everything else is pretty much ready to roll.

The picture in this post is of Mt. Jumbo in Missoula. The house I'll be living in is about a couple blocks from the base of Mt. Jumbo. There are deer and elk that hang out up there and they can easily be seen from the house. I'm getting very excited to take in the amazing scenery around Missoula. Will be very different than the grassy plains of North Dakota.

The weather over the past weekend was great. I went home Saturday and sat in the yard all afternoon while my folks tended to some stuff around the house. Yesterday I also was outside soaking up rays in the park which felt great. Supposed to be much cooler this week but hey I guess it's still April :-)

Well I'm off to make some phone calls and get a few things done. I'll be back next Monday with the May Day edition of the Montana Countdown.

Peace,

Mark

Smooth Week

Here in North Dakota the weather the last few days has felt like June instead of mid April. It just amazes me at how the seasons can so quickly change up in the northern plains.

I had a very good Easter weekend and was able to be at my parents on Sunday for the day. I was able to sit outside for quite awhile and my dad and I walked out to the nearby golf course. Dinner was great and was just very nice to relax at home.

This week doesn't look too bad. The Jamestown Sun (local paper) will be publishing an article on my move maybe this week or next. I'm looking forward to people knowing why I must leave this state to gain my freedom from the nursing home.

Tomorrow night I plan to attend the Williams and Ree show at the Civic Center. Should be a great time and an enjoyable evening. The Cubs have been doing great also and I enjoy watching the games when they are televised. Hoping the Cubs will make the summer very exciting.

Things are pretty smooth on the Montana front. I have appointments all set with my new docs and case manager for when I arrive in Missoula. It's nice to see things falling into place and there have been many great people helping me make preparations.

That's about it for this week but I'll have a new post next Monday.

Peace,

Mark

5 weeks and counting

The sun is shining out this morning and rumor has it that it may hit 70 degrees today! It's exciting knowing that this weather will keep getting better and better.

Had an enjoyable weekend. Visited at my parent's house on Saturday and sat outside for a few hours. Felt great to be out in the sun even though I got a slight sunburn. The weekend ended on a high note as the Cubbies rallied to sweep the Cardinals in a 3 game series!

Things are going well on the Montana front. Last Friday I was able to secure a van to get me to Missoula in May. There isn't much going on this week except a possible interview with the local paper. I'll be spending Easter with my family this weekend.

Please keep me in your thoughts as the time for me to move draws near. I'll post another update next week. Have a Happy Easter!

Mark

The Countdown Begins

In about roughly 45 days from this past weekend, I'll be set to head out on my great Montana adventure. Every week from now and through my move, I'll be posting updates on how things are going.

This week will be busy with trying to finalize some transportation arrangements for my trip west. I have a couple of real good options but my final choice will depend on what I can get scheduled the best. Other than that, the week looks good. Just wishing on the weather getting warmer.

Here's a few highlights on Missoula for inquiring minds. Missoula is a progressive city of 57,000 that is nestled in the western Rockies of Montana. Missoula is known as the Garden City and it's home to the University of Montana, the Rocky Mountain Elk Foundation, & the Missoula Children's Theater. There also are many opportunities to enjoy the scenic outdoors in the area and Missoula is within easy driving distance of Glacier & Yellowstone National Parks. Missoula
also has a great webcam at http://co.missoula.mt.us/webcam/default.htm

Well another week begun and today kicks of the season for a majority of major league baseball. Another Cubs campaign starts and I hope to see them to well. If they don't well there's always next year they say ;-)

LTV Trial

Yesterday the RT came up with an LTV ventilator for me to try. The vent is sleek, lightweight & compact looking and at first glance is complicated looking to run but I wasn't going to be intimidated by that.

When the vent was shipped out for me, they forgot to send a full adult breathing circuit (tubing) with it. My RT had a pediatric circuit (tubing), so that's what we had to use.

Took the RT a few minutes to get things setup and ready for me but I was impressed how easy it was to hook the circuit (tubing) up to the LTV. She showed me how the batteries interfaced and how easy you could bleed in oxygen if you needed it.

She put me on the LTV and it felt much different than the LP10 that I use. Breathing kinda felt choppy and rushed at first and the RT explained how the LTV was using continuous flow and that my LP10 didn't have that.

She messed around with the settings a bit and was able to make me a little more comfortable. The BPM (breaths per minute) was set at 12 and I was still breathing at 26-30 BPM (breaths per minute). The breathing seemed not near as relaxed as the LP10 but the RT thought maybe having a pediatric circuit (tubing) could contribute to that. We did more tinkering and put the PEEP valve on and that went pretty good. She also explained the operation of the machine and how to lock my settings in. Didn't seem to hard even for me ;-)

I was happy she brought one up and the plan I think is to get a much longer trial of the LTV setup once I get to Montana. It probably will take some work but I think the LTV has real possibilities of becoming my new vent.

April 1st will be the start of my weekly Montana updates, so stay tuned for that over the few months.

Take care,

Mark

Anticipation

We have already entered March and Spring is at our doorsteps again. Spring to me has always been a time of anticipation and excitement. This year there is more excitement in my life than I can remember for a very long time. I'm excited that my life is moving forward and that my dream of freedom is almost at hand.

My big move to Montana is almost two months away and I can't wait to open this new chapter in my life. There are many new people to meet, new places to see, new challenges to take on, and progresses yet to be achieved.

The next 9 weeks or so will fly by as I try to ready myself as much as possible for the changes ahead. Starting on April the 1st, I'll be posting weekly entries here to document things leading up to my move and continuing through the summer. I'll make sure to include pics as well.

We recently held a poll at the vent group I moderate. We voted on changing our name from the Northern Plains Vent Support Network to the Vent Support Network. Our new website is at http://www.geocities.com/thevsn Our membership has also reached 60, and the future growth looks awesome.

Again start looking on April 1st for my moving updates.

Take care,

Mark

A New Road

Life has a funny way about it. We never know where life will take us or what tomorrow will hold in store. Everyday we go a little bit farther on the path we tread but sometimes we must explore a new direction.

Many of you know that I've been fighting very hard to get out of the nursing home and return to living in the community. I've had many great advocates fighting on my behalf to get the state of North Dakota to accommodate my needs in the community. Sadly, the battle hasn't gone like I've wanted it too and the state of North Dakota is showing no cooperation whatsoever in freeing me from the nursing home.

Sometimes when life seems stuck in neutral, all of a sudden new opportunities come along. Over the last several months, things have been developing and a new exciting possibility has been in the works.

There is a big change on the horizon for me. I've made the decision to move to Montana this May. I'll be trying a community based living arrangement that will hopefully give me the independence and opportunities I've been wanting for a very long time. It hasn't been an easy decision by any means but living in a nursing home will not give me what I want out of life.

I have great family and friends that have shown me love and support for quite a few years now. There have been many ups and downs but the love and support shown has always carried me through. This love and support will stay in my heart no matter where I call home.

The next several months will be a busy time for me. Lots to do but I'll keep posting updates. Have a great day and Happy Valentines Day.

Mark

I too have a dream...

This week we lost another civil rights pioneer, Coretta Scott King. Ms. King for many years has had the awesome job of carrying on the dream that her late husband started so long ago.

I was typing some emails this morning and I was thinking about the progress this country has made in civil rights over the years. Then naturally that led me to think about sadly how much needs to be done to fulfill Dr. King's dream.

I've grown up admiring the courage of people like Martin Luther King, Coretta Scott King, Rosa Parks, and many others who risked their lives, freedom, and safety to make this world a more equal and tolerant place. They achieved much progress but they also knew that the generations after them would need to carry on until the day every American is treated equal in this society.

As an advocate and a person with a disability, I'm troubled by many things I see going on. In my own environment and around this county, there are countless people who are incarcerated in nursing homes or state institutions for the crime of having a disability. I've talked to many people that are in the same boat as I am and we all want freedom and dignity in our lives. When will our dreams for equality come true?

I see other concerning things too. We are in a war with no end in sight. Our civil liberties of privacy are under attack from a President who can't be trusted and who thinks he's above the law. Civil rights and protections that have been hard earned are at risk of being unraveled by a Supreme Court that has taken a drastic conservative shift. The poor and minorities devastated by Hurricanes Katrina & Rita are waiting for help and money that may never come. Millions of Americans are without any medical insurance and can't afford to buy essential medicines or heat their homes. The list could go on and it's so sad that we are faced with these realities.

I see all this not so good stuff going on but I refuse to give up fighting for what’s right. Disability advocacy is my passion and I've met lots of great people doing it. These people inspire me everyday and give me the strength to fight on until equality is ours.

One last interesting thing. I was watching the news yesterday as they were bringing Ms. King's body to lie in state at the Georgia state capitol. They said she was the first black woman to ever receive that honor, which her husband ironically never received. Pretty amazing.

Lastly, I finished the Winter 20005/06 newsletter for the vent support I moderate. You can view it at: http://www.geocities.com/npvsn/january06newsletter.htm In the upcoming days I'll be posting a big announcement here on my blog.
Stay tuned,

Mark AKA The Nodakwheeler