npventsupport : Messages : 5987-6016 of 6016

A question from Kevin Holmes kholmes@... from Brentwood, New York. He is ready to hear from you.

My son Donovan Holmes has been using a vent 24/7 for 18 years now. He has a form of Congenital Muscular Dystrophy. Don has Medicaid nurses 24/7 again for 18 years. Presently he lives in an apartment on the side of our house. He eats with us and can come in any time, but spends most of his time in his apartment.

We are planning on moving to upstate New York in the Albany area in about 1 1/2 years. When we do we will seek a three bedroom apartment for the rest of us and a one bedroom apartment for Don. He will be on the same floor as the rest of the family and I, Kevin (Dad) will be the back up for the nurses. This will give Don an intermediate step in his quest for independence.

The next step will be for Don to get a one bedroom apartment in the city of Albany where it is happening much more for him. He will be able to roll to clubs and fun and excitement. I will not be close by so he will have to get one or two other people to sign up as back up for the nurses.

This brings me to my question. How many people do you know of that use a vent full time live independently? I know that they have help either a nurse or personal aide. If you could please give me an estimate for the USA and worldwide, that would be great. Do some people band together and live that way? Any help along this line would be greatly appreciated.

More from the Dad

Yes, Don has been using a vent and is trached (a vent full time for 18 years). Now he can breathe on his own for short periods of time. He uses an LP 10 on his chair and at his bed side. He uses supplemental O2 at night, but not during the day any more unless he is sick. We have two suction machines in his apartment and one portable that is not really too much good. Don gets nursing 24/7 and we always have some shifts open. I, dad, Kevin, am the back up. When there is no nurse I take care of Don. He likes the nurses better and that is OK. In planning the move to up state New York, Don will need to become more and more independent. I am getting older and at some point will not be bale to be the back up. That is why I am, looking hard for examples of people who live on their own and use a vent and trach. It has not been easy finding out the information. The number would seem small or I would have found many be now I would think. We the advent of smaller vents and such I would imagine that the numbers will rise.

#6015

From: MJ Purk <TWEETYROLL88@...>
Date: Tue Nov 17, 2009 7:23 pm
Subject: MJ Update: back in the hospital

bshanson68

Offline

Hi all:

This is Brenda emailing from Nationwide Children's Hopsital in Columbus, OH yet again. I am writing to get your help.

MJ was re-admitted to the hospital after 2 weeks at home after battling H1N1 at home, along with a lung infection (psuedomonas) and a GI virus. Right now, MJ is battling pneumonia, the psuedomonas, and an UTI. The doctors have decided to give MJ's belly a rest and she is now off GI food and getting food via her veins (TPN). MJ has been refluxing since then (we guess her belly really wants to eat or something, but it is clearly not happy.) She has aspirated some of the reflux as well - hence the pnemonia.

Anyway, MJ's doctor (Dr. Shell) issued MJ a challenge....to get 80 cards sent to her by tomorrow. Cards are printed out around 9am, so he issued MJ a challenge. Upon card delivery tomorrow, there should be 80 cards brought up. He does not believe that 80 people would send MJ a card. Lets show him how wide and big the world is. Please help and show Dr. Shell how many people MJ knows. Send it on to your friends too. Thanks.

1. Go here to create a card (http://www.nationwidechildrens.org/gd/applications/greetingcardpro/choosedesign.cfm)
2. Choose a card from the selection
3. On the next page, you have the option of using the default image, choosing from the ‘card’ gallery, or downloading a picture (one of your own or one from the internet)
4. The info you will need:
Patient’s first name (top line) - MJ
Patient’s full name - MJ Purk
Patient’s room number - T5103

NOTE: Any cards not printed tomorrow morning will be printed Wednesday, which will be great, too.

That’s it - and feel free to pass the info on!

If you prefer, real cards can be mailed to:
Nationwide Children's Main Campus
c/o MJ Purk, Room T5103
700 Children's Drive
Columbus, OH 43205

MJ Purk
SMA type I+, 21 years old
"You must not let your life run in the ordinary way; do something that nobody else has done, something that will dazzle the world. Show that God's creative principle works in you." ~ Paramahansa Yogananda

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and Personalized Merchandise!

www.our-sma-angels.com/b4sma - B4SMA, My organization
www.our-sma-angels.com/Margaret - My website
www.cafepress.com/b4sma - My Shop

#6014

From: Mark Boatman <nodakwheeler@...>
Date: Sat Nov 14, 2009 11:02 pm
Subject: Accident changes family's life

nodakwheeler

Online Now

http://www.floridatoday.com/article/20091114/NEWS01/911140316/1006/Accident+changes+family+s+life

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

#6013

From: Joan Headley <jlheadley@...>
Date: Sat Nov 14, 2009 2:32 pm
Subject: Videos online (Mtg at Salk Institute)

jlheadley

Offline

The videos from the Breathing & Sleep Symposium at the Salk Institute held on November 1 are available on line at: www.poliotoday.org. The meeting addressed other neuromuscular conditions in addition to polio.

#6012

From: Dan <drv@...>
Date: Tue Nov 10, 2009 10:37 pm
Subject: Re: Paying for in-home nurses

wheels1992

Offline

Health Care Reform And People With Disabilities
Health care reform cleared the House, but hurdles remain. What the changes could mean for you.

At 12:47 PM 11/10/2009, Mark said:

This is something I think a lot of us worry about. How will the Medicare cuts affect us.

Cheers,

Mark

--- On Mon, 11/9/09, Mark Boatman <nodakwheeler@...> wrote:

From: Mark Boatman <nodakwheeler@...>

Subject: [npventsupport] Paying for in-home nurses

To: "Vent Support Network" <npventsupport@yahoogroups.com>, "Duchenne MD" <Duchenne_MD_Support_Group@yahoogroups.com>

Date: Monday, November 9, 2009, 8:08 PM

Paying for in-home nurses

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler. blogspot. com

follow me on twitter @ http://twitter. com/markboatman

#6011

From: MJ Purk <TWEETYROLL88@...>
Date: Tue Nov 10, 2009 8:24 pm
Subject: mj to er

bshanson68

Offline

Off to ER to get evaluated...suddenly it is now an emergency to the docs since I pushed them for an answer. Off to Nationwide Childrens. Will have cell, so text us don't call.

#6010

From: Mark <irishsea9@...>
Date: Tue Nov 10, 2009 5:47 pm
Subject: Re: Paying for in-home nurses

irishsea9

Online Now

This is something I think a lot of us worry about. How will the Medicare cuts affect us.

Cheers,

Mark

--- On Mon, 11/9/09, Mark Boatman <nodakwheeler@...> wrote:

From: Mark Boatman <nodakwheeler@...>
Subject: [npventsupport] Paying for in-home nurses
To: "Vent Support Network" <npventsupport@yahoogroups.com>, "Duchenne MD" <Duchenne_MD_Support_Group@yahoogroups.com>
Date: Monday, November 9, 2009, 8:08 PM

Paying for in-home nurses

Mark J. Boatman
Student - University of Montana

blog @ nodakwheeler. blogspot. com
follow me on twitter @ http://twitter. com/markboatman

#6009

From: Mark <irishsea9@...>
Date: Tue Nov 10, 2009 5:44 pm
Subject: Re: Looking forward to Thanksgiving, blog posted

irishsea9

Online Now

Thanks Mark

--- On Mon, 11/9/09, Mark BoatTman <nodakwheeler@...> wrote:

From: Mark Boatman <nodakwheeler@...>
Subject: Re: [npventsupport] Looking forward to Thanksgiving, blog posted
To: npventsupport@yahoogroups.com
Date: Monday, November 9, 2009, 8:16 PM

Mark,

Great pictures! Glad your mountain lion encounter was uneventful. We have lots of them here in western Montana...Mark

Mark J. Boatman
Student - University of Montana

blog @ nodakwheeler. blogspot. com
follow me on twitter @ http://twitter. com/markboatman

From: Mark <irishsea9@yahoo. com>
To: Ventuser <npventsupport@ yahoogroups. com>
Sent: Thu, November 5, 2009 11:30:30 AM
Subject: [npventsupport] Looking forward to Thanksgiving, blog posted

I have to say that Thanksgiving is my favorite holiday. Most of my family (14 kids) come to
join in the feast. Because of my large family, we usually have around 25 plus for dinner.

I decided this year to write up a "give thanks to my family" letter. Will have one of my siblings read it at the dinner table. This year my siblings really pitched in and helped take care of me
whenever needed. Some flew in from southern California, and another flew in from Colorado.
I sure am blessed to have such a wonderful family. Mmmmm turkey and dressing.

I also just posted to my blog: http://irishsea- mark.blogspot. com/

Cheers,

Mark

#6008

From: Mark Boatman <nodakwheeler@...>
Date: Tue Nov 10, 2009 4:16 am
Subject: Re: Looking forward to Thanksgiving, blog posted

nodakwheeler

Online Now

Mark,

Great pictures! Glad your mountain lion encounter was uneventful. We have lots of them here in western Montana...Mark

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

From: Mark <irishsea9@...>
To: Ventuser <npventsupport@yahoogroups.com>
Sent: Thu, November 5, 2009 11:30:30 AM
Subject: [npventsupport] Looking forward to Thanksgiving, blog posted

I have to say that Thanksgiving is my favorite holiday. Most of my family (14 kids) come to
join in the feast. Because of my large family, we usually have around 25 plus for dinner.

I decided this year to write up a "give thanks to my family" letter. Will have one of my siblings read it at the dinner table. This year my siblings really pitched in and helped take care of me
whenever needed. Some flew in from southern California, and another flew in from Colorado.
I sure am blessed to have such a wonderful family. Mmmmm turkey and dressing.

I also just posted to my blog: http://irishsea- mark.blogspot. com/

Cheers,

Mark

#6007

From: Mark Boatman <nodakwheeler@...>
Date: Tue Nov 10, 2009 4:13 am
Subject: Mourners to keep Jesse's Journey alive

nodakwheeler

Online Now

Mourners to keep Jesse's Journey alive | London | News | London Free Press

Member Robert Feinstein sent me this article to pass on.

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

#6006

From: Mark Boatman <nodakwheeler@...>
Date: Tue Nov 10, 2009 4:08 am
Subject: Paying for in-home nurses

nodakwheeler

Online Now

Paying for in-home nurses

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

#6005

From: Mark Boatman <nodakwheeler@...>
Date: Tue Nov 10, 2009 1:33 am
Subject: Re: MJ Update for the H1N1, Puesdomonas, and a GI Virus

nodakwheeler

Online Now

MJ,

Keep hangin' in there! Your in my thoughts...Mark

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

From: MJ Purk <TWEETYROLL88@...>
To: smasupport@googlegroups.com; npventsupport@yahoogroups.com
Sent: Sat, November 7, 2009 6:49:21 PM
Subject: [npventsupport] MJ Update for the H1N1, Puesdomonas, and a GI Virus

Hi all,

Sorry for no update, but MJ has been sick since we got home. She did make it through the first week of classes, with lots of coughing going on, but survived.

On that first Wednesday, she had a dentist appointment that was saddening. After all the reflux she has been having, she now has 3 cavities that will be filled in January. They wanted to do surgery, but we all know how her body hates anesthesia. Thursday, we went to drop off a sputum sample at her GP docs office where MJ conveniently got her H1N1 shot. Unfortunately, she got a 2 for 1 special while getting her shot. MJ now has H1N1 virus. We were protected in the hospital from it despite it being right across and down the hall but come home and what does she get right away, yup, the flu. MJ was not tested but it is assumed that she has it based on symptoms. Monday night, MJ was started on Tamiflu and we began our time in lockdown. Tuesday afternoon comes around and more bad news…MJ’s sputum culture grew something…after 11 months of growing nothing, MJ now has pseudomonas auriginosa. This is a new infection for her, so she is back on antibiotics for 2 more weeks along with restarting Tobi nebs.

Five days later and MJ is still hanging in here. We think she might have a GI virus on top of everything else, otherwise the psudos and the h1n1 are affecting her differently, or it is just MJ being MJ…got to be different. Her digestion is having major issues this week. It seemed as if it was coming around but not anymore. Some days are better than others but nausea is the theme of the week. One major negative side effect of this past week is that MJ’s function in her right hand (how she drives her chair) is down. She has lost a lot of function and has trouble holding or gripping anything. We are keeping our thoughts up that this will return quickly once she feels better.

Do you need a Christmas present for someone special or the doctors or therapist in your life, help spread the word about SMA, by purchasing the 2010 SMA Calendar or associated merchandise. Who cannot resist looking at all these kids without a smile! Please visit: http://www.cafepres s.com/b4sma/ 1826918 to purchase your own calendar.

Love, Brenda & MJ

Quote of the week: I trust in God.There may be occasions in my life and in the lives of others when events make absolutely no sense to me. The loss of a job, an encounter with a serious illness, or some other aspect of my life may tempt me to cry out, "Why, God?" In every instance, God has already established a divine plan that will carry me through to the other side of any challenge I may experience. My mission is simply to seek out the good that lies at the heart of any adversity. God knows my right and perfect opportunity for employment, partnership, health and wholeness. My life is in the care of God, and I trust in divine order.

MJ Purk
SMA type I+, 21 years old
"You must not let your life run in the ordinary way; do something that nobody else has done, something that will dazzle the world. Show that God's creative principle works in you." ~ Paramahansa Yogananda

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and Personalized Merchandise!

www.our-sma- angels.com/ b4sma - B4SMA, My organization
www.our-sma- angels.com/ Margaret - My website
www.cafepress. com/b4sma - My Shop

#6004

From: Mark Boatman <nodakwheeler@...>
Date: Mon Nov 9, 2009 5:20 am
Subject: Re: New Blog Post 11-8

nodakwheeler

Online Now

Membership has its privileges :)

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

From: John Herrmann <johnrsf@...>
To: Ceci Alba <ceciandspike@...>; Phyllis Allison <phyl1225@...>; Lance Anderson <vergefringe@...>; Mario Bernheim <mb2457@...>; Wendy Beveridge <xpaludoshs@...>; Stacy Biener <stacyviva@...>; Bridget Brigitte <bridget@...>; Keith Bristow <bravo91b@...>; Rebecca Brown <cotoclan@...>; Sven Buncher <SVEN@...>; Jennifer Callahan <jennifercaseda@...>; Holly Carney <hollycarney5@...>; John Carney <saintsiii@...>; ulrike Chapo <ulrike@...>; Andrew E. Charman <acharman@...>; Bibbi Conner <bibbi2@...>; Rick Conner <info@...>; George Conner <temcon@...>; Mike Conner <ConnerMikes@...>; Jean Conner <jeancon@...>; Bibbi Conner <bibbi@...>; Glen Dodd <glendodd88@...>; Tricia Downey <downeysusa@...>; Scott Gordon <sgordon@...>; Bill Harding <cool1bill@...>; Ozzie Haydon <OHaydon@...>; Jeff Herrman <sirtshirt@...>; Greg Herrman <gherrman@...>; Bill Herrmann <vagabondbill@...>; Bill and Julie Herrmann <billandjules@...>; Jason Hinkle <jrhink@...>; Blaire Larson <blairelarson@...>; Michelle Macrovitch <michelle@...>; SYLVIA MARTIN <bowbells@...>; Marisol Martinez <marisolmartinez@...>; Donna Miano <donnamiano@...>; Bronwyn Miller <bronwyn12@...>; Rita & Lynne Montjoy <montjoy@...>; David Moss <david.moss1@...>; James Nicholas <janicholas@...>; Nick Nicholas <Nickpnicholas@...>; Penny Nicholas <delmarpenny@...>; Ernie Orcino <emorcino@...>; Marisa Passanisi <map820@...>; Peter Pingerelli <peter.pingerelli@...>; Vivian Radam <vradam@...>; Sylvia Reed <sxreed@...>; Gary Ross <glrossconst@...>; Toby Russell <toby@...>; Alexander Schaefer <alexhs@...>; Danielle Valenciano <dvalenciano@...>; Claire Varney <claireav@...>; Claire Varney <cvcv@...>; Alecia Wagner <bunchiz@...>; John Walk <ljbj_boof@...>; Alan Watson <awatson@...>; Earl Watson <earlito@...>; John Wilcox <johnwilcox1@...>; Peter Wilmans <pcwilmans@...>; Karen Wood <karen@...>; Karen Wood <holymolyrolypoly@...>; dmdpioneers@yahoogroups.com; NPVSN Ventilator Support Group <npventsupport@yahoogroups.com>; Ostomates_R_Us <Ostomates_R_Us@yahoogroups.com>; Independent Living <independentliving@yahoogroups.com>; DisabilityVoiceSpace@yahoogroups.com; Duchenne_MD_Support_Group@yahoogroups.com; Neckbreathers <NeckBreathers@yahoogroups.com>
Sent: Sun, November 8, 2009 7:44:38 PM
Subject: [npventsupport] New Blog Post 11-8

www.johnrsf. blogspot. com

There is no cure for birth and death save to enjoy the interval.
--George Santayana(1863- 1952)

My E-Mail: johnrsf@pacbell. net

My Blog: www.johnrsf. blogspot. com

Facebook: www.facebook. com/john. p.herrmann

Yahoo IM:johnrsf@pacbell. net

Follow me on Twitter. http://twitter. com/johnrsf

#6003

From: John Herrmann <johnrsf@...>
Date: Mon Nov 9, 2009 2:44 am
Subject: New Blog Post 11-8

johnrancho

Offline

www.johnrsf.blogspot.com

There is no cure for birth and death save to enjoy the interval.
--George Santayana(1863-1952)

My E-Mail: johnrsf@...

My Blog: www.johnrsf.blogspot.com

Facebook: www.facebook.com/john.p.herrmann

Yahoo IM:johnrsf@...

Follow me on Twitter. http://twitter.com/johnrsf

#6002

From: MJ Purk <TWEETYROLL88@...>
Date: Sun Nov 8, 2009 1:49 am
Subject: MJ Update for the H1N1, Puesdomonas, and a GI Virus

bshanson68

Offline

Hi all,

Sorry for no update, but MJ has been sick since we got home. She did make it through the first week of classes, with lots of coughing going on, but survived.

Love, Brenda & MJ

#6001

From: Mark <irishsea9@...>
Date: Thu Nov 5, 2009 6:30 pm
Subject: Looking forward to Thanksgiving, blog posted

irishsea9

Online Now

#6000

From: Mark Boatman <nodakwheeler@...>
Date: Tue Nov 3, 2009 7:04 pm
Subject: Rollx vas

nodakwheeler

Online Now

Has anyone gotten a van through Rollx. If so, what were your experiences? Good? Bad?

Thanks...Mark

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

#5999

From: "Michael Keen" <mkeen@...>
Date: Mon Nov 2, 2009 7:43 pm
Subject: Fw: Christian Institute on Disability Responds to New Health Care Bill (news release) ALR:00201188

mikebjamminw...

Offline

Michael Keen,
Spirit Roller Ministries-Director
Commissioned Minister
Joni and Friends Affiliate
www.spiritrollerministries.org
Phone:   804-477-1802
Cell:      540-448-3824
Fax:       540-932-8933

"I can do all things through Christ who strengthens me."Philippians 4:13

----- Original Message -----

From: Dan'l Markham

To: Jon Ebersole/US Field Services-Chicago ; Kara Ferris ; MinAc Bonnie Nakasuji ; MinAc Dan & Melynda Adragna ; MinAc Daniel J. Vance ; MinAc Dawn Traficanti ; MinAc Diane Prairie ; MinAc Dick and Judy Ford ; MinAc Don Bania ; MinAc Elisabeth Colcol ; MinAc Iris Smith ; MinAc Jane Wampach ; MinAc Janine Hults ; MinAc JoyPMall ; MinAc Judy Siegle ; MinAc Mark and Cheryl Haggard ; MinAc Mary Jane Ponten ; MinAc Rick Eastin ; MinAc Tait Berge ; MinAff Bondi Ministries ; MinAff Elder Source Stan Means ; MinAff Global Transformation - Diana ; MinAff Global Transformation - Terry ; dianagtn1@... ; MinAff Hurdling Handicaps ; MinAff Life Compass Kim Fletcher ; Minaff Life Without Limbs Nick ; Minaff MUPS Tim Swauger ; MinAff NATHHAN CHASK ; MinAff NATHHAN CHASK ; Minaff Need Project Bob West ; MinAff Rest Ministries Lisa Copen ; MinAff Standing With Hope ; MinAff Thru the Roof ; MinAff Voyages Unbound ; mkeen@...

Cc: Melany Ethridge ; Doug Mazza ; Billy Burnett ; Steve Bundy ; Kathy McReynolds ; Sharyn Brautigan-King ; jkingery@... ; jebersole@... ; John Wern ; Ken Chambers ; sbuxton@...

Sent: Monday, November 02, 2009 1:29 PM

Subject: FW: Christian Institute on Disability Responds to New Health Care Bill (news release) ALR:00201188

Dear Jon, Filed Office Leaders, Chapter Leaders, Associates and Affiliates,

I believe the press release form JAF�s Christian Institute on Disability (below and attached) is of critical importance to your communities and the people you serve.

God bless you as you work on the behalf of Christ in ministering to the most vulnerable.

Sincerely in Christ,

Dan'l

Rev. Dan'l C. Markham
Managing Director
Joni and Friends
Direct Line: 818-575-1736


	FOR INFORMATION CONTACT: Melany Ethridge 972.267.1111 melany@...	FOR IMMEDIATE RELEASE
	THE CHRISTIAN INSTITUTE ON DISABILITY RESPONDS TO NEW HOUSE HEALTH CARE BILL: Disability Advocates Question Who Will be the Gatekeeper
	AGOURA HILLS, Calif., Nov. 2, 2009 � House Democrats announced last week that the new health care bill does include a public option. The co-sponsors of this bill claim that it guarantees that up to 96 percent of Americans will have coverage. They also claim that the bill will make it easier for individuals to purchase insurance and it will prevent insurance companies from denying coverage to those with pre-existing conditions. However, if the government is going to play a larger role in health care delivery, who will be the gatekeeper? Will this larger governmental role lower costs and improve quality? �Those with disabilities, the chronically-ill, and the elderly are the very ones who need quality health care the most,� says Joni Eareckson Tada, the Founder and CEO of Joni and Friends (JAF) disability ministry. �And because that care can also be the most expensive, we are concerned that these most vulnerable will represent the ones whose lives are determined not worthy of the cost.� National health care reform continues to be one of the most important issues facing Americans, and the current initiative raises many questions about gate-keeping that concern JAF and its public policy initiative, the Christian Institute on Disability (CID). �We at the CID understand the desire to provide health care for every American,� CID Public Policy Director Dr. Kathy McReynolds said. �However, we are very concerned that health care reform could force insurance companies or the government to begin to discriminate against the most vulnerable because they may not meet certain outcomes required by evidence-based medicine. The gatekeeper should be the health care provider who has the best interest of the patient as a primary concern. This reflects the long tradition of Hippocratic medicine.� �JAF believes this scenario would clearly undermine the sanctity of life principle, which until modern times provided the foundation of Western medicine. The Western ethic was informed by an absolute respect for the sanctity of life and this principle has historically supported the ethics of medicine. The American public has yet to grasp the enormous consequences of a move away from this sanctity of life principle,� JAF President Doug Mazza said. Tada understands that those who care about these issues and who want to uphold a culture of life must engage in the marketplace of ideas. This led her to establish the CID, one of the newest initiatives of her worldwide disability ministry. A vital component of the Institute is its Public Policy Center, with a primary objective to address the most pressing issues in medicine today. Despite her paralysis, which has left her a quadriplegic in a wheelchair for more than 40 years, Joni Eareckson Tada works tirelessly every day to fulfill her vision to help society�s most vulnerable. Tada is passionately concerned about the many issues currently being debated in the medical arena, such as health care reform, reproductive technologies, and end of life care. Mazza explained that this is why the CID was established � to educate the church on these important ethical concerns in medicine. �The Public Policy Center is a vital resource to prepare Christians who will inevitably face these life and death questions,� he added. Long before they were considered �hot topics,� Tada and the staff at the CID anticipated the ethical issues surrounding embryonic stem cell research and the removal of nutrition and hydration. They believe that Terry Schiavo�s death on March 31, 2005, was a wake-up call to the Christian community that the lives of the most vulnerable are under threat. The CID continues to lead the charge by providing a biblical response to these issues that are now a part of the national conversation. Celebrating its 30th anniversary this year, Joni and Friends, through the International Disability Center, offers a wide array of life-affirming ministries to people with disabilities around the world, including international radio and television programs filled with inspirational stories. Wheels for the World sees thousands of individuals receive wheelchairs and the life-giving message of the Gospel. Every year families affected by disability learn that they are not alone when they attend Family Retreats across the U.S. and now around the world.
	� 30 � NOTE TO EDITORS: For more information about the Joni and Friends Christian Institute on Disability or to arrange an interview with or Joni Eareckson Tada or CID representatives, please contact Melany Ethridge of A. Larry Ross Communications at 972.267.1111 or melany@.... more information is available in our online newsroom: www.JoniAndFriendsNews.com
	�2009, a larry ross communications all rights reserved

1 of 1 File(s)

CID release_v3.doc

#5998

From: Mark Boatman <nodakwheeler@...>
Date: Mon Nov 2, 2009 1:52 am
Subject: June Middleton, in iron lung for 60 years, dies

nodakwheeler

Online Now

June Middleton, in iron lung for 60 years, dies | The Australian

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

#5997

From: Mark <irishsea9@...>
Date: Wed Oct 28, 2009 11:51 pm
Subject: Re: finally a new blog post

irishsea9

Online Now

Thanks for the update Michael and good luck next month with the operation. Will say a prayer for you.

Peace - Mark

--- On Wed, 10/28/09, Michael Keen <mkeen@...> wrote:

From: Michael Keen <mkeen@...>
Subject: [npventsupport] finally a new blog post
To: toman2be@..., "Ronnie Martin" <RMartin@...>, "Richard Peters" <petersr@...>, npventsupport@yahoogroups.com, "Rebecca Wolf" <rebecca.wolf@...>, "Quigley, Mary K." <kquigley@...>, "niki shumate" <lyricalraven@...>, MD-List@yahoogroups.com, "Mary Ellen VanBelkum" <mevanbelkum@...>, "MARTHA SAPLAK" <topsmama1@...>, lbauguss@..., "Kim Byrd" <k_byrd@...>, "Karla Richardson Melton" <themeltons@...>, "Kathy Roberson" <kcr116@...>, "Jerry Borton - Greater Philly" <jlborton@...>, "Jay Moody" <jmoody@...>, "Ivy Kennedy" <ivykennedy@...>, "Gapko, Andrea M." <GAPKOAM@...>, "Donna Watson" <bellakaliska@...>, "Donna Kester" <dkester@...>, dmdpioneers@yahoogroups.com, Diane.Gilbert@..., "Cassie Ewald" <cewald@...>, "Beverly Robinson" <beverly.robinson@...>, "Bower, Paige {PBG}" <paige.bower@...>, "Becky S." <oubecky@...>, "Andrew VanBelkum" <InHisHands@...>, "Alan Alfano" <apa6r@...>
Date: Wednesday, October 28, 2009, 12:55 PM

http://spritroller. blogspot. com/2009/ 10/doggy- drama.html

Michael Keen,
Spirit Roller Ministries-Director
Commissioned Minister
Joni and Friends Affiliate
www.spiritrollermin istries.org
Phone:   804-477-1802
Cell:      540-448-3824
Fax:       540-932-8933

"I can do all things through Christ who strengthens me."Philippians 4:13

#5996

From: "Michael Keen" <mkeen@...>
Date: Wed Oct 28, 2009 7:55 pm
Subject: finally a new blog post

mikebjamminw...

Offline

http://spritroller.blogspot.com/2009/10/doggy-drama.html

Michael Keen,
Spirit Roller Ministries-Director
Commissioned Minister
Joni and Friends Affiliate
www.spiritrollerministries.org
Phone:   804-477-1802
Cell:      540-448-3824
Fax:       540-932-8933

"I can do all things through Christ who strengthens me."Philippians 4:13

#5995

From: Mark <irishsea9@...>
Date: Wed Oct 28, 2009 7:41 pm
Subject: Re: SCOTT SANDS ALIVE - Incredible Surprise

irishsea9

Online Now

That is so cool Scott!

--- On Tue, 10/27/09, Scott F. Sands <scott@...> wrote:

From: Scott F. Sands <scott@...>
Subject: [npventsupport] SCOTT SANDS ALIVE - Incredible Surprise
To: "Will Strobbe" <strobbe@...>, "Al Stotz" <alstotz@...>, "Steve Tamm" <stevetamm@...>, "Lisa Dennis" <lisad2@...>, "Melissa Veigle" <missythenurse@...>, "Matt Sale" <mjs_sale@...>, "Becky Tatum" <tandbtatum@...>, "Tracy Carrasco" <tcarrasco@...>, "Susan Walkley" <sawalkley@...>, "Ashley Musoff" <gigglegirl12387@...>, "Mia Bagby" <mmbagby@...>, "Phil Gehr" <thirdgehr1967@...>, "Jana Waring" <waringis@...>, "Dawn Caulkey" <dawncatherine@...>, "Rose Marie Strobbe" <vent-line@...>, "Lorenzo Bono" <lbono@...>, "Becky Steubing" <oubecky@...>, "Dana Toler" <danatoler@...>, "Natios Ignadiou" <natx76@...>, "Gary Stepp" <garystepp@...>, "Jimmy Valdes" <JValdes@...>, "Chris Webb" <chriswebb2007@...>, "Desiree Vigo" <DesRobledo@...>, "NP Vent Support" <npventsupport@yahoogroups.com>, "Andrew VanBelkum" <InHisHands@...>, "Noelle Srour" <atbcm317@...>, "Christine Wade" <christinekwade@...>, "Michael Winkhart" <michael.winkhart@...>, "Manny Martinez" <mmartin@...>, "Terry Weber" <tmweber@...>
Date: Tuesday, October 27, 2009, 8:33 PM

http://www.scottsan dsalive.com

#5994

From: "Scott F. Sands" <scott@...>
Date: Wed Oct 28, 2009 3:33 am
Subject: SCOTT SANDS ALIVE - Incredible Surprise

sfsands66

Offline

http://www.scottsandsalive.com

#5993

From: MJ Purk <TWEETYROLL88@...>
Date: Mon Oct 26, 2009 10:56 pm
Subject: MJ update: Home at last, home at last but sick again

bshanson68

Offline

Home at last, home at last but sick again

Hi everyone:

Sorry for the lack of updates but this hospital stay has really worn me out. I am nowhere near where I was before and have lost way too much strength and energy.

To recap this long arduous process I will start from the beginning. In late July, I started having increased secretions and low grade fevers. Sputum cultures throughout the summer showed very few yeast cells but nothing was done until September until moderate levels grew. A sputum sample was done here in Dayton that showed gram negative bacteria but the test was never completed so no one knew what it was. Multiple rounds of antibiotics were given to try to figure out what I was fighting but as soon as one antibiotic was done, the same thing reappeared. My digestion often slowed way down so more meds were added. My body was getting tired, and after class on September 18^th, I came home to have to deal with 2 collapsed lungs in the lower lobes. Brenda and I fought to get them back open over the weekend, but all I wanted to do was sleep so we recognized that I needed more help. Seeing that I needed to be hospitalized in a different hospital was very frightening. I had started seeing doctors at Nationwide Children’s in Columbus, we made the trip there for a quick 3 to 5 day stay for a short course of antibiotics.

Upon admission, my sputum samples never grew anything despite the color, had two different urinary tract infections, had a swallow study, EEG, CT Scan, X-rays, MRI, dislocated hip, 2 seizures, and saw many different departments (pulmonary, GI, Rehab, Ortho, Neurology, and ENT). Breathing wise, my lung issues seemed to disappear upon using the hospital vent as opposed to my home vent. I have the LTV 950 and the hospital has the LTV 1200: the only main difference is a PEEP valve (which allows some air to stay in your lungs upon exhaling to prevent lung collapse). The 950 is a dial that you turn and set but is not always accurate whereas the 1200 is done internally in the vent itself. Insurance approved the new vent upon discharge.

So, fast forward 32 days and I am home. Got discharged Thursday, October 22^nd and headed home to my dark quiet room to rest up. Every night since getting home, I desat into the 70’s (only desatted maybe 5 times in the hospital) and started coughing back up yellow and green crap. Running a fever and higher heart rates are still around too. My new vent will not be delivered until next week, so am hoping I will survive this week. I just want to sleep all day and night. My hip pain is tolerable at times and unbearable at others. If I stay down in bed, I do fine, but being up in my chair often causes sharp pains in my hip and leg and numbness in my foot. Tomorrow I start back to class. I missed 5 weeks of class out of 10 weeks. In case you are wondering, I am not dropping out this semester. I am not a quitter and failure is not in my vocabulary. With some assistance, I will be getting incompletes in my three main classes and will work on the catch-up work over my 6 week holiday/quarter break. My graduation has been pushed back until August because I do not want to do my internship this winter and put myself at risk for another hospitalization.

Yesterday, I did go to the annual OKI FSMA Halloween Party. I needed to get out to help improve my mental health. It felt so good to be out and to be with friends. Of course, I feel horrible today but no worse than the previous days home. The theme of my costume was “GONE BATTY” and the meaning can be figured out from my previous month. Am I sad or disappointed that I went: HECK NO! I needed a day to feel better and to cheer me up and it helped. Pictures will be coming soon.

So that is all for now. I will try to update more frequently, but trying to catch up after 5 weeks away, will cause me to stress out some but I will succeed! On another note, need a Christmas present for someone special or the doctors or therapist in your life, help spread the word about SMA, by purchasing the 2010 SMA Calendar or associated merchandise. Who cannot resist looking at all these kids without a smile! Please visit: http://www.cafepress.com/b4sma/1826918 to purchase your own calendar.

Love and hugs:

Quote of the week: This goes out to all my friends and family who supported me during the hospital stay, for those that fed and “Pepsied” Brenda, who sent cards and emails, and to the entire staff at Nationwide Children’s Hospital: Gratitude:I am grateful for the people and experiences in my life. When I consider the many people who have helped me in my life, I am deeply grateful. Family, friends, teachers and colleagues--each have taught me something about life and myself. I consider the profound blessing of these people and the difference they have made for me. I open my heart to a simple prayer of gratitude by speaking their names or visualizing their faces. I bless each one. Next I turn to look at the events of my life and bless each situation for the lessons learned and the wisdom gained. I am grateful for love given and received and for the rich experiences of this life's journey. "I thank my God every time I remember you, constantly praying with joy in every one of my prayers for all of you."--Philippians 1:3-4

#5992

From: Mark Boatman <nodakwheeler@...>
Date: Sat Oct 24, 2009 6:14 am
Subject: Re: New Blog Post

nodakwheeler

Online Now

www.johnrsf. blogspot. com

Wow! Looks fantastic John...Mark

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

From: John Herrmann <johnrsf@...>
To: Ceci Alba <ceciandspike@...>; Phyllis Allison <phyl1225@...>; Lance Anderson <vergefringe@...>; Mario Bernheim <mb2457@...>; Stacy Biener <stacyviva@...>; Bridget Brigitte <bridget@...>; Keith Bristow <bravo91b@...>; Rebecca Brown <cotoclan@...>; Sven Buncher <SVEN@...>; Jennifer Callahan <jennifercaseda@...>; Holly Carney <hollycarney5@...>; John Carney <saintsiii@...>; ulrike Chapo <ulrike@...>; Andrew E. Charman <acharman@...>; Bibbi Conner <bibbi2@...>; Rick Conner <info@...>; George Conner <temcon@...>; Mike Conner <ConnerMikes@...>; Jean Conner <jeancon@...>; Bibbi Conner <bibbi@...>; Glen Dodd <glendodd88@...>; Tricia Downey <downeysusa@...>; Scott Gordon <sgordon@...>; Bill Harding <cool1bill@...>; Ozzie Haydon <OHaydon@...>; Jeff Herrman <sirtshirt@...>; Greg Herrman <gherrman@...>; Bill Herrmann <vagabondbill@...>; Bill and Julie Herrmann <billandjules@...>; Jason Hinkle <jrhink@...>; Blaire Larson <blairelarson@...>; Michelle Macrovitch <michelle@...>; SYLVIA MARTIN <bowbells@...>; Marisol Martinez <marisolmartinez@...>; Donna Miano <donnamiano@...>; Bronwyn Miller <bronwyn12@...>; Rita & Lynne Montjoy <montjoy@...>; David Moss <david.moss1@...>; James Nicholas <janicholas@...>; Nick Nicholas <Nickpnicholas@...>; Penny Nicholas <delmarpenny@...>; Ernie Orcino <emorcino@...>; Marisa Passanisi <map820@...>; Peter Pingerelli <peter.pingerelli@...>; Sylvia Reed <sxreed@...>; Gary Ross <glrossconst@...>; Toby Russell <toby@...>; Alexander Schaefer <alexhs@...>; Danielle Valenciano <dvalenciano@...>; Claire Varney <claireav@...>; Claire Varney <cvcv@...>; Alecia Wagner <bunchiz@...>; John Walk <ljbj_boof@...>; Alan Watson <awatson@...>; Earl Watson <earlito@...>; John Wilcox <johnwilcox1@...>; Peter Wilmans <pcwilmans@...>; Karen Wood <karen@...>; Karen Wood <holymolyrolypoly@...>; dmdpioneers@yahoogroups.com; NPVSN Ventilator Support Group <npventsupport@yahoogroups.com>; Ostomates_R_Us <Ostomates_R_Us@yahoogroups.com>; Independent Living <independentliving@yahoogroups.com>; DisabilityVoiceSpace@yahoogroups.com; Duchenne_MD_Support_Group@yahoogroups.com; Neckbreathers <NeckBreathers@yahoogroups.com>
Sent: Thu, October 22, 2009 8:07:29 PM
Subject: [npventsupport] New Blog Post

There is no cure for birth and death save to enjoy the interval.
--George Santayana(1863- 1952)

My E-Mail: johnrsf@pacbell. net

My Blog: www.johnrsf. blogspot. com

Facebook: www.facebook. com/john. p.herrmann

Yahoo IM:johnrsf@pacbell. net

Follow me on Twitter. http://twitter. com/johnrsf

Reply | Forward | Messages in this Topic (80)

#5991

From: Mark Boatman <nodakwheeler@...>
Date: Sat Oct 24, 2009 5:59 am
Subject: Re: SCOTT SANDS ALIVE - Gimp Fraud

nodakwheeler

Online Now

http://www.scottsandsalive.com/

Too bad stupid people like that can't be locked up for a few months. They could really have time to think over their abuse of the system.

Mark

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

From: Scott F. Sands <scott@...>
To: Will Strobbe <strobbe@...>; Al Stotz <alstotz@...>; Steve Tamm <stevetamm@...>; Melissa Veigle <missythenurse@...>; Lisa Dennis <lisad2@...>; Matt Sale <mjs_sale@...>; Tracy Carrasco <tcarrasco@...>; Becky Tatum <tandbtatum@...>; Susan Walkley <sawalkley@...>; Ashley Musoff <gigglegirl12387@...>; Mia Bagby <mmbagby@...>; Jana Waring <waringis@...>; Phil Gehr <thirdgehr1967@...>; Lorenzo Bono <lbono@...>; Rose Marie Strobbe <vent-line@...>; Becky Steubing <oubecky@...>; Dana Toler <danatoler@...>; Natios Ignadiou <natx76@...>; Dawn Caulkey <dawncatherine@...>; Gary Stepp <garystepp@...>; Chris Webb <chriswebb2007@...>; Jimmy Valdes <JValdes@...>; Desiree Vigo <DesRobledo@...>; NP Vent Support <npventsupport@yahoogroups.com>; Andrew VanBelkum <InHisHands@...>; Noelle Srour <atbcm317@...>; Christine Wade <christinekwade@...>; Michael Winkhart <michael.winkhart@...>; Terry Weber <tmweber@...>; Manny Martinez <mmartin@...>
Sent: Thu, October 22, 2009 2:59:12 PM
Subject: [npventsupport] SCOTT SANDS ALIVE - Gimp Fraud

#5990

From: Mark Boatman <nodakwheeler@...>
Date: Sat Oct 24, 2009 4:32 am
Subject: Pearl Family Fights Back After Guardian Cancels Line of Coverage for Ian Pearl

nodakwheeler

Online Now

Pearl Family Fights Back After Guardian Cancels Line of Coverage for Ian Pearl | Reuters

Absolutely sickening...Mark

Mark J. Boatman

Student - University of Montana

blog @ nodakwheeler.blogspot.com
follow me on twitter @ http://twitter.com/markboatman

#5989

From: Mark <irishsea9@...>
Date: Fri Oct 23, 2009 5:10 pm
Subject: Re: SCOTT SANDS ALIVE - Gimp Fraud

irishsea9

Online Now

Really bugs me when I see this also Scott.

--- On Thu, 10/22/09, Scott F. Sands <scott@...> wrote:

From: Scott F. Sands <scott@...>
Subject: [npventsupport] SCOTT SANDS ALIVE - Gimp Fraud
To: "Will Strobbe" <strobbe@...>, "Al Stotz" <alstotz@...>, "Steve Tamm" <stevetamm@...>, "Melissa Veigle" <missythenurse@...>, "Lisa Dennis" <lisad2@...>, "Matt Sale" <mjs_sale@...>, "Tracy Carrasco" <tcarrasco@...>, "Becky Tatum" <tandbtatum@...>, "Susan Walkley" <sawalkley@...>, "Ashley Musoff" <gigglegirl12387@...>, "Mia Bagby" <mmbagby@...>, "Jana Waring" <waringis@...>, "Phil Gehr" <thirdgehr1967@...>, "Lorenzo Bono" <lbono@...>, "Rose Marie Strobbe" <vent-line@...>, "Becky Steubing" <oubecky@...>, "Dana Toler" <danatoler@...>, "Natios Ignadiou" <natx76@...>, "Dawn Caulkey" <dawncatherine@...>, "Gary Stepp" <garystepp@...>, "Chris Webb" <chriswebb2007@...>, "Jimmy Valdes" <JValdes@...>, "Desiree Vigo" <DesRobledo@...>, "NP Vent Support" <npventsupport@yahoogroups.com>, "Andrew VanBelkum" <InHisHands@...>, "Noelle Srour" <atbcm317@...>, "Christine Wade" <christinekwade@...>, "Michael Winkhart" <michael.winkhart@...>, "Terry Weber" <tmweber@...>, "Manny Martinez" <mmartin@...>
Date: Thursday, October 22, 2009, 1:59 PM

http://www.scottsan dsalive.com

#5988

From: John Herrmann <johnrsf@...>
Date: Fri Oct 23, 2009 2:07 am
Subject: New Blog Post

johnrancho

Offline

www.johnrsf.blogspot.com

There is no cure for birth and death save to enjoy the interval.
--George Santayana(1863-1952)

My E-Mail: johnrsf@...

My Blog: www.johnrsf.blogspot.com

Facebook: www.facebook.com/john.p.herrmann

Yahoo IM:johnrsf@...

Follow me on Twitter. http://twitter.com/johnrsf

Reply | Forward | Messages in this Topic (80)

#5987

From: Scott F. Sands <scott@...>
Date: Thu Oct 22, 2009 8:59 pm
Subject: SCOTT SANDS ALIVE - Gimp Fraud

sfsands66

Offline

http://www.scottsandsalive.com