Ventilator-Assisted Living©

Spring 2005, Vol. 19, No. 1

(continued)

Life as a Teenager ... with a Ventilator

Margaret Jo (MJ) Purk, Rye Brook, New York

People call me Margaret or Marg, MJ, Margaret Jo or even Miss Maggie. Now 17, I was born January 8, 1988, with spinal muscular atrophy (SMA) type I. The most severe type of SMA, it weakens all muscles, including those for breathing, eating, sitting unassisted and limits most of my functional movement.

John R. Bach, MD, started me with a bilevel when I was 8 years old, and I now rely on the LTV® 950 (Pulmonetic Systems, Inc.) to support my weak breathing muscles. I use a mouthpiece during the day and the Mirage® Vista™ (ResMed Corp.) at night. I also use the CoughAssist™ (J.H. Emerson Co.) on a daily basis to help clear the secretions from my lungs. Then there are four nebulizer treatments daily along with The Vest® (Advanced Respiratory), which help to keep my lungs functioning “normally.”

A great team of physicians (Drs. Bach, Wendy Proskin, Josh Needleman and Colin Bethel) has helped me through several crises. Fortunately, they all follow Dr. Bach’s protocol for noninvasive ventilation management.

Using a wheelchair and a ventilator does not mean I am unlike other teenagers. I enjoy reading and writing emails, watching television, playing computer games, making websites (I currently have six websites of my own), reading e-books, talking with friends on the phone or instant messaging, and making blankets for my organization, B4SMA, Blankets for SMA. I send a blanket to children newly diagnosed with SMA. B4SMA is almost a year old, and I have sent approximately 60 blankets.

I also spend a great deal of time writing. I wrote an article for Mary Beth’s Beanie World for Kids, March 1999 issue. I used to write a bi-monthly column for the WOW (Winners on Wheels) connection newsletter, and I was recently published in Angel Times, a quarterly newsletter for families of people with SMA. My first children’s book was published last year; I am writing my second.

As a high school junior, my courses include physics, pre-calculus, American history and government, English, and I just completed a semester studying forensic science. I like most of my teachers, even though I was only in their classrooms nine days before becoming a home-schooled student.

My immune system isn’t strong, and it seemed that every time I went out in the winter, I instantly caught a “bug.” To help prevent numerous pneumonias, I stay home. Now my teachers just send home the work they provide in school, and I complete it as I can.

In August 2006, I plan to attend an out-of-state college and to major in computer sciences. My caregiver, Brenda, who has been with me for several years, is going to college with me.

I don’t talk with many of my peers from school. High school has changed a lot of the people I used to consider friends. It is also difficult to connect with them because I don’t attend school on a regular basis. I have met many great people through the Internet; some have become friends who will last a lifetime.

As I told a friend the other day, “My life is good. I am happy, though rarely healthy, and get to go just about any place I want to. I can’t walk, I can’t ride a bike, and I’ll probably never be president. But with wonderful friends, supportive family, and God and my angels watching over me, I can do anything I set my mind to do.”


The Development of RespiteMatch.com

David Jayne, Rex, Georgia (www.RespiteMatch.com)

It was a beautiful spring afternoon seventeen years ago when I was seated on an examination table and the neurologist began to speak. “You have amyotrophic lateral sclerosis, ALS. You might have heard it referred to as Lou Gehrig’s disease.” Without raising my head I asked, “How long?” Void of hesitation, his reply rang in my head, “Three to five years.” That marked the beginning of a journey of many changes and challenges.

As I declined into paralysis my dependence on others increased. I have hired many caregivers in my nearly two decades of disability, some fantastic, some horrible. Unfortunately, the horrible caregivers seem to leave the lasting impressions, but when your total existence depends on others and you are in need of a caregiver, the memory becomes short.

During the ‘90s, I became totally paralyzed, needed to use a ventilator fulltime, and lost the ability to eat and speak. Living on a fixed income with increasing personal care needs made it more and more difficult to afford qualified caregivers. According to the government, I am wealthy and do not qualify for additional financial assistance, so all of my caregiver expense is out of pocket. I struggle to make ends meet, a catch-22 all too familiar to many Americans with a disability.

In my efforts to hire and afford caregivers capable of my care requirements, I have used every medium imaginable to locate qualified candidates: classified newspaper ads, personal referrals, nanny services, agencies, mailbox fliers, articles, church bulletins, word of mouth, etc. Some methods have been more successful than others, but all have several drawbacks. The most common problem is the lack of information that can be easily accessed.

My caregiver of four years was leaving my employ early in 2004 to marry. I began looking for a replacement several months prior to her departure. I decided to use the Internet thinking it might be an excellent resource to find home health professionals.

To my disappointment, all I discovered on the Internet were a few classified-style ads scattered here and there on various sites. These postings were still lacking the detailed information needed to save time and make informed decisions to hire the appropriate candidate.

I have been an entrepreneur since childhood, and my wheels began turning. I thought if I, as an individual with a disability, experienced these frustrations, caregivers must wrestle with the same problems. The idea came to me of creating a platform much like a singles’ website, but instead for home health professionals and “patients” in the home setting.

The plans for RespiteMatch.com began taking shape. I developed profiles that have the capability to be extremely detailed, containing many variables important to the patient/caregiver relationship. It is my desire to create one-stop shopping that will meet all home health needs and that will avoid the common home health pitfalls both patients and caregivers have endured.

Currently on www.RespiteMatch.com, patients and caregivers can create detailed profiles with or without photo-graphs (if provided) as members at no charge. They can add to their Favorites List, receive email notification when their profile has been added to another’s Favorites List, and also view their personal MatchList generated by their requirements.

Subscribers to the RespiteMatch service ($39 for 30 days; $89 for 90 days; some additional fees for searches and surety bonds) receive all of the member benefits but have access to all of the contact information contained in the profiles, including the use of RespiteMatch’s private email and email notification.

Subscribers can search by many criteria in addition to specific health skills that are required or possessed. Members can also search by location with GPS-powered zipcode searches.

Future services planned for subscribers include background checks, DMV checks, credit checks, employment verification, professional license verification, education verification, criminal and civil records checks, sex offender checks, reference verification, etc. Soon domestic workers’ surety bonds will be available as well as home health products.

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