SHE KEEPS WORKING, LIKES QUEST

I have read Quest magazine for many years and found the articles very helpful. I am a 50-year-old woman with facioscapulohumeral muscular dystrophy. I am losing my ability to walk and am at the stage where I fall all the time.

In each issue, space allowing, Quest will run letters sent to MDA, National Chairman Jerry Lewis or to the magazine.

Write to: MDA Mailbag, Quest, MDA, 3300 E. Sunrise Drive, Tucson, AZ 85718-3299. Or e-mail publications@mda.org.

Letters must be signed and contain a daytime phone number, city and state, and be no more than 250 words. Letters may be edited for space.

If you have questions about your Quest subscription, contact your local MDA office.

I have been a pediatric nurse for almost 30 years. As the years passed I moved around to continue my work as a nurse in spite of my health.

loves me. In spite of everything, Life is Good!

Jan Manconi

Silver Springs, Nev.

I have been working at a school for children with multiple disabilities for 13 years. I do my work from a power wheelchair, and never in my wildest dreams thought I would continue to work as a nurse 20 years after my diagnosis.

As my disease progresses I hold on to my job more than ever and don’t think about how much longer I have. I also spend my time continuing my efforts to garden and grow flowers. This is a great challenge but so worthwhile. I have started encouraging my students and staff to participate in gardening and horticultural therapy.

Thank you for a top-notch magazine. I need it.

Robin Cachero

Independence, Mo.

PM CHALLENGES

I read the letter from Carol Yannone on her OPMD (“Mailbag: Life Is Good,”

July-August). As I approached 50, I showed signs of difficulty walking, climbing stairs, extreme fatigue when exercising.

I was diagnosed with polymyositis about 1995. I was relieved to find what I had, but sad to learn there was no cure, only remission.

Now, my eyelids are drooping, I have trouble breathing at night and walking is becoming more difficult. I spend most of my days lying on the sofa and can no longer do ordinary chores like mopping or bending over (because of scoliosis).

When I fall on the floor and can’t get up, I crawl over to any device and pull myself up that way. I manually lift my legs to get out of and into the car.

I am tripping more and more and am frightened now of walking anywhere without someone near to assist. I use canes and a walker with a basket. Those wonderful luxurious baths are but a memory because getting in or out of the tub is too great an effort and strain. I no longer set and comb my hair like I used to.

I am now 62 years old and feel fortunate that my disease is very slow to progress. I am grateful for the few wonderful things in life I have and can do:

I have a cushioned swing in our garden surrounded by tall trees in the middle of the desert that is like heaven. And my husband of 32 years who really, really

LOOKING AHEAD IN QUEST . . .

Watch upcoming issues for articles on volunteers with disabilities and volunteering with the military, along with our annual holiday gift roundup. You’ll also see articles about stem cells and cord blood banking, recycling assistive technology and products to make bathing easier.

Find out what else Quest is working on at “You Could Be in Quest,” www.mda.org/ publications/Quest/ q-helpquest.html, and please share your story if it relates to one of the topics listed there.

And of course, don’t forget to check out Quest Extra ( www.mda.org/publications/ Quest/Extra) for more great stories that won’t fit into these pages!

LONG-TERM NIV WORKS FOR MANY, WITH RIGHT VENTILATOR

Diane Huberty wrote an accurate article (“Truth, Lies and Tracheostomies,” July-August) but there were certain considerations that were lacking.

Ms. Huberty has bulbar amyotrophic lateral sclerosis (ALS), but her article was generalized to other conditions. For many reasons, I don’t agree with this generalization.

Most of our patients with ALS, like Ms. Huberty, eventually require tracheostomy tubes because of bulbar (throat) muscle dysfunction and inability to sufficiently protect the airways from too much saliva falling in.

However, this is almost never the case for patients with Duchenne muscular dystrophy (DMD) or most any other myopathy, muscular dystrophy, or even spinal muscular atrophy (although there are some exceptions with type 1 SMA).

Ms. Huberty noted that when she got pneumonia, the trach tube was needed, but she never mentioned having used a CoughAssist, which could have prevented the pneumonia in the first place.

It’s stated that volume ventilator use for noninvasive ventilation (NIV) [Ed: through a mask, nosepiece or mouth-piece] is rare. This is true in the United States but not everywhere.

When one is using a volume ventilator instead of a pressure ventilator like BiPAP, then one can “air stack” to the