Stanford Convalescent Home

In the last post I described the asthma I had as a child. When I was eleven years old I was sent to live at the Stanford Convalescent Home because of it.

Recently I did some internet research and learned the full title of the place was The Stanford Convalescent Home for Impoverished Children. I never thought of our family as impoverished, but we had very little money because my widowed mother couldn't earn nearly as much as men could in those days.

The first week they were in the facility all children, including me, stayed in the Babcock Unit. There were two large rooms full of beds. In one the children who were bedridden stayed. Many of them were not expected to survive.

I helped the teacher there by tutoring one little girl in reading. She was terminally ill and I was horrified at the idea that anyone might die before learning how to read. Perhaps working with her was one factor that later motivated me to become a teacher myself.

I slept in the other room with the infants, preschoolers, and other newly-admitted kids who, like me, were kept there for observation.

I'll share more about that facility in later posts.

Childhood Asthma

I've mentioned before that I had severe asthma when I was a child, but never described what that was like.

I never coughed and was surprised to learn that was considered an asthma symptom in other people. Instead I always wheezed. Sometimes the wheezing was so quiet that it could only be heard with a stethoscope, although I could feel the gentle grating sensation in my lungs. Often the wheezing was so loud that it could be heard from the other side of the classroom. My wheezing made other kids uncomfortable and was probably one reason why I was often teased, although the mean kids never mentioned it.

But when I was having a severe asthma attack I'd not only wheeze loudly, but have to strain with all my strength to force air in and out of my lungs. Imagine what it must be like to use any muscle with all your strength for hours at a time and never take a break. Sometimes I'd even get painful cramps in my diaphragm, but I'd have to continue straining that muscle as hard as I could with every breath. Of course I'd get exhausted, but sleep was impossible.

Sometimes my meds would help reduce the severity of the asthma attack, but at other times my grandfather or mother would call the doctor. He'd drive to our home, which was a little cabin up a steep path from the road, and give me a "shot of adrenaline." Usually that worked and the relief of being able to take a clear breath was the best feeling I ever experienced.

But sometimes there would be no improvement for fifteen minutes. In that case the doctor would have to give me a second shot. And if that one didn't help, he would pick me up in his arms, carry me down the hill to his car, and drive me to the hospital where I'd be put on oxygen.

Now there are much more effective asthma medicines available and people can have EpiPens at home to use in case of serious allergic reactions. Since doctors no longer make house calls, that's important. But more people have asthma than in the past. I hope there aren't many who have asthma attacks as serious as mine used to be.

Asthma Poem

As a child I had severe, chronic asthma and was sometimes hospitalized and put on oxygen. Yesterday I found a poem I wrote for my doctor when I was twelve years old and will share it here:

Twenty thousand kinds of pills

Twenty times a day,

And they shoot me all the time to

Make the asthma stay away.

But my sheet is very wrinkled

And the pillow hurts my head

And my feet are getting tangled

At the bottom of the bed.

I listen and I listen

For her footsteps on the floor,

And I'm happy when I see that

Doctor Bennett's at the door,

For I know she'll fix the bed

so it doesn't hurt my head

And make my life worth living,

Now, once more.

She has a very pleasing personality, you know,

And she makes me well

When I am sick

And helps me grow and grow.

I'm always glad to see her

Even when I get a shot.

Most people make them hurt but

When she gives them, they do not.

Lots of doctors try to bribe you

With balloons and lollypops,

But I'm glad my doctor doesn't

Because I think she's tops.

Asthma and Tourette Syndrome

Dianne Danzig, is a nurse and the author of books for children. She was kind enough to send this information for me to share here:

Regarding asthma - both of my sons have asthma and allergies and were diagnosed as toddlers. I'm also certified as an asthma educator and taught asthma ed to families for years, so asthma is important to me. Some good websites are below. One of my sons also has Tourette Syndrome, so I included a website for that as well.

1) http://www.aanma.org - Allergy and Asthma Network/Mothers of Asthmatics ("An-Mah")

- I used to volunteer for this organization. Offers practical information for families with children with asthma - with school, camp, sports, understanding meds, latest medical treatments/meds/products, questions for MDs. AANMA also is involved in Wash DC to educate legislators on the challenges of living with asthma.

2) www.aafa.org - Asthma and Allergy Foundation of America ("A-Fah", the first "a" is like the a in "mat")

- Also has excellent asthma education, info about consumer products like vacuums/washing machines/etc, referrals to support groups/allergists, info for health professionals, research, etc.

3) http://www.nationaljewish.org - National Jewish Health

- National Jewish is in Denver. Great place for diagnosis/treatment/helping patients learn about managing asthma. I especially appreciate its Lung Line - Ask an Expert service. For no charge, you can e-mail or call Lung Line and get info, even if you or your family is not being treated there. I called them a few times when the boys were younger and the nurses were really helpful.

Lung line --- http://www.nationaljewish.org/about/contact/lung-line.aspx

4) http://www.tsa-usa.org/ - Tourette Syndrome Association. Everything about Tourette - what it is, treatments, education, advocacy, public policy fundraising, support/referral, more.

Hope this is useful.

I'm sure it will be. Thank you, Dianne.

Asthma

As a child I had severe chronic asthma, often getting "shots of adrenaline" and sometimes being hospitalized and put on oxygen. I only knew two other kids who had asthma.

Now there are many medications and treatments that didn't exist back then, but there are many more children who have asthma. As a teacher I usually had at least one asthmatic kid in every class and I now know dozens of many adults who have it, too..

I've only known one person who died of asthma, but even for those with mild symptoms, asthma puts limits on their activities.

Why is it so prevalent?

Air quality is certainly a factor. The prevalence of fragrances in laundry detergents, cleaning products, etc., etc. makes those triggers of asthma attacks hard to avoid. Odor "eliminators," which fool the sense of smell and consist of chemicals themselves, are even more difficult to avoid since people don't know they are inhaling them.

I wish all people would be considerate of others who have that serious health condition and switch to unscented products.

Asthma

When I was a kid and had severe chronic asthma they didn't have most of the treatments available now. I used an "adrenaline mist" nebulizer that consisted of a glass tube with a hole at one end, a round section with tiny fine glass tubes inside and a small hole in the side. It also had a rubber bulb, and two rubber stoppers. My mother would pour some of the liquid medicine into the small hole on the side and plug the small hole with the stopper. To use the nebulizer I'd remove the big stopper from the end of the tube, place the open part in my mouth, and squeeze the bulb. Some of the medicine would become a fine spray, which I'd breathe into my lungs.

Since my asthma was severe I had to carry the nebulizer with me all the time, and that wasn't easy for a kid to do. It was about ten inches long, fragile, and if one of the stoppers got loose the medicine would leak out. But to me, it was worth it. When my wheezing was intense the relief the nebulizer provided seemed like a life saver, and perhaps it actually was since my asthma was so bad.

I haven't needed that contraption in decades, but I keep it in a box of sentimental things because it meant so much to me when I needed it.

Asthma

More and more people, especially children, are developing asthma lately. But with modern medical treatment that's usually not as serious a condition as mine was when I was a child.

I developed it a couple of years after my father had died because my mother became a chain smoker and our house was filled with smoke and tobacco odor.

Instead of coughing, I wheezed, almost constantly. Often during a bad asthma attack I'd be straining with all my might to breathe, get a cramp in my diaphragm, and have to continue forcing air into my lungs in spite of the pain.

I used my "adrenaline mist" nebulizer much more often than I was supposed to and the family doctor would sometimes scold me about that, but he'd still renew the prescription because I couldn't survive without my "breather."

Often my asthma would become so bad my mother would have to call the doctor. He'd come to our house and give me a shot of "adrenaline." If that hadn't helped in fifteen minutes he'd give me another. Usually that worked, but if there was still no improvement he'd pick me up, carry me down to his car, and take me to the hospital. My mother would follow in her car, I'd be admitted, and they'd put me on oxygen.

I know lots of children and adults with asthma now and the increased number of asthmatics may be due to air pollution. However none of the asthmatic people I know today have symptoms as severe as mine were. (I did know one teenager who had an asthma attack, kept exercising, and died, but that happened because he was high on illegal drugs at the time.) In general, most asthma is at least partially controlled by medications that didn't exist when I was a child.

But it's still a serious condition and I wish all nicotine addicts would get into recovery so nobody had to breathe second hand smoke.

P.S. I apologize for being off schedule this week. I'll be back to the regular Wednesday/Saturday posting next week.

Fragrances

As mentioned in previous posts, fragrances and odor "eliminators." which fool our noses into not detecting odors, can be a major problem for people with allergies, sensitivities, asthma, and other breathing problems. For that reason, many agencies that work with people who have disabilities are careful to keep their facilities fragrance free.

I've tried to find statistics about how many people have problems with fragrances but nobody seems to know and estimates run anywhere from seven to seventeen percent of the population.

Other than stores that sell cosmetics, cleaning products, and women's clothing, churches are among the likeliest places to encounter fragrances. Besides those using incense and scented candles in sanctuaries, many churches fill their entire buildings with perfume because they think it makes people feel welcome.

I've suggested to staff in several churches that they try to make their environments fragrance-free but was told the value of the scents to the majority of the people outweighed the "inconvenience" to the number of people with allergies and sensitivities.

Of course the severity of reactions varies greatly and people who might go into anaphylactic shock and possibly die or have serious asthma attacks because of smelling perfumes have learned to avoid churches and businesses that are likely to use them.

Ironically, many of the same churches use grape juice instead of wine for communion and forbid the use of alcoholic beverages in their buildings because they don't want to be a problem for alcoholics in recovery.

I've searched for the percentage of the population who are alcoholics and, again, nobody knows for sure what that number is. However estimates say as many as 8% of the population are alcoholics, although less than one percent have been diagnosed or know they are addicted. And, as with sensitivities to fragrances, people with the worst problems are not likely to attend church anyway.

I wish churches and other religious groups would care as much about one health issue as they do about the other.

More On Invisible Disabilities

Some people are extremely allergic to fragrances and possibly as many as 17% of the population are at least mildly allergic to them.

A church was trying to start a disability ministry and someone suggested asking members to avoid using fragrances. One woman commented, "I don't see why we should all be inconvenienced for the benefit of a few people."

If a lot of people were in a hurry to get through an aisle in a busy store but the way was blocked by a woman with a cane slowly hobbling along would it be okay to knock her out of the way because she was inconveniencing everyone else?

Of course not!

Just because a disability is invisible doesn't mean it's not real.

Allergic people might just get sinus headaches from being around perfumes and if that woman were knocked down she might just get a few bruises. Yes, she could get broken bones from being pushed, but asthmatics exposed to fragrances might need to be hospitalized and put on oxygen and people can die from anaphylactic reactions. Allergic reactions can be serious and many people who have them must avoid places where they might be exposed to things that cause them.

Avoiding fragrances in cosmetics, laundry detergents, and personal care products and not using them in public places can make a positive difference in the lives of many people.

Why Me?

Since this blog will be about special needs it might be helpful for readers to know why I'm interested in that topic.

As a child I suffered from severe chronic asthma and was hospitalized and put on oxygen several times. I was also sent to a convalescent home for a while, where I met lots of kids with various disabilities. In high school I spent two summers volunteering at a day camp program run by the Marin Society for Crippled Children and Adults. After graduating from college I learned American Sign Language, worked in the Dormitories at California School for the Deaf for nine years, and married the interpreter who had taught me ASL. We raised three Deaf foster sons who had assorted special needs in addition to our birth daughter after I had developed Chronic Fatigue Syndrome (yes, it is a real disease) and chronic neck and back pain due to car accidents. I also taught in many Special Education classes as a substitute teacher and was a Sign Language interpreter in several churches.