Two things happened today that made me decide to post again.
1. A phone call, on a Saturday, from his Pulmonologist.
2. Flea's post.
I was debating on posting when I read Flea's. That made the decision for me.
My husband, is 51 years old. He contracted polio at the end of the epidemic. Many his age got the vaccination. He, for whatever reason, did not. He was born November 21, 1955. Healthy, strong, large ...and in a tall family. Dark Curly hair, big ears, HUGE smile. Ornery look. I tease him that his childhood pictures look like "The Beav'"
Summer 1959, and he was 3 1/2. He became ill. It soon became apparent it wasn't just any illness but he was very ill. It became a fight for his life and a lifetime fight. Polio put him in an iron lung, took him away from his childhood home in Northern California to stay in a children's hospital in San Francisco where his mom could only visit as she took care of her other 4 children. (No Ronald McDonald Houses then!)
As polio ravaged the body ... eating away the muscle tissue ... crippling his body ... he managed to fight ...with multiple surgeries, unimaginable hours of heat packs and physical therapy, full body casts, hospital stays and even birthdays in the hospital .. He SURVIVED.
His body, is not a normal body.
That, is a picture of a kitten on his rib cage. The curve in his spine, severe, and the rib cage does not expand to leave much room for his lungs.
His chest wall muscles atrophied to nothing, and they fused his back 2/3 of the way up, but did not put a rod in it (they WERE around, we don't know why they did not.)
When I met him, he was 5'5'' on one foot, and 5'3'' on the other. The doctors suspect he'd be ABOUT 6'3'' had he not had polio. That, is how bad the scoliosis & damage is.
He weighs all of 98 lbs. I think I realized just how bad he'd been effected when my youngest was about 8. We were watching a documentary on the Holocaust, as they were throwing the bodies into the mass graves, my son turned to his father and asked "Daddy, did they have polio too?" It struck me, he's THAT skinny! He has THAT much atrophy. Just add the scoliosis to his body, and that's exactly what he looks like!
How he walks, no one is really sure. I've lost track of the number of times that we've been to see yet another doctor to see if something can be done to help him, and the doctor looks around for his wheelchair at the end of the appointment. At that point, we laugh and he hops down from the table. The doctor then, a little embarrassed says "I guess I should examine your gait huh?" Our physical therapist has no explanation for why he can walk. There isn't enough muscle tissue to support his weight ... oh well. It's working, don't mess with success right?
He is wearing out. He needs a cane most of the time now, and we wanted the Habitat house because it was wheelchair accessible for when that's neccesary. Hopefully later than sooner. He fatigues faster than he ever imagined.
The call tonight ... concerns us. He had a sleep study last week. He was hoping to prove that the previous 2 studies that said he had apnea were wrong. The pulmonologist had given him some hope that they'd find something besides apnea, but, there was probably something there, because of the polio/scoliosis.
So, less than a week after the study, he calls, on a weekend evening ... to say "you have apnea, and not only do you have it, it's SEVERE." A regular CPAP won't work. So, the pulm wants to redo the study and try another machine, but my husband couldn't remember what it was. But, he says he's not going to do it, because he (my husband) doesn't think they'll find something to help him. (men!)
I am trying to convince him ... that some help, is better than no help, and unless they find out, he won't know for sure.
In the meantime. If you think that the childhood diseases that we vaccinate against are really harmless diseases ... I challenge you to walk a mile in my husbands body.
I pray that he will go to the doctor and get what he needs.
ReplyDeleteHe may find that if this is treated properly that he will have more energy. And then he will realize how much sleep he hasn't been getting and how hard the apnea is on his body.
later...
PK, That is about the best post that I ever read. I hope that Don will reconsider and go back for his test.
ReplyDeleteI also hope that even one person who doesn't believe in Vaccines will come in here and read what you have written, and then change their mind about them.
Most young parents today haven't seen or witnessed what life without vaccines could be like. For them this would be a awakening they need.
Im glad that Don has you!
Love, Cathy
Hello,
ReplyDeleteThrough my work at Post-Polio Health International, I know of many polio survivors who have weak breathing ability from weak muscles from prior polio and scoliosis. Many survivors use a breathing machine at night (typically BiPAP or a variation) with a face mask or nasal mask. Please look at www.post-polio.org, specifically the articles at http://www.post-polio.org/ipn/back.html under Breathing/Swallowing
Tell Don to give the sleep test and the pulmonologist the benefit of the doubt. OSA is a serious condition -- with his weakened or diminished breathing capacity, too much dyspnea will become apnea and death. The "treatment" is positive pressure from a sophisticated fan and aside from the straps and hoses, isn't much of a bother at all. The difference in the quality of sleep and how you feel upon waking is nothing short of miraculous (yes, I too have OSA and sleep with an AutoPAP at night).
ReplyDeleteI wish him and you the best of luck.
My daughter was falling for the "immunizations are dangerous" bullcrap while she was pregnant. I sat her down and had her take a good look at Torrey's leg brace and then had him tell about the "joys" of having polio. My grandson is immunized. Torrey also has scoliosis and the equivalent of a rubber leg. His breathing at night is scary some times. He blames it on allergies which he does have but sometimes I wonder...... Good luck with Don . I know how stubborn they are
ReplyDeleteTJ, I hope he does ... I'm not going to hold MY breath till he does. He's pretty stuck in his all or nothing mentality.
ReplyDeleteThe first sleep study he did, he had a tech who told him all sorts of stuff, most of it, applied to a normally structured body, without any complications and has nothing to do with anything ... AND stuff that she had no business telling him.
She also gave him mis information on things they look for.
She sounded well educated, and like she was an expert.
He's decided that SHE above all others, knew what she was talking about ...and everything he is told, is weighed against what SHE told him.
How long he sleeps before being put on the machine, how long he's on the machine, what they look for and why ...what the machine does, her definition of apnea (and how he understood it) the limitations of the machine.
What she saw when he went to sleep ... excuse me? since when is a tech allowed to give test results???
But she did ... He's got a bad habit of beliving the first person who sounds credible.
If you're a tecnition reading this and you wonder why you know your job and you can't talk to patience ... this, is why!
If you're a patient and you wonder why the technition can't talk to you, this is why! When things change, the doctor needs to be able to talk to you about it! Before your opinion is formed.
Anyway
Cathy, thank you! That was my hope when I wrote it!
Anon, thank you for the information. I have the website. My mother also has PPS and we've learned a lot from that resource, thank you!
Wil I'm working on him, as gently as I can, if I push, he'll push back.
Hi Raine ...yes, we both know how stubborn they are!
But, without that stubborn streak, would they be the men we love?
This is an excellent post. Very clear on what can happen to someone with polio. Thanks for sharing.
ReplyDeleteI found your site via Grand Rounds (and the comment you left on my blog).
ReplyDeleteVery glad I came. This was an excellent piece-- both heartbreaking and inspiring.
In my first few years as a nurse, I cared for patients disabled by polio (this would have been in the '70s and the patients born in the 40s and early 50s)
ReplyDeleteMy kids were all taught in 5th grade by a teacher with symtoms he contracted while a child from polio.
New mothers need this information. You are are right. We don't need the 1950s again. Thanks for posting.