Alec is the flip side of the dancing COPDer you see in the television commercial. For the COPD TV commercial dancer, all it takes is one inhaler, a few puffs and like magic, the lungs are okay and off to the dance floor.
Alec is a COPDer on oxygen, living right here in Kitsap County. .Alec doesn’t dance, he is barely able to walk. The other day he walked for less than two minutes before he was exhausted and had to sit down. He has a doctor appointment with his primary in the next week or two and wonders if he can get strong enough by then to make the appointment.
When he called for an appointment with a lung specialist in town, he was told that he missed five appointments during the past twelve months and she wouldn’t give him another appointment. Ouch. I can relate to missed and late appointments with my doctors. None, so far, has refused to give me another appointment.
My phone rang last week and a man asked for me by name. He gave
his name and went on to say he had gotten my name and phone number
from a article Chris Henry wrote one month short of five years ago.
The article mentioned physical fitness and EFFORTS, my online
support group.
I told him about the years I wasted not knowing what I could do to
help myself. It wasn’t until I found EFFORTS (Emphysema Foundation
For Our Right To Survive) online and learned to go BEYOND my
shortness of breath to gain strength and muscle that life began
again.
I encouraged Alec to begin rehab to get strength back and talk with
the doctor he has a good relationship with to begin a team effort
to regain as much muscle and fitness possible,..unless there is
some medical reason he cannot exercise.
Alec didn’t know about Pursed Lip Breathing, the oximeter, none
of the basic tools COPDers NEED to be the best we can be for the
best quality life possible. He has not seen a doctor for his oxygen
use in a year!.
We exchanged email addresses and this is where I became aware of
unintentional gross neglect of a COPDer by not educating him in the
most basic how to PLB breathe! He didn’t know why a COPDer has to
exhale twice as long as he inhaled! Why not? How many other folks
do we have in Kitsap County, feeling alone and trapped without
knowledge and encouragement to work toward a better quality
life?
I’m guessing Alec is the tip of the iceberg of ignored people right here who need help! COPD can be a gradually isolating disease.
I suggested he join ‘Walkers’ on EFFORTS, contact the American Lung Association of Washington and the Shortness of Breath Self-Management Study at the University of Washington.
Following are emails I exchanged with Alec and his permission to
use here.
________________________________________
11/27/2009 8:32 AM
Hi Sharon..I contacted my doctor’s office, although he was off, and the nurse said go ahead and keep my appointment and discuss with him about being my medical partner in my quest with EFFORTS. Hope you are doing well.
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On Sun, 29 Nov 2009 09:29:29 -0800
…
Good morning Sharon….I am having a tough day today and have become
discouraged ,a little. I thought I would exercise by walking slowly
as many minutes as I could..If I didn’t have my faith in God, I
don’t know where I would be! I started walking and realized just
how bad of shape I’m in. I couldn’t make it 2 minutes ,with my 02
!!. Then I realized I hadn’t prayed or eaten or anything….and
that’s not like me. So I prayed and ate and started again. I could
barely make it over 2 minutes walking slowly. I realize you
probably don’t want to hear all this, but I will leave you alone
after this. I have a week from tomorrow to get in some kind of
physical shape to make it to the my doctor’s appointment. I do want
a better quality life. You have given me the inspiration to do
that. I didn’t have much luck finding an exercise regimen on
EFFORTS, so I will look on ALA for some ideas. I am going to keep
moving forward no matter what happens, even if they are slow, or as
you put it, one foot in front of the other! I just get down
sometimes, but my God always picks me up and says…keep your eyes on
Me, not your circumstances.. I’m sorry to unload all this on you,
but I won’t bother you anymore. I will continue today to increase
my minutes. Thanks for listening…..
*********************
To: “…
Sent: Sunday, November 29, 2009 11:07 AM
Subject: Re: Discouragement
…..call 911! Or your doc. No one should be in the kind of shape you mention and by yourself…no one!
Please…call for help…NOW. Sharon
*****************************************
On Sun, 29 Nov 2009 09:48:00 -0800
…
Sharon…I’m okay if I’m sitting down and not walking for a lengthy
period.I don’t believe I need 911, as I breathe okay if I’m not
walking or exercising.I’ll be okay.I think it sounded worse than it
is! I’m alright! Please don’t worry yourself. Believe me, I know
when I need 911……..Please…I’m so sorry I startled you …….
…
Sent: Sunday, November 29, 2009 11:26 AM
Subject: Re: Discouragement
Alec…Thank you for sharing with me. I’m astounded that no one
has helped you build muscle and that you are alone through this and
I wonder how many more of us are out ‘there’ that are in the same
boat? We need to help each other with encouragement … will you give
me permission to use this email exchange (I won’t use your name)to
emphasize the NEED for education for COPDers in my blog?
Sharon
11/29/2009 12:12 PM
We’ll do it together, Alec…okay? AND, one day, you’ll be riding a
recumbent trike…one step at a time, one cycle wheel turn at a time
and have fun too.
God has a sense of humor, I am convinced of it. Do you have a
goldfish, bird, birdfeeder…any pets?
You are not alone.
Sharon
**************************************************************
11/29/2009 9:34 AM
Yes, you are right Sharon. God is in control and has a sense of humor! There’s never been a doubt in my mind about that. I didn’t know you would get so worked up about it or I wouldn’t have e-mailed you. I’ve been here for over 4 yrs. by myself! I had a dog, but he got attacked by raccoons and had to be put down. I still cry about that one! Malcom. Great dog. Half Akita, half Spaniel. Big! He was 12 and had a hole tore in his throat by the raccoons over some dog food. Malcom stood his ground, but it cost him his life. Reminds me of ….yea….Jesus! The Vet said he could patch him up, but he was 12 and bigger dogs don’t live as long as smaller ones. He said he probably wouldn’t last long if he couldn’t eat. He couldn’t get up to eat. It was all so sad. I called the Humane Society and they came and carried him away. I’ll never forget the look in his eyes. But I’ll see him again when I join him in heaven.But it still hurts.Poster Child? Never considered myself one of those. I don’t want to lose what little freedom I have. Can you understand that? I hope so! If I told people just how bad I was they would freak out.We do need education in the rehab area. People caring about other people! My family lives out of state and I hate to ask someone to call me everyday or drop by because they all have families, except Louis, and he’s very busy at the church.My goal is to get healthy enough to ride my recumbent bike, go to church, prayer warrior’s on Thursdays, and to go and tell people how much their God loves them! Not to much to ask is it? Nothing is to big for God! I can do all things through Christ who strengthens me! I am going off-line to read my Bible and study. So I’ll talk to you later.One step at a time…you’re right. And fun….I used to love to swim. Couldn’t get me out of the water in the summer. You are a dear, with a big heart. Talk to you later…..Blessings…….
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On Sun, 29 Nov 2009 09:21:42 -0800
…
Sharon…alot of people have said that I am brave to be on my own and
in the shape I’m in. No one has even offered to help me get in
shape. Maybe that tells me something about who my real friends are!
I’m sure there are other people like me who are alone. If something
serious happened I would be in a jam ,especially if I couldn’t dial
the phone! But then again, most people I know have families and
can’t come help me, plus I feel like I’m intruding, and I am, if I
ask them to help. I have a single friend at church who is very busy
with the holidays this time of year, but I don’t think he realizes
how out of shape I’m in. Yes, you can use the e-mail exchange. I
don’t know if I want to read it or not, but yes,use it. It’s just
one of those things. I just happened to be alone when this all
happened. What else can I do? I don’t think I’m bad enough to be in
the hospital, but I do need someone to check on me daily or come by
and see how I’m doing.. My friend came over yesterday and looked at
my computer. I left a message for him to call me at his convenience
when he gets home from church today. I’m going to ask him his
opinion about whether I need to be in the hospital or a care
center, since I live alone. He’ll be honest with me. …
The following article provides a good reason why COPDers tend to have panic attacks as they get more and more short of breath….
“The portion of our brains that is responsible for registering fear and even panic has a built-in chemical sensor that is triggered by a primordial terror — suffocation. A report in the November 25th issue of the journal Cell, a Cell Press publication, shows in studies of mice that the rise in acid levels in the brain upon breathing carbon dioxide triggers acid-sensing channels that evoke fear behavior.” More at http://www.sciencedaily.com/releases/2009/11/091125134651.htm
Goals:
1. Education and rehabilitation for the COPDer.
2. Find the COPDers like Alex…let them know they are not alone and
what they can do to help themselves to a more active life.
3. We can help each other if for nothing else but a cheery “Hi, How
are you?” voice on the phone.
4. Where are you?
More later… Sharon O’Hara
