april iturria
  • Female
  • Susanville, CA
  • United States
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April iturria's Friends

  • Susan Jean Mauro-Bemme
  • Ted Granger
  • Gladys Swensrud

april iturria's Discussions

coping with progression and no remissions lately
6 Replies

my lungs are now at 70%, just got on BiPap instead of CPap...legs are deterioating more every 2-4 weeks...so much deterioation in the last 20 months.  is it usual to go downhill this fast....my mind…Continue

Started this discussion. Last reply by Susan Jean Mauro-Bemme Sep 26, 2012.

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april iturria left a comment for Susan Jean Mauro-Bemme
"Susan, just left you a long note....did you get it? Sat, 1:30pm,at library, Calif time. april"
Sep 29, 2012
april iturria updated their profile
Sep 29, 2012
Susan Jean Mauro-Bemme left a comment for april iturria
"How are you doing April?"
Sep 28, 2012
Susan Jean Mauro-Bemme replied to april iturria's discussion coping with progression and no remissions lately
"Hi April....I just went back on your bio to see when your symptoms started and I see that they began in 2007. That is quite awhile back. How was everything then?  Has something new happened that would trigger such progression in the last year…"
Sep 26, 2012
april iturria replied to april iturria's discussion coping with progression and no remissions lately
"Susan, are you reesting a lot more....does it seem to be slowing down the progression? I am curious what the other health conditions are that triggered the progression again. I seem to not get more than 3 weeks without things seeming worse...for…"
Sep 26, 2012
Susan Jean Mauro-Bemme replied to april iturria's discussion coping with progression and no remissions lately
"I wrote to you a couple of weeks ago but I don't see it here.  In 1994 when PPS started its attack I was doing just about the same as you April.  As I slowed way down so did the disease.  Even to the fact that it went into a…"
Sep 17, 2012
april iturria and Susan Jean Mauro-Bemme are now friends
Sep 4, 2012
Dan Hicks replied to april iturria's discussion coping with progression and no remissions lately
"I still go to the gym regularly, so it gives me some "benchmarks" on my strength and stamina.  I have noticed that some days I'm substantially stronger and have more endurance than other days -- probably on the order of 20-30%…"
Sep 4, 2012
april iturria replied to april iturria's discussion coping with progression and no remissions lately
"Dan, thanks for the info. I use a walker with a seat more and more...having more trouble standing..especially in line at Walmart...hahaha. My arms seem to be getting weaker the last 5 weeks and hurt all the time now....I love to do needlework, read…"
Sep 4, 2012
Dan Hicks replied to april iturria's discussion coping with progression and no remissions lately
"I've been going downhill, but not nearly at that rate. Of course, understand with the legs that there is a threshold of strength needed to walk, and if you're just above that threshold you can get along pretty well with a cane/walker, but…"
Sep 1, 2012
april iturria joined Richard Van Der Linden's group
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Hemet Area Polio Survivors (HAPS)

Third Tuesdays, 11 AM to 12:30 PM.Casual meetings with occasional speaker. Coffee and conversation.See More
Sep 1, 2012
april iturria posted a discussion

coping with progression and no remissions lately

my lungs are now at 70%, just got on BiPap instead of CPap...legs are deterioating more every 2-4 weeks...so much deterioation in the last 20 months.  is it usual to go downhill this fast....my mind just now catching up and trying to accept these "permanent" stages....also are they really permanent once you get to a certain change.....anyone improved that stayed in a certain stage for a while??? thanks..April in northern Calif.See More
Sep 1, 2012
april iturria joined Sue Peeters's group
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Silicon Valley Post Polio Survivors

Caring and Sharing meetings to support polio survivors as they deal with the late effects of polio. Please contact Marsha Conklin @650-855-9559 for further info.See More
Aug 29, 2012
april iturria joined Judy Wilkerson's group
Jun 21, 2012
Ted Granger and april iturria are now friends
Jun 14, 2012
Ted Granger left a comment for april iturria
"Welcome to Polio Today - PPS is just like theoriginal.  It treats no one the same.  I hope your able to find methods to alleviate your stress."
Jun 14, 2012

Profile Information

Are you a Polio Survivor?
yes
What year did you contract polio?
1952
Do you have Post-Polio Syndrome?
yes
When did you begin experiencing symptoms?
2007
List any assistive devices you are using...
Bipap with oxygen lead in...20-30 liters, round the clock oxygen now, walker with seat
Please describe how polio has changed your life.
I am in shock how fast it has progress in just the last 18 months...praying for a remission..knowing a wheelchair will totally change my lifestyle, home repairs, ramps, etc. any encouragement, tips would be appreciated.
How did you find out about PolioToday.org?
read Richard Daggetts autobiography..Just Polio

Comment Wall (3 comments)

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At 12:27pm on September 28, 2012, Susan Jean Mauro-Bemme said…

How are you doing April?

At 6:24am on June 14, 2012, Ted Granger said…

Welcome to Polio Today - PPS is just like theoriginal.  It treats no one the same.  I hope your able to find methods to alleviate your stress.

At 12:34pm on June 7, 2012, Gladys Swensrud said…

Hi April,

Since you have concerns about hooking up to oxygen, I hope you will watch the entire series of three, Breathing & Sleep symposia videos at PolioToday.org:  http://poliotoday.org/?page_id=761.  You can begin with the B&S/2009, but I think that B&S/2010 and 2011 will be extremely valuable for you to discuss with your pulmonary care physician.

Please let me know if there is any way in which I can help.  I accepted your friend invitation, so it is possible for you to contact me through "Send a Message."  It will be a one on one communication.

Good luck as you tackle this new challenge!

Gladys

 
 
 

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