"Susan, just left you a long note....did you get it? Sat, 1:30pm,at library, Calif time. april"
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april iturria
- Female
- Susanville, CA
- United States
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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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"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…"
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…"
"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…"
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%…"
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…"
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…"
april iturria joined Richard Van Der Linden's group
Hemet Area Polio Survivors (HAPS)
Third Tuesdays, 11 AM to 12:30 PM.Casual meetings with occasional speaker. Coffee and conversation.See More
april iturria posted a discussioncoping 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
april iturria joined Sue Peeters's group
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
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."
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)
- 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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