Susan Jean Mauro-Bemme
  • 71, Female
  • New Port Richey, FL
  • United States
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Susan Jean Mauro-Bemme's Friends

  • Barbara York
  • Vaidehi Amarendra Bhat
  • Cindy Vaughn
  • laura cripe
  • JoAnn Mulligan
  • Linda P.
  • Ranee Webb Bullard
  • april iturria
  • ari colatti
  • Margaret  DeBacker  Dieguez
  • Dan Hicks
  • Ted Granger
  • Donna Rafferty

Susan Jean Mauro-Bemme's Discussions

Is anyone using Gaberpentin for the nerve pain?
24 Replies

I have been using this drug for over three years now. The strength has been increased recently and it seems to be helping quite a bit with the tingling and the "on fire" feeling. I haven't seen it…Continue

Started this discussion. Last reply by shari Johnston Jan 7, 2014.

Does your family and friend understand?
4 Replies

I've been in this PPS since 1994.......I'm coping.  Just wondering how anyone else's family and friends are doing with your diagnosis.  I"m finding through the years that "they" are not understanding…Continue

Started this discussion. Last reply by Mark Steinfort Nov 15, 2013.

Has anyone been in remission with PPS
4 Replies

I began having PPS symptoms in 94 and was diagnosed with it in 1996.  After a 5 year struggle...it won, I slowed way down, as we all know I had no choice but to wave the white flag.  As I look back…Continue

Started this discussion. Last reply by Susan Jean Mauro-Bemme Sep 25, 2012.

I've just found out that my spine needs to be reconstructed-help anyone.....
2 Replies

While madly searching for an alternative to surgery I once again began to ask why and came across PolioToday.org. It is the first time I have heard anyone say "I had Polio and I have PPS" and that…Continue

Started this discussion. Last reply by Susan Jean Mauro-Bemme Aug 13, 2012.

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Susan Jean Mauro-Bemme's Page

Latest Activity

Susan Jean Mauro-Bemme updated their profile
Apr 11, 2015
Susan Jean Mauro-Bemme commented on Susan Jean Mauro-Bemme's photo
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Polio brace

"yes it is."
Apr 11, 2015
Susan Jean Mauro-Bemme replied to Larry La Penta's discussion Neuropathy
"My feet have had  neuropathy for years tho I am not Diabetic and it is gradually gone up my legs.  No one has ever been able to explain why."
Apr 11, 2015
Bernard Steinberg commented on Susan Jean Mauro-Bemme's photo
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Polio brace

"Isn't it amazing that we all wore braces when we were young, and then we were "cured ".  Only to find out all these years later that "SURPRISE" P.P.S.  I have used braces until my legs atrophied to a point…"
Jul 17, 2014
Marite V commented on Susan Jean Mauro-Bemme's photo
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Polio brace

"Hi Susan, Is that a body brace you are showing?  "
Jun 16, 2014
shari Johnston replied to Susan Jean Mauro-Bemme's discussion Is anyone using Gaberpentin for the nerve pain?
"Would you please share what a adipose stem cell prcedure is, I would love to say good bye to some of my medication.  Thanks."
Jan 7, 2014
John Hagee replied to Susan Jean Mauro-Bemme's discussion Is anyone using Gaberpentin for the nerve pain?
"The trade name is neurontin, it comes in 600 & 800mg tabs. It has been used successfully to control spontaneous nerve signals and pain. I have found that some pps are very sensitive to it and can have unwanted side effects of tiredness, so your…"
Jan 7, 2014
Vaidehi Amarendra Bhat and Susan Jean Mauro-Bemme are now friends
Dec 12, 2013
Christine Turrentine replied to Susan Jean Mauro-Bemme's discussion Is anyone using Gaberpentin for the nerve pain?
"Do you find that it really helps? I still have nerve pain and I am on the same dosage you are."
Dec 11, 2013
Susan Jean Mauro-Bemme replied to JAMES E DAVIS JR's discussion From My Blog "Experience with Social Security Disability and Post-Polio Sequelua"
"Really great blog James.  Most importantly I am glad you connected with Dr. Bruno.  He is a great support and a better man.  God bless you in your trials. You will look back on this eventually now just have faith.  It will take…"
Dec 6, 2013
Mark Steinfort replied to Susan Jean Mauro-Bemme's discussion Does your family and friend understand?
"Hi, Actually yes.  It's hard for anybody to understand that post polio people get weaker and get more if we do anything. I think we are in denial many times and do the opposite of what we should do.  With me it started going difficult…"
Nov 15, 2013
Mark Steinfort replied to Susan Jean Mauro-Bemme's discussion Does your family and friend understand?
"Hi, Actually yes.  It's hard for anybody to understand that post polio people get weaker and get more if we do anything. I think we are in denial many times and do the opposite of what we should do.  With me it started going difficult…"
Nov 15, 2013
Susan Jean Mauro-Bemme replied to Cheryl Stanton's discussion Voice weakening
"I don't seem to have Essential Tremor but I do have voice weakening.  I assume it is part of the Polio aftermath."
Oct 25, 2013
Dan Hicks replied to Susan Jean Mauro-Bemme's discussion Is anyone using Gaberpentin for the nerve pain?
"I was experiencing numbness in my toes, apparently related to the Strattera I was taking for PPS fatigue.  (I'm not taking "gabby".)  Saw a (not particularly confidence-inspiring) neuro and he said I had no problem. …"
Jul 28, 2013
Susan Jean Mauro-Bemme replied to Barbara York's discussion eye muscle damage?
"I believe your right Dan..........plus I've never heard of PPS eye pain.  We can't always blames all our health battles on Post Polio  I'm afraid if we do we might miss out on proper diagnosis."
May 28, 2013
Barbara York replied to Susan Jean Mauro-Bemme's discussion Is anyone using Gaberpentin for the nerve pain?
"HI Susan, I had used it for several years when the nerve pain was more acute.  I gradually decreased the dosage and went off  (I just take too many meds!).  I didn't have any increase in pain when I went off, and I didn't…"
May 24, 2013

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?
1994
List any assistive devices you are using...
back bracing, walker, motorized wheelchair
List any Polio Survivor Groups that you belong to online or in person.
none
Please describe how polio has changed your life.
incredibly
How did you find out about PolioToday.org?
internet

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Comment Wall (8 comments)

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At 5:38pm on October 6, 2012, Cindy Vaughn said…

Hi Susan,

I set up an appointment at the Houston Pos-Polio clinic in November.  I am very excited to find a doctor that can help me.  Have you been to a post-polio clinic?

 

At 5:13pm on October 1, 2012, Cindy Vaughn said…

Hi Susan,

Thank you for the welcome.  It is nice to find a community to discuss PPS.  In Shreveport, LA I am having a hard time finding a doctor that knows anything about polio or PPS.  I made an appointment with the Post-Polio Clinic in Houston, TX to have an evaluation.  Is it easy for you to find a doctor.  Also, I did have an MRI of my lower spine and have 2 discs that are collapsed and the lower spine is curving.

At 1:31pm on September 29, 2012, april iturria said…

Susan, just left you a long note....did you get it? Sat, 1:30pm,at library, Calif time. april

At 11:14am on September 2, 2012, Arlene Scott-Halpen said…

Hi Susan: Slow at looking at emails. On Sept 2 am trying to clean up emails. I see on 26 of august you gave me a reply to my email on the 22  thanks yes i would love to share our stories of you and me.Well i wanted to touch base with you. Back to my old emails to clear off  Regards Arlene

At 12:33pm on August 28, 2012, ROSA LILIANA ALMIRON said…
Hi Susan, I use google translator, sorry if not read very well. My name is Rosa Liliana Almiron (Yuly). I am President of the Asociacion Argentina Postpolio Polio.
In 2008 came to my country, Betty VanGieson and we could meet and knew,
I know she is no longer among us but I believe she is looking at us from above.
o en lugar de I believe, I am sure.
I am planning on going to California in December and I would be very pleased to have the opportunity to meet you

i look forward to hearing for you soon
your sincerely
At 1:44pm on August 26, 2012, Linda P. said…

Thank you.  I've been a part of the post polio network (limited part) for sometime.  I have been seeing Dr. Ryan in Warren for a number of years but have not really gotten involved or connected with others within the network.  It just felt like it was time.

At 8:19pm on August 22, 2012, Arlene Scott-Halpen said…

Hi Susan Today i got your EMail I live in up state NY I would like to start a supportgroup but I don't know how to start. I would like to  be friends with you I am curious as how did you come down with polio and how are you doing with PPS? and how did it effect you? Hon it is 11:25pm Better cut this short My email is  ahalpen@twcny.rr.com   Arlene Scott-Halpen   august 26 1939 this Sunday i will be 73  I have had polio over 50 years now

 

At 8:23am on August 18, 2012, Ted Granger said…

Welcome to Polio Today - glad you found the site and may it be very helpful to you.

 
 
 

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