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From: DONNAN3 DelphiPlus Member Icon11/24/11 7:14 PM 
To: All  (1 of 8) 
 1475.1 

I just found this forum today..don't know why I waited so long to hunt it up. I had polio in 1952 when I was 13..and started high school with braces on my legs. I am now working with a therapist who is familiar with PPS, but I had first heard about it in Houston through TIRR back in the 80's but at that time showed no signs of anything. That has changed.. My doctor is not that familiar with it, but he knew which therapist to send me to.

 
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From: Sally (SARABOWLDEN) DelphiPlus Member Icon11/24/11 8:26 PM 
To: DONNAN3 DelphiPlus Member Icon  (2 of 8) 
 1475.2 in reply to 1475.1 

Welcome!

Some of us are still around, although it may not look that way. A lot of us are having health issues, some PPS related, some not.

I'm glad you found us--if you go back thru the previous postings you'll find a great deal of information. Also, I'm sure your post will attract others back to welcome you. There is always someone checking to make sure no post goes unanswered. Any questions or concerns you have let us know, and we'll do our best to help.

I'm 62, retired on disability 10 years ago. I had Polio in 1953, was completely paralyzed (except for my lungs)and recovered to the point that the only "obvious" damage was to my right arm. I had the first signs of PPS in my 30's, and even saw an expert on the subject (rare in the 80's), who diagnosed me and advised me to get an electric wheelchar for work to lessen the strain on my legs. I worked in a large city hospital as a medical social worker and walked a great deal. I reacted badly to the idea, finally was forced to get a power chair in 2000-after I had overworked my muscles and accellerated the damage. It was this forum that gave me the strength to get proper care and, when the time came, not feel like a failure for retiring at 52.

Sally

 

 
From: DONNAN3 DelphiPlus Member Icon11/24/11 9:25 PM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (3 of 8) 
 1475.3 in reply to 1475.2 

I am glad you are still around. Just talked to a friend in WI, and she has been fighting with doctors, etc, over her treatment.. They used EMG to finally diagnose her, after screwing up everything in therapy by using too much counter=resistance, and too many wrong reps of things. I will direct her here. I will check to see if she is already on Delphi.

I am 73, and was a teacher, farmed, and had babies.. My polio was mild compared to most, and I never was given any kind of therapy or anything while recovering. The 'saving grace' for me is that I was a swimmer, gearing for the Olympics, and managed to keep myself fairly mobile when I wasn't. I had surgery to removed extra bones in both feet and pull up my arches, and apparently contracted polio in the hospital. They took off the initial casts and my feet were frozen in position the casts had held them in. I had been sick for a couple of weeks, ached, hurt, ran a fever, but no one, including my grandfather who was a doctor, even thought about polio at the time. They changed their minds 4 weeks after surgery, recasted my legs (which had been planned) and told me to figure out how to walk with walking casts on both legs. I had been crawling, dragging both legs before I was in walking casts. I figured out how to maneuver on those casts, and the doctors kept adding more plaster of paris as I broke up the casts, until I was hauling 20 pounds on each leg. Turns out when I had a partial knee replacement in 03, that I had never been taught to walk correctly back then, and I walked swinging my whole leg forward. So, the therapists, who decided I needed extra weeks to relearn walking..which I did. I have, in the last 4 years, developed a curve in the lower spine. I just finished 2 months of proper therapy, doing muscle strengthening activites..10 reps normally, working on strengthening the quads, and working on flexibility including in a pool. Two months off, but a list of exercises to especially stretch the hamstrings, and maintain flexibility..and then a reevaluation. They have me to the place that much of the time I can actually finish cooking dinner without winding up draped across the counter calling my husband for help. I used to walk 4 miles a day, and now I can rarely manage to go to a small mall...unless I know where someplace to sit for two or three minutes until the back calms down.

 

 
From: twobjumps11/26/11 2:09 PM 
To: DONNAN3 DelphiPlus Member Icon  (4 of 8) 
 1475.4 in reply to 1475.3 
Hi Donna - Welcome to our forum! Yes the forum is a little quiet right now but a lot of us are still around and do check in. I got polio in 1953 - we had a very big epidemic in the Yakima Valley (Washington State)at that time - thinking back I bet 'I' knew of at least 25 or 30 others that contracted polio - some in iron lungs - some completely unable to walk and others that were able to have a little mobility. My dear friends sister was in an iron lung for quite some time but she does NOT show signs of pps - how interesting is that???
Sally gave you great advice about going through all of our past postings - I think you will learn a lot and if there is anything anyone of us can share or do for you just let us know.
Stay well
bj
 

 
From: janewheels5/20/15 1:36 PM 
To: DONNAN3 DelphiPlus Member Icon  (5 of 8) 
 1475.5 in reply to 1475.1 

Hi there.

I have not been on line on this forum for a while but I welcome you to it. It is a great place to learn, ask questions about anything and everything.

I had polio when I was 6 months old, my twin sister who slept in the same cot on that fateful night did not get it, she now has M.E thought unfortunately.

I used to wear calipers/braces on my legs and walk with crutches or as I called them "sticks". Now sadly I am a full time wheelchair user due mainly to the wearing of the calipers making my skin tissue so weak that it
cannot stand any sort of pressure on it now.

Take care
Jane

 

 
From: DONNAN3 DelphiPlus Member Icon5/20/15 3:52 PM 
To: janewheels  (6 of 8) 
 1475.6 in reply to 1475.5 
I'm still around; in fact, just had a doctor's appointment today. Thyroid levels are holding perfectly with the .88 levothyroxine, and the doctor agrees it wasn't Hashimoto's but the slow thyroid due to polio. Bit more weakness, but the therapist he sent me to almost 3 years ago taught me well, and I do my exercises (limited, slow,) at least 4 times a week, and am back in the pool and can do the aquatic therapy she taught me also. I was a guest instructor at University of Florida Physical Therapy department back in February. 20 of us with PPS were guest instructors to teach 68 upcoming graduates (many with masters and a couple with PHD's) in PT about PPS and polio. They had already had classroom lectures, and then we were turned loose on them. Took me three days to recover, but the students were really great to work with and paid attention. Several are returning to countries where there is still some polio, so there were no discussions of 'anti vacciners' except for their opinions of them..which were the same as ours...
 

 
From: Bigcrusher13/14/17 8:31 PM 
To: All  (7 of 8) 
 1475.7 in reply to 1475.5 

Hello To Everyone,

Just wanted to touch base, with all the wonderful patron's who visit this informative forum. Yes I have been away for a long time, and I apologize for that. I have found that the year's ago were nothing compared to now. I am just about totally house bound, and have a tremendous amount of pain constantly. My legs and back muscles are dwindling away, and falling is my favorite position. There is one thing I have learned, one cannot fight this Post Polio Syndrome. Another problem I have found out is I can get up from a sitting position, start to walk and all of a sudden I have no feeling's nor strength in my leg's. I go down so quickly and my knee's have just about had it. It feels like I had no feet nor knee's, and I go down hard. I am still in the process of trying to get back to the way I was before this major fall. I truly don't think I will be able to, it has been approx. 3 month's, I think my knee's are saying "no way" "forget it" "try taking up knitting". Okay I am gonna be trying to come onto the forum more often, I apologize for that...........

 

 
From: Sally (SARABOWLDEN) DelphiPlus Member Icon3/15/17 2:41 AM 
To: Bigcrusher1  (8 of 8) 
 1475.8 in reply to 1475.7 

Welcome home Dave! I've been tempted to change the name of this site to The Post Polio Syndrome Lighthouse--to light the way for travelers who are looking for help, and to hear from you.

I'm sorry you are feeling so miserable--I know that hardly describes it, but WTH. I hope you and Linda are in that accessable home you envisioned and you have stopped shoveling snow! I have a new friend who is a partial quad who insists on shoveling with a shovel in her power-chair--and yes, I am worried about her, too...

I'll let Jane and the others know you are here. Please come back any time. If you join FB, or already have "Friend" me--I'm very selective.

Sally

 

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