I have a rather sensitive question for all of you. Do any of you have weakened bladder muscles? I have had issues in this department for about a year now......urgency and get to the bathroom quick!! I am pretty pokey as far as getting from one place to the next, so unfortunately there have been accidents. It is humiliating and frustrating, but something that I have learned to live with. Didn't think this would happen until I was in my 80's! (I'm 61) Wish there was some way to strengthen those muscles!!
Carolyn - I have noticed a difference in my going to the bathroom- I have to wear protection.. feel like I am older than 52-LOL.. I am not sure if it is weak muscles-this is something I have not brought up to my reg. dr. and should-
It surely makes sense since the polio virus affected almost all the nerves in our bodies. I think I also read this somewhere- I have read 4 books on PPS- and printed out alot of info. from the computer.. I just want to know as much as I can and if I can help someone, it makes it all worth it...
Maybe someone else has this problem also..
PS Cheryl - I had shots also when I was very young and still got Polio when I was 4- this I have heard also that had happened to some..
Janet - My sister bought me a package of depends on my 50th birthday as a joke......now I actually wish I would have kept them! LOL! I know what you mean about feeling old when we have to wear protection......me too. I am trying to learn to live with it.
I ordered a couple books on PPS too and am anxious to read them. I need to learn as much as possible......maybe I will even end up teaching my doctor!
Carolyn- It can be funny and then not so funny with the problems that come along- but I figure got to make the best of it... Keep a positive attitude and laugh as much as yah can...
I am happy you got a couple of books- enjoy the reading- I think the more we know the better for ourselves in treating PPS- the most important is Listen to our Bodies.. I am trying to teach this to my hubby- with his Liver Disease - he loses energy and is also weak. He can only do so much- so together we make a person I tell him... We both have to laugh and just keep positive.
hi carolyn and janet...janet i did not know you had had the polio shots too,but still got polio,as i did also...kinda sucks dont it,as it did us no good evidently...i got two brothers and a sister too and they never got polio,but i'm the oldest...i too,have no bladder control anymore,but figured its just part of the menopause as us women are in that age...there is a way of tightening those muscles i hear,when you go pee,try to stop it in midstream..
yea it aint as easy as it sounds neither,lol...cheryl
Hello Carolyn, I am new to this Board (or to any boards for that matter) but have been reading it for awhile now. I suggested this site for our post-polios in Arizona.
Concerning the problem of incontinence, I find it is common with post-polios. I am 61 also and have been using Poise Ultra pads for at least 3 years. Also, I have two prescriptions that really help with the urgency: Detrol LA and imiprimine. I tried to go without them and had the problems return so I will use them forever! It sure is better than being miserable. Kegel exercises help also. I notice that if I get lazy and don't do them for a few weeks, the muscles get weaker.
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Jane - Welcome to this board.... Yes, it seems alot of PPSers do have problems in that area...Not fun. Would like to hear a little about yourself if you wouldn't mind- Always nice to meet new Polio Survivors..
I had Polio at age 4- was luckier than so many- I was not hospitalized like so many were. I just recently was diagonosed with PPS last year- they though I had CFS and FMS- but found out it is PPS... Never even heard about PPS until 2006.. Geeeez, who would have known...
I hope all is good for everyone- we just have to take day by day.
So good to read your post Jane. I haven't posted much lately because I find myself recovering emotionally every time I see a neurologist, so it is often hard to write. My new neurologist again says he thinks I have ALS, even after I told him about my entire family having polio in 1951, and that Dr. Bruno says that there is greater than a 50% chance that I had it too, even though not hospitalized. There is no confirmed evidence as yet that I have ALS. I just had more blood work done and all is normal, as usual. Docs are just basing their diagnosis on my reflexes (hyper) and progressive weakness and muscle twitches. Dr. Bruno says that many PPSers have increased reflexes like mine. Go figure.....
Jane, you say that you are taking Detrol LA. I was also prescribed the same drug. Do you have any side effects? I haven't started taking it yet. The only medication I am taking right now is a little ativan before bed.....helps me sleep better because I think it helps calm my twitches a little. Anyway, I am very interested in how you feel while taking Detrol, and if it really does work. I wear pads every day, and still have accidents once in a while.....very frustrating and humiliating. I know I should drink more water too, but what goes in must come out and IN A HURRY!!! LOL!! Might as well just stay in the bathroom all day!! Must keep our sense of humor! I am 61 and sure shouldn't be having this problem yet!!
Hope all is well with everyone. Jane, please let me know how you feel on Detrol.
hi carolyn...i know that must be discouraging for yet another neurologist think you have ALS,but keep in mind carolyn,they have NOT proved it yet neither...so what is it they do,once they get your blood work results back and all is normal???...not everybody who had polio was hospitalized neither because i wasnt,and think janet said she wasnt neither...ours was probably more noticeable as it being the paralytic type...even the guy who did my EMG about 3 months ago made a comment on seeing both my legs,said the knee goes inward,as par for polio...also said it affected my spine,when he got to testing that area...we've had "limitations" all thru our lives too,even if we overcame other things,like the braces...
i go on vacation starting next friday and i see my neurologist again that monday,first time since having my EMG done 3 months ago...want to see what her thoughts are now,because she'll now have the results of the EMG and also the results of my MRI,which happens to be just fine...both the neurologist and the guy who did my EMG think something would be wrong in my MRI,like a bad disc...they'll be wrong too...but yet too,this neurologist is saying my problems will not go away,but will get worse...
i am so ready for a vacation,going to get nine days off ...having our first family reunion next saturday,so that will be a day of being outside all day...i had this brainy idea of taking the grandkids to Worlds of Fun that tuesday..and thats going to be a whole day out,to get our money's worth on these tickets...i havent been to this place since my kids were little...a lot of walking so i'll have my cane with me,and take some pain pills with me(just in case)...my daughter will have one and i'll have one kid...am going to need the rest of my vacation to rest,after a day of that..but secretly,i'm looking forward to it,this being the kids first time going there...well i hope everybody is doing well...cheryl
Hello Janet and Carolyn, Sorry I didn't get back to you sooner. It seems I never have enough time to get things done around here. (Doesn't it frost you when things take so much longer to do because of our post-polio!?).
I got polio in 1951 when I was 4. My sister and I were both sick in bed with what Mom thought was the flu but I (being a stubborn kid) wanted to get up and play. So I did until I just collapsed to the floor and couldn't move anything but my eyes! Once diagnosed and back home Mom used the hot wool blankets (which I still love the smell of) on me and did exercises on me in a big aluminum cow water trough that they brought into the house. We had just moved out to the country in NM and my sister and I had great fun swimming in the irrigation ditches (probably where I got polio) and running in the fields. They never did a spinal tap on my sister so she was never diagnosed and now she has many problems consistant with post-polio but the docs say she doesn't have PP! Anyway, I was in hospitals for most of my life until I was 16. Was at Shriners in LA for lots of those years. Since I was from so far away I stayed for a year at a time when admitted.
I recovered enough to use a manual chair in High School and College. My arms were never strong enough to manuver on crutches. I worked in AZ as a Medical Technologist up until 2002 when I had to go on disability because I was getting weaker and exhausted by the end of the day. I am now using a power chair and just praying I won't lose all my arm strength!
Carolyn, the only side effect that I have from the Detrol is dry mouth. I take mine before bed so it's not too bad. I have tried to stop taking it for a few weeks but the urgency etc always comes back. I need to drink more water too but I don't like H2O much.
I need to get off now. I am the editor of our local post-polio groups newsletter and am overdue getting started on the next issue. I hope all of you are feeling well. Later, Jane
Hi I am new here, but am having more problems with my PPS, while I was reading the last post I read about being in the hospital a lot. I have had more things go wrong with my left side, doctors laugh at me when I suggest that it may be related to PPS, one even told me I enjoyed going in for surgery and he wasn't going to cooperate. I wanted to slug him, truely I did. Now my PPS has taken another step, I have more nerve pain in my back, knees, and ankles. These were so bad this past week I spent 4 days in bed. Too pig headed to call the doctor, finally I called, and was told to double my gabapentin med. When I went in to see the doctor he gave me a muscle relaxer too. The problelm is I am so loopy when I am on so much, and my apitite(sp) is stimulated and I don't need that, as I have 50 pounds I should loose. I would appreciate any input that makes me feel less like a misfit in the so fit world.
Welcome Sally- Geeeeez, doctors are hard to find that really understand PPS- Yah really need to search them out and try and teach yourself all you can about the illness.. That was not very nice of that doctor to say to you... Besides feeling the way we do usually like crap- we surely do not need comments like that from the Medical field...
good news is know you are not alone... I cannot believe how many Survivors there are just in the US... I would give you the same advice I give all newbies, maybe contact Dr. Bruno- He is in NJ at the Post Polio Institute- he is wonderful about giving you answers and info- also if you can purchase The Polio Paradox- wonderful book- tells what the virus did to our bodies and so much about PPS- yah read some of it and cry- because it seems so much like what you are feeling and going through....
Jane- glad to see you here- that is great you have a PPS group.... There is so much information we can all share- I have learned so much from researching and others- but there is info. out there that can be contradicting- so always beware.... Sounds like you do not need all that medicine or less- that is all you need is more fatigue on top of the PPS fatigue....
hope all is good with Dana, Cheryl, Phyllis, ronnie and Carolyn also...
I do not come on as much as I would like- but try to at least read posts...
Hi Janet, I am doing ok, I just didnt write in awhile because I dont have any bladder problem yall are talking about. I see theirs new people here so Hi, I'm Dana I had polio to but I am only 24. Everything is going good, were starting to get ready for moving to our new house in October and August 25 I am going to see my grand parents for 3 days, I was a little scared to go by my self but my aunt Dawn is comming from Washington DC and fly with me from ATL. Kevins mom will watch the girls and Kevin starts school then for his masters.
How terrific that you are an editor of your local PP newsletter! There isn't anything like that around here.
Looks like you and I had polio around the same time. I never was diagnosed with it, but Dr. Bruno says since my mother, father, and best childhood friend, and all my neighbors all had polio, that there is a greater than 50% chance that I had it too. I feel very fortunate that I didn't end up in the hospital like so many with polio, and that it took 54 years to show it's ugly face. I have had left side issues for about 10 years now, but nothing that landed me in the hospital. My neurologist thinks I have ALS, but at least he is listening about PPS. We'll see. I am in a scooter which helps me so much because I get so tired using crutches trying to walk. My left leg is the worst, including a dropped foot that is pretty paralyzed.
Do you ever get into a swimming pool? I go a few times a week as long as the energy is there, and just kinda float around and do some polar bear crawls and stretches. Being in a pool makes me feel free. Hope you can try it sometime.
Welcome to the board. I am so sorry you have been in pain. It really helps a lot talking to others with PPS. I understand the frustration of your doctors not listening. I have gone throught the same thing. I finally have found a neurologist who will listen and instead of just telling me I have ALS (there is no test yet that has confirmed it), he is listening to me about PPS.
When did you have polio? My mom, dad, best friend, neighbors, all got it in 1951, so it is very likely that I had it too (I was 5 years old), just not diagnosed. Have you read Dr. Richard Bruno's book, The Polio Paradox, yet? I read it and it answered so many questions. It was recommended by people on this board. I am so thankful too!
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I wish you well. Rest.
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