Awwww, y'all brought tears to my eyes.. I am ok just have been extra tired and fatigued - I have gotten weaker- but just got to get back on my program.. My hubby has been sicker than usual- so I have had to take on extras lately.. I thought about getting a visiting nurse to come in when he gets in his bad bouts... But always seem stubborn- this is where my stubborness comes in.. Trying to do everything like we used to do...
Carolyn, I am so happy Dr. Bruno has given you some great advice- he is truly amazing.. I do not know what I or many of us would do without him... I hope you can get the tests done and know what you have to do... I pray it IS PPS(not that I wish that on anyone...)
Dana- Always a pleasure to hear from you- I am proud of yah, wearing shorts- I was just a little self conscious with my brace but when I got the 2nd one I said heck with it... At least they match - LOL..
Cheryl - I still will worry about you working, I don't know how you keep doing it. I just pray things will work out for you and you can retire or really wind down...
Phyllis- Where are You? I hope everything is ok??
I should hear about my PC soon, Medicare could say No- I have heard they have gotten tougher with things. I know this PC could help safe what I have... even if I only use it some of the time...
Well, please do not worry about me- sometimes I just have to take a break- typing at the computer brings on spasms- has for the last 5 years or so.. Hubby seems a little better, but with his illness- yah just never know..
everywhere, so I guess I am just a regular, non-stop twitcher!! I am so thrilled that he takes the time to answer my emails. He said that sometimes PPSers have swallowing problems, but usually it is minor like when your food or liquid goes down the "wrong pipe" and you choke......
Carolyn - I have noticed that I sometimes choke when I am eating- not alot though-I also notice I get hiccups more and more... Oh well-
I will be thinking of you next week when you see this Neurologist and that is wonderful that Dr. Bruno will work with you and this doctor. He will do that if you need.. he goes that extra mile and has a good sense of humor.
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I have been using my hubbies scooter outside- what a huge difference, being able to drive around our land- I could never walk it anymore- even with the crutches which lately they are bothering my arms and hands more... Butwhen I get on the scooter I love the wind against my face- like when I could ride a bike...
Anyho- thinking of yah- hope those fires clear up- what horrible storms and weather we have. We have been lucky here- but last couple of days have been hot, hazy & humid- but I will not complain-LOL.
Last edited by moderator2; 07-11-2008 at 05:27 AM.
Reason: off - topic
ohhh janet,its good to see you back here because we've been worried about ya..i am really sorry to hear your husband has been sicker,and cant be easy on you neither..its such a good thing that you two have each other ya know..
carolyn,i am happy that dr. bruno is helping you out..and yes its great that he answers his own emails,because you dont find that much...
well,i'm doing ok janet so dont worry about me...it did finally happen though,when i was taking my bath yesterday and was trying to lift myself out of the tub,i slid back down and hit my head on the side of the wall..at my other house,the tub was the other direction and was easier for me to throw my polio leg over the outside of the tub and use my right arm and right leg for strength in pulling me over to the edge of the tub to sit,then stand up..in this house,the tub is opposite so i have to throw my right leg over the side of the tub,and use my left arm and left leg to lift myself up to the edge of the tub,and my left side isnt my strong side,so i lost it and slid back in the tub...
i sure know what its like to feel "self-conscious" about "us"...i dont use a brace yet,as nobody thinks i really need one yet,and the short leg brace was decided against as it would fit inside my shoe,and then would be getting into the mechanics of my foot then...i use a cane everywhere in the house,and anywhere i go outside the house,but a couple times i took it to work,only to use for when it was time to go home and help me get to the car as my feet would hurt sooo bad by then,and i felt so self-conscious walking thru my store with it,that i didnt do it anymore,i walked with the excrutiating pain instead..but i always have my cane in the car for when i got to my car...i thought maybe a long leg brace would might give me support in the upper leg so i wouldnt tire out as much,but then again,have decided that as long as i work,it wouldnt do me good to wear at work as it being so heavy,i think it would tire my leg out even more...
well i hope everybody is doing well today...love ya'll,cheryl
so i wouldnt tire out as much,but then again,have decided that as long as i work,it wouldnt do me good to wear at work as it being so heavy,i think it would tire my leg out even more...
Cheryl- Hi, dear.... I would look into the longer brace- they do make them much more light weight- my shorter ones are out of carbon, some plastic and velcro to strap around my calf... Never having worn braces, I was afraid I would have to wear those old metal and leather ones.. But they have made wonderful ones that are so lightweight and fit good under pants... I would look into this- it could safe you from a bad fall and maybe help with the weakness....
I also would like to stress that you should look maybe into grab bars around the tub- we have a handicap shower that you could roll into with a seat and grab bars all around- we got that last year since everything in our one bathroom seemed to need replacing all at once so it worked out. Our bathroom off the bedroom does not have grab bars around the tub, I am waiting for the money tree to go to redo that one also- we do have the higher toliets also- but need to install grab bars around both potties still-LOL... Please look into this- very important..
Have you tried a walker? Maybe this would help you even more to get around- Please don't worry about what others may think- remember it is your body not theirs and your life not theirs....
Got to go for now- we have a plumber here today and I am going to go back to bed for awhile- hubby is doing better so he can take over for now-
Love & Hugs Janet
I may been thinking about shots in my back - the pain gets terrible- Anyone had the shots?
Cheryl, Janet is right about the long brace, that is what I have and I never notice the weight, just the support I get so I can stand and walk. I guess its something you get use to, I allways have the long brace so its easy for me, I know when I stand it hold my knee straight so no worry about falling and I do'nt have to use my hand to push back my leg. When Kevin and I lived downtown before we got married I worked in a copy and print shop to pay my part of the rent, I know I could of never worked that job without my brace, I had to stand a lot and sometimes carry things but not the real heavy boxes. My brace is metal and leather, it is less hot to wear than the plastic. Its allmost 5 pounds counting the shoe and lift, I am only 105 but still its ok.
Hey everyone! I am also still here. Barely tho. I can't recover from all my company. They actually stayed at my Mom and Dads most of the time and I really did't do much cooking but the stress of getting up every morning, putting that 5 lb. brace on, going to Moms so we all could visit in one place just wore me out. No, family too does not understand completely what we are going thru. As much as I loved seeing everyone I just wanted to come home about midday and lay down. Janet I know what you mean about getting weaker and Cheryl we have some many of the same things going on. My tub is also backwards from the other house we lived in and I use my upper body strength to lift myself up. With me getting weaker all over I am so afraid of slipping back into the tub like you did. I have a shower chair but won't commit to using it yet. Guess it will take a lump on my head or worse to admit I need to do something different. I too have had the triple arthodesis on my left foot when I was about 12. It hurt for a long time, like years, after the surgery and then just stopped. That ankle leans inward a lot and looks big. It swells really bad lately if I have it down much. I've been wearing the long leg brace about 6 yrs. now and my back knee is so bad that I broke the metal in half on my first brace and wore the shoe out twice. It digs in my skin because it presses so hard into those leather straps and if I'm out in the weather it sticks and makes sores. I hate it but what are we to do. I also wear it under my pants and my daughter says Mom its not like people don't know you have a brace under there. lol Its so uplifting to read all your posts and I think of you all daily. Where are all you men folk at anyway. We haven't scared you off have we. lol Take care everyone and stay out of the heat. Love ya, Phyllis
hi janet,dana,carolyn,and wow PHYLLIS is back ...phyllis it is soo good to hear from you again,and knowing you're doing ok...was great to hear someone has had this triple arthrodesis,because you're the first i've come across to have had this surgery,so you know what i mean and understand what i'm talking about...and yes my ankle leans inward and looks big too..and times when i do get swelling,its around that ankle area..i think my foot gets stiffer as i get older,but in the area where your leg and top of foot meet to bend,and that foot has always been easily to pain..i will even get sharp shooting pain shoot thru that foot and cause my foot to jerk..and because of that foot being so stabilized,its whats causing my bone growths(spurs) now,as i'm on my feet so much..i have heard of those shower chairs but have never seen one,but thought i'm a bathtub person so how would that work then...janet,i never even thought about grab bars,but that might be a good idea..and phyllis i knew i was having more trouble getting out of this tub,but now have hit my head trying to get out,so now am thinking i need something,so dont you wait till you hurt yourself before you decide ok..if you have something to use,use it ok...actually if you have a shower chair,use it and let me know what you think,if it helped you any...i asked my ex husband yesterday if he could see about putting some kinda lights around those steps outside for me,so he's going to fix me up something...
dana,i hear what you're saying about a leg brace,but so far none of the doctors seems to think i need a leg brace yet...dont know what determines when a person needs one..
Cheryl, its good they say you dont need the brace yet but it must be hard for you on your feet all day without any support for your polio leg, I know it would be scary for me like to fall all the time. Phyllis, I am sorry youre brace is giving you so many problems, maybe you can go back to your orthoist and they can fix it, my knee is very weak to but my brace gives me support and no pain exept if I walk or stand to much and I am very thankful because we have 2 little girls and my brace helps me take care of them without worry about falling.
Soooooo glad to read your post Janet. Yes, we all worry about each other. I can't tell you how much of a comfort it is to me to be able to communicate with all of you. I am sorry your husband is not doing well.....I will pray for him for sure.
Cheryl, I bet a brace would really help you. I can't walk well at all without mine.....my foot is too floppy and I run the risk of dragging it on the floor and possibly breaking toes. Scary thing is that my stronger leg, my right one, my toes are stiff and so is my foot, and I feel my leg getting weaker. Great. I thought I would only have one weak leg and foot, my left one. Now my right one is acting up. I think that I read in Dr. Bruno's book that any limb can be affected with PPS....correct? I also read about polio foot - how the blood vessels are affected which is the reason why my foot turns purple after I get out of the shower or hot tub.
Very hot here and smoke is REALLY bad.....lots of community centers and pools are closing, and lots of outdoor sports and activities are cancelled. I have never seen it this bad. I go to the community pool a couple times a week, but not this week. Staying in is what just about everyone is doing around here.
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Be well. Take care. God Bless.
Last edited by moderator2; 07-11-2008 at 05:22 AM.
Reason: please read the posting policy to know what is allowed
I just had to post this - I read something that blew my socks off in Dr. Bruno's book (I am on page 163,164). I have had such a bad, bad sense of direction my entire life....really bad....lost constantly....unable to picture where things are. I have always felt "stupid" when it comes to directions, yet I always did really well in school and college, have a masters degree, and have been a science educator most my life. Go figure. Polio did a lot more damage than I ever imagined. When I read that polio survivors have poor visual memory and many have trouble with visual maps while driving, it blew me away! Anyone else have a bad sense of direction?
Carolyn,Phyllis,Cheryl, Dana & where is Robbie.... So glad everyone is doing the best they can.. I feel for all of you in Ca. with the awful fires and horrible air.. Please do be careful... ( removed )
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Carolyn, thank you for the prayers- I just hope one of these days Vern can get the transplant he needs.. He is very sick but just doesnot move up on the list- he has been pretty much in bed for a week now- I had his fluid pills increased and feeding him more lactulose which helps the liver clean itself because his just does not work like ours... It is difficult but we always manage- just takes alot out of both of us... He gets so discouraged and I try to stay positive but there are days... Together we make a person is what I tell him. LOL
Well Buds - talk to all soon
Last edited by moderator2; 07-11-2008 at 05:23 AM.
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hi janet,dana,phyllis,and carolyn...dana,its mostly when my leg is tired from so much walking at work,that i feel like i could use a little support..i'm just glad the pain is under control now..ohhh i sure screwed up with my pills too..my neurotin and the celebrex look exactly alike,just a tad smaller on the celebrex,well i keep both in my purse,and try to remember to take them at noon when i'm at work,(which i never do remember),so i'm always taking my afternoon pills when i get home from work..since yesterday,my stomach has felt nauseaus and again today,and when i got home from work i took my pills out of my purse,and just happened to catch that i had the celebrex,so something made me think to count my bottle of celebrex,as i had been using the samples first that the doctor gave me..shoulda been 60 pills and i counted 49 pills,sooo that means i've been taking FOUR pills of celebrex and NO neurontin...i take 3 pills neurontin three times a day,and two pills celebrex a day,so i ended up taking 7 celebrex yesterday(afternoon & bedtime) and then 4 celebrex this morning before going to work..so now that means i havent had any neurontin since yesterday morning,so i took the neurontin when i caught what i had done,and no celebrex,when i got home today,and the neurontin is causing me that swaying affect again when i walk..still feel nauseated right now too..i am going to have to be careful from now on..i take five pills in the morning before going to work,thats including the pill i now have to take for my cholesterol once a day...
carolyn,i did read that too that your good muscles can go bad,and i thought the same thing as you did,always felt like my left side was my bad side,and now i got to worry about my good side going bad on me now...this hasnt of yet started happening to me,but is why there is such concern with the job i do,as it will eventually start wearing out my good muscles since i'm over compensating for the bad muscles..right now its my bad leg and bad foot starting to be affected with the pain and muscle weakness,whereas i never had this happen before this year..i'm putting too much stress on my joints and wearing them down even more..its when i start to feel my good side getting weak,is when i need to call it quits,before i lose too much..and i am definitely lousy with sense of direction,can get lost so easy..i need reverse directions to come back too..but i was not that smart in school though neither...
Hello Everyone.....and so good to hear from you Phyllis.
I feel badly about all your surgeries. I have never had surgery. At least this didn't hit me until 2 years ago. I can't imagine dealing with it my whole life like some of you have. I am honored to write to you and be a part of your "family." I admire your strength and courage. Sometimes I feel like my strength and courage are falling by the wayside, but then I somehow pull myself back up especially when I think about all of you.
I had to put grab bars in my shower/tub and get a shower chair. I have a shower/tub that I really hate and wanted to get it remodeled into just a walk-in shower. Couldn't afford it. So, my son removed the sliding glass doors, so now I can sit on the side of the tub and swing my legs over to get in. It works much better. I have a hot tub outside and my son installed a heavy duty grab bar right on my house next to the tub so I can grab it and steady myself while getting in. I couldn't get in without it.
Sometimes I think I need a full leg brace. I just have a plastic one that weighs one pound, that goes under my foot, and then attaches with velcro around my calf with a plastic support. My knee gives out and I feel like I need more support. I'll have my doc check it out for me when I see him next week. Sorry you have had trouble with your brace......5 pounds seems like a lot of weight, but if it works I am sure it is worth it.
Air is still so bad here. I have stayed inside all week. Fires are still not contained. At least it has cooled down some and we have a breeze. Maybe the wind will clear things up a bit.
Love to all of you. Again, I am honored to be writing to all of you.
Carolyn and Cheryl, I have problems with directions to, I love to drive but I get lost real easy. I allways had problems in school but I never thought it was the polio, just I did'nt like school they pick on me alot in CA then when we move to GA the school work was so much harder I allmost fail. I was allways bad at writing and math but Kevin help me so much to pass and graduate. He is the smart one of the family and hopefully our girls are like him to.
Maybe its just because I am use to it but the weight of my brace never really bother me. My right leg is soooooooo small and weak I think if I can handle the brace you probaly can to. I know how scary it is to worry your knee give out, I went for a year without my brace when I was 16 I had alot of pain and allways I was scared of falling. My brace is ugly and I hate it but I am glad I have it I can hold my children or walk with my husband and not worry about falling, I use to think it make me look like a freek but now I realize it help me to live more normal.
Hi everyone! Hope all are doing well. I'm dragging as usual. My legs have been wanting to spasm all day. I just want to tighten those muscles up for some reason. It feels awful. Been trying to get my house back in order since all my company has gone home. Carolyn I don't know if I mentioned this or not, my memory is shot, but I have had over 20 surgeries on both feet and legs all below the knee. The Childrens Hospital in Chicago was my second home. I have some great memories and some not so great. Hope you are surviving the heat and smoke. Cheryl, how is work. I can't imagine being on my feet all day. Make sure you get that medicine straightened out. If you don't you'll be suffering from a lot more than PPS. LOL Janet, how are you and hubby doing? I wish we could all go out and have coffee together. Wouldn't that be great! I'm turning in, God bless you all. Love ya, Phyllis
hi phyllis,good to hear from you again...i have a certain area in my upper leg that i always want to "tighten" up them muscles too,but never took that as "spasms" before,because i have an area on the top of my leg just above my knee,that does "spasm" at times,and its like it goes into a spasm fit several times and then stops...the area i always "wanna tighten up" is kinda on the inner thigh side..but when i finally did notice i was doing this,it now drives me nuts,lol..the area where i get the "spasm fits",does not happen frequent,very seldom in fact,the last time that did it was several months ago...this other "tightening" happens all the time...work is going ok,and the celebrex seem to help with my feet pain,till i get home and get off my feet for a bit,then have to stand up,the pain is there then...my boss had me come lift up some boxes,to above my shoulder,(pretending he hurt his shoulder),just to see if i'd do it,so ya know these are the kinda guys i work with,dont matter if i were to hurt myself ya know..and ya dont let this guy know you cant do something neither,so i did it...so its going to be tough to make it as long as i want to try to make it,with guys like this...so phyllis,what were all these surgeries you had to have?...well i hope everybody else is doing ok...cheryl
Hi Phyllis and Cheryl- I have been just lurking around.. Phyllis so sorry to hear about the spasms, I was getting them mainly in my shoulders and neck- now it seems like both my calves just want to tighten and go into spasms- Yikes... So I know what you are feeling.. Last couple of nights had to take the Flexeril but tonight no. Now I cannot sleep and it is 3:20A- I get this way now and then- brain racing- Do y'all get that also???
It was alot worse when i was working- but still gets to me and I find the best thing to do is get up...LOL - Baking something or doing something constructive.
Hubby is doing the best he can- it is very hard but we manage together... If his legs were not so bad- I think he would feel somewhat better... but with end stage liver disease just do not know... Waiting on the list has been like nothing I would have ever guessed- the first 2 years, I was constantly waiting for that phone to ring at work, coming home, shopping anywhere- it was horrible but after 2 years the transplant coordinator told me to Live and try and live a normal life.. so that has been a little better.
Janet, I am so sorry about your husband so sick, I am going to pray for him that he can get the transplant soon. I am sorry to that your having pain and not sleeping good, maybe you can borrow my girls they will tire you out then you will sleep good I promise.
I am very proud of myself this morning I took the girls to the play ground in our appartment complex and I wear shorts. Some time I feel like people were stare at me but it was ok. After we came back one of the other moms I see there all the time call me and she said Dana is everything ok are you having more problems with youre leg. I told her no everything is the same just that I wear shorts not slacks. I think she was imbaressed she keep saying I'm so sorry I did'nt realize I'm so sorry. I told her it was ok but after words I start to cry but good thing was Kevins mom came over with pictures from July 4 and like allways she help me to feel better.
I am affraid to get my hopes up but I think we found a nice house that we can afford, its 3 bed rooms 2 bath and all one floor and a nice yard to. Were going to go back Saturday and hopefully put an offer on it. Its only 10 min from here and closer to mom and dad so it will be great if we can get it.