Hi everyone- Hope all is well.... Jan, I was reading what you said about this winter. I, too have felt the cold and it seemed to make the symptoms worse- this year was the worse I have felt with the cold.
I have read that we are more suscepible to the cold and it can bring on PPS symptoms - Cheryl working in the cold gives me chills just thinking about it. I even commented many times to my hubby about it- he has a chronic illness and the cold gets to him also. he used to be an ice fishermen-LOL.
I told him lets move(of course easier said) LOL...years ago the cold did not affect me- or at least I did not notice-HA!!!
Jan- I am glad you are going to the doctors about that choking, please take care of yourself. I can't remember but are you a PC user?
Cheryl- sorry I talked about pain from an EMG - listen to Jan- I had just heard it was painful- but again everybody is different... So hopefully I did not alarm you- didn
t mean to if I did...
Well, got to see what trouble I can get into. LOL. Again Hope everyone is having a great day- sunshine to all.
Hi All, I'm so glad to hear that my symptoms are shared by some of you. It does feel good to talk with my own 'kind' so to speak. I cringe just thinking about working in the cold.
Not much new going on here. I've been down for the past week with my aggravations and today, at least I was well enough to get in the chair and do some things around the house. You know, it sounds crazy but I enjoy cleaning. I like living in a orderly fashion (you guessed it, I'm kind of a control freak). It feels good to have something you can still have some control over. I feel miserable emotionally when I'm having a flare up and get do much. So, my bathroom is sparklin' now (c:
I'm going to lie down now and drop off to sleep. Blessings to you all. Jan
hi janet,jan...oh thats ok janet about the EMG being painful,as you are right,it affects others in differrent ways...there are two types of EMG's jan,one is like you describe,but there's another kind which they insert a needle into the muscle to be tested,which there's pain when they insert this needle,but too,this test is the way more accurate one of the two...dont know which one they're using for me yet...not sure if its the Neurontin working or not janet,or if i just had lighter work days and less work load,did have some pain today after work,but wasnt excrutiating pain,just enough to let me know it was there...i've gotten to where i'm writing down each day how i feel,and where the pain is that day...there are days when the cold gets to me more than other days,and will get kinda aching in my lower leg area as it feels like "cold muscles"...well i woke up and couldnt get back to sleep,so i got up for a bit,and ended up here,lol...so i'm going back to bed now as my EMG is early in the morning,then i got physical therapy in the afternoon,which is gonna interfere with my naptime,lol...glad to see you back again jan,they come and go here,and never know which ones will stay,lol...and most definitely get that checked out with the choking and let us know what you find out too...hope ya'll are doing well too janet...cheryl
Hi Janet, Jan & Cheryl: Hope everyone is doing good! I too suffer a lot in the winter can't take it like I use to. I have also notice that when the pressure is
rising outside it tends to make all my joints hurt. I broke my hip about 33 year ago and now when it is going to rain it hurts until it dose. I had the EMG and they stuck needles in every muscle from my neck to my legs, some time it was painful but not all. I am glad that winter is over for now maybe I can do a little something. Take care everyone and don't over do it, and have a good day. Ronnie
Bless you, Ronnie, for mentioning the barometric pressure thing. I, too, am very susceptible and when the pressure changes, I go into a flare up. That's not so bad in itself but in Washington with such changeable weather, I would say this affects me more than any other thing besides overwork. My body seems to swell up inside and out. Those are the days when I stay in bed, stay warm and move little. It usually doesn't hang on very long but the older I get, the more I notice it.
Today is a sunny day and beautiful. I am blessed to have a big window that faces the street we live on and provides a good view of the weather. We live on a cul-de-sac so there is a moderate amount of traffic. The best thing is right across the street from me, the houses are boarded with large pine trees. I call them the 'giants' but they are wonderful for gauging the wind. I just love them and they have squirrels and a family of deer that kind of roam around eating the roses of the people who have beautiful yards. Our yard is very 'earthy' and not a flower among it so I really love watching the wildlife. I nod my head and sympathize with my neighbors who put in alot of work to keep their yards beautiful.
Thanks for all of your messages. It feels like a family and I look forward to reading what all of you have to say. Jan
Hello all! Sorry I haven't checked in but haven't been feeling the greatest. Just feel sooo tired. Jan I too suffer from the cold and it gets worse every year. This winter was awful and only get really warm in the summer from the waist up. I've said over and over I don't know how you work in that cold Cheryl. Then again people say to me all the time, How do you do what you do. Your house is so clean and you cook all the time. Today I've been cross stitching almost all day and my arthritic fingers are hurting really bad. Always something. I'm having company this week=end from Chattanoga so in the morning I plan on making a soucream poundcake and then tomorrow night I want to make a meat sauce for lasagna on Sunday. I'll probably be crying the blues on Monday. Strawberries are coming in here and there is nothing like a Tennessee Beauty. Take care all. Love yas, Phyllis
hi ya'll...well i had my EMG yesterday,and it wasnt so bad at all...the first part was with the little wires,she'd place them in certain spots,and the second part was with the needle,and even that wasnt so bad neither...he did both legs too...he did say i had no muscle in the lower leg,they've withered away...and he said my back was affected also too,but he said the "old polio" was not coming back on me...he said there were 2 or 3 differrent types of post-polio syndrome and one was the actual polio coming back and i did not know that...he said the nerves looked good,which was the first part of the test,the second part of the test was the muscles...i asked him whats causing all my pain in my upper leg and he said there's probably too much stress on the joints...i had another physical therapy session yesterday,and he thinks i improved a little,not much,but some,which makes him tend to think,this could be beneficial to continue then...i had them fax the results of this EMG to my physiatrist because i see her Monday,and i'll find out the results of the MRI then too...well all the testing is done now at least...well i hope everybody is doing well...cheryl
Hi everyone- Cheryl I am sooo happy you got that behind you and even happier that it did not cause you pain... Sounds like you may have atrophy in that leg(where the muscles waste) pretty normal for PPS- I have it between my left hip and knee(Polio Leg)
I never heard the Polio coming back?? Has anyone else heard this? If it does are we not contagious to others? I read quite a bit so far- not an expert but everything that is happening is the damage the initial Polio did throughout our bodies and not just where we had the Polio???
Anyways good to hear from y'all - and the barometric pressure is another play in our pain.. We get humid here and it also bothers me. Awww- to be in the perfect climate, eh?
Hi Cheryl, and everybody,
I was fascinated by your statement - 'he said there were 2 or 3 different types of post-polio syndrome and one was the actual polio coming back and i did not know that.'
intrigued me so I've been researching that for the last couple of hours.
There ARE two main polio types- one is bulbar which would affect breathing (iron lung people) and spinal, which affects the muscles and mainly limbs.
But in my 20 years of being aware of PPS, I have never heard of different types of pps. Each individual reacts a little differently and if this person really said that it was actually the polio virus coming back, you'll be famous and be in all the medical papers. LOL
It has been my experience in dealing with medical people who have no idea what we are talking about in reference to pps, that they will actually make things up as they talk so as to appear knowledgeable. Especially physical therapists. We simply can't do things the way their other patients do.
I know my body better than they do and I should have known better.
I was so desperate I did what they said-After doing repetitive exercises, the thigh on my good leg spasmed for days and I couldn't put weight on it for 5 days! And that was just a typical response to overusing the muscles that are left.
Gosh, I'd like to know just what exercises they are having you do. Do you mind sharing that?
hi nelda,janet,and everybody else...i kinda thought the same thing,in all the reading i've done so far,nothing says that its the "old polio" actually coming back,been controversies on that i think,where some think its the polio activating again,but was always discarded though...and i too nelda,was looking on computer this morning and found nothing that shows differrent types of PPS...is it because my nerves are ok,is why he determines this,i dont know...this guy is supposed to actually be familiar with PPS too...sooo i will await till Monday when i see my physiatrist and find out just what his report says...i dont have problems with my arms or my good leg,so does this determine i dont have PPS,dont know that either,because from what i've read,its not always the case,butttt it can happen if i keep pushing myself...and even the neurologist said that too...and too,Monday i'll find out the results of the MRI...i had the spinal polio nelda...as to the physical therapy i do,one exercise is putting a ball between my legs and squeeze my legs together...another exercise is laying on my back and let my left leg fall to the side all the way down,to stretch...another exercise is a rubber band around both legs and pull my legs apart...another exercise is putting a ball underneath my left knee and then lift that lower leg up straight,and this is the one that gets me right in the topside of my leg above my knee,which is where i would get muscle spasms,and it really tires out my leg too...and he knows we cant do too much there because of the spastisity there,but its also part of strengthening that area too...and the other exercise is sitting and knees are bent and legs on the floor and i take that leg and move it to the right and then move it to the left,which is supposed to strengthen the hip...dont like that exercise neither as its awkward to do...my weak hip has to do with my knee buckling on me,and he thinks if i strenghten my hip,it will help my knee,and wont lock that knee when i walk...welllllll good luck with that one i say,lol...i dont know if this therapy will help any nelda,but i'm doing it just to say i tried it at least...like he said,we have to try to find a happy medium with these,so they dont tire me out or cause pain...the guy that did my EMG said too much stress on joints is causing my leg pain,sooo what does that mean???...these doctors are in and out and sure dont give you much chance to ask questions,or think of questions to ask ya know...i figure an EMG is going to be accurate on whats going on inside my leg though,and other than no muscles in my lower leg,he didnt say anything about any of my other muscles...or the differrence in my right leg and my left leg...when i get done with these doctors and the tests,i'm going to request a copy of my medical records,so i can read what they've all written and have copies for myself too...today i have some pain,but not excrutiating pain like i've had,just enough to let me know its there,so i dont know if its the Neurontin or just maybe a light work day ya know...and my lower leg has some aching,like cold muscles...even the neurologist didnt think it was post-polio,but still said i cannot do this work much longer or i will lose it everywhere else...so its evidently not going to go away,but will get worse instead...well guys,i hope you're all doing well...cheryl
Cheryl and all,
I do want to comment on what you're going through now in regards to your physical therapy. Been there done that. hahahaha But first a 30 life history capsule on myself.
I'm 60, barely 5 foot tall and half that wide, poilomylitis came to me at age of 2. I laid in a gurney in the hallway of General Hospital in Los Angeles for a few days while the hospital told my folks that it was just the flu. When they realized I was paralyzed from top to bottom, they said, "oops, maybe not."
That's when they said put me away somewhere.
I have a useless right leg and hip area. Wore those horrible metal leg braces with those godawful brown boy's shoes. Hated those.
Went to normal school.
By 7th grade, my knee was buckling every time I took a step and my hand would no longer reach my right knee to keep from falling. Had two ankle fusions-first at Orthpaedic Hospital in Los Angeles. One surgery didn't work, second one did but I have walked with crutches (one or two) since then. March of Dimes paid for the surgeries. Of course two different size feet!
PPS episodes in 1990 and again in 1993 and leveled off. Just a rapid decrease in function and then I leveled off.
Cheryl, watch your good leg because I get quivers or muscle spasms or whatever you want to call them when my left leg is overused. My good leg has been the workhorse for my entire body all these years. And the part that will wear out is your thigh right above the knee because it's been overused to compensate for the rest of your body.
I got the 'lets' strengthen what you have left' but they don't realize I have no muscles to strengthen in my right hip. That's why the limp is so bad with me, not because of the leg length difference.
I don't feel your hip has anything to do with your knee locking. My knee locks too and I can lock my hip too. That freaks people out.
This is what happened to me when doing YOUR same exercises many years ago:
All it was doing was over exercising my 'good' leg. My 'bad' right leg certainly wasn't getting any better because there were no muscles to strengthen like a normal person. There's nothing to work with. So, my good leg did it all, resulting in it being so rubbery and would quiver for days and days.
That's why I had to quit an exercise bike. I could do it but my good leg did the work for both and I was actually damaging the muscles I had left.
Oh, and everyone has 'polio leg' which is usually the really cold one.
So, good luck and next time, write down your questions for the doctor, and when they run for the door, simple say to them, "Excuse me, I'm not done yet with my questions." You must be your own advocate.
Now I shall get off my little soapbox, and go watch Dr. Phil.
Hi friends - Nelda- that is great advise that you have given Cheryl- I am still learning also. We do have to be our own advocates especially when it comes to our health.
When I see a doctor I try and tell them what is happening and read their faces. I can sometimes read their minds I think- so glad I was warned ahead of time- I would be a cry baby at the doctors office- because so many of them just do not know...
Cheryl, we have to learn to listen to our bodies - it is one of the most difficult things that I have encountered and I know many of us are the same way. It really helps when you have a true Polio Doctor but unfortunately there just are not enough of them in this world. When i read the statistics that there are more Polio Survivors in the world and the percentage that now have PPS keeps going up, it shocks the heck out of me. More Polio Survivors than people that have MS, ALS and many other neurogical illnesses combined.
Cheryl just keep learning as much as you can- the info. is out there-listen to your own body and if these exercises are causing more pain or fatigue- stop.. Don't feel you owe an excuse to the doctors and therapists- It is your body not theirs- and once we lose it- there just is no way to get it back- sigh...
Hugs to all Janet (I go back to PT Monday- I am doing very little - only mainly stretches...)
Neldalee isn't it amazing how each one of us is different but in ways are so much alike. I too had all my surgeries paid for by the March of Dimes, and I too wore the godawful brown boy shoes. Even now I love to look at shoe catalogs wishing I had pretty petite feet and could wear high heels. Dream on Phyllis. My daughter says my feet look like a frogs. lol Good that we can laugh about it. Wish I had the energy of a frog. Yes so many Drs. are so ignorant but I guess their human too but hey, say to us I really don't know. Don't make up stuff as you go. Going to turn in now. Hope all you lovely pps ladies have a great Mothers Day week-end and all you fellows too. Love ya, Phyllis
YAY! I, too, am glad there wasn't a significant amount of pain. Good news about the results too. As far as the PPS goes, I have never heard there were 2 kinds.
Because I'm an old cynic, I have no basis of fact for the re-surfacing. It makes good sense that the old things are wearing out because they told us to work and work so other neurons, muscles and whatever else, would take over. That was true, but it was carried too far and that's a big reason, in my opinion, that we're overachievers. In overachieving, we hastened the breakdown process. I don't think there is any reason to be afraid of being contagious because we've been around long enough now for some research to be done and I have never seen that we would end up being contagious again.
Jeez, I just went back and read all the other responses and they've already said it all to you except for 2 things that are my own thoughts. 1) I believe PPS can be summed up in 2 words.....accelerated aging! We have had more surgeries than most people but the bottom line is that we're aging early. 2) I have a family doc that I love because he listens to me and we are a team and as far as my treatment we have agreed at this point to just keeping comfortable and putting out the regular fires that have nothing to do with PPS such as, yeast infections, etc. If there were a specialist here that I could have the same kind of repoire with, I might change but only if he knew more than my guy. I just keep my doc educated on whatever is going on in research at the time so if we get stumped, we look to the files. I'm just saying this because you can have a good repoire with someone who is willing and eager to do what is best for you and doesn't have the ego that only he/she can help you and no one else.
Nelda, way to go. I was Easter Seal Girl in 1960 and 61 of Fresno, California. I met Jimmy Durante, Sonny King and Nat King Cole. I caught polio when I was 2 in 1954. My parents were alcoholics and my father was supposed to be watching me but was passed out on the couch so I crawled outside and began drinking out of puddles. I got flu-like symptoms so my mom took me to the doc and he said I had the flu. Mom took me home and she said within the hour I would scream if anything touched me at all. The polio destroyed my left leg and partially destroyed the right. My mom took me to the ER and when the doc came in the door and saw me, he took me into the hospital STAT and that's where I stayed for 3 months. The doctors now tell me that my arms were also effected, but I didn't feel it. I would put my knees on the trike, lay my chest on the seat and peddle with my hands as fast as I could go around the slick and very straight hospital corridors. No nurse was safe LOL! Also, my mom would put frilly underwear on that had each day of the week embroidered so the first thing the nurses would do would turn me pizzle end up to see if I had the correct day on my undies. Ah, the joys of babyhood.
I remember being put on an iron with a lady named Carol. I would lay by her head so we could look at each other in the mirror. Also, when they would take Carol out of the lung they'd put her on a rocking bed and I got to do that too. Fabulous. My mother found out many years ago that Carol actually married and had kids, which I cannot fathom but that just goes to show you, we will live our lives with purpose and gratefulness. Also, I remember the dr/nurse putting pads on my legs and turning on the electricity to try and stimulate my muscles to move. It felt like and electrical shock that caused my muscles to move very slowly...kind of like crawling under my skin but it didn't do any good. I remember the smell of damp wool and the only other time I remember smelling it was when I was working at the hospital and I was wheeling past the OR door and it hit me strong. Quite an emotional moment for me.
I need to go to bed now. My son and I are going to drive to Oregon on Friday on my first road trip in 9 years so I'm babying myself so I'll be up to the challenge. xoxoxox Jan
hi ya'll...ya know,i sure wish i could remember that well about my polio days like ya'll do,i only remember being in the hospital for the two foot surgeries i had,and i had to be 9 years old before they could do those,and i do remember having to wear a brace too...but my mom said i was also in a brace at age 3 and she could only take it off for one hour a day,and had to wear it the rest of the time,then a time i didnt have to wear it,and then was back in a brace again at age 5,but i dont remember those times though...i do remember wearing a brace when i was much older,but dont remember how long i wore it that time neither...i remember wearing oxford shoes with brace...my mom said when i was little,i had the brace that attached to both shoes,but when i was older i remember the brace being a leg brace on just my bad leg...
when i do these exercises at physical therapy nelda,we dont do any on my good leg,its just the bad leg we work with...when i first found out about PPS,i did read how we can lose muscles on our good side,and i thought then,that i hadnt had that happen so far as i've not noticed any weakness in my good leg,but saw how that could happen as we do use our good side to compensate for that,as i do use my good leg for any strength i need to use...
i've noticed how i use my arm to actually help pull myself up stairs,and most usually i take one step at a time when i do go up or down stairs,but thats because my bad foot is stiff and dont bend neither...sooo if i dont have any muscles in my lower leg,would that not cause the upper leg to weaken in time,and put "stress" on the upper leg??...when i'm on that bicycle,i do tend to use my good leg to turn those pedals,but try to catch myself and try to use that bad leg to push those pedals,but its just natural for me to use that good leg to push those pedals though too...at times,when i'm having to use my legs to climb stairs,i do notice lately a "strained" feeling right on the topside just above my knee...i've never had to pay so much attention to my body before now ya know,so i may not have noticed certain things before...
so now,i write everything down...
it seems i always remember things that i forgot to mention to the doctor,AFTER i leave the doctor's office,or thought of questions i should have asked,and this is why i like my daughter going with me to doctor's because she is familiar in medical stuff,and she knows what questions to ask,but she hasnt been able to come to any appts. with me since i started this process though...i have written down things to mention to the neurologist that i forgot to mention,for the next time i see her,but i dont see her again for 3 months though...but she's the one that says i cant do this work i do much longer,and will support me if its disability i need to go on...hey if there's any questions you can think of for me to ask my Physiatrist
i'm sure open to hear them,because i see her Monday...and my physical therapist thinks if we strenghten what he's intending to strenghten,that it will help with my balance,i done told him i've never had balance,and i dont see how he can help with that actually...with my bad foot,it turns on me when i walk in the grass,which then causes me to lose balance...somebody can give me a little shove,and i can go flying across the room,soooo where does he think he can help with my balance,is beyond me...and too,how can he say i've improved a little on my "strength" when i've only had three visits so far,anddd its not like i do these at home much neither,because i've done them maybe 3 times at home so far...so i question that myself...well guys i hope ya'll are doing good...cheryl