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Old 02-06-2008, 01:14 PM   #1
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Hi, I had polio when I was an infant. Always had some difficulty keeping up with the rest of the neighborhood kids but I managed. In later years I began to have more leg problems and weakness and was diagnosed with PPS.
I am going for an evaluation next week since the weakness and fatigue are more pronounced lately.

I just lost my husband to ALS. Fortunately, I was able to care for him....I got tired but I managed. Nothing I have comes even close to what he suffered but in the early days he finally realized what I had been going through re: weakness and tiredness.

 
Old 02-07-2008, 07:06 PM   #2
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Welcome to this board. I am so sorry to hear about your husband, my prayers go out to you...

There are so many of us PPSers, I was only dx'd last year- even though I had been having problems- I just did not know about this PPS.. Until I hit rock bottom. We are all in this together, so never feel alone...

Again, happy to see you found this board and hope you can get some relief from PPS.

Janet

 
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Old 02-08-2008, 02:11 AM   #3
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yea,listen to this woman,Janet,cuz she's been of help for me,and i am new to this board myself actually...and just since i've been here,janet has helped me,and i want to thank you janet for suggesting i contact this Dr. Bruno,because thats what i did,and he's been getting back to me,and i am actually closer to possibly getting out there to see him...i have also ordered two of his books too and looking forward to reading them...cheryl

 
Old 02-08-2008, 06:53 PM   #4
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Cheryl - I am so happy you have had contact with Dr. Bruno- he truly is a Godsend for us Polio Folk... Listen to him, he knows so much about Polio and PPS- You will enjoy his book- easy to read and understand and this guy really really cares....

Hugs and again glad you are finding your way- it will be hard- but know you are NOT alone in this at ALL..

Janet

 
Old 02-09-2008, 06:03 AM   #5
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hi janet..i got one of dr. bruno's books just yesterday and have already started reading it,and at times,i feel like i'm reading about myself...and to actually have a doctor respond to emails and questions,is just absolutely amazing to me..he said he'd accept my insurance if he wasnt a provider of mine,and then he told me about this Angel Flight,so there's a chance for me getting there then..so i'm looking into this..i am so relieved that i finally heard about this PPS,and would stillll be in the dark about this,had i not started listening to my body,instead of shrugging it off like i have been,and just contributing it all to my job and getting old...i just finally started putting all my symptoms together,and asking myself,why am i now feeling this,and then wondered,how will i be ten years or so from now??..and once i started finding all this on PPS,i had symtoms i didnt even realize that were a part of this PPS...the most obvious,being the foot pain,leg tiring out more,and foot surgeries i've been having in the past eleven years,i never ever thought that this "fatigue" could be related...i'd always just say,my job just takes everything out of me anymore,but yet deep down,i'm wondering why now cuz i've done this job for 19 years now??...also in reading on this PPS,says we should avoid the "cold",and in a meat department,i work in the "cold",so am wondering if this is whats maybe contributing to this PPS now?...

to newbie: you mentioned being diagnosed with PPS,how did you go about being diagnosed,where did you start?..i live in kansas city area and cant find anybody,and with Janet's help,she directed me to Dr. Bruno...

to janet: i know you mentioned hitting rock bottom,but how did you come to being diagnosed?...again,i just cant thank you enough for being here to help me...cheryl

 
Old 02-09-2008, 07:32 PM   #6
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to janet: i know you mentioned hitting rock bottom,but how did you come to being diagnosed?...

Cheryl - I think it was being on a support board, not sure what was going on- my reg. MD took me out of work and I was on short term disab. - Things got worse as time went on and I thought I may have had FMS(Fibromylgia) then somehow I heard about PPS- anyways my reg. md thought maybe I had FMS and I was not totally sure- last year I made the trip and Dr. Bruno diagnosed me with PPS- I am now on SSD and trying to learn how to take care of "myself" no one else can do this, it is our bodies.

After reading so much about PPS, it surely does hit home doesn't it? How we blew things off, different pains and fatique even the weakness.. It seemed the last few years of doing my job, same work I had done for 20- I was feeling more exhausted and my brain was more in a fog. Brain fog is another PPS thing.

Girl the cold alone can bring on PPS symptoms- you would be amazed- so again good luck to you and learn what you can about PPS and how to take care of yourself- If you have to go on SSD, well you have to- or change jobs, etc. Pace yourself and don't do things that cause pain, weakness or fatigue or do less of them.

It is a very hard road, like wow- we have to go through this now - after being normal or almost normal and doing anything we put our minds to - keeping up or surpassing our commrades- but we must take care and that is a 'real' thing.

Hugs Janet (I hope you can get to see Dr. Bruno- the entire team was wonderful- )

 
Old 02-10-2008, 02:31 AM   #7
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hi janet...what kind of work did you do when you had to go on disability?..how long did it take for the evaluation there for you?...i am not sure i understand what this "brain fog" is cuz i did see that as a symptom too..is it the same as lack of attention?..i was thinking that didnt apply to me,yet anyway,till i started thinking about it more,then started remembering that i could be watching the news,and interested in what was being said,then all of a sudden it was like i missed part of what was said,cuz somewhere my mind just strayed off,and too i have to read sentences over and over at times,but contributed it to old age ya know...and you're right,its US that have to take care of ourselves from what i've been reading,and at the same time am thinking,how can i do this,if i still have to work,when working in the cold and walking on my feet all day,is just not helping me at all,and going to get worse??...and as long as i'm on my feet,i am going to have more of those bone growths develop and more foot surgeries for that...you were already at rock bottom when you went to dr. bruno,so i dont think i'm as far along as you were,so it might be that they dont think i'm ready for disability yet??..but too,with the job i do,is just going to progress it too i'm thinking...also i read that trauma can bring on PPS too,and about 3 1/2 yrs. ago,i was in a car accident,was off work for 5 months from it,and about that time though when i did go back to work,i went from a small meat shop,to a very busy larger meat shop,which meant more work,more fast paced,so i have contributed this fatigue to being in a bigger shop ya know,not sure i could contribute this to that accident...how far did you have to travel to see dr. bruno?...but yes in doing all this reading on PPS,i have come to realize things i just shrugged off,or contributed to other things...i get achiness up in my shoulder and arm,but i lost a disc in my neck from my work back in 2000,and contribute it to that,but maybe thats not the case now though...my old medical file has me down as paralytic polio and never knew that before now neither...

 
Old 02-10-2008, 11:37 AM   #8
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Cheryl- Hi, "Brain Fog" is about poor concentration, word finding(ex: How many times have you started a sentence and could not come up with that word to finish??- I used to have other people finish for me- and that seemed to happen alot)

I was a Customer Service rep. for Industries- so constantly on the phones and computer- I had my own accounts to take care of and delt with sales, accounting and production- Can't forget the customers(HA) - but very stressful and seemingly got worse the last few years. Before that I worked in production and had down bull work at some of the jobs..

When I went to see Dr. Bruno, I had other PPSers already telling me I had PPS- so I was pretty much sure this is what I had- but Dr. Bruno and his team confirmed it. They were wonderful, he is a very caring man and so good about getting back to you...

I do think from what you have gone through has brought on PPS, I am not an expert- between the accident, and the type of work you do- surely has had alot to do with your symptoms.

I live in NYS- between Buffalo and Rochester- I made the trip alone(took the train since the fear of flying is horrible) I am married to a wonderful man of over 26 years whom I care for also- He has been on an organ transplant list for over 4 years now. Long wait- and has other problems that go along with illness.. We take care of each other... So I have to stay as strong as I can in case that call does ever come...

The best to you, get that diagnose- and learn how to wind down - I was orginally taken out of work for depression, anxiety attacks and problems with that women thing back in 2005 -mentally I hit bottom and came slowly back then physically I hit it after trying to go back to school to try and learn another trade- I could not do it- That I believe was my awakening...

Hugs to You PS Which book did you get? I have "The Polio Paradox" and call it my PPS bible. Janet

 
Old 02-11-2008, 02:54 AM   #9
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hi janet...wow i am so sorry to hear about your husband,then your deal on top of all that too..how long were you there when you got diagnosed?..did they do any tests on you to determine PPS?..i'm not sure "brain fog" applys to me yet,but yes there are times i start a sentence and cant finish,but not noticed that happening much,and just contributed that to old age again too,but now you'll have me paying more attention to that now,lol...i notice more that i have to read a sentence several times over though,and can be looking right at the tv,and never even hear a word cuz my mind is "elsewhere"...in reading my old medical file,there was a comment made that there was a "wasting away" of the entire leg,and have heard this term more in all the reading i've been doing lately...i have "babied" that foot and my leg all my life...its odd that a car accident could bring on PPS,but its all been after that,that i've been having troubles,but think too,a lot of it is my job i do...i am trying to become a meatcutter now too,and these guys are going to put me to the limits too,doing all the lifting they do,so thats going to wear me down faster i think too...did you go thru dr. bruno to get your disability and how long did that take you to get it?...i figured it would be best to go thru him,when that time comes,as he's the one who got this PPS included in...i got the Polio Paradox-What You Need To Know,but also ordered the other book too,but was not available yet,so am waiting on that to be shipped out to me...do i need to take my old medical file that shows my polio and surgeries i had with me when i go out there,or do they even take time to read that??...i do wind down once i get home from work,so much that i'm a couch potato anymore,as my foot hurts so much to walk on...i've got 18 yrs. with my company and know that i'm going to try to make it another two years,to also help raise up my disability,and try to prepare in that time for the time i cant do it no more...hugs right back at ya janet and thanx for being here for me,wouldnt have come this far without you...

 
Old 02-11-2008, 01:15 PM   #10
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Cheryl - Life goes on, so we both here have a new road to follow. Got to remain positive and keep on goin'... First you will need to rule out illnesses/diseases that are similiar to PPS- there is no Real way to tell you have PPS- as far as tests go. It is a ruling out of other illnesses. I had the blood tests done here(paid out of pocket- I had no insurance at the time)- then I made the appt with them and also had x-rays of my back that were done(another out- of pocket for me-Agghhh!!)

So not sure if you will have the tests done there - I believe you said you have insurance- correct?

Sounds like when you talk about wasting that is muscle atrophy??? I also have that in my left side- actually the quad- which is between my hip and knee... So some of those muscles are gone.. There is at this time no way to get those back- also note be Very careful with exercise like do not think you can get on a treadmill and correct this- I have special stretches they gave me for my legs, back and shoulders(neck)

Again, if you can get there please do- get that diagnose and learn to take care of yourself.. It is so important and the most important to us is 'save our arms' - that is Our indepedence...

Hugs Janet

 
Old 02-12-2008, 02:40 AM   #11
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hi janet...i saw that word atrophy in my old medical file too...actually its between my hip and knee where i feel the "weakness" when i tire out,and is where that weakness has been the last few weeks and wasnt going away even when i was home and rested up...now when i try to do something using that leg,i can get the muscle spasms on the top side of my leg above my knee,and in the calf area,but thats when i'm really straining it...but like just a few days ago,was resting on the recliner and the top of my leg went into a spasm fit for no reason,didnt last but a few seconds,but am trying to keep track of how often that happens now...so i know exercise isnt going to be good for me...so what kind of stretches do you do?...yea i do have insurance so that will help,but heck,i'll have to keep working just to pay off doctor bills on this,lol..do you have to pay everything up front when you go thru the evaluation and testing?...i am allowed one free physical a year i believe with my insurance company,so i'm going to get a physical done first here,assuming they'll do what dr.bruno's team would do??...i know dr.bruno said he could schedule me in march around that Angel Flight if need be,but i think thats too soon for me to get prepared for a trip out there...might be a couple months before i get out there,and i asked if my daughter could come with me cuz she pretty much helps me get around and understands all this medical stuff that i dont understand...so she'll be going with me when i go...and when i get this physical done,i'll get a referral from the doctor at the same time,to see dr. bruno...my boss has mentioned to me several times on how much he depends on me,so then i start feeling guilty and think maybe i should hang in there,cuz i havent mentioned to him all this going on with me...but,i'm wearing down though...

 
Old 02-12-2008, 02:02 PM   #12
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my boss has mentioned to me several times on how much he depends on me,so then i start feeling guilty and think maybe i should hang in there

Cheryl- You have to take care of yourself- don't feel guilty(easier to say than do) - I would get your trip scheduled, talk to dr. Bruno and see what things you may be able to get done here(they had me do some blood work) - I know it will be a long trip for you and I am so happy you will be going with someone. It surely will help- I was alone, my older sis wanted me to wait until she had vacation but my husband wanted me to go asap.. So I went sooner.

I truly understand about the spasms, I get them in my good leg if I walked alot, etc. I started getting them when I was in my 30's but blew it off. I also get spasms in my neck and shoulders so I take Muscle relaxers when it gets bad.. they make me tired so I try and do that at night.... The cold has alot to do with bringing on symptoms so again work is not helping you.

I only wish you luck and get that appt. scheduled, get dx'd and take care of your bod... There is not a day that goes by when I do not feel guilt- but then I re-group the ole mind and realize I could not work- there are days just getting dressed can be difficult - cause you never know where and when PPS will strike- yes, it stinks but we are Survivors - we survived the initial virus and now we surely can get through this.. It is just so great that there are so many to help us... Remember you are not alone- that is so important..

Hugs to yah Janet (Maybe the Polio Institute can help you with some of the costs) check into it, ok?

 
Old 02-12-2008, 06:29 PM   #13
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hi janet...i have never known anybody thru my life who had polio,so there was never anybody to talk to about it,or relate to with things we went thru ya know,and basically i think i denied it all my life too,not even people i worked with for years ever knew i had had polio...people would ask me why i'm limping,and i'd just say i had foot surgery...i just didnt talk about "polio"...and since finding out about PPS,i have just been amazed at all the people out there with it...i have always been self-conscious about my limp,and have had others mimic my limp,and i wanted to rip them apart,but instead i laugh it off...sometimes people just dont think,ya know...as i've gotten older,my limp is more pronounced,as my leg is wearing down i think...you are right though,that my job is not helping me anymore...actually when i first started questioning as to how i'd feel ten years from now,i thought the worst i'd find,would be that i'd get osteoporosis at an earlier age,and would always have foot pain cuz i've had that for years to an extent,only now its so much more painful that i need a cane...working in the cold will cause arthritis earlier than most too,and figured maybe thats the pain in my foot now...i need to stop making excuses for symptoms and shrugging things off now that i've found out,theres a cause for it...when i read that we should avoid the "cold",my mouth just dropped cuz i work in the cold,so how good could that be for me then...i'm going to call my insurance company in the morning to find out what my coverage is on this,see if i need a referral,and go from there then...i take it you still have bad days at times even though you manage your PPS more now??...you have been my support group janet and sure am glad i met you too...i sincerely hope you and your husband well...

 
Old 02-13-2008, 09:13 PM   #14
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Hi everyone, especially Cheryl and Janet. Have posted before but no one answered but have been catching up lately and couldn't stand not putting my two cents in. Janet, you're amazing and seem to be taking the advice we all know but hardheaded and that type A personality keeps us from really preserving our bodies like we should. I think I'm older than a lot of you. I will be 60 in July and had polio at 11 months. Its been a hard road but here I am in my electric Jazzie chair still making up a king size bed and mopping my kitchen (from the chair) and cooking like its my last meal. Cheryl, please slow down and get out of that cooler. It makes me hurt just thinking about being in the cold like that everyday. We are people pleasers I know but its about to get me! I find my self laying down for an hour or so a couple times a week. Something I never would have thought about before. My circulation is so bad and I stay cold all the time. Does anyone know if these electric throws are ok to use. That and a hot soak in the tub is the only thing that takes my pain away. With me its my knees and slowly is getting my back. Hope to hear from someone soon, Phyllis

 
Old 02-14-2008, 02:26 AM   #15
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hi Phyllis,and yes Janet is just awesome too i think...in the wintertime,i feel like i never get warm cuz of working in the cold...and yea i know its not doing me any good,but they neeeed me...it is also hard on my back with the heavy lifting i do,and you should use your legs to lift,but how do you do that when really you only have one good leg ya know...dont really have pain in my knee,but my knee tends to give out a lot more than it ever used to before...i have taken several falls at work in the past 3 years because i have no balance,and have been lucky so far to not hurt myself real bad...one guy just kinda gave me a shove and i went flying across the room,cuz they just dont realize when they do things like that...i dont know if them electric throws work as i've never tried them,but if you do try it,let me know if they're good ok...well its time to get to work,and will get back to you again...cheryl

 
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