Hi hope you are well: I read about you and working from home and I say anything that will help end the physical stress on your body is good. But even as I sit for a while it to is trying. It is not as hard to get disability with pps now as it was when I was going through it. I had to get all my paper work from warm springs where I went as a child and from the Dr. that did all my surgurys. I was truned down 3 time before I could have a hearing before a judge. Now pps is one of the most recognized disabilities by SSA. all it takes is a Dr. who is willing to go on record that you do have pps. Now not all of them are willing, after Shepherd Spinial Center stoped me from working and even had it down on paper they still would not fill out the paper work to get mine started. I had a good laywer who called the judge that was to hear my case and told them that Shepherd would not fill out the papers needed, and so the judge had an appointment made for me with another clinic the the SSA uses. Thought I was in trouble for sure he did not examine me at all. Read the paper work from Shepherds looked at me an said how in the h--- do they expect you to live. This dr. put so many restriction on me because of the polio that i had no problem after that. So do what you can and don't feel ashame about disability because everone of us that have worked all our lives just like you have paid into it.( PRYS) polio remember your systoms. Ronnie
hi ronnie...just got home from work,and the way i feel and the pain,i would about go on disability today if i could...that explains why none of my doctors so far have not even mentioned the possibility of going on disability,they evidently dont want to go on record...so even have your doctors diagnosed you with PPS and stopped you from working,you still had to get a lawyer to get disability...see,i dont want to have to go thru all that cuz i couldnt afford no lawyer,and once i stop working,i cant go thru all these denials and appeals and be able to live ya know...and i'm really not sure i could handle working anddd go to school,to get a job to work at home,not sure my mentality would be there,and the physical ability too,so then i waste time and money on that...i spent two and a half hours waiting on the doctor the other day,and was wore out when i left there even...like you,and a lot of people here,i too will probably have to go thru a series of doctors just to get diagnosed and treated on this...this Dr.Bruno deals with getting people put on disability with no lawyer needed,so i just about need to make a trip to him when i'm able to...but he too will evaluate and come up with a treatment plan also...i am in so much pain today that i could barely walk out of my store...i hope this physiatrist is able to help me tuesday,or i dont know how long i will make it this way...so ya know,my body may be the one that tells me i cant do it no more,not me...i've got my old medical records from the military that shows i had polio,and the two surgeries i had then,and then would have to track down other medical records in the past twelve years for the surgeries on bone growths i've had on that foot,and then now with the problems i'm having now...if i had known about this PPS beforehand,i coulda seen this coming before i got this far...well i hope you're doing well...thanx for your insight ronnie...cheryl
Cheryl- If you only could go see Dr. Bruno and get dx'd he would be the one to get your disability for you. Post Polio is recgonized my the SSA- Dr. Brruno would even work with your reg. Doctors- they have an entire team at this facility- remember it may take a couple of months to get into see them at the Post Polio Institute- I would call now and make arrangements- the exam and all is about 4-5 hours- the facility is a very nice hospital- Everyone there is exceptional- there is nothing they have not seen or heard- and they know- I believe you spend about 1-1/2 hours with Dr. Bruno and then see a PT doctor and then a Physiatrist.
All I can say Cheryl, as I have stated Please do not wait until you cannot move- this is serious business. Once you have lost it, there is no getting back..
good morning ronnie and janet...i was looking to see what a Physiatrist does for post polio on the computer this morning,and you too Janet mentioned one in your post at Dr. Bruno's Institute,so maybe i shouldnt be apprehensive then on seeing this one tuesday,and just maybe this last orthopedic doctor is doing the right thing then sending me to one...when he mentioned a physiatrist,i'm thinking physical therapy and strenuous exercise to build up muscles...at least this orthopedic doctor is doing something,cuz my primary care doctor sure didnt suggest going to a physiatrist and a neurologist...i am curious to see a neurologist as i've never seen one since i was a child,to see what he comes up with...and you're right janet,i do need to get out there to see Dr. Bruno as soon as i can,and after yesterday and the pain i was in,i'm about getting to that point too...i dont know what i'm thinking,thinking i can work with this kinda pain for long...i cant...and its going to be another bad day for me today too,just because i dont feel like i've recouped from yesterday yet...but its time for me to get to work now...hope you're all doing well...cheryl
Hi Cheryl- I am just trying to save you steps- Now be ready, because even though a Physiatrist should be the best for a PPS doctor there are still some that are not. I had happened to go to one before I had seen Dr. Bruno- It was sad, he made me think I was nuts. Told both my husband and I, he had heard of PPS but that I probably knew more than he did, including Polio- So beware and ready.
Do you realize the Physiatrists actually started in the 40's- mainly do to Polio-this is what flips me out... To me all Physiatrists should know Polio and absolutely trained for PPS. We are the main reason what started this type of doctor....
Please just beware- don't let happen to you what happened to me, I walked out of his office just wanting to cry.
Hi Cheryl: Janet is right on about some physiatist saw some at Shepherds ant they tryed to tell all my pain was in my head. It was by the time I left their office head ache lol from all that mombo jombo thay try to make us believe. I know AI told the last one I saw my leg pain and back pain were real not in my head but in my body. I told him the only pain I had in my head was him and I knew how to stop that one and I did just that. Like Janet said beware of some. And don't let them try to tell you the pain is in your head, if they could sell that we all would be cured. any way good luck and remember we are with ya. Ronnie
wow janet and ronnie,i'm sure glad you told me this because i will be aware of it now...how can they think this pain is in our heads,because i'd give them this pain if i could,and then tell me i imagine it...man i sure hope this one wont be like that cuz i am wore down now,just trying to find a doctor to help me...like i told the orthopedic doctor,i'm in a hurry now for this pain to stop...this Neurotin is not working neither,and dont know whether to just stop taking it,or keep on taking it and try increasing the dosage...i see the Physiatrist tomorrow morning so i dont have long to wait to find out if he's gonna help or not,and i will let you know how it turns out...the orthopedic doctor did write out a prescription for a short leg brace to go in my shoe,for after i see the physiatrist...but he said i wont want a full leg brace and wont like it at all,but what makes him think any of us want to end up back in a brace again anyway...so janet,when you saw this Physiatrist at Dr. Bruno's,what was it he did for you,so i'll kinda know if this one is doing right?...evidently these Physiatrists are part of our post-polio,so this orthopedic doctor sending me to one,is on the right track?,because my primary care doctor did nothing like that or even mentioned it...and the orthopedic doctor is sending me to a neurologist too,but that will probably take a few weeks to get in...i'm sure glad i got ya'll here to help me with this process...well i hope you're all doing well...cheryl
Cheryl - They did everything and measured everything on my body from the neck down- did strength tests on me, endurance tests- all I can say is I have not had tests down on me since I had Polio at age 4- It brought back memories. Very extensive- the Physiatrist checks out areas where you tell him the pain is- They had me laying on a table, standing and sitting - What the physiatrist at Bruno's didn't do the PT picked up and did...
When I went to this first goofball- he did just a couple of tests with my hands and hit the reflexes with that hammer- that was it- 2 seconds- so please beware, play him out and see what he can tell You about PPS first- if he hesitates or laughs or you just don't feel he know and believes- walk out...
i sure do appreciate you telling me so now i'll know what to watch for,and i will do like you said too and ask him what he can tell me about PPS first,and watch him closely...i really hope this one isnt a goofball...so janet,did you ever see a Neurologist also on this? and if so,what will they do?...did you feel better after seeing the Physiatrist at Dr. Bruno's?...do you still see one?...i know now what Dr. Bruno meant when he said i needed to see a Rehabilitation doctor,he meant a Physiatrist,as i have found in reading on the internet thats what they're called too...i really appreciate your time in answering my questions janet,as i cant always seem to think of the right questions to ask when i do see a doctor,and always liked my daughter going with me cuz she would know what to ask...but she hasnt been with me to these doctors...thanx again janet and hope you're doing good yourself...cheryl
Hi Cheryl - We are glad we can help(at least I hope it helps) It is difficult enought on our emotions, than to get some uncaring person well not good. I have not seen an actual Neurologist- don't think I really need to at this time. But I did recently have a MRI done of my back, my reg. MD wrote the script for this- and now I have to see a Neuro Surgeon(But I already know I will not have any surgeries) maybe shots for my back. Also having the MRi notes sent to Dr. Bruno so the Physiatrist there can look at them. There just are not people around here to be able to trust when it comes to PPS..
I also have to have some x-rays(which I have blown off) but going tomorrow of my left hip and more back- that fall I had in Feb. I think put more hurtin' on me-
But I am tough as you are and we all are. Good luck, ask any questions please cause someone will know how to answer. We all go through some of the same things and some not- some of us progress faster and some may not- I look at it this way, it is not a death sentence- just wake up call and God is telling us to Stop, Listen and Live.
PS - I am not seeing a Physiatrist at this time.
hi janet,ronnie,phyllis...i just got back from seeing the Physiatrist,and guess what,she thinks i got Post-Polio Syndrome,like duhhh i knew that,lol...but she did test my strength in my legs,and had me walk for her,and she did ask a lot of questions,so i wasnt just in and out with her...she's having me get an MRI done,and going to physical therapy too,but that one will be hard to do after work,beings i'm wore out by then,and i only get one day off at work too,so might be some home therapy i can do then...but hey,its a start,and is now down on record,but still she said nothing about disability,was more like maybe i need to change jobs or cut back on hours...and my daughter is really pushing this school on me to work at home,because she says i really dont want to go on disability because she sees these people at the hospital that come in on disability and its not easy on them...but i just dont know if i can handle working,and try to do school too after,and i sure couldnt let my job know i was looking at changing jobs...i've heard a few times from people they say you'd make more money on disability than working,but yet she disagrees with that...so i dont know what to do,but for now i got to work anyway...i guess for now i'll increase the Neurotin and see if that helps more,if not,then i'll go back to my doctor and let him know...does this physical therapy help you feel better since you all have been there already?...well i'm going to vegetate for the rest of my day,and now will have to work longer to get to my next day off...hope everybody is good...cheryl
Cheryl- I am happy you found a Physiatrist that Knows..... Thank God for that- but as far as SSD/ you may have to talk to Dr. Bruno and see if he can help you do it on your own.. You have the diagnose now.. Maybe this doctor can get you out on STD while you get this sorted out. She already mentioned job change or less hours... You can also be on SSD and go back to college/ but I would wait awhile on college.
Let your doctor know your worst days, lifting, walking, difficulty in driving even dressing yourself- give Her your worst day.. The lack of concentration.
I knew you had PPS, as you did in your heart... You need rest and worrying about working is not going to get you there. Not only physical activities bring on PPS symptoms but 'Mental Stress' is also bad.
hi janet...got the neurologist appt. for the first of may,think i need a durn calendar for all these appts. now...and still i go to work and living with this pain till i see this physical therapist next week...told the orthopedic doctor's nurse to please tell him thank you for helping me and was pleased with the physiatrist he referred me to...i told this Physiatrist,that i would schedule my next appt. with her on a work day,so she could see me at my worst,and would see a differrence in my walking then too,and she thought that was a good idea too...wanted to do that today but my boss suggested i just change days off this week,instead of working half days with no day off...i go back to the Physiatrist in 4 weeks,after i've had some physical therapy to let her know how thats working for me...so yes you're right janet,let her see me at my worst for sure...she also thought i didnt need a leg brace at this time,as its more for those who have a more severe polio limp,and would maybe hinder me,in that i would depend on it and would weaken muscles more...as to the short leg brace,we're leaving that open till after i do physical therapy,but she really didnt think i'd need that,in that my knee only periodically gives out right now,and is more for those who have that drop foot,whereas i had that triple arthrodesis and my foot is stablized...and i'm not saying i need a brace,but without those orthotic shoe inserts,then i am likely to get more bone growths on the bottom of my foot,from the way i walk on that foot,so i think i need to talk to her some more about that...and i had to stop using the last orthotic inserts because they caused me problems...i do think too janet,when it comes to being put on disability,i'll have to go see dr. bruno for that...and i didnt know you could be on disability and still go to school,so thank you for telling me that...if i dont do this with my daughter though,i wont do it at all,and she's ready to do this soon,so if i do this,its going to be a hard on me i know...well i hope everybody is doing well...cheryl
Cheryl sweetie - Just don't push more on yourself right now.. You don't need the stress of working and trying to go to school to learn new skills. If you get on SSD - you not only can go to school you may be able to down the road work some from home... They allow you to make so much money(not sure what the $$) is but do be careful here.
I don't want to sound like I am telling you what to do- right now I imagine your mind is spinning and you feel lost. I know, I think we all do. Just take one step at a time. I do believe you should be out on disability and rest your body, take care of yourself now.
There are days, I have cannot do the laundry, even do dishes. Some days I can do both but it seems if I try and get it all done like I used to - I pay for it.
Wearing a brace does not make your muscles weaker- it should help them and most important help to prevent falling. I had that polio limp - I think all my life of course the more I did- walking and standing the worse it got. I had also the drop foot. So I wear AFO's on both legs- short braces but boy do I notice the difference- the crutches were what I had a hard time using- I never had them with the initital Polio- like trying to teach an old dog new tricks LOL..
When you go to PT- please also be careful- you already have weakened - tired muscles- just make sure your PT also knows PPS. Just some more advice..
Just remember if what ever you are doing causes 'Pain, fatigue or weakness" - Stop either do not do it or do less of it.. Only you know your body.
Hi everyone! Cheryl you tire me out just reading what your days are like and Janet you are so right about us all being affected differently. Physical therapy is definately a no no for me. My muscles are shot and nothing will bring any strength back. Lots of people don't understand about us saying if it causes pain or weakness or fatigue just don't do it. Now at the age of 60 I know that is so true. We all push ourselves to some degree but I have really slowed down. I've had over 20 surgeries and had PT with almost everyone of them. Right or wrong I'm still in bad shape but keep on trucking. I love life and will fight til the end. I know it is mentally hard on you Cheryl. I have been drawing my SSD for 35 yrs. so I can't imagine struggling about work. I really do feel for you. Don't get me wrong, I miss being out in the public. I did bank work and accounts receivable but on my bad days I don't think I could even get dressed much less do hair and make-up. Oh I wish we were all filthy rich and could go on a nice vacation and meet one another. I think its time for me to go to bed and dream about that.lol Love you all, Phyllis