New to the board. Had polio in 1948 at ll months. Affected both feet and legs. I have had over 20 surgeries over the years. It has definetly been a journey.Haven't officially been diagonosed with pps but am sure that is the nature of my problems. Basically just wore out but hanging in there. I'm blessed with a great supportive family and that really helps. When you are so independent like all of survivors are it is soooo hard to slow down and let others do for you. Hope to hear from others cause I have lots more to tell. Have a great and pain free day!
Like your name. Wish I were creative like that.
I'm new also. Would love to hear the rest of your story, and your symptoms.
As you, I have not been diagnosed with pps either. But I have so many stange things that I feel it has to be what I have.
Gosh, all those surgeries. Did they help? Are you in braces now? Always been?
What do your crochet?
Hi Jan60. Sorry I haven't replied until now. Can't seem to understand how to work this board. Just found your reply. I crochet anything and everything. Lots of baby sweaters and blankets, doilies, you name it. Now I'm afraid my hands are going to give out on me. Old arthritis I guess. No not all of my surgeries were successful. I think I was sort of a guinea pig if you know what I mean. I went to the famous Childrens Memorial Hospital in Chicago til I was l6. Then they kinda cut me loose. Basically like I said before I just feel wore out. Can do quite a bit from the wheelchair but if it involves standing very long I'm in trouble. Love to bake and keep house and it gets very depressing sometimes. Then I get uplifted when people tell me my house is so clean. If they only looked under the beds. (ha) I wear a long legged brace on my right leg only when I go out. That thing weighs about 5lbs and hot. My orthopedic wants me to go to Memphis and see this Dr. who knows about pps but haven't made my mind up yet. Like we all know what can they do except tell us what we already know. Slow down. Don't pay the price for trying to be like normal folks. Good hearing from you. Where is the rest of yall out there? Hillbillywife I have relatives in Yellville. Holler at me. Nite-nite crochetqueen!
hi everybody out there new to this polio at 3 years old now 52 some days feel like 80 still working get tierd more easly now used to have an abundance of energy taking it ill out as they say one day at atime
Hi - "brain Fog" for me is when i am so fatigued, that I cannot concentrate and have a hard time staying awake. I guess to put it mildly my mind cannot no longer function and only thing that helps is laying down and resting for me...
I had polio in 1949 at age 4. I pretty much had all the symptoms including paralysis in both legs. Fortunately, I recovered the use of my legs quickly but they're not as strong as they should be. I had some memory loss too.
It wasn't till I was in my mid 20's that I started to notice the fatigue, concentration and other problems. Fortunately I made it through college and beyond. Finally in my mid 30's I climbed out of denial to seek help. The only help I got were medications for depression. I think I tried them all. None helped, most made my symptoms worse.
What followed were years of struggle. They're mostly a blur now. I was never told I had PPS even after telling all the doctors that I had polio when I was young. I now take a few CNS stimulants that keep me going for most of the day. I also take other meds for other needs. Life is bearable. I look forward to beating the actuarial tables.
I have had this question for a long time. I am hoping this is
the correct place to ask.
As children my sister & I both were in the hospital with "non
paralytic polio". Only lasting effects was a slight weakness in
my back & legs. My sister has no weakness.
My question is---does anyone know of PPS in people that
had non paralytic polio? I have read that it is an unresolved
issue in the medical field. Any information is appreciated.
Thanks in advance------Kasey
Hi - There are quite a few of Non-Paralytic Polios that now have PPS - I have read quite a few books and have had contact with some. So it can happen to anyone that had any type of Polio- the hardest thing is finding a doctor who knows enough and cares.
Best to You (I also have done alot of research on the Net)
Thank you so much for answering. ~ 12 years ago I went
to a neuro Dr with RLS symptoms. I now have more symptoms
that possibly could be PPS. But, who knows! I probably need to
see the neuro again. My primary Dr is clueless. Not joking.
What books or literature can you recommend? I am so grateful
for any way to educate myself on this subject.
Hi - It is so difficult to find a doctor who knows and believes. I would recommend Dr. Bruno, he has been researching and really knows his stuff when it comes to PPS- He wrote the book 'Polio Paradox' - it is wonderful and so great to read, I call the book my 'Polio' Bible.