Hi ----- I am suffering with PPS a much latter aftereffect of childhood polio that normally strikes in our golden years. At a time in life when we are to finally enjoy life this cursed illness strikes. At first it weakens the good muscles that have been getting me through the days of my life. Now it is getting to my entire body with severe muscle pain that de-mobilizes me and makes me take heavy meds to ease the pain so that I may function. I feel as though I am 7yrs old again with the dreaded virus as I am suffering the same effects. Pain and muscle weakness. As a result of this I will be going on all the meds that I did not need any longer after losing almost 80lbs since March 8 of this year. Each med ties in with the other. Heart, anti-depressants, pain meds, anti-infamatory drugs, ulcer meds to compensate for all the meds and prevent ulcers in my stomach. A vicious chain that must not be broken but the worst of it is that I can not garden until the pain is alleviated. This is my favorite time of the year for me in So Fl as I grow beautiful tomatos in my earthboxes.
Are There Any Polio or Post Polio Syndrome People Here?
Hi Tplant. I have PPS. I think I'm managing it pretty well and most days I can still garden and many other things at least for a few hours if I pace myself and rest a bit when I get fatigued. I've been able to manage pain with aspirin but my Dr. says I'm taking too much now and she just gave me samples of meloxicam (1 a day) usually prescribed for arthritis. We'll see. I hope you're doing well today!
Katy ----- I've been suffering with PPS for years and never realized it. I thought it was normal aches and pains until it became to severe. Was diagnosed two or three years ago with PPS by a neurologist but he could not do much for me. I learned more about PPS from the internet and various books and most of all from books authored by Dr. Richard Bruno. Look him up? He really knows and cares about us as MDs don't know anything of our plight. There are only 1million or so of us left and gradually diminishing so it is not worth the time and money for research. My pain is so severe at times that I must take strong pain meds but that only helps for a couple of peaceful hours. Most important is not to overdo anything and when the body wants to rest , do so..
Thanks for the advice Tplant. Yes, I've researched PPS on several web sites and try to follow the suggestions. As I'm a typical "Type A" I will often promise "just a few minutes more" or "just one more pot". LOL I play and then I pay.
How true, how true but after so much pain and suffering and my loved ones thinking that I was just plain lazy, I have learned the hard way to just stop being concerned about what people think and rest when my body calls for it or take a midday nap if needed. My family now understands thanks to the internet and additional research. I guess we are the only ones in DG that had polio?
Could be! Our numbers are dwindling through natural attrition. I'm the only one I know who also had whooping cough as a child. We're just getting old. But, we are survivors. ;·) The tough old ones. LOL
I had whooping cough also and so did a lot of kids in the forties. I was seven when I had polio(1944) in Greenpoint Brooklyn, NY. Left me with a partially and deformed right leg with 50% muscle loss. I wear a plastic brace and do fine. It was only after my heart attack in 98 that the symptoms of pps started with muscle weakness of my good muscles, partial numbness of my good leg and than the other followed by all the other symptoms. Sleeplesness, weakness and lots of pain. I've learned my limitations and do respect them.
I know of a couple polio survivors, my age of course. I've heard at least one has PPS pretty badly. I had whopping cough in the mid '50s at age 9 or 10. I nearly died as I also had bad allergies at the same time.
But leaflady, that makes you a survivor too! Good on you!
My doctor told me that PPS is brought on by stress in our later years. This seems plausable for me as my heart attack in 1998 turned my hair completely gray and the muscle weakness started, followed with shortness of breath and muscle pain. My work prior to this was extremely stressful and my heart attack, to me, was really a blessing as it forced me to retire or die. Of course I preferred retirement at age 59 and am enjoying life without stress. A refreshing change of pace.
Hi, I had polio at 9months old in 1954. I have seen a fairly steady decline in muscle strength (in bad leg as well as the "good" leg and arm which were also afflicted but recovered early on) since I was about 40. Fortunately, I am still able to walk, but now depend on my cane and find that I use shopping carts all the time when I shop (if available). I have bouts of muscle pain, primarily around the shoulder and neck and fatigue pretty easily. Deep tissue and myofacial assage and occasional accupuncture seem to help. I just found out that I also have Spondylolisthesis (a condition in which one vertebra slips forward over another one); so I am going through PT to strengthen core muscles; but what seems to help the most are the nerve block injections. I also have much trouble sleeping (thus, I am up at 3:56am writing this post), Ambien does wonders, but my doctor severely restricts how much I can have.
I retired last May, primarily to cut down on the travel and stress in my life and to to allow me to do some pleasure travel while I can (easily) - we were fortunate in that early retirement was always a goal for me and my hubby. Anyway, now I have time to work my garden without totally wearing myself out. I also go to water aerobics which has been a Godsend since I can "bicycle, jog, etc) in the water and have been able to tone up and manage my weight somewhat. I also have started sewing again. I have never regretted my retirement, I do feel a lot better.
I also do a lot of internet research and I found that "Managing Post-Polio Syndrome: A Guide to Living Well with Post-Polio Syndrome (NRH Press)" edited by Lauro S. Halstead was most helpful. http://www.post-polio.org/index.html site is also most helpful. Unfortunately, in Albuquerque we do not seem to have any physicians that know anything about PPS so self-education and educating my physicians is a necessity.
I too was forced to retire early and soon after, PPS hit me. I have learned a lot about PPS in the past ten years and how to manage it. Number one being don't overdo anything especially excercise. The problem is that the good muscles that did double duty to make up for the affected ones are now being infiltrated by PPS and suffering the same affects as the original polio attack only much slower. When tired do rest! Family and friends may think you are just being lazy and should excercise which is the worst thing one can do. Excercise makes my neck and shoulder pain worst but heat massage works wonders. I've lost over 100 lbs in the past year or so by having lap-band surgery and as a result my legs have become much stronger and my energy level has sky rocketed but I am very careful not to overdo anything and could care less what other people think when I stop and rest in the middle of a project even though I am not tired. (Gardening)
Excellent reading are books by Dr Richard Bruno on "Post Polio Syndrome" and a few others. He is the most knowledgeable doctor on this subject. Doctors are not taught more than two hours pertaining to PPS in med school as there are not many of us left to do a comprenhensive study. Same old story $$$$. Polio, as far as the medical society is concerned, has been eradicated by the Salk vaccine and once we are gone the problem will be solved. Cold facts but true!!!!
I'm curious, I approached a bariatic surgery clinic regarding lap band surgery. I am overweight but not by 100 lbs nor do I exhibit any of the "morbidity" symptons (diabetes, high blood pressure, etc). I was told that having PPS and wanting/needing to lose weight to spare what's left of my muscles was not good enough for them to even consider me as a candidate. Did you have the same trouble? I am sick of being told just to walk an hour a day or go out and exercise to lose weight... this is just almost impossible for me. I lose weight by going 1000-1200 cal/day -- not much fun.
Morbidity pertains to the severity of overweight and not to HBP and such. What is your height and weight? I must know if you are a male or female to use my charts? Please don't let vanity get in the way as no one here knows us.
If you are not overweight by a certain percentage based on gender and height, no clinic will perform the surgery unless it is done by a very private practice, if you know what I mean. My weight loss has made a tremendous difference on the aftermath of polio and of course PPS. Let me know?
I guess this thread has retired, but thought I would chime in. I don't have PPS, rather GBS (Guillian-Barre Syndrome, spelling aproximate). 90% of those with GBS recover more than 90% of their strnegth, but I was in the other 10%.
Believe it: "When tired do rest"! You can't afford to care too much what others think. (Though I admit I always use a cane outdoors even on a good day, becuase I don;t wnat people to think I;m drunk when I go swaying and waddling around.
I keep a chair _very near_ where I'm working and sit _often_ to rest ankles.
I'll put a thick hard-foam cushion on it so sit-to-stand isn't tiring.
When I can, I will shovel, rake or hoe from a sitting position.
I make raised beds as high as possible, and dig trenches around them as walkways, so i can do as much as possible stooping as little as possible. I stand 8x16" pavers on end the long way, and usually prop them up on the really solid heavy clay to get a little more height.
"Use what you have, spare what you don't."
"Save some strength for what you most need and most want."
I wish I had an easy way to kneel or stoop and get back up. I've seen "kneelers" with arm rests but I weigh a lot and expect affordable things to buckle under me.
Good luck to everyone on the forum!
Rick --- Try the Garden Scooter at www.Gardeners Supply Companyas it holds up to 350 lbs plus and the Kneeler is extremely strong. I used both when I weighed 338lbs with out any problems. I couldn't garden without it.
Bringing my PPS up to date my good leg (left) that carried me all these years has become much weaker and also 70% numb which is far more than last year. I also have heart disease including angina and must stay inside during the heat we have in the summer pertaining to working in my garden and must not lift more than 30 lbs. I must use a cane in the garden as my legs have become unstable and I tripped many times thus the Garden Scooter, my kneeler and my cane. I gave away 14 of my 19 EBs as I can no longer manage all of them.
My Aunt has PPS. She can't walk at all anymore and is in a wheelchair. Her polio was pretty hard... I never remember her that she didn't walk with a lope and limp.
%Thanks very much, Tplant. I wish you luck with handling your progression. I admire your courage.
The kneeler looks great, and maybe my 285-300 pounds are close enoguh to "250" to use it safely. The $35 or $45 seems well worth it. I think I'll start budgeting for it:
The $100 Scooter looks great, but not in my budget until I REALLY need it!
Rick -- You can get the Kneeler at Lowes for $19.95. This is where I bought a second one for the back of my house so I didn't have to carry one to the other garden although they are not that heavy but I must have hands-free when I walk. Good luck my friend and God Bless....
Lowes, for half-price? Cool! I think tonight ...
They had some great prices on manure and bricks last spring, and I made a note to go there next time I needed more. They turned out to be special, brief sale prices.
When I was in a rehab for spinal-and-suchlike conditions, the people with MS, and in chairs, always impressed me hugely with their courage and fortitude. Since I was getting signifigantly better, I knew I was the lucky one.
That, and the very wise neurologist from New Jersey that I went to. I complained to him once, and he gave me these words of wisdom that have stayed with me ever since:
"AHH! Yer lucky yer BREATHIN'!"
I would say that we're all lucky we're breathing, and the most unlucky ones are those that don't realize it. I met a totally healthy young guy once, rich family, didn't need to work but had a fancy job he could take vacations and travel around the world any time he wanted, got a generous allowance if he didn't feel like working. He was whining and felt put upon, that his father occasionally expected things like a little courtesy, or some of his time.
Then there was the 80-year-old-guy who _complained_ to the nurse about a minor injury, that he "never had had a single sick day in his life" and now he was really _annoyed_ that he had to see a nurse a few times per month, for a few months.
We might want to trade "problems" with them, but I would not want to trade attitudes!
You can't be happy unless you're willing to.
Thanks for your good wishes - to you, too!
My best friend (many states away) has PPS and an autistic son and a blind husband. She gets more SSDI than I do so it's all good.
BTW it makes me CRAZY that there's an anti-vaccination movement in this country! Bring on the pertussis, bring on the polio, tetanus, mumps and rubella! We may yet have enough polio cases to do the studies you were hoping for!
I read that there was an African country, poor as dirt, simultaneously going through a drought AND a civil war.
That year they STILL had a higher rate of child innoculation than the USA, because no one screamed "socialism" when the government thought it was a good idrea to vaccinate children.
Happy to hear the good news! No child should contract polio if it can be prevented as it is a never ending virus.By the way, I was able to plant my six earthboxes with twelve tomato plants as the climate was cooler but the very next day it jumped back into the upper 80's and to humid for me to be out there. If only the humidity would drop some? Oh well --till then I'll hang in there.
Good for them, Rick, and what idiots we are! Polio was very nearly eradicated, but not now.
Ted, keep hanging! Btw, do you want me to put you in the screen names/real names thread? You know I'm jealous of you and your year-round tomato weather!
The line I like is: "If life was fair, we'd all be dead." That's one that tends to stop the whining.
My ankle is still sore and I have to be very careful walking. I'm waiting for an ankle brace that another DG'er is sending me. It's the pump-up kind, a lot like a cast or splint. This is what I need - a ripped tendon is slower and harder to heal than a broken bone, I think, but that may just be because the doctor won't put a cast on it so it can heal properly. It's been about six months now, which seems like forever but isn't.
I'm on meds for diabetes and cholesterol and the diabetes meds are not agreeing with me. I feel like a slug. As they say, my "get up and go" has got up and went.
Very glad I have a place where I can talk about these things. I tend to feel that my arthritis was enough to deal with and it's just not fair to have all this other stuff going on. Which brings us back to "If life was fair...."
Ooops, Katie, sweet, this is the PPS thread. Not that you can't talk on this thread, but you won't find Kay and Debra over here. And your arthritis WAS enough, you SHOULDN'T have all this other stuff to deal with. It ISN'T fair.
I dropped in cause I saw my friend TPlant was here. Thought I would comment about those who complain about the small stuff.
And I go wwhere my friends are. They are not allowed to avoid me.
Katie LOL --- It's OK as pain is pain and unfortuneatly I have both and see a rheumatologist for occasional injections for my very painful shoulders and he cured the pain except in the AM when I wake up. I'm on diconflex and it is a miracle pill.
Carrie -- You can put me in the thread as it is fine by me.
It was a good day yesterday and I was able to work outside and do some clean-up work in my tomato garden but I can do much less than last year. My PPS makes me so weak so quickly. I know my limits and keep my comfy lawn chair close by so I can plop in it when my legs start to get weak. It takes about five minutes or so if I have to keep standing and no problems when I can use my lawn scooter or the adjustable kneeler. I recommend these products for anyone that may have any health issues. Just ask Rick about the garden kneeler?
I wasn't able to find that kneeler at my local Lowes. BTW, my legs and especially my "lymphedema leg" have been doing much better lately.
And I have been finding ways to sow and plant with less stooping.
>> The line I like is: "If life was fair, we'd all be dead."
And also "AHH! Yer lucky yer BREATHIN'!"
One science fiction novel talked about a super-computer that someone wanted to put in charge of the planet's legal system. One character pointed out that a perfect system of justice was exactly what they did NOT need.
"The whole planet would be in jail inside a year!"
I like "lymphedema!"
Sorry, Katie,I just thought you might be confused, as I so often am...
Rick -- The kneeler is displayed at my store by the garden tools inside the store. They are in an oblong box and not on open display. You really have to look for it or ask a clerk at the customer service desk.
I'll try again. I went by some online listings plus several clerks' confused incomprehension. I did search the garden section pretty closely.
Thanks for encouraging me to look again!
Thought this might be of interest ... I thought it was VERY interesting.