Post Polio Syndrome

[Princess "Leia"]

I am looking for info on PPS and also a good doctor in Southeast Florida who has expertise in this area. My friend is suffering terribly right now. Any help or guidance would be most apreciated. I know very little about PPS and want to learn all I can to help her. Thought I first would start here at CC.

Thanks,
Pam

[BeeBee]

Also try New Mobility. Every month they have a section devoted to PPS.

[Lindox]

Princess,
How old is your friend? Has she been diagnosed..and who diagnosed her?

It is quite an extensive procedure to rule out any other possible causes. And you do want to do that.

There is no real expertise in regards to this syndrome
I don't think. It varies as much as the disease itself and it's initial post problems.

I don't know any resources in your part of the country..hope someone here can help you.

There is alot of information on the net..just have to sift through it..and find what is applicable to her unique situation.

And finding the right doctor to advice you..is a real hunt..they are out there. But some are like a drug store..where others will try to listen..and work with you. Rare find though.

And usually if you are on an HMO..they are not..so will require private financing.

Is your friend a paralytic type? Bulbar? Both?
Is her terrible suffering you mentioned mostly pain?
Or a combination of many things?

Is she ambulatory? How affected was she?
I know not much help here..but there is some help available.
Is she on the forums?

[Sue Pendleton]

I am looking for info on PPS and also a good doctor in Southeast Florida who has expertise in this area. My friend is suffering terribly right now. Any help or guidance would be most apreciated. I know very little about PPS and want to learn all I can to help her. Thought I first would start here at CC.

Thanks,
Pam

Pam, I'm sorry I've been on vacation thelast 2 weeks.

My original doc in rehab at the National Rehabilitation Hospital in Washington DC was Lauro Halstead. Dr Halstead is an expert in PPS as he suffers from it. He's wriiten several books and articles including Managing Post Polio Syndrome. It runs about 250 pages. You can find just about everything you need very easily by clicking on WWW up above in the Google search area and type "Lauro Halstead" with quotes in the search block.

And yes, if you get the print copy of New Mobillity Dr Bruno has a monthly column on polio and its after effects.

[Princess "Leia"]

Thank you all for the help. This will give me a great start and hopefully guide me to a good doctor as well.

My friend (70 yrs old) was diagnosed with PPS years ago and had polio as a young women. She was told there was little she could do and has not seen a doctor in years. At this point her walking is becomng ever difficult, she has fallen twice (without reason) and now uses a walker. She also has pain.

Locally the doctors here leave much to be desired and I did tell her to go to University of Miami. It is where I go for treatment. She is aware of the local MD's short comings too. I am also looking into Shands for her.

Will keep you posted and thanks again,
Pam

[woman from Europe]

But is it any treatment for PPS?

[Lindox]

But is it any treatment for PPS?

The treatment is mostly compromise and accommadation IMO.

Now with the initial post-polio..there were REAL treatments. Orthopedic treatments that did improve your situation greatly sometimes.

Physio to were you saw improvements.


Over fifty years later..there is less to offer. I understand it..don't like it..but understand it.

With the numerous surgeries and the dedicated physio..it was excrutiating and gruesome..but damn you saw improvements.

Very disappointing that this syndrome wasn't recognized many years ago..and maybe then we would have something more then this type of treatment available today.

I've read were Dr. Wise doesn't want the care to be like it was with us old polios..ironic to me in a way.
The care today is nowhere near what it was for us in the past really..at least then the medical profession tried..and often was successful in helping us be physically better. It wasn't fancy or even sometimes tolerable..but you were going uphill..instead of this downhill race to nowhere. JMO

[woman from Europe]

Lindox

In Norway we call it a two-edged svord. I do not know what is the best. I exercised until I was ready to die when I got my SCI, because that was the way they did it 36 years ago. But I did walk in the end after months of physiotherapy and hard work. And then after 30 years it started to go downhills.

But when I see the way the treatment is now, I think I would never have made it. So I am grateful for all my physiotherapy and all the years I was able to walk. Because it looks like I would have been in a chair anyway, 36 years after.

[Sue Pendleton]

But is it any treatment for PPS?

From what I can find there really aren't any real treatments. I found one current clinical trial but it is to study people with PPS and if there is a change in the cerebral cortex and/or brain stem versus those who had polio but are not experiencing PPS. Seems some autopsies done on people who had been clinically diagnosed with poliomyelitis and who recovered but decades later had symptoms related to PPS had damage in their cortex or stem but those who recovered and did not experience PPS showed no changes inthe brain. Sorry. :(

[medic1]

Both of my parents have had polio and both are suffering the post polio syndrome. Does not seem like there are a whole lot of options out there. As for the treatment from years ago, I think my mom would greatly disagree with treatments that worked. She has horror stories of boiling hot towels being placed on here affected leg. Stories of being left in a hospital bed for months and months and spending time in a body cast. Her left leg is fused at knee and ankle. My dads leg stopped growing and looks like a little kids leg. It is awful to see the effects of it, yet I know they are both lucky to have survived it. Just sucks that they have to suffer again from the same disease.

[Lindox]

From what I can find there really aren't any real treatments. I found one current clinical trial but it is to study people with PPS and if there is a change in the cerebral cortex and/or brain stem versus those who had polio but are not experiencing PPS. Seems some autopsies done on people who had been clinically diagnosed with poliomyelitis and who recovered but decades later had symptoms related to PPS had damage in their cortex or stem but those who recovered and did not experience PPS showed no changes inthe brain. Sorry. :(


Anyone who has PPS can tell you something is going kookoo in the cabesa.

Sorry about your patents medic1...but sounds like they have a very understanding child.
Are they still ambulatory..even with crutches or walker? If so or even if they have had to resort to using a chair..have them get with a good program of supplements..and vitamin/mineral regime. It requires some high dosing. Also back into the water on a dedicated schedule. And I have found protein to be one of the only things that help with the fatigue.

What are they doing for the pain?
And being able to fall to sleep?

[medic1]

my mom suffers the most. Difficulty sleeping, pain most the time. They are mostly achy and fatigue easily. They are both ambulatory. My mom has been told she needs a hip replacement but she is putting it off til absaloutly necessary. It took a long time for my dad to realize that he isnt 20 anymore but as long as they pace themselves they are doing relatively well. They go to Arizona in the winter, Jan through March, and they both find they have less aches and pains. My dad hates docs and my mom cant afford to see a specialist, she is only on medicare. My dad takes tons of medications and does take vitamins, my mom takes only her prescribed meds. Although physical therapy is always suggested it is difficult to teach old dogs new tricks if you know what I mean. Our hot tub helps my mom alot, and my dad loves taking his Sauna's. Other than that, they dont do anything special. Just try to get through each day best they can.

[Lindox]

my mom suffers the most. Difficulty sleeping, pain most the time. They are mostly achy and fatigue easily. They are both ambulatory. My mom has been told she needs a hip replacement but she is putting it off til absaloutly necessary. It took a long time for my dad to realize that he isnt 20 anymore but as long as they pace themselves they are doing relatively well. They go to Arizona in the winter, Jan through March, and they both find they have less aches and pains. My dad hates docs and my mom cant afford to see a specialist, she is only on medicare. My dad takes tons of medications and does take vitamins, my mom takes only her prescribed meds. Although physical therapy is always suggested it is difficult to teach old dogs new tricks if you know what I mean. Our hot tub helps my mom alot, and my dad loves taking his Sauna's. Other than that, they dont do anything special. Just try to get through each day best they can.

I resemble that old dog.
I have seen the so called specialists..and mostly came away poorer for the experience.

I am under 60 but like your Dad never ever would have believed we would not stay strong as when we were 20.

I don't take the pain meds I have been prescribed..just can't mentally deal with the effects.
But the supplements when used religiously and at a higher dose then for most elephants does seem to help with moving around.

Do your folks come here?
I have noticed most PPSers have pretty much just done it on their own even after seeing some VERY pricey specialists..I really think the polio specialists are dead now.

I was affected in both legs and hips..one more severe then the other and one arm and my neck, trunk and lungs at first..so what my beloved ortho did for me..and I really did and do love this guy was of sooo much benefit. I though understand how your mom feels.
It wasn't easy and none of us I don't think were expecting this crap.

I don't really like the hot tub. But love swimming.
And do feel that it in itself can continue to tickle those worn out anterior horn neurons. And if really helps with keeping what works in top notch condition.
I guess to give polio one more thing to eat up like a little pacman. Would like to dangle it by it's microscopic balls for awhile.

Hope their problems at least plateau out..I am hoping this for me too. And glad they have you.

[Sue Pendleton]

When the local school for the severely handicapped opens its pool at night as part of the Parks Department activities there are a few of us SCI, TM types and a guy with PPS and his wife. He says it just feeels great to be able to walk and better yet to float and not feel so lugged down in a chair. His rheab specialist also recommended the pool. The water is kept at 95-98 degree so an hour feels so great both for exercise and relaxing tense muscles. I always slept like a baby when I swam.

As someone with a spinal stroke (same as a SCI) I was told to be careful of hot tubs. Too long can really knock our blood pressure down and we tend to have low numbers anyhow. And don't let the temp go above 99. For post polio I don't know about the temp and time questions but moderation has been preached a lot in some PPS chats.

[Lindox]

When the local school for the severely handicapped opens its pool at night as part of the Parks Department activities there are a few of us SCI, TM types and a guy with PPS and his wife. He says it just feeels great to be able to walk and better yet to float and not feel so lugged down in a chair. His rheab specialist also recommended the pool. The water is kept at 95-98 degree so an hour feels so great both for exercise and relaxing tense muscles. I always slept like a baby when I swam.

As someone with a spinal stroke (same as a SCI) I was told to be careful of hot tubs. Too long can really knock our blood pressure down and we tend to have low numbers anyhow. And don't let the temp go above 99. For post polio I don't know about the temp and time questions but moderation has been preached a lot in some PPS chats.

Yes, Sue the swimming pool is like a refuge. I'm sure you have experienced this too.

As far as BP changes..that is not effected in me at all. Just have problems with too drastic of changes in temperature. Either way.

And I don't know if anesthesia affects SCI folks...but it does a number on PPS..well did a number on us before PPS. Any surgery I ever had..my kidneys and bowels would not regain function for a worrisome time.
And I believe it was happening with all of us polios.
We were the only ones on enemas..and caths. after surgeries usually. And the SCI of course.

Also often given oxygen. So be careful even with light dose anesthesia. Even having a wisdom tooth removed can leave you out of it for twice to three times as long as anyone else..and those oral surgeons get skeereed as all heck.

This happened even before PPS came around and the surgeon was calling the ambulance. I told him just use the novacaine..but he didn't listen.

So be careful..but don't let it rule your life..really don't have too.

Thanks Sue for starting this forum..hope others can offer some of what they are doing for TMS, MS, and all the other S's.

[Sue Pendleton]

Yes, Sue the swimming pool is like a refuge. I'm sure you have experienced this too.

As far as BP changes..that is not effected in me at all. Just have problems with too drastic of changes in temperature. Either way.

And I don't know if anesthesia affects SCI folks...but it does a number on PPS..well did a number on us before PPS. Any surgery I ever had..my kidneys and bowels would not regain function for a worrisome time.
And I believe it was happening with all of us polios.
We were the only ones on enemas..and caths. after surgeries usually. And the SCI of course.

Also often given oxygen. So be careful even with light dose anesthesia. Even having a wisdom tooth removed can leave you out of it for twice to three times as long as anyone else..and those oral surgeons get skeereed as all heck.

This happened even before PPS came around and the surgeon was calling the ambulance. I told him just use the novacaine..but he didn't listen.

So be careful..but don't let it rule your life..really don't have too.

Thanks Sue for starting this forum..hope others can offer some of what they are doing for TMS, MS, and all the other S's.


First, I didn't start this forum. You folks did. :applaud: Wise got a lot of requests through the forums for information on ALS, polio, TM and MS. Then he just started getting email questions. So since it appeared we had members that had non-traumatic injuries who needed information also, well, it was just a matter of asking someone to moderate. Since my SCI is non-traumatic I know a bit about TM, way too much about spinal strokes and some about MS because I have a cousin with a particularly nasty form of the disease. I am still learning on everything else.

As far as anesthesia and spinal cord injuries, our biggest problem is autonomic dysreflexia. Surgical procedures below the level of injury can cause pain that sends blood pressure rocketing and the pulse to slow down to almost nothing. So oxygen isn't the problem it is having an anesthesiologist that knows the signs of AD while a person is under and can take them deeper under, stop the procedure if absolutely needed or suggest the operation be done in segments if possible.

Pain medication that can effect the kidneys or respiratory strength send many people with T-6 injuries or above to the ICU instead of regular post-operative recovery so pain meds can be given at a dose necessary to avoid AD while also monitoring vitals. There are times when a respirator may be needed short term (we're not talking right after the injury that caused the paralysis here) and, obviously to ICU staff, a foley to deal with the bladder. I say obviously because with bladder ultrasounds intermittent caths can now be done as needed instead of a set schedule that IV fluids might throw off.

I would think that most with PPS might want to ask about twilight anesthesia or have a dentist use nitrous oxide for things like wisdom tooth removal along with novacaine. I've had laughing gas pre-SCI at the dentist and in normal use the patient can give the dentist a sign like lifting a hand if you feel you have had enough. Most people drive home immediately after the gas also because it clears from the lungs quickly. In PPS it sounds like you would want a friend to drive you.

I think we have covered twilight anesthesia in the Care Forum for colonoscopies. Again, for SCIs, we might wake up in the ICU and spend a few hours there until cleared to go home. Mainly this is to monitor pulse and blood pressure. Once a colonoscopy is done normally there is no lingering pain so post-test pain meds aren't necessary. Just very nice to know the test center knows what AD is before they start the procedure.

For PPS I would definitely discuss this when scheduling the test if a history of polio or current PPS would put you in a risk category the main anesthesiologist needs to know about. They can then do a bit of research on your oxygen needs after this kind of procedure and the accompanying anesthesia.

I've been under all the way once since my spinal stroke and that was for a laparotomy. Kind of like exploratory surgery using chopsticks.:agog: I had one stitch in my navel and one on my right side afterwards. With a serious history of colon cancer on one side of the family and esophageal cancers and 3 bleeding ulcers on the other side of the family (that required removal of portions of their stomachs) my doc wasn't taking chances. All clear and I had 4 pretty polaroids to take home also. Amazing. I figured everything inside would be rather red looking from blood but nope. I have pretty guts. :mega:

With laproscopic surgery though you should all know that if the area being operated on requires a good field of vision you will have carbon dioxide pumped into, using my case, the abdominal cavity. The gas leaves the body by going up. So you will wake up to rather painful shoulders/upper back. In recovery I had a wonderful nurse wrap heated blankets around my shoulders and I stayed for an extra hour so I could get 2 more doses of fentanyl in my IV. Then home and serious pain as I laid on my back long enough to get undressed. Once into a night shirt I laid back down on my side that had the least pain because they really do try to keep the pumped area small in these kind of procedures. Laid a microwavable rice pack on the painful shoulder and relief was immediate. Off to sleep was easy. So depending on what kind of laproscopic procedure you have I would go over all past complications so the surgeon knows what might come up as a problem.

And just like anyone who has to deal with opiates for pain buy a bottle of colace or pericolace while taking these meds. Colace is a stool softner and peri-colace is a laxative. Even dentists now know to warn patients who may take an opiate for a day or two after root canals or the like.

Anyone else have starnge or unexpected complications from surgery or tests due to their polio or PPS?