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A CORNOCOUPIA WITH THANKSGIVING GOODIES
A LIGHT-FILLED CHANUKAH
and the
MERRIEST OF CHRISTMASES!!
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November 21st, 2004 --
January 16th, 2005 -- NEW YEAR’S LUNCHEON
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CONTENTS
My “Adventures” 1
Things Learned from Hurricanes 3
A Friend 3
PPS: Proper Evaluation,
Treatment, and Management 4
PPS and West Nile Virus 20
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MY “ADVENTURES”
I’ve been told that you like reading about my "adventures" when I drive to Long Island or elsewhere – well, here’s Barbara’s latest “Adventure”… However, before I begin I would like to thank everyone who called, sent cards, and/or e-mailed me expressing their concern for my condition.
Now….. You may recall that Florida was hit by several hurricanes this past summer. Hurricane Charley struck the middle of August, unexpectedly coming into the central Florida area. Naturally, it knocked out the electricity and the phones for several days. My lights went out at 10:30 PM on Friday the 13th – need I say anything else…. On Sunday, we still had no electricity. I was scheduled to drive up to Long Island on the 20th but I decided to leave a few days earlier. I packed my suitcase and started out on Sunday the 15th at about 5:00 PM.
Unlike most of my other drives north where I drive straight through, I stopped
overnight in Ridgeland, SC. I left the motel at 5:30 AM on Monday the 16th to
continue my drive north. I kept noticing the utility convoys heading south to
help out the hurricane stricken areas of Florida.
It was amazing the number of trucks going South.
Well, I reached Fredericksburg, VA at about 1:00 PM and decided to fill up
with gas, make my pit stop and get something to eat (by going thru
the drive-thru window). Then I got out of the car and started to open the door
to go into Wendy’s. Suddenly I found myself on the floor…… Don’t know to this
day exactly what happened. But during the fall I slammed my left shoulder into
their “fancy” decorative brick wall (you know – one brick in, one brick out),
and must have hit the corner of one of the bricks with my
shoulder.
After checking that I didn’t do any damage to my legs
(which as a polio I always worry about), I found that I couldn’t lift my left
arm. An ambulance was called and I was transported to the local
hospital. There x-rays were taken and the doctor told me I had a broken
humeriel bone (shoulder bone). They put a sling on
me – told me to see a doctor when I got home and discharged me. The hospital
called a cab company to come pick me up as I told them I was by myself. I was
very fortunate that the cab company sent a driver who was most helpful. When I
explained my predicament to him he asked what he could do to help.
Soooooooooo,: I took him back to the Wendy’s;
showed him my car; went thru the “drive-thru” window with him to get something
to eat. He continued to help me by finding a Best Western just down the road
and then helped me into the motel to register and helped get me and my
overnight bag into the room. While we
were doing all this, I said to him that my son, David, would be flying down
from Long Island to drive me home. This very kind man then asked if I would
like I him to pick David up at the airport and bring him to the Best Western.
He gave me his phone number and I gave him my son’s so they could make their
arrangements.
Well, David got to the motel room at 4:30 pm. We left by 5:00 pm Tuesday and
drove the approx 750 miles back to Ormond Beach by 2:00 am Wednesday.
I went to a local orthopedist who basically did
what is done to a “normal” broken shoulder. He made me keep my arm against my
body with a tight body sling for three weeks. Then I had simple therapy to
start the arm moving again. Since my right leg is completely paralyzed (full
leg brace), and my right hand is what is called a “flat palm”, I needed to
have help getting dressed in the morning, undressed at night, and showering.
After imposing on my sister-in-law about two weeks (during Hurricane Frances),
I decided to hire a caregiver to assist me. As I’m a very independent person
who wants to do everything for myself, I only used the caregiver for
another two week period. At
that point I flew up to New York to help celebrate my grandson’s
first birthday. Once there, I had a friend drive me to Philadelphia (Univ
of PA Hosp) to see Dr. Mary Ann Keenan, my post-polio orthopedist, for her to
check me out. Everything was as it should be and she told me to start physical
therapy when I got back to Florida. Told her it was in
the works. I start therapy this coming Monday, October 18th, for a one month
period. Will report in the next newsletter as to how things are coming along.
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LOOKING FORWARD TO
SEEING EVERYONE
ON NOVEMBER 21st
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THINGS LEARNED FROM HURRICANES
CHARLEY, FRANCES, IVAN and JEANNE
* Coffee and frozen pizzas can be made on a BBQ grill.
* No matter how many times you flick the switch, lights don't work without electricity.
* Kids can survive 4 days or longer without a video game controller in their hand.
* Cats are really irritating without power.
* He who has the biggest generator wins.* Women can actually survive without doing their hair.
* A new method of non-lethal torture - showers without hot water.
* There are a lot more stars in the sky than most people thought.
* TV is an addiction and the withdrawal symptoms are painful.
* A 7 lb bag of ice will chill 6-12 oz beverages to a drinkable temperature in 11 minutes, and still keep a 14-pound turkey frozen for 8 more hours.
* There are a lot of trees around here.
* Flood plan drawings on some mortgage documents were seriously wrong.
* Contrary to most Florida natives' beliefs, speed limit on roads without traffic lights does not increase.
* Aluminum siding, while aesthetically pleasing, is definitely not required.
* Just because you're over 21 doesn't mean you can stay out as late as you want. At least that's what the cops told me during a curfew stop.
* Crickets can increase their volume to overcome the sound of 14 generators.
* People will get into a line that has already formed without having any idea what the line is for.
* Some things do keep the mailman from his appointed rounds.
* Tele-marketers function no matter what the weather is doing.
* Cell phones work when land lines are down, but only as long as the battery remains charged.
* 27 of your neighbors are fed from a different transformer than you, and they are quick to point that out!
* Laundry hampers were not made to contain such a volume.
* If I had a store that sold only ice, chainsaws, gas, and generators... I'd be rich.
* The price of a bag of ice rises 200% after a hurricane.
* Your water front property can quickly become someone else's fishing hole.
* Tree service companies are under appreciated.
* I learned what happens when you make fun of another state's blackout.
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The following piece is from my Cousin Donna’s B’not Mitzvot book in 1995. After my “adventures” the past couple of months, I think it’s most appropriate.
A FRIEND
A friend is someone who comes when you fall.
A friend is someone who cheers you up.
A friend is someone who always listens.
A friend will come to your aid.
A friend will be there when you’re afraid.
A friend will care, and a friend will share.
A friend will never leave you there.
A friend will share the deepest thoughts without upsetting you.
A friend will listen.
A friend will help.
But most of all, a friend is someone you enjoy being with when
you want to be alone.
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The following article is reprinted from the San Francisco Bay Area Polio Survivors Newsletter, Volume 15, Issue 1, September 2004.
Would like to thank Phyllis Hartke in particular for e-mailing the article over to me so as to save me retyping it. THANKS, PHYLLIS!!!
POST-POLIO SYNDROME
CLINICAL EVALUATION
Director, UCD Medical Center Post-Polio Clinic
Sacramento, CA
Presentation at SFBAPS May 15, 2004 Meeting, Transcribed & edited by Phyllis Hartke, SFBAPS Pres.,
and approved by Dr. Carol Vandenakker
(Part 2 will be Dr. Vandenakker’s September 18 presentation to SFBAPS meeting.)
When I talked to Phyllis about various topics that I could present to the group, she suggested SFBAPS members might be interested in how we do our PP Clinic assessments. This will give you an idea of what sorts of things I see as particularly important. You may recognize certain problem areas that you will want to report to your doctor. To accomplish this I will examine Phyllis in front of the group today, trying not to get too personal.
I will also be presenting for the CA Society of PMR tomorrow morning about PPS, and hope some of the PMR physicians around the state will know a little more about post-polio after my presentation. Part of what we cover today will be in that talk, but I will give them more background because they do not have as much knowledge about PPS as you folks do.
PMR stands for “Physical Medicine & Rehabilitation”, also known as “physiatry”. It is often the medical specialty with the most knowledge about PP. Orthopedic surgeons no longer do surgeries on PP children, and seem to have lost interest in polio. There are also neurologists who follow PP, so that would be the other group that might have some familiarity.
I do not know how many physicians do extensive assessments the way I do. They are very time- consuming. Most physicians who are in private practice cannot afford to do it, and this may be one reason why polio survivors have difficulty finding a polio-experienced doctor who can give a thorough good postpolio evaluation. I do train residents, so more are learning. Also, in Sacramento our dept is developing a program at the local Veterans Administration Medical Center. Probably I will be able to set up doing a PP clinic there maybe once a month or so. Those of you who have VA benefits will be able to see me there when that is established.
How do you get a postpolio evaluation once you find a polio knowledgeable physician? There is no specific terminology you need to use when scheduling the appointment or asking for a referral from your primary care doctor. The diagnosis code is “postpolio” and “possible PPS”.
· Survivors of acute polio with neurologic deficits have a 40% risk of developing new progressive muscle weakness (Sorenson, et al, 2002).
· Similar delayed decline is seen in survivors of other conditions (myelopathy) that injure anterior horn cells (Narayanaswami, et al., J. Neurol Sci 184:11, 2001).
As you know, there is a difference between postpolio syndrome and just aging with polio. If you do not meet the diagnostic criteria of full-blown PPS, being seen in the PP Clinic or by somebody who knows about polio may be helpful. In the PP clinic I do not make a differentiation. I see anybody who has had polio. Many times the problems that present are problems that we can do something about and are really very similar in those two populations. For instance, polios not experiencing PP fatigue might be having joint pain, more walking difficulty or certain other parts of the syndrome. Instead of labeling someone postpolio syndrome, I explore the patient’s problem and what we are going to do about it.
According to the studies that have been done, 40% of polio survivors who have neurologic deficits develop what we define as PPS. We also see similar symptoms in some other neurologic disease groups as they are aging and being studied. There is some cross-over in symptoms, not exactly the same, but certainly some similarities.
Everyone is different. In some patients we have optimized everything we can, and the patient has done everything right, and they’re still slowly losing ground. I just do not have all the answers. Some of it is a combination of aging along with the PP. I hate to say that because too many doctors say ‘oh, it’s just aging’. But the truth is that aging in general compounds the whole PP problem. It is like you age twice as fast. At this point in time, you just do not have anything extra to lose.
· Excessive fatigue (>80%)
· Muscle/joint pain (60-80%)
· New weakness/atrophy (40-50%)
· Cold intolerance (25%)
· Dysphagia/ breathing changes (10-20%)
You all know the symptoms of PP, the fatigue, muscle or joint pain, new weakness, new atrophy, cold intolerance, and then there’s swallowing and breathing difficulties. Also cognitive issues. Often these symptoms are not as much present in people who are well rested or employ simple compensatory techniques.
· Prior episode of acute polio.
The actual strict diagnostic criteria for PPS includes a definite history of acute polio. I have seen people in the clinic who have had other neurologic diseases and were not sure if they had polio or they thought they had polio and it wasn’t.
· Period of neurologic recovery, followed by at least 15 years of functional stability.
A period of neurologic recovery with stability for at least 15 years is part of the definition that really differentiates some of the other neurologic diseases that are more progressive.
· Onset of new weakness or muscle fatigability, with or without generalized fatigue, muscle atrophy, or pain.
· Exclusion of other medical, ortho-pedic or neurologic conditions.
This aspect makes it tough to put this diagnosis on a lot of people.
In someone who has many medical problems, it is very hard to tease out the symptoms. For instance, if you are getting weaker, is this due to heart disease, cardio-vascular disease, diabetes, etc.? Is it PPS? Is it a combination or something else? So the strict criteria says we have to rule out those other things as etiology. That can be a gray area in some cases.
Statistics show that for polio survivors coming into our polio clinic,
· One-third with new symptoms will have an unrelated medical, orthopedic or neurologic condition that is not strictly polio related.
· One-third will be experiencing deterioration of previously stable orthopedic problems, like arthritis joint issues related to the polio.
·
One-third will
actually have true new progression of motor unit dysfunction (PPS and the
clinical loss of motor unit function).
As I said earlier, we address all three of these groups and try to identify what is going on and how we can intervene.
EVIDENCE-BASED MEDICINE
The types of interventions we make are based on what the literature has shown up to this point. What helps the most is rehabilitation. Many studies show that rehabilitation interventions (therapeutic exercise, conditioning, energy conservation, adaptive devices and bracing) are able to stop the progression of symptoms and improve function and quality of life in patients with PPS. This is where we try to intervene. Improving some factors can result in overall improvement (pain management, pulmonary or sleep interventions, weight loss, treatment of depression) and is better than no improvement.
We do different types of therapeutic conditioning exercises that are very individual depending on the person and what muscles have what strength. We work on energy conservation, pacing and using adaptive devices and bracing. If medical examination and tests reveal something else is going on, that is addressed.
ASSESSMENT, DIAGNOSIS & TREATMENT
Complete medical assessment essential (and time-consuming)
· Diagnosis and treatment of medical, neurologic or musculoskeletal conditions
· Optimize body mechanics/ protect weak or painful joints with assistive devices and bracing
· Limited, specific exercise is recommended for conditioning and maintaining functional range of motion
· Medications should be used with caution
· Define each presenting symptom
· Develop differential diagnosis
· Design diagnostic plan
· Follow up on testing
· Make recommendations
· Follow up to assess effectiveness of interventions
BODY MECHANICS
· Careful assessment of body mechanics and gait are essential
· Correlate to manual muscle test
· Evaluate current, previous, and possible need for orthotics and assistive devices
· Consider pros and cons of any changes
· Discuss with patient
· Exercise recommendations based on individual needs and capabilities
· If therapist is used- be certain there is a basic understanding of polio
· Patient must know how to identify overuse symptoms
MEDICATION
· Review patients current medication list for potential problems
· Treat post-polio symptoms with modalities other than medication if possible
· Use medication cautiously
PATIENT EDUCATION
· Pace activities to avoid fatigue
· Recognize of signs of muscle fatigue and overuse
· Improve factors that can be controlled
· Symptoms must be evaluated, not every symptom is polio-related
· Education
PHYSICIAN / PATIENT PARTNERSHIP
· Ongoing communication is essential
· Patients must take ownership of their health
· Make decisions with your patients
EXAMPLE OF PMR VISIT:
HISTORY TAKING PHASE OF VISIT
The first thing I do in a PMR visit is a complete medical overview in terms of medical history. So, we are going to do that with Phyllis and try not to get too personal in doing that in public here.
First thing I ask is “Why are they coming to the clinic? What is their purpose? Their main concern?” (evaluation for PP, weakening muscles) Where specifically? (legs, quadriceps, knees) Pain in the knees? (sometimes the left knee)
How old were you when you had polio? (14 mos) Were you hospitalized? (3 mos) What limbs were involved that you recall or that your parents told you? (complete paralysis below the waist) So as far as you know the rest of the trunk was not involved? (yes and no) Did you ever require any ventilation? (no)
Did you use braces as a child? (rt leg until kindergarten) Was it long leg or short leg brace? (long leg) Did they do surgery on your leg? (no) As a child, how active were you? Did you play on the playground with other kids? (I did the normal stuff) Able to keep up or always a little behind? (always a little behind and generally the last to be picked)
As an interesting aside, I had a good friend in medical school who grew up as a child who was less coordinated than his classmates, always behind and he took flack for his lack of athletic skills. Only in adult years after we were well into our medical education did we realize that he had had polio as an infant and nobody really realized it. I am sure you can relate to that history.
Did you ever use crutches or anything of that nature? (not as a child; only residual effect was that my right leg was ½ inch shorter so I always wore a lift on the bottom of my shoe; one other problem, I wore a back brace in 1st-3rd grades that went from my hips all the way up to under my arms because of the scoliosis) So you did have some trunk involvement, not just the normal age-related scoliosis! (I had always understood that it –low back scoliosis- was the result of the uneven hips) But there may be some lower spine and back involvement!
As an adult when did you start to notice any new problems with the joints, muscles, syndrome? (In 1980’s started having problems with my right ankle getting weak and arthritic and I figured it was due to overuse all these years that was causing arthritis. No bracing. Doc put me on anti-inflammatory meds which I took when it got bad. The problem didn’t start to become really noticeable for me until 1996 when there was employment stress-related decline.)
What sort of physical symptoms were you having then? (I was starting to have increased weakness and some burning sensation with my quadriceps on the left. I started using a walking stick for distance. About a year after that I started using a cane on the left side. I gradually moved to using two canes and an AFO. About a year after that I started using two forearm crutches, experienced considerable rapid fatigue, and in 1999 I finally followed my doctor’s advice to stop working, getting permanent disability leave status due to progressive PPS.)
During the time you were having this increased weakness were you assessed with other tests or an EMG? (In 1995 and 1996 I had a battery of tests at CA Pacific Medical Center which was doing the postpolio trial drug study for IGF-1 and mestinon. The EMG showed evidence of polio and postpolio in muscles seemingly unaffected by the original polio.) And no knee problem? (no) At this point in time do you have a lot of muscle aches and pains in your legs? How often does that occur? (whenever I stand for a few minutes) How long does it last? (until I get off of it) When you get off of it, does the pain go away right away? (pretty much so)
Do you know why I was asking those questions? Pain where there is relief right away is not really postpolio pain. It is muscle-fatigue pain. If it truly were muscle breakdown, it would continue for a long time afterwards. So it looks like we could probably strengthen that good leg a little bit, and we can confirm that or not depending on the present strength in that leg.
Postpolio pain is not the muscle twitching, cramping, or soreness pain you experience when you have overused muscles used in the normal way. Postpolio pain is more of a burning sensation. This is nerve pain that arises because you are losing muscle nerve endings. Some people who had polio at an older age remember the pain with acute polio and describe the PP pain as very much like that in acute polio. It is a much more severe pain than the kinder general muscle soreness that can involve components of burning – a different quality to it.
Are you getting any muscle twitching or cramping? How often does that occur at this point in time? When you use a walker does that help? (I used to get a lot but that has pretty much gone away unless I have done too much during the day.)
Twitching and cramping that Phyllis is describing is overuse of the muscle. If someone is having a lot of twitching or cramping in the muscle, that is telling me that they are still overusing the muscles and they haven’t learned how to pace activity. Many polio survivors I now see have already learned about pacing and conserving energy. A lot have already figured out that if they pace those activities, do not do too much at one time, the twitching, the muscle pain goes away. But some people are not as well educated or do not want to cut down on activity and are still having a lot of muscle symptoms. So, I always key in on that.
Do you have much back pain? (between the shoulder blades and up) How long has that been going on? (6-12 months, and it gets worse the longer I use crutches or the longer I sit using the computer) And how would you describe that pain? (aching) What relieves it? (lie down)
Now again, the character of this pain between the shoulder blades is different from polio muscle pain. Most of you can relate to that. Polio muscle pain is a deeper, more painful kind of muscle pain from muscle breakdown. Here, this is more of what we see when you have overstressed muscles that really are not strong enough for what you are asking them to do, like crutch walking. Many women do not have real strong shoulder girdles. When you start using your arms a lot for support; (especially if you did not need crutches when you were young), you may be overstressing the upper back muscles.
When you are doing a lot of desk work or sitting at a computer, if you do not use good posture and lean forward a lot, you are putting constant stress on those muscles at the back of the neck and upper back. They are the postural muscles that hold the head up. So the minute you hold your head out here for long periods of time, those muscles are just going to contract for long periods of time and will fatigue and you will start to get this aching. So that is a problem that physical therapy can be helpful. With some postural exercises, and by doing shoulder girdle strengthening this will probably improve.
The same thing is true with manual wheelchairs. If you have been in a chair your whole life, you may be losing the good upper body strength or the muscles that you need to propel a wheelchair. If you are older when you go into a chair, you may not have the strength to do a lot of propelling, particularly when on carpeting or other surfaces with resistance. You may start to get just your regular muscle soreness type of pain, especially in older people but this can happen in younger people as well, depending on the condition of your shoulders.
If there is some kind of forward positioning of the shoulder causing forward rounded shoulders, you can get impingement of some of the tendons. Then you start to get a tendonitis picture and pain in your shoulders just from this kind of overuse. This is often seen with crutch walking, cane use, or propelling a manual wheelchair.
With walker usage, you do not use the shoulders so much. But you may still see shoulder pain if you have arthritic shoulders. You do not see shoulder tendonitis much. With walkers, and in crutches and canes usage, you can see tendonitis in the hands, wrists and elbows. You may exacerbate arthritis and carpal tunnel syndrome. These orthopedic and neurologic conditions will flare up once you start having to use those hands to grab onto something every time you walk.
There is a polio subpopulation with primarily upper extremity involvement. This involvement is a very individual thing. We have to look at what muscles are being stressed and with what activity, and whether we can make adaptations. Sometimes we use splints for support to take the stress off some of those muscles. It is more difficult to prop or support the upper extremities because there is not very good bracing for the upper extremities in general. There are things you can do, and occupational therapists can often help with that.
Are you having pain in any joint? (On occasion, my right ankle) So that has gotten better since you are using the brace? (yes) … I do not worry too much about joint pain if someone says ‘on occasion’. It is a given pretty much that there is some arthritis in some of these joints. Often it is not interfering with function, and is a recurring thing with certain activities. There is usually not a whole lot we can do before it gets to the point that we need to be aggressive, so we are going to leave those things alone at this point.
Do you have numbness or loss of sensation anywhere? (no) … Why do I ask that? The reason is because polio does not affect sensation, the sensory nerves. If there is numbness it means to immediately look for other neurological problems. Often I have people come in and say ‘my leg has become much weaker and it is numb over here’. Well, that means this is not PP. Something else is going on. More often than not, it is a pinched nerve in the back, or some other neurologic condition.
Now there are times when there is a lot of polio involvement around the shoulder girdle and the shoulder is kind of hanging. You can put traction on the brachial plexus and affect nerve function in the arm. Now you are having a secondary problem with peripheral nerves through the shoulder, and you will get symptoms of numbness and weakness. Again, it is not directly PP or related to the polio but is a secondary problem. It is like carpel tunnel syndrome, a peripheral nerve impingement that causes not only weakness but also loss of sensation or numbness in the hand. Something other than postpolio is the cause.
Do you stumble? (when I am fatigued) How often do you fall? (not very much, maybe twice a year) When you fall is it usually due to loss of balance, catching your toe, your whole leg giving out, or what would you say? (something in leg giving out) … I have learned that when I ask polio patients about falls, not to say ‘do you fall often’ because for some people falling once or twice a day is not often for them. To me, that is often. Twice a year? I probably fall twice a year. I just tumbled off a ladder recently. I have patients that laugh at me. I got a real good ankle sprain out of it. If you are not falling any more than I do, I call that normal range. As you age your bones are at higher risk of fracture. Then we want zero falls because those fractures can do a lot more damage. They can really immobilize you.
The reason I ask about the number and cause of falls is to zero in on “foot drop”. If the patient tells me they fall several times a week and I catch my toe on things, and I examine them and they have a foot drop, obviously we are going to do something about that foot drop. Often, like in Phyllis’ case, when they are appropriately braced, there are still situations where you get in a position and get off balance, where you just do not have the muscles to save yourself once you start to go and there’s going to be a fall. In some ways that is almost unavoidable while you are still ambulatory. You need to be very careful about safety.
Have you had any broken bones because of a fall? (no) … That suggests just how fragile are the bones. We know that everybody loses bone density as they get older. Women usually reach the point they have osteoporosis before men do because women do not start with as great a bone mass. People who have polio, especially severe involvement in some limbs, never developed normal bone density to start. Those limbs will become osteoporotic earlier than your good limbs.
That is important to know when you undergo a bone density test. The routine bone density test looks at your spine and hip. If they do your spine and the polio hip, they will come up with a very different number than they do as far as a good hip. The same if you have one polio leg and one leg that was OK or fair. So be aware of that. As far as your overall bone density, the more accurate would be to look at the good side and that is what I would request.
Do you have problems performing any of your activities of daily living, things like getting dressed in the morning, bathing? (have chairs in bathroom, bath tub, kitchen, etc.) Are you able to fix meals OK? (yes. I find that my right arm is weakening so lifting pots I use two hands) Are you still able to clean the house? (yes, but I take more frequent breaks and have a chair every five feet) … Obviously, Phyllis is well educated and has already made many interventions that I would normally be advising someone about. When people are having problems with, for example, getting dressed or fixing meals, I often make those suggestions. Having a stool in the kitchen or a stool on wheels you can roll and do things depending on how safe that person would be on wheels, breaking up the house cleaning, and so on are some of the recommendations I provide. Sometimes, people get to a point in health that I tell them ‘Spend the money and have someone come in and do the heavy housework. Do not do it yourself. You are wearing yourself out, and it is not worth it. Your house does not have to be spotless even though all you Type A people think it has to be so.’
Any problems getting in and out of the car or out of the house? (I do not do stairs, and when getting in and out of the car I have to use my hands to lift my bad leg in and out.)
Any other problems you are having that might be related to polio? (weakening right arm; breathing and swallowing difficulties) When do you have breathing difficulties? (when I lie down on my back) Have you had pulmonary function tests? (Yes) What were the results? (Both inspiratory and expiratory muscles are weakened)
Remember earlier when we talked about scoliosis I said ‘it sounds like your trunk may have been involved’. Respiratory muscles are above the waist too. I am finding that many people were told they had polio ‘waist down’ or ‘just your right leg’ and it is often not true. Often there was involvement in other areas of the body. Then as you age weakness develops in what you thought were normal limbs but in actuality were polio affected. And so just one of the little things I say is “Oh, maybe the polio was more extensive than you thought.”
Is it to the point that he recommended any positive pressure breathing, anything along those lines? (not yet) And you are still sleeping well? Do you ever sleep on your back or side? (I never sleep on my back unless it is at a 45 degree angle; generally it is on my stomach or on my left side; it makes it a whole lot easier to breath) … Many people who are back sleepers angle the bed - bringing the head of the bed up. You do not need a hospital bed to do this. One of my patients yesterday had problems both with acid reflux and very impaired pulmonary function. I advised her to put wood blocks under the front legs of the bed, angling the bed up. Gravity then pulls the abdominal contents down to give your lungs a little more room and make it easier to breath.
Many things contribute to sleep problems. Often we do a sleep study in order to assess more fully sleep patterns, quality, and problems. The physical problem often related to postpolio is sleep apnea or a carbon dioxide retention problem. Otherwise, we look at whether it is psychological issues or medication issues interfering with sleep.
It is important to get as many details as possible about sleep patterns. In the interview process, if Phyllis had said she had trouble sleeping, then is it trouble falling asleep? Staying asleep? Does she sleep but wake up not rested? If it is trouble falling asleep, then it is typically due to pain or mental stress (people worried about something or something’s keeping them awake that they are illuminating over or depression). If you are going to sleep fine but waking up frequently or not rested, these are signs of possible sleep apnea where you are waking up because you are not breathing well or your body is not getting enough oxygen or not processing that oxygen properly. If you wake up and can’t get back to sleep, then you have to look at if it is because when you wake up you start thinking about an unresolved issue. Sometimes medication is wearing off in the middle of the night and then you are waking up. Much thought is needed in order to tease out and treat the actual cause of the sleep problem.
Any fatigue problems? Many symptoms, postpolio-related and otherwise, can cause and contribute to fatigue. I have the patient fill out a fatigue severity scale that I will read to you. The patient marks on a scale of 1 to 7, from 1 being completely disagree to 7 being completely agree, about how much fatigue affects the patient. I use this as a marker for following people because it is a tested instrument on fatigue, a very hard thing to measure in general. The scale keeps tabs on my patients’ fatigue level in terms of their physical complaints and whether our interventions are impacting it. For example, if we had started a CPAP or BiPAP to treat breathing difficulties, after six months we look back and see if it affected the fatigue level.
The statements on the fatigue scale that require your mark are as follows:
· My motivation is lower when I am fatigued
· Exercise brings on my fatigue
· I am easily fatigued
· Fatigue interferes with my physical functioning
· Fatigue causes frequent problems for me
· My fatigue prevents sustained physical function
· Fatigue interferes with carrying out certain duties and responsibilities
· Fatigue is among my three most disabling symptoms
· Fatigue interferes with my work, family, social life
Fatigue can be more than just physical fatigue. It can also be mental fatigue. Further, for anyone who is physically fatigued, it impacts cognitive and thought process. Regarding mental fatigue or cognitive impairment (concentration and retention level and thought processing ability), polio does affect a certain part of the brain called the reticular activating system that keeps you alert and awake. With the polio decline you can sometimes see affect on that part of the brain involving cognitive skills.
In Phyllis’s case one of the things I would really look at is what could be contributing to that fatigue and how much of the physical fatigue may be affecting the mental function, the mental function being due to the PP. So again it is an example of how you really have to tease these things out. One of the ways to establish this is to send the patient for psychological testing, arranging long sessions of testing. If a neuropsychologist then tells you ‘this person does really good early on and then really drops off’’, then you know it is a physical fatigue factor. That means when you are moving through the day the fatigue is more relevant to a change in the brain structure.
What about swallowing difficulties? When a patient reports swallowing difficulties, I send them for a swallowing study that a speech therapist would administer. Commonly, a modified barium swallowing test is used. The therapist watches via radiology how you swallow certain food types and determines the dynamics of the muscles that are interfering with physical function. Advice is given about how to overcome or best adapt to the swallowing modalities.
Any cold intolerance? There are certain factors we assess as to what it may be due to. It’s different things to different people. You want to make sure you are not dehydrated, not hypothyroid or other things that can contribute. Sometimes when someone has quite a bit of PP involvement, it’s a simple fact that to a polio involved limb there is less blood flow because there is less muscle tissue, so there is more cold intolerance and there’s no way to really increase that. The treatment is symptomatic. The best thing to do is use stockings, gloves, a lap blanket, layering of clothes, and so on. There is some really good long underwear on the market for hiking and other sports or activities. That works well.
Do you currently exercise on a regular basis?
How often? (couple times a week) … That is pretty good. There’s very few polio survivors I’d recommend daily exercise for. What type of exercise do you do? (floor exercises & pool exercises) Have you had any injury or problems related to exercise? Exercise is an important issue for polio survivors and often misunderstood if not experienced in treating polio survivors. Exercise of polio patients is quite different from the non-polio population. Further, what muscles are involved by the polio and what are not, and whether minimally involved versus more involved, is selective and individual in each polio patient. The extent is determined through the physical exam and any additional medical tests ordered.
The rule of thumb for exercise is if you have a muscle that is stronger than a grade 3, which is stronger than anti-gravity, then you can exercise it to some extent. Your 3’s and lesser grades you just want to use on an every other day basis and not overuse. That is where I start.
Let’s say that I tell Phyllis she can start exercising using her left leg and her left arm. With that limitation, what exercises can the patient do? Use equipment like the airdyne cycle or similar equipment where you are seated and they are set up so you can use arms and legs, but then your could do it with one arm and one leg or both arms and no legs. Some equipment works for some people, not everybody.
Pilates is a great form of exercise for trunk strengthening, but often polio patients can’t do it because of the muscle imbalances they have or because they don’t have function of needed muscles – abdominal, chest wall, back, the whole body. I use it a lot for spine patients as a great form of exercise.
For people with a lot of polio involvement, often the only place we can exercise them is in the pool. If they do not have access to a pool that is “accessible” (that they can get in and out of), this often just interferes with the optimal. For them we try to design a very minimal program they can do lying in bed or sitting in the chair, that sort of thing.
Sometimes there are exercises that are needed for other problems that I identify during the examination. For instance, if the patient has degenerative spine disease, or the trunk muscles aren’t really involved by the polio, then I’d put the patient on a back program to strengthen the abdominal and pec muscles. There is absolutely no formula for polio patients.
The real key to follow with polio patients as much as possible if I am going to send them to a PT to get started on exercise is to identify therapists who have experience with polio. PTs who do not have that experience always try to overwork people. I make sure the PT knows to watch for those symptoms of muscle twitching and cramping. If you are getting those at the end of the day, you overdid. So you have to go back and tell the therapist “I was having a lot of muscle twitching and cramping. We need to back off.’
Now muscle soreness is a different thing. If you have not been exercising the muscle and are starting to, you may be a little sore. But it shouldn’t be pain that lasts for days and days. Usually the key for starting exercise in a polio patient is start with a very small amount and increase very slowly, much slower than you would with the normal population.
And I tell my patients, if the therapist won’t listen to you, then quit going. Alternatively, ask the therapist if they’re willing to call me and discuss it with me. If they’re not, do not go to that therapist. Do it on your own at home and work through it, and I would coach you through it.
So that is really my assessment of polio-related problems.
When interviewing the patient I ask them about any other current medical problems. I do not know that we want to divulge your medical history in front of the group, so will omit that step in today’s group setting.
Taking any medications? I do get a list of medications. Obviously, that is necessary for a complete medical record, but not only that. Again, Phyllis complains of a lot of fatigue. I need to look at what other medical conditions she has, whether they might be impacting fatigue, causing some of the fatigue she’s experiencing. Are some of those medications known to cause a significant amount of fatigue, and may be contributing? After that we might be able to change medications to lessen some of the fatigue. So we look at all these areas.
Smoking? Alcohol? Depression? I do ask about smoking and alcohol. Smoking takes a huge toll on people if they have been smoking for years and can exacerbate and cause all kinds of other medical problems. How much alcohol? Alcohol is a depressant if someone is drinking rather regularly. That might be causing some fatigue or even causing depression which causes fatigue. I do not know that smoking has a direct relation to depression, but the type of drug they are mixing it with can really cause much depression. Certainly though anyone with physical illness is at risk for depression because illness is a stressor that will cause depression. Depression can arise in situations when you see yourself decline and all the things that go along with that.
Review of Systems questionnaire -- I also have people fill out what we call a “review of systems” sheet. That is like when you go to a doctor and they have a whole list of ‘Have you ever had ……’ you know, fever, chills, change in appetite, that whole list of things. We do that for a screening of other possible diseases. Might you have depression? Thyroid disease? Heart disease? Might there be something going on that has not been identified at this point?
By the time the history is done I have a pretty good problem list – what’s going on with someone’s health, what’s primarily bothering them. In Phyllis’ case, she has obviously had good medical care. A lot of this has been assessed and evaluated and what it is looking like to me is this is classic PPS. But had she not had all the evaluations she has had already, you can see how along the way there might be a lot of things I might be ordering to investigate certain symptoms. And often investigations will lead to other problems that send us down a different route of treatment. In Phyllis’s case, the two primary complaints seem to be the fatigue and loss of concentration and memory, and getting weaker. Yet, when I hear her talking about what is impairing function it sounds like the fatigue is impairing function more than the weakness. Or is it even? OK. Fatigue and weakness.
Next, we would go into the physical exam stage. We are out of time for that, so this will be very brief now and we will have to address this at another meeting like this. [SFBAPS September 2004 Meeting will focus on this aspect.]
-- Stethoscope test
If someone had been reporting symptoms that are concerned about heart or lung disease, I would do the chest/lung exam with the stethoscope. Phyllis is not, so I do not necessarily go through that.
-- Sensitivity test
I do not always test sensation and those sorts of things that a normal neurologic exam would test. But if a person reports to me change in sensation, then I start testing sensitivity. Here Phyllis reported no numbness anywhere, so I may not incorporate that into my exam.
-- Muscle test
The focus of the physical then is a complete muscle test. Again, other than memory and concentration factors, polio affects just strength. What I will do for the polio patient, even if there is no complaint in her left arm, for instance, or someone comes in and says just the right leg and nothing else was affected by polio, I still do a complete muscle test of the whole body. Again, there are often polio-involved areas people do not know about. Should the patient come back in two years and report now all of a sudden an arm getting weaker that was fine before when compared to the previous test, we have a baseline in my records.
I start the examination with the shoulders, as I will here with Phyllis. “Bring your shoulders up, hold them there really strongly, and down. Now bring your arm up to the side, hold it there really strongly. That one’s not full strength. You have arm involvement too. Pull towards you. That muscle’s good. Push out towards me. Good.”
In a physical exam, a normal muscle receives a grade of a 4 to 5. When I have someone who is pretty intact, very minimal polio residual, where all the muscles grade out in normal range, I would make them do more repetitions. If someone has much more polio involvement, not many if any repetitions are necessary. A doctor just does not have the time to do extensive muscle strength evaluations. I can pretty much tell by the quality of the first two contractions how strong that strong is, just because I have done this so much. But if I have someone who says ‘my right leg is getting weaker’ but they tested out completely as 5 from the first run-through, I would make them do repetitions.
The way we grade muscles, grade 1, 2, 3, 4, and 5 are very accurate. Grade 1 is a muscle that has a contraction, but it cannot move through the full range of motion even with gravity eliminated. Grade 2 is a muscle that can move through its full range but only if you can eliminate gravity. So you have to put the person in a position where they are not fighting gravity, then make them move through the full range of the muscle. A grade 3 means you can go through a full range against gravity with a normal joint. Grade 4 means you can go through full range against gravity with a fair amount of resistance. Grade 5 is the supposedly normal.
Now, what is normal? Even in able-bodied people, normal in a 20 year old athlete is not normal in an 80 year old woman. Normal is relative, and that is where you see the discrepancy. There are machines in the gym that can be calibrated and tell exactly how much strength a muscle has, but the machine does not test the functionality of the muscle strength. The machine can only tell how much a person can push with a certain amount of force. It does not tell if the force is enough for that person to get that limb through space, which is the functional movement. Overall, global strength is not as important as function. People who come to see me do so because there is a functional problem, because somehow related to the weakness or pain or whatever else there are things they have difficulty doing. My goal is to keep my patients functional.
I am not going to go through the whole muscle test on Phyllis. But, I test basically from head to toe, lay people down on their back, their stomach, their side, make them do everything in positions where they are having to use the muscles against gravity. When I have a high functioning polio survivor who is testing out with grades like a 5, but they’re complaining the muscles are getting weaker, I have them do repetitions. I have them do heel raises and such. For other people I do not have to do that because they are no where close to that grade of strength.
Often the most important part of my assessment is evaluating gait and watching somebody walk. For upper extremity impaired polio survivors it is not so much gait as much as upper extremity function - what is it you are having trouble doing and then watching the body mechanics, watching really what muscles you are using, how you are moving the joint and what’s happening.
The key issue is why are you having the pain. Often someone will come in with knee pain. I watch them walk; it is because they have a weak quad and they are back bending their knee to stabilize, for years going too far back, compressing the knee joint. That is something we are going to address - preventing the knee from back-bending too far.
From the muscle tests I am going to know that the muscles that pull the foot up are not strong. I watch them walk. Again, those first two steps you might not see the foot drop. But over time that muscle is going to fatigue and you are going to start dragging your foot.
-- Muscle substitutions
One of the things I have learned, especially with a subtle foot drop, is that polio often affects the muscle at the front of the leg, the big muscle that picks up the foot, which we call the tibialis anterior, but it often does not affect the muscle that picks up the toe. So I bet there are a lot of you in here who can pick up your toes which can then pick up your foot. You can pick up your foot with those toe muscles for a while, but then they get tired, and then the foot starts dragging.
If you go into a doctor’s office that is not aware of this and is not doing very careful testing, they’ll say “pull up your foot”. You will pull up your foot with your toes, and they will test it and say it is strong. But unless you isolate and make somebody put their toes down and then pull up the foot, which a lot of people then can’t do, you won’t pick up the fact that that big muscle is missing or is weak. So it’s little things like that that you and the doctor must key into.
There are many substitutes that polio patients have for weak or polio involved muscles they are using. Unless you are very experienced at muscle testing polio patients and their substitutions and really careful about them being in the right position, they’ll trick you. That is where experience comes in. Again, the issue is not always so much the gross strength of muscles. It is what muscle are you using for this? Is it really the muscle that was made to do this? Are substitutions being made? If they are substituting with a smaller muscle, is that going to be able to do this over time? That is what you must look at.
A lot of people get hammer toes as they get older, so it’s not always an indication of using substitute muscles, but it is often times. Many polio patients use their toes for balance and use them to push off. Again often toe flexors are there but the gastocnemius muscle isn’t very strong so they are using the toe flexors for push off.
-- Gait Evaluation
We do not have time for evaluating gait. That is a huge topic. Probably a great part of what I do is watching somebody walk and then the differencing that can occur because of different imbalances. This is where it gets challenging because every single polio survivor is different.
You have to look at how they walk and then look back at your muscle test. Then ask does this make sense? What are they doing? What are they substituting? Why are they doing that? How balanced are they? Do they have weak pelvic girdles where they are having to shift their weight a lot to keep their balance walking? Is that causing a lot of the back pain? Is that causing instability? What are they doing with their knee? their feet? and so. I have people walk a lot. They get fatigued by the time I am done with them most of the time. But it is often looking at it and looking at it, and say “OK, if we make this correction how will it impact the rest?”
-- Bracing
Bracing a polio survivor is not the easiest thing. It’s different for every single person. What I have learned over time is actually brace as little as you can. I see a lot of people who were over braced and then they have this brace they can’t even use and never gets used and of course ends up in the closet and the mechanical gait problem worsens. Or they’re braced at the wrong angle. For instance, for someone who always depended on back-bending their knee for stability when walking, if all of a sudden you correct that and make their knee straight, then they’re not stable and that knee’s going to give out on them. Then they won’t use that brace. You have to allow them to back-bend some, but just how far is the question. There are many things to consider. I’d rather start with a minimal amount of bracing and try to correct some of the mechanics with stretching or strengthening some of the muscles that are not as weak. We can work on strengthening with an exercise program and then reassess whether we have to do any more bracing or not. I think we need to set up another talk to address gait and bracing and have an orthotist present at that time.
--Conclusion regarding physical exam phase
Basically by the end of the visit what I’ve done is formulate a list of problems we’ve identified, what are possible courses of the different systems, what are tests we might need to run to rule out other etiologies, and what interventions do we want to make. Everything depends on the interest and success of the patient the whole time.
If you came to me and said that “all I care about is how strong I am today and whether I am getting worse and how strong I am next year”, then I would look at that. I would send you for specific strength testing and show you out the door. If that is what you want, that is what you would get. But that is not what most people I see want. Most people complain about not being able to move something or pain somewhere or something more along those lines.
I make recommendations. I point out risk areas, discuss changing or tapering activities, and the like. Everybody is different. I really believe that the patient and the physician are a team. It is your body, your life. I do not tell anybody what to do. If you do not want to do it, you do not have to and I will still see you.
Here is the contact information for anyone wanting an evaluation by Dr. Vandenakker:
Carol Vandenakker, MD
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