FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

CONTENTS

January Speaker

My “Adventures”

Medicare

Dental Awareness

Seniors vs. Crime

Dues

Clinical Evaluation – Bracing

Do What I Do – Not What I Say

Special Poem for Senior Citizens

Upcoming Conferences

Welcome

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

JANUARY SPEAKER

Our speaker, Dave Clark, is a unique person who serves as a shining example for others to follow. Dave delivers a feel-good courageous story that will motivate you to fulfill your potential.

Dave talks about how he overcame polio as a young child to go on to have a successful career as a professional baseball player and manager – he has been a scout for the San Diego Padres since 1999.

Dave was originally scheduled to be our September speaker but, thanks to the hurricanes we went through, our September meeting was cancelled.

I heard Dave talk at a Post-Polio Conference last year and found it quite inspirational…. Well worth your coming to the meeting.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

MY ADVENTURES

Well, I’ve completed two months of physical therapy. The shoulder is feeling much better but is still not doing what I want it to. Funny thing is – it never really did…. It is healing but it's a very slow process. It's a polio arm in the sense that I've never been able to straighten out the elbow and also I have no deltoid muscle due to the polio. Also, they took out some lymph nodes when they did the lumpectomy on that left breast soooooooooo, all in all - that "poor" arm has been through the mill. My main problem with it is lifting or stretching the arm upward. Hopefully, as time goes by, it will get better but, if not, I've compensated all my life so I'll just do a little more compensating....

The below website was e-mailed to me by Carolyn Mareb – it gives you quite a bit of information on several different polio topics. Found it interesting – Thanks, Carolyn.

http://www.geocities.com/tvppsg/2.html

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

The following was e-mailed to us right after Thanksgiving by PPSG of S FL.

MEDICARE

Disability Rights Advocates (DRA,http://www.dralegal.org), a nonprofit law center in Oakland, California, is investigating complaints about Medicare’s wheelchair and scooter coverage policies. Please contact them if you

were unable to get a power wheelchair or scooter because you:

-needed it for use outside the home,

-were able to walk short distances, or

-had not proven sufficient upper extremity weakness.

Also contact them if you, for any of the reasons listed above, had to payout-of-pocket for the wheelchair or scooter you needed.

They can be reached at: EMAIL: healthaccess@dralegal.org PHONE: 510-451-8644 FAX: 510-451-8511

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

The following articles are reprinted from the November/December 2004 Elder Update Senior Dental Awareness Week.

GUM DISEASE –

The Main Cause of Tooth Loss

Gum Diseases – sometimes called periodontal or gingival diseases – are infections that harm the gum and bone that hold the teeth in place. When plaque stays on your teeth for too long it forms tartar. This hard covering cannot be brushed clean and instead must be cleared away by a dentist.

Untreated tartar can lead to gingivitis – red, swollen gums that bleed easily – which in turn can lead to the gums pulling away from the teeth and forming pockets that become infected – a condition called periodontitis.

If not treated – or for that matter, prevented – this infection can ruin the bones, gums and tissue that support your teeth. In time, this can cause teeth to loosen requiring your dentist to remove them.

As with most dental health problems, the best way to prevent gum disease is to brush your teeth at least twice a day with fluoride toothpaste, floss once a day and make regular visits to your dentist for checkup and cleanings.

******************

ATTACK THE PLAQUE

To Help Prevent Decay

As we age, our gums tend to recede and in doing so, expose more of the tooth and root surface to plaque. Plaque – the waxy build-up that coats and collects between our teeth and gums – is the main cause of tooth decay. If the plaque is not cleaned away it begins to harden into a stone-like covering called tartar. It is this hard coating which dental hygienists scrape away from teeth in an effort to save them from the damaging effects of tartar.

The build-up of tartar can be avoided, to do so dentists recommend the following:

· Brush your teeth at least twice a day;

· Use a soft brush and brush the teeth on all sides with small round motions and short back and forth strokes;

· Take time to brush carefully and gently along the gum line;

· Remember to brush away the bacteria that may be hiding on your tongue;

· Clean between your teeth with dental floss to remove plaque where toothbrushes cannot reach;

· Use mouthwash to kill the bacteria that causes plaque; and

· If brushing or flossing causes your gums to bleed or hurt, see your dentist.

******************

DRY MOUTH

Can Lead to Serious

Health Problems

A dry mouth is not an abnormal if it occurs once in a while – if a person is nervous, upset or under stress – but when it occurs on a regular basis it can become a serious health concern. Dry mouth is the condition of not having enough saliva to keep your mouth wet, symptoms include:

· A sticky, dry feeling in the mouth;

· Trouble chewing, swallowing, tasting or speaking;

· A burning feeling in the mouth;

· Cracked lips;

· A dry, tough tongue;

· Mouth sores; and/or

· An infection of the mouth.

Dry mouth – which can be caused by disease, radiation therapy, chemotherapy and other factors – can lead to several health problems, including the following:

· Dry mouth can cause difficulties chewing, swallowing and speaking;

· Can increase your chance of developing dental decay and other infections in the mouth; and

· Can be a sign of certain diseases and conditions.

Although dry mouth can lead to health problems, there are things that can be done to prevent it, such as sipping water or sugarless drinks, chewing sugarless gums or in serious cases, prescribed medications.

For individuals experiencing chronic dry mouth it is extremely important to remember to keep your teeth clean by brushing – using toothpaste with fluoride – and flossing every day, as well as avoiding sticky, sugary foods.

******************

ORAL CANCER:

Early Detection Can

Prove Lifesaving

Though perhaps not as well known as other types of cancer, oral cancer is a fatal disease. Currently, only half of all patients diagnosed with oral cancer survive more than five years. However, there are things you can do to detect oral cancer early enough to give you and your dentist the opportunity to fight and win the battle.

What You Should Know About Oral Cancer

· Oral cancer often starts as a tiny, unnoticed white or red spot anywhere in the mouth. Other signs of oral cancer include:

· Oral cancer occurs mot often in those who use tobacco in any form. Alcohol use in combination with smoking greatly increases the risk.

· Still, more than 25 percent of oral cancers occur in people who do not smoke and have no other risk factors.

Regular Checkups Are Important

· Regular dental checkups, including examination of the entire mouth, are essential in the early detection of cancerous and pre-cancerous conditions. You may have a very small, but dangerous, oral spot or sore and not be aware of it.

What to Expect During Your Oral Exam

· Your dentist will carefully examine all areas of your mouth. In the event that your dentist finds a spot or sore that may pose a threat, he may opt to perform a simple test such as a brush biopsy, which is typically painless and can detect potentially dangerous cells when the disease is still at an early stage.

· Be sure to let your dentist know about any sores or spots that you have noticed. Harmful spots or sores often look identical to harmless spots or sores.

Know the Early Signs of Oral Cancer

The symptoms below could be the beginning of oral cancer. Please contact your dentist if you notice:

▪ A sore that bleeds easily or does not heal.

▪ A color change of the oral tissues;

▪ A lump, thickening, rough spot, crust or small eroded area; or

▪ Pain, tenderness or numbness anywhere in the mouth or on the lips.

For more information, please visit the Department of Health Public Dental Health on the Web at http://www.doh.state.fl.us/family/dental/index.html

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Reprinted from November/December 2004 Elder Update newsletter.

SENIORS vs. CRIME:

Beware of Identity Theft

Submitted by a Senior Sleuth Volunteer

Identity theft is a serious behind-the-scenes threat with no phone call to hang up on and no door to close in order to dissipate the risk. The perpetrators of this crime are nearly invisible, leaving elders powerless to stop them. In fact, the best way to prevent yourself from becoming a victim of identity theft is to take careful precautions beforehand.

Begin these precautions by realizing that one’s identity can be easily plucked from their trashcan. Be sure that what you are discarding is actually trash. Trash should only contain material of personal nature if it has been properly shredded. It should never contain anything containing credit card or social security numbers, actual credit cards no longer in use, communications of a personal nature or any pertinent information provided to you by your bank.

Also, be careful not to throw away pre-approved credit card applications, credit card receipts or any other financial or biographical information without shredding it first. As silly as it seems, always think twice before throwing something away. Today’s prospectors don’t dig through in the dirt searching for gold, but through trashcans for treasure on paper instead.

Postal inspectors claim that it can be a virtual nightmare to undo the harm caused by an identity thief. A postal inspector offered these suggestions.

· Remove mail from your mailbox as soon as possible. If you are going to be away from your home, put your mail on hold at the post office or have a neighbor pick it up for you.

· Do not mail sensitive information from your mailbox. A red flag signals not only the mail carrier that there is mail for pickup, but also identity thieves.

· Do not give out personal information over the phone unless you initiated the contact.

· Review your account statements monthly and close any accounts that are not in use. Do not assume that just because you have not used a credit card in years that your account is closed, you must make this request by contacting the issuer directly.

· Order a copy of your credit report at least once a year.

If you have been, or should become in the future, a victim of identity theft, please follow the steps listed:

· Report the crime to the local police or sheriff’s department.

· Contact the three major credit reporting services – Equifax, Experian and Trans Union – and ask that a fraud-alert be placed on your account.

· File a complaint with the Federal Trade Commission (FTC) by calling their Identity Theft Hotline at 1-877-438-4338.

· Call the Attorney General’s Fraud Hotline at 1-866-9-NO-SCAM (1-866-966-7226).

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

DUES FOR 2005:- Please take a look at your mailing label - on it you’ll see the month and year we received your 2004 dues, i.e., 01/2004 means it was received in January 2004, so your 2005 dues was due in January 2005. If your mailing label has the year first and then the month, i.e., 2004/01 it means that you indicated to us in January 2004 that you wanted to receive the newsletter but paid no dues. That’s OK as we still believe that anyone who wants information should receive it – but we do need you to return the tear sheet with either the “Dues” box checked or the “Keep me on the Mailing List” box checked.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

The following article is reprinted from the San Francisco Bay Area Polio Survivors Newsletter, Volume 15, Issue 2, October 2004. Would like to thank Phyllis Hartke, once more, for e-mailing the article over to me so as to save from retyping it. THANKS, PHYLLIS – you are a lifesaver…..

POST-POLIO SYNDROME

CLINICAL EVALUATION

Part 2 of

The Proper Evaluation, Treatment, and Management of PPS [“Bracing” and other issues]

Carol Vandenakker, MD

Director, University of California Davis Medical Center Post-Polio Clinic, Sacramento, CA

and

Howard Davis & Brian DeMain, Orthotists, Hanger Orthotics, Pinole, CA

Presentation at SFBAPS September 18^th, 2004 Meeting.

Transcribed by Phyllis Hartke, SFBAPS President and approved by Dr. Carol Vandenakker.

(Part 1 was printed in SFBAPS’ September 2004 Newsletter)

(Part 2 is printed in this SFBAPS October 2004 Newsletter)

CAROL: When I gave the first half of this presentation in May, I showed you briefly how I do the basic muscle testing and physical examination. We didn’t go specifically through all the muscle testing because it’s a personal thing to do a physical exam in front of an audience. So, what I thought was more appropriate today would be to get into what sort of things I look at as far as the biomechanical changes from polio that are commonly seen in polio survivors; things that might require bracing or changes in bracing or systems devices. This is why we have two orthotists here today, Howard Davis and Brian DeMain, so we can talk about some of those issues in bracing and also so you know a little bit about the subject if someone tells you “I think you need a brace”. Perhaps you might be thinking maybe a brace will help you or that you need a change in a brace. We’re going to discuss some of the principles behind bracing. Why bracing might or might not be necessary. What you can expect from bracing. Take a look at the handout on bracing (included in this SFBAPS newsletter, pg 3).

The exercise guidelines (this SFBAPS newsletter, pg 3) are part of the other recommendations I make at a patient’s initial assessment. I usually talk to patients about what sort of exercise program they are doing and make suggestions in that area. Exercise is a very individual thing so I’ve got guidelines spelled out in the handout but to really be able to make recommendations on an individual basis I would have to see you specifically. The handout on exercise is a guideline so when you are working with a PT or someone helping you set up an exercise program the handout might be a useful sheet to show them as far as principles in polio.

The complete physical assessment is an important part of bracing. Obviously we need to know not just the status of the limb we are thinking of bracing, say if you have a foot-drop or something like that, but also the status of the other limb; things that might affect the area that could and couldn’t be braced, whether or not you could use a systems device, etc. Sometimes the ideal thing is for somebody to use a cane or a crutch but they don’t have the strength in the arm to do it so we have to come up with alternate ways of adapting or modifying body mechanics. When we look at bracing we really want to use it to manage a specific problem. So whether it is a painful joint, a joint that is becoming deformed, a muscle that’s being overused, falls that are occurring, or instability, we’re trying to correct something specific with the bracing that is going to help you functionally, pain-wise, or something to that affect. So, there is a specific goal with the treatment. What we are then going to judge after you get the brace and are using it, is “is that goal met?” or do we need to make modifications.

If you have a joint where there is muscle power around that joint and you can move that joint we try to continue to allow some movement there and not lock it up. In some other medical problems, say like a spinal cord injury where there is not any muscle strength and people aren’t aware of where there limbs are, you have to do a lot more locking of joints just for stability. In polios that’s a different story. You have full sensation. You know where those joints are. You can be allowed a lot more freedom of movement and remain very stable. So we’re trying not to make you really stiff in that robot-man kind of gait if we don’t have to.

Obviously we want to keep the brace as light as possible. Usually there is some degree of proximal weakness as well. Adding a brace always adds some amount of weight to a weak limb so we want to keep that weight minimal. We want to insure that you are safe and independent in mobility as long as possible and that’s probably one of the main goals of bracing.

I know for a lot of patients, psychologically, going into a brace is often a big step, often viewed as a huge step backwards. You know, you fought to get out of braces when you were young and having to accept that you may need a brace again when you are older can be very difficult. But if it means you can walk safely and continue to be independent another 10, 15, 20 years rather than fall and break a hip and be stuck in a wheelchair, then it’s well worth it. And everybody has to come to terms with this themselves. Early on, when we were first learning about PPS I met a lot more polio survivors that were very resistant when you mentioned bracing and “no, no, no way will I ever do that.” Nowadays, because you are all better educated on PPS, I think most polios’ know they might need bracing at some point and by the time I see them, they have come to terms with the idea of wearing a brace again.

There is a list of things I need to cover in the physical exam when I’m looking at a patient and thinking about a brace prescription for them. How much does the person weigh? How active is the patient? How much are they going to be using it, stressing this brace’s materials, what type of brace are we going to use? How strong are the other extremities? Are they able to use assistive devices? I talked about upper extremity strength. Will they be able to put on or take off this brace?

If you get someone a brace that they can’t put on by themselves and they’re living alone, it doesn’t do them much good. Whether or not they have swelling in their legs so that the leg changes sizes through the course of the day, that’s going to impact what type of brace we use. Whether there is any sensory loss. Now with polio you don’t lose sensation but if someone also has diabetes or has had a stroke or some other medical problem where there is sensory loss then we’ve got to take that into account as well. Are there skin problems where we have risk of skin breakdown? And then what is their home or work environment, as far as what kind of surfaces are they walking on, where are they going to be using this brace?

The orthotist I am going to refer you to, (if I have any control over that, and that’s not always the case because of insurance companies nowadays), I want to make sure these guys really know their stuff. And sometimes I don’t know the orthotist; sometimes we just take what we get. If I am sending a patient somewhere that I don’t know the orthotist, I’ll write my pager number on the prescription and say please page me if there is any question about the prescription. Because if the orthotist looks at the prescription and doesn’t agree with me, I’d rather he page me and talk it over with me on the phone than make it his way and then we figure out, “Oh! Maybe that wasn’t right”, or make it my way and I was wrong. I’d rather have that discussion beforehand than try to change a brace later. That’s a lot more difficult, a lot more work. So communication between the physician and the orthotist is very important.

Certainly you want to have a Board Certified orthotist. Here in CA I have not had a problem with non-certified orthotists. I saw a lot more of that in FL. I saw braces made in peoples’ garages. That was interesting. I find that orthotists that have years of experience tend to do better with polio patients. Polio patients in general tend to be more difficult to brace. Not that you are difficult people. You demand more from your brace because you are more active than most patients who would need to wear a brace. You use it more aggressively. And because you have sensation in your limbs, if anything is a little off, you feel it. Most people with other medical diagnosis who have to be braced don’t have any sensation there.

So those two components kind of make you more difficult to fit, a more exacting brace client for the orthotist. So we want an orthotist with patience and the kind of personality where they are willing to assist you, talk to you and discuss things; they need to be able to listen, talk back and forth, decide will this or will this not work, and not just go by the book “Oh no. That’s not the way we learned. It has to be this way.”

That’s what I look for in an orthotist that does well with a polio patient – one that tends to be a little more creative and think outside the box. One with a lot of patience and who’s willing to do modifications because any time you do a brace there is always a little tweaking that needs to be done to make it that perfect fit and be really functional for you. The reason we go through all of this is to improve your function and if it’s not comfortable and it doesn’t fit right, you’re not going to use it so we haven’t gained a thing and spent a lot of good insurance money and our tax dollars, etc. I also tell patients you are not to pay for the brace until it fits right and you can use it.

Sometimes patients were given a brace, it didn’t fit right, and they couldn’t even walk in it. If they took it home, the orthotist would bill Medicare and then sometimes they couldn’t get adjustments made. Then they’d come to me with the brace “made totally wrong” and you can’t get a new one until a year later because Medicare won’t pay for another one. So be aware that, if you take the brace home and say that you are going to try to use it, you may well be stuck with it.

HOWARD – You do have some rights. You basically have three months of warranty through Medicare to go back. If you have problems with it, go back and see your orthotist.

CAROL – Don’t be afraid to be pushy and aggressive. There are patients who just give up. I try to get people back in to see me shortly after they get their fitted brace. Some are afraid to go back to the orthotist for adjustments, feeling they are being too much of a bother. But you know what? The orthotist wants to get it right too. And it’s part of the process. It’s a custom made thing, fitted to you and adjustments are just part of the process.

Let’s start with distal problems.

The simplest thing you would use an orthotic for is foot deformity, by placing an orthotic in the shoe. That would be due to muscle imbalance in the foot or in the lower leg only that would affect primarily maybe a little bit of the ankle position, a little bit of the foot position in the shoe, but could be corrected by modification with support inside the shoe to balance the foot. An example is a real simple arch support to keep a foot from proning/turning this way where there is a weakness of the muscle that pulls the foot in. And typically if you have a foot that turns/falls in a lot, you start to get a lot of pressure on the first metatarsal and you might get deformity of the first toe.

HOWARD – Putting too much pressure on the middle part of your foot, the bone in the middle, which is called the “meticular”, is very painful, because it’s not intended for weight bearing. Then the foot tends to abduct which means move away from the midline in the forefoot which can cause many problems in shoes as well, by putting too much pressure on the outside of your foot. They all go together.

Shoe – buy a shoe that has extra depth to accommodate the foot and the orthotic. High top gives more control and support at the ankle. Here the polio involvement has a lot more collapse at the ankle, you can see the base of the foot is affected and so the weight bearing surface is not the normal shape anymore and so she has to have a custom-made orthotic so it’s cushioned in the right places, supported in the right places, so there’s not a lot of pain with every step. She can’t walk barefoot. When she was young she could. When you’re young you can get away with it. As you get older you wear down those fat pads at the bottom of your feet and the ligaments stretch and you’re walking on bony prominences and that’s when you can’t stand it anymore because it hurts too much. Like Howard said, here small bones in the foot have shifted position, putting all your weight on the bony prominence there. You just can’t walk that way.

HOWARD – If you look at this shoe, which is manufactured by Drew, notice how it is wider over the middle part of the foot. This is a pronator type shoe. It gives you extra support in that area so instead of rocking over the inside of the shoe and risking injury to the ankle it stabilizes it.

CAROL – Most insurance companies, including Medicare, won’t cover just shoe inserts.

HOWARD – Not unless you have diabetes. There are some that do, if it’s a private insurer. This orthotic was covered by Medicare and Tri-care.

An AFO, or ankle-foot-orthosis is used to control and stabilize the ankle because of instability at the ankle and too much medial-lateral movement. There are different types of AFOs. There are very short AFOs that come up just over the ankle bones. They are mostly for stability, medial-lateral stability at the ankle. You can almost accomplish the same type thing with a good high top shoe. They’re not well tolerated in general by adults.

Much more common is the AFO that comes up along the back of the calf. This is commonly used for a foot drop, where the strength of the ankle dorsiflexors, the muscles that take the foot up, is either gone or weak. Classically in normal gait your foot just flops down; when you lift your leg and go forward the foot doesn’t come up so you have to compensate by lifting the leg real high, which is called the steppage gait. If you are a polio survivor and don’t have a strong hip flexor you may not be able to do that. So then there’s other means of compensating.

The main foot ankle dorsiflexor is the tibiallis anterial muscle, the big muscle at the front of your shin. Interestingly enough, polio affects that muscle very commonly but often spares the toe extensors. A lot of people pick that foot up using the toe extensors, so the toes come up every time they pick their foot up. This will work for a while but then the toe extensors get tired because it’s a much smaller muscle. So after a while when you get tired, that foot starts dragging and then you start catching the toe and that’s when you fall. You also might find that walking barefoot is a whole lot easier because the shoe doesn’t interfere with being able to pick the toes up real efficiently.

The foot drop is effectively improved with use of an AFO that is designed to give you assistance with the dorsiflexion. Now there’s a simple bracing type, a PLS splint which is just a lightweight plastic piece that’s kind of flexible and gives a little dorsiflexion assistance. You can kind of push it down with your foot. I’m showing the one Phyllis Hartke wears as an example of one of those.

If you have a pretty strong plantar flexion and some dorsal flexion, you probably want a hinged AFO. With the hinged joint you can spring load it to help with the dorsal flexion. I’m showing the one Stella Cade wears as an example.

If there is more than just the foot drop involved, the AFO can be fit more around the ankle to add medial lateral stability as well. So if the problem at the ankle is not just the foot dropping but turning in to the side, collapsing inward, we’re going to make it more molded around the ankle, covering more of the foot and adding more support, control more of the plantar movement.

HOWARD – That would be more of a reason to go with an articulated AFO vs. a posterior leaf spring AFO.

CAROL- the posterior leaf spring AFO will only add a little bit of dorsiflex assist. It won’t control anything.

HOWARD – The trim lines end up way more in the back of the leg as opposed to wrapping around the leg. Phyllis has a PLF and Stella has the articulated AFO. The PLF is cut way back. It’s very easy to fit into shoes. It’s a thinner, smaller brace. If all you need is a little help with the dorsiflexion, it’s an easy light brace to use. It has flexibility in both wings. It does move both ways. It’s more natural. This particular brace could be flatter, but it’s molded to have more foot control and medial lateral stability. The nice thing about the PLS vs the articulating AFO is you get what is called a kinesthetic minder and ground reaction force from just the stiffness of the plastic. So it will still pick up your toes but it also will create a little bit of an extension force at the knee. If you have a tendency for the knee to buckle forward it helps with that as well but very minimal as opposed to some of the other ones.

ARTICULATED AFO – This type comes more forward around the foot as well as the ankle and so you get more sideways stability. This particular one will allow you to dorsiflex so you can roll over the foot but it stops so it doesn’t let her foot drop. The thing about an articulated AFO such as this is that there is absolutely no additional support to the knee as far as it bending forward and a lot of you have that problem.

I’m showing examples of bad braces an orthotist has made for Stella in the past – basically put her in a cast, so to walk there’s no motion at the ankle here. Sometimes you have to do that if you have a really unstable ankle, which she doesn’t. In general because it affects the natural movement too much, it’s not a good idea. Also, depending on the angle the ankle is set at, if someone depends on a little bit of recurvatum to stabilize the knee, the quadricep is weak, and then they’re given an AFO that does not allow them to go back a little bit, it will collapse the knee with every step. They’ve put on the AFO and can’t walk in it; the leg gives out with every step. Someone did not really look at them walk and know that they need to have that AFO in a little bit of plantar flexion so that the tibia is allowed to go back and the knee go back and we can walk and put weight-bearing on that leg.

HOWARD – Even if you have a brace such as this, which is locked up, you need to be aware of the heel height of the shoe. If you put on a shoe with a little higher heel, that’s going to throw your knee into flexion and make your knee buckle, or if you’re out walking on the sidewalk and you accidentally hit a crack that’s raised, your knee is going to buckle. If you don’t have a strong quad, it’s very hard to walk in an AFO that’s solid. An example of a shoe that’s good for an AFO is a Rockport. It comes with an insole you can remove to give it more depth, it has a nice wide toe box (like tennis shoe, often good), and a nice wide heel (more surface to the ground, more stability). You want to stay away from a shoe with a small heel base because you can change your base of support from 4 inches to 2 inches. When you buy shoes, make sure they have a stiff heel counter because that’s going to control the heel flexion and for the same reason, medial lateral support.

CAROL – An AFO can also be used in somebody who’s backbending the knee. If they’re starting to backbend too far, starting to get pain in the back of the knee, oftentimes you can control that with just an AFO and do not necessarily have to go with a long leg brace. With severe back-bending, a KAFO may be necessary. I have seen 90 degree backbend and on both legs. As an orthotist we are going to want to put you in a little bit of dorsiflexion; if you don’t have experience with post-polio patients that’s what you’ll do, but 9 times out of 10 they need that full extension and a few degrees of hyperextension to achieve stability. Still allowing some hyperextension but not to the point that it hurts.

Most people who get into that situation do so because they don’t have very strong hamstrings or no hamstrings and usually no gastroc either. So there’s no muscle crossing the back of the knee there and that’s why the ligaments keep stretching further and further back. But usually it doesn’t get painful until they get pretty significant degree back and you have to still allow them to back bend to stabilize the knee. You just have to limit how far. Often I’ve seen people come in who have been told that to stop the backbending they have to be braced KAFO (knee-ankle-foot orthotic) and it’s not always true.

HOWARD – I’d much prefer to try an AFO first and add the top piece if necessary. You’re talking a big difference in energy expenditure as well. So if you can get by with an articulated AFO with a stop, then it’s much better. KAFO always has some metal joints and has more shell, so all that adds weight.

CAROL – Before we get to the KAFO, let’s talk about the “old-fashioned” AFO with the metal uprights. The traditional AFO had metal uprights with a calf band and clipped into the shoe in the caliper box. They are heavier than the plastic, which is one disadvantage. The other disadvantage to them being you can’t do as much with controlling ankle position and ankle movement. So if there’s a lot of imbalance around the ankle, controlling that deformity is simply much harder when you have the metal uprights. But the advantage to the metal uprights is that if you have somebody who has a lot of peripheral edema and the leg swells or gets larger and smaller, it accommodates that. If you have one that’s fitted more around, if it’s tight around the leg and your leg swells up during the course of the day, that thing’s pinching real bad and you’re having to take it off because it’s just too tight; it’s uncomfortable. The brace with the metal uprights is also not as hot.

HOWARD – You want to wear some nice cotton socks that come up full height all the way up to the height of the AFO.

CAROL -You can do like Stella does and line your AFO with little pads. The problem with the plastic AFO is, it makes you sweat. Not too bad in the wintertime; when it’s 100 degrees in the summer it’s an issue.

HOWARD – They sell socks, AFO socks, and they even have antimicrobial fibers in them. It’s just a synthetic and cotton blend and it’s got antimicrobial fibers in it and they come either knee height or all the way up if you wear a KAFO. And they come in white and black. They’re kind of pricey; probably like about $35 a pair. You have to get them through a prosthetics and orthotics facility. Medical supply would have them as well.

Long johns work too. A leather-lined KAFO is nice; however, it costs the provider (insurance) more to do this.

CAROL – We can probably compile a list of sock sources.

KAFO – Polio is so unique to other diagnoses. A polio that wears long leg braces (KAFO’s) almost always has bilateral lower extremity involvement. Often the limb has no muscle in it or really no residual functional muscle in the limb. My residents (at UC-Davis Medical School) never cease to be amazed at how well polio patients can walk on a limb that has almost no muscle but they’re still walking with no brace. The KAFOs are often for the people who have significant lower extremity involvement. Or as people are getting older and starting to get knee arthritis or other things where we have to start protecting the knee joint or protecting other areas or the quad is getting over-worked and the knee is starting to give out, these polio’s will eventually go to a full leg brace when they haven’t used one for most of their life.

I try to put that off as long as possible because it is a huge amount of weight on the leg if you’re not used to it. The people who have no muscle in the leg, if you have some hip flexors you’ll certainly notice that it’s a lot of weight to bring that leg forward; if you have none then you basically have to use your whole trunk to swing that leg forward. Or you’ll see people who are using crutches kind of swing their body forward, the fast way to walk.

The main thing with a KAFO is the knee joint and what do you do there. If somebody has no muscle in their leg, usually it’s a lock knee. Then most likely it is the drop lock, where it drops down. You might see someone with a bale lock, that’s a bar at the back, spring loaded lever, so basically when you sit down and push against a chair it will unlock the joint and it will bend easier without your having to bend down and pull these little things up. In someone who has some control of their knee movement, say very weak, and in cases where we’re trying to protect the knee or weak muscles, often we don’t lock the knee joints.

Typically we would put the knee joint right where your normal knee would bend, but if we offset it, meaning make the brace knee behind where your normal knee is, essentially that has the same effect as if you were backbending the knee, making it more stable, so when you stand your center of gravity is in front of the knee joint so that you can stand on that leg and its not going to give out on you; or stand on that brace without it being locked. It is essentially locked because the joint is behind where your center of gravity is. The problem with that is you have to be pretty coordinated or have reasonable strength in other muscles because any shift in weight can cause the knee joint to bend.

HOWARD – The other thing about the posterior offset knee joint is the brace should, in order for it to work properly, come all the way up and have some issue weight bearing so the load is going through the brace and not so much through your limb; otherwise you don’t get the ground reaction force you’re looking for. So you have to come up quite high with the brace on the leg.

CAROL – There are also some new kinds of knee joints that with weight bearing will lock.

BRIAN – Regarding these new joints, they are designed to bend freely when there’s no resistance on it, so in mid-air it bends freely. When your foot is in contact with the ground it puts tension on the joint, and when there’s tension on the joint then it locks.

CAROL – They’ve had them in prosthetics for a while so it’s nice to see them come up in braces.

BRIAN – The price doubles. Typical KAFO would be about 2 ½ to 3 ½ pounds. Metal changes the weight.

HOWARD – Technology is definitely changing. Medicare is paying for computerized knees for above the knee amputees that cost like $45,000. That same research and development is moving into orthotics so we might have some very exciting stuff come up in the near future.

CAROL – There’s a lot more available in the VA system.

BRIAN – The nice thing about these joints is that they are very progressive, but it’s also very complicated and takes a lot of training too. It’s a whole new way of walking. You have to learn to utilize the brace in a whole different way than you might be used to. And so it’s challenging and I think a lot of people are running into problems with that. It just takes more patience and a little more creativity.

CAROL – And it will be like everything else, appropriate for some and not for others. Sometimes you run into someone who really needs two long leg braces but you can’t do it because there’s a deformity at the knee where for example, they’re knock-kneed. You can’t put two long leg braces on them because they could never walk without catching the braces together and they would be on the ground in a minute.

There are so many things you have to look at because with the imbalances of polio and the joint deformities that occur, the whole limb position and mechanics are very different. Some of the bracing that’s done for stroke or spinal cord injury patient, the limb is still intact and its anatomy is still the normal anatomy.

What makes polios so much more challenging is, the anatomy is all different. And every single polio is different. And you have to tease out what you’re working with. So not everything is going to be appropriate for every patient.

The old-fashioned KAFOs with leather have the same advantages as the old fashioned AFOs. I’m not going to talk about the old-fashioned brace with a band that goes up around the hip because they aren’t used anymore.

Usually if you have hip girdle weakness, where you’re dipping to one side when you walk because you can’t support your body weight, basically what happens is, if your hip girdle is not strong enough and you take support off one limb, your muscles can’t hold you and you’d fall over. So what people do is end up leaning to the side; so they don’t fall over they just shift their center of gravity. We’d rather not do all this elaborate bracing around the hip; most people don’t tolerate it because it interferes with dressing and what you wear. The only way to really correct that, (and patients want to correct it when their back starts bothering them from going sideways all the time), we put a cane or a crutch in your other hand. That gives you the basic support you need and keeps you from having to transfer your weight over to the side.

Questions/comments from the audience, & further comments by Dr. Vandenakker:

ANNA VON REICHE, PT, Kaiser Vallejo Post Polio Clinic: All polio patients are not candidates for new bracing. They have been walking in an abnormal way for many years, and you cannot correct that overnight. Some will never be able to wear a brace.

CAROL’s response: That’s a good point to raise. I always do the complete body assessment before even thinking about bracing or changes in bracing because any change affects everything in your body. And there are those whose adaptations in the way they hold their limb or walk to compensate for certain things, basically makes them unbraceable. Some other physician might look at them and say “Oh, you have a foot drop. You need a brace”. But I look at them and say “Oh, we can’t brace you”. Because I know from having worked with polio patients for over 10 years that it’s not going to work. The way you are going to put pressure on the brace or because of limb positions, the brace is just never going to work for you and it’s going to make it worse. So that knowledge comes from the experience of the person writing the prescription.

But other times you get a brace and you’re able to re-learn how to walk or how to move and we follow the bracing with physical therapy. Again, we have to have a physical therapist that knows and has experience with polio. Because we do have physical therapists that think they can strengthen a polio muscle with a grade of one by working and exercising it. That just doesn’t happen with a polio.

So it’s very much a team approach. If something’s not working, go back. Get answers. If something’s hurting or not right, don’t just keep doing it. Find somebody with the polio background to help you.

Let’s talk about the “upper extremities”. There’s not a whole lot that can be done with upper extremities. We brace the lower a lot more because it’s for weight-bearing and ambulation. But we will talk a little bit about other parts of the body.

“UPPER EXTREMITY” BRACING.

Did you have bracing years ago? Initially they were used just to protect the joint when you lost so much muscle around the shoulder – the shoulder being really the joint most often braced in the upper extremity if we’re going to brace. Most polio survivors I see years out from having had polio. Unless they’re having pain in their shoulder or in a joint, I won’t brace.

At times though, when you have loss of the deltoid and the shoulder is subloxed, (when there is a lot of proximal involvement that happens), often the whole limb is involved and you’re not using the limb a lot. If it’s stable, there’s not a lot of weight hanging on that shoulder, it’s not a problem. If there’s preservation of the distal muscles and you still use that arm a lot – Ken Wood would be a good example of this. He’s still got good strength in the forearm and the hand. Ken’s a guy who has no shoulder muscles and he did mountaineering and ice climbing. How, I don’t know. And he’s not having shoulder problems.

But what could happen in a case like his is that the ligaments at the shoulder stretch to the point, (and this could happen also with an injury or a fall), that there’s traction, or the shoulder becomes loose enough that there’s traction on the nerves running through there and it becomes painful. Or you start getting nerve symptoms in the arm. Then we have to worry about tightening up the shoulder.

The one brace I do like to use is basically just like a sleeve that fits over the upper arm and upper part of the shoulder and uses straps across the body to hold it in place. It basically just provides support at the shoulder to hold the shoulder in place. Like a neoprene sleeve basically, just kind of hold the joints snug, like the sleeve you put on your knee or your elbow. It doesn’t impede movement in any way. It moves but just holds it snugger so there’s not as much traction on the ligaments and on the nerves inside. It doesn’t have a name. They are not easy to find. I always have to hunt for one when I need one to fit a patient. We use them sometimes in stroke patients. So that’s what I commonly use in someone with upper extremity involvement because if a joint becomes problematic it’s mostly because the shoulder becomes too far subloxed or out position.

Occasionally, like I was talking to Ken yesterday, he has a little problem at the elbow where he doesn’t have a lot of upper arm strength, more forearm strength, there’s a little bit of imbalance there, I recommended just using an elbow sleeve to keep that a little more stable. And again, it’s in an arm he still uses a lot. In a case where you’re not using the arm much, you don’t usually run into problems.

SPINAL BRACING: Scoliosis is lateral curvature of the spine. So the spine instead of being straight up and down, is curved sideways, like as “S”.

Now as far as imbalance in the trunk and spine and scoliosis – a lot of folks with scoliosis were fused as children. If your spine is fused, you don’t really have to worry about the scoliosis progressing. The one concern is that at the ends of the fusion you may develop degeneration. If it becomes advanced, at some point it may become problematic as far as pain, pinched nerve, those sorts of things.

If you have scoliosis that was not fused, depending on the degree of scoliosis, say if it were greater than 20 degrees, as you age that scoliosis will probably gradually increase very slowly. So it’s something that over time needs to be watched and to be followed as to how fast is it progressing, how bad is it now? Certainly if it is causing pain it needs to be evaluated. If your scoliosis is less than that it usually doesn’t progress at all so it’s not something to worry about. Scoliosis surgery is still done in adults if need be. If it progresses it can also start to impinge on nerves. You will know when that happens because it hurts really badly, of course.

The things you want to do to help your back or try to prevent excessive progression of scoliosis are be careful to do as much as you can to prevent osteoporosis. So you want to make sure you’re taking calcium supplements, doing weight bearing exercise, etc. That is, if you can do weight bearing exercise. And if you have some degree of scoliosis starting,

I strongly recommend stretching exercises for the spine. It seems that when there are some degree of scoliosis, a lot of times you get just ligaments and muscles tightening down on the inside of the curve. You want to maintain that range of motion so that it doesn’t just get tight.

Kyphosis, or this bending forward that you see in some old people, that is the result of compression fractures in the spine from severe osteoporosis. So again, that’s just staying on top of prevention of osteoporosis. Then as you get into menopausal years, start to get your bone density checked. If you’re in the range where you are osteoporotic consider going on something like Fosamax or one of the other agents and have your progress followed by a physician. Fosamax is for osteoporosis and it helps to build bone.

Men can also get osteoporosis but later than women usually. Women are at risk for starting to develop osteoporosis at menopause. They can get it earlier, as can men. Men usually don’t get it until closer to the mid 70’s, 80s.

It’s also important to remember that the more severe your polio involvement is, the higher the risk because your bones didn’t develop as well; so the strong base-line bone density isn’t as good. You men who have significant polio involvement would want to have a bone density test done to establish a base line also.

Question: Are CORSETS useful for preventing or helping the scoliosis?

CAROL: No. But if you don’t have good trunk muscles and you have, for example, just back pain or back discomfort because you don’t have the support there, corsets can help with that. They are more a help for symptomatic relief rather than for changing anything structurally. Actually, they can make it harder to breath.

Scoliosis doesn’t really impair respiration until at about 80-90 degrees. So it has to be pretty remarkable to impair respiration. You can have a lumbar scoliosis, but if you’re talking about sway back, that’s lordosis.

Lumbar stenosis is narrowing of the space in the nerves of the lumbar spine. When it’s at its earlier stages, then doing some cardiovascular conditioning, doing some extension-based exercises may help with the symptoms. It doesn’t really change the stenosis itself, but can certainly help the symptoms because early on a lot of the symptoms of stenosis are due to impaired bloodflow to that area of the nerves.

JOINT REPLACEMENT SURGERY: If someone tells you that you need joint replacement surgery, if that’s in your polio-affected limb, be very wary. That can be a big problem depending on how much polio involvement is in that limb. A polio-involved limb has very little bone strength. That reminds me of a patient I saw in Miami after she had been sent for surgery in the polio limb. They shattered the bone trying to put the artificial knee in, and then tried to fuse it but it wouldn’t fuse because the bone was too bad. She ended up losing the limb. She went from a brace candidate to a prosthetic candidate.

You will find surgeons who want to do surgery on a polio limb, and I advise you to have a polio knowledgeable physician take a look at it first and see if it is a good idea because it could be a recipe for disaster.

That would be true for a hip as well. If you have good muscle around the hip it might be OK to do, but if not it could be a big failure and create an inability to walk. Really have someone besides the surgeon, like someone in PM&R (Physical Medicine and Rehabilitation) take a look at you first before making a decision for a surgery like that. Even if it’s on the good limb, there’s a lot of planning that has to go into it. For instance, how are you going to make it through this surgery? How are you going to be able to function during recovery?” etc.

Same thing applies to a shoulder if it is a polio limb. Shoulder replacement is rarely done. It’s not a real good joint replacement to start with. Shoulder replacements are kind of a last resort.

Rotator cuff surgeries are commonly necessary, but it’s a different situation because it’s a soft tissue surgery. They’re not trying to drill metal into bone like they are doing with a joint replacement. Rotator cuff surgery is commonly needed in polio survivors who have commonly overworked their rotator cuffs. Sometimes there’s not enough rotator cuff to do surgery on if there’s muscle atrophy or it’s too far-gone. After surgery, you aren’t going to be putting weight on that shoulder for a very long time. You have to discuss “How are you going to be doing things? Who is going to be helping you around the house?” Those kind of questions need to be asked and answered, if you have been dependent on that arm for weight bearing. But rotator cuff surgery can be done and is commonly done. You just need to do a lot of planning ahead of time. It takes months to recover. The most important part of a rotator cuff surgery is the therapy afterwards. Surgery is worthless if you don’t go through the therapy. It’s one of the most painful surgeries to go through and most painful rehabs to go through as well. That’s true for able-bodied people, let alone polios.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

This particular article is written by one of our members. Marion has written several articles and we are most grateful for them.

"Do What I Do –

Not What I Say."
(Pride Goes Before A Fall)

By Marion Schoeller

I find post-polio people for the most part to be highly intelligent, creative, open-mined, successful, non-judgemental, and resilient.

There are too many times when we post-polios (myself included), do not practice the advice we tell other post-polios (especially new members of the group) to follow.

We know we should not gain a lot of weight, should not smoke, should not over do anything, should eat better, should take frequent rest periods, use mobility aids if needed and much more.

I was amazed to hear the conversations around the table at the most recent PPS meeting I attended. One lady was lamenting about having to put up Christmas decorations. It sounded as if her loving husband was even encouraging her to continue to decorate until the job was finished (while she was standing up and as long as she was there, she may as well).

Another lady who has been a post-polio survivor for many years and has obvious problems ambulating, recently had a bad fall. She continues to try to walk outside her home in situations where she could easily but accidentally be pushed down, slip on wet floors or just stumble, trip and fall. She does own a scooter. Had she used her scooter, I would guess she would have not had the fall. I recall when I was still only using crutches, how terrified I was of slipping and falling especially after it rained and I had to go to the store or an office. The fear of falling began for me after, while walking with a cane, I fell and fractured my tibia and fibula (both bones of my weaker lower left leg).

I believe that, "a word to the wise should be sufficient. But unfortunately, that doesn't always get through. It never fails to surprise me how stubborn we can be. Is it our ego which prevents us from using mobility aids?

I know that I tend to push myself and overdo activities when I feel especially rested. I also know I have a huge sweet tooth and really enjoy deserts, and will have an alcoholic drink or two.

I don't believe in completely depriving myself of those things I enjoy but moderation is the keyword.

We need to use our intelligence and think what the long-term consequences of how we may be putting our health and safety in jeopardy by our unwillingness to put into practice what we've learned.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

The following was e-mailed to me by several people over the past few months – this particular version is courtesy of Carolyn Mareb – Thank you, Carolyn.

SPECIAL POEM

FOR SENIOR CITIZENS!!

(Not that any of us qualify)

A row of bottles on my shelf
Caused me to analyze myself.
One yellow pill I have to pop
Goes to my heart so it won't stop.
A little white one that I take
Goes to my hands so they won't shake.
The blue ones that I use a lot
Tell me I'm happy when I'm not.
The purple pill goes to my brain
And tells me that I have no pain.
The capsules tell me not to wheeze
Or cough or choke or even sneeze.
The red ones, smallest of them all
Go to my blood so I won't fall.
The orange ones, very big and bright
Prevent my leg cramps in the night.
Such an array of brilliant pills
Helping to cure all kinds of ills.
But what I'd really like to know...........
Is what tells each one where to go!

There's always a lot to be thankful for

if you take time to look for it.

For example I am sitting here thinking

how nice it is that wrinkles don't hurt.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

UPCOMING CONFERENCES

New Jersey Polio Survivors – Annual Conference on April 3, 2005 – Hilton Hasbrouck Heights/Meadowlands Hotel in New Jersey. Watch for details.

Post-Polio Health International – Ninth International Conference – June 2 to 4, 2005 – Marriott St Louis Downtown: Strategies for Living Well. For further information call 314-534-0475 or info@post-polio.org.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

As this is the first newsletter of a brand new year, I thought the following (originally put in our November/December 1995 newsletter) appropriate. It is from my Cousin Donna.

WELCOME

Today is mine.

It is unique.

Nobody in the world has one exactly like it.

It holds the sum of all my past experiences

And all my future potential.

I can fill it with joyous moments

Or ruin it with fruitless worry.

If painful recollections of the past come into my mind

Or frightening thoughts of the future

I can put them away.

They cannot spoil today for me.

Today is the first day of the rest of my life.

~*~*~*~*~*~*~

So, my dear friends, let’s all remember that whatever we do today, will be with us the rest of our lives, and since many of us will have written “New Year’s Resolutions” – let’s try and actually follow them.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

l look forward to seeing you at our January meeting.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP - Vol. 12 #4

12 Eclipse Trail / Ormond Beach, FL 32174 / 386 676-2435

E-Mail:- bgold@iag.net -- Web Site:- home.iag.net/~bgold/polio.htm

JANUARY/FEBRUARY 2005

TO ALL OUR FRIENDS --

A MOST HAPPY AND HEALTHY NEW YEAR 2005

A LOVE FILLED VALENTINE’S DAY

MEETING NOTICE

Support Group I belong to:- ____________________________________________