FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP - Vol. 10  #5

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

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

MARCH/APRIL  2003

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WE  WISH  ALL  OUR  FRIENDS

 

A FOUR-LEAF CLOVER ST. PATRICK’S DAY

A MOST JOYFUL EASTER

-and-

A SESSA (SWEET) PASSOVER

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  MEETING  NOTICE

 

March 16th   --              Rap Session  --  Let us know what’s on your mind….. 

May  11th  --                  OUR TENTH ANNIVERSARY – Dr. Gudni Thorsteinsson

                                      of the Mayo Clinic in Jacksonville’s Post-Polio Clinic will be

                                      our Guest Speaker.     

September  21st  --      Dr. Betty Davis, Volusia County Council on Aging will discuss

                                      various programs available to Seniors.

November  16th  --

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MESSAGE FROM BARBARA

I would like to THANK everyone for the Get Well cards, e-mails and phone calls inquiring as to how I was.  It was most gratifying to know that I had so many friends out there.

Now – I’ve debated exactly how to go about putting down exactly what is happening with me so, here goes…..

I went for my yearly mammogram x-ray in October. Then I received a call telling me I needed to take another one – an ultrasound mammogram.  After that was done I was told that an ultrasound biopsy was needed because there was a small mass in my left breast, and they needed to determine if it was invasive or not.  Well, my doctor told me that although the mass was “only” 1.8 centimeters, it was  invasive. He said it should come out and that a lumpectomy was the way to go.  So, one was scheduled as Same Day Surgery.  I expressed my concerns as to whether or not lymph nodes and/or ancillary nodes would need to be taken as my left arm and hand are used to do many things that my right hand (afflicted by polio and pps) and arm can’t do.  He assured me that as little as possible would be taken out.  True to his word only a few were taken out and the pathology, after the surgery, came back that everything was clean. Next came the radiation therapy – in speaking with the doctors (both the surgeon and radiologist) before the lumpectomy, I opted to have a aggressive form of radiation done – called “MammoSite”.  This is done by having a single balloon catheter inserted through a small incision into the cavity created by the removal of the tumor.  Treatment duration is five days – twice a day (with a six hour interval between the treatments).  Each treatment is approximately an hour.  At the end of the last radiation treatment the catheter is removed.

I am now in the final chapter of chemotherapy.  I required a total of four treatments in all -- the final one to be on March 13th.  I am typing this a week before  the second chemo treatment is scheduled as it takes time to do this newsletter, get it Xeroxed, labeled, folded, and mailed to you – I am delighted to report that, so far, I’ve had no side effects from either the radiation or the chemo.  I have been told that my hair will come out so, if at the March meeting you see me wearing a hat, you’ll know that’s what happened.  I do know that the hair comes back, usually thicker, darker and curlier than ever.

Now you know why the November meeting was cancelled and why the last newsletter was not really a newsletter.

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OUR TENTH ANNIVERSARY

          Well, believe it or not, May 2003 will be our Tenth Anniversary.  Dr. Gudni Thorsteinsson, Director of the Mayo Clinic in Jacksonville, will be our Guest Speaker.  His topic will be:-  : "Post Polio Syndrome:  Things we want to hear and things we do not want to hear".  We will be meeting at the Red Lobster Restaurant as we have been the past year or so.  Seating will be limited to 50, so please get your reservation in as soon as possible.  You will find two reservation forms in this newsletter --- one for our March meeting and one for our TENTH ANNIVERSARY. 

     Any questions, don’t hesitate to call Barbara – 386-676-2435.

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Reprinted from an e-mail received some time ago but most appropriate…..

JUST FOR TODAY!!

--Smile at a stranger.

--Listen to someone's heart.

--Drop a coin where a child can find it.

--Learn something new, then teach it to someone else.

--Tell someone you're thinking of them.

--Hug a loved one.

--Don't hold a grudge.

--Don't be afraid to say "I'm sorry."

--Look a child in the eye and tell them how great they are.

--Look beyond the face of a person into their heart.

--Make a promise, and keep it.

--Call someone, for no other reason than to just say "Hi."

--Show kindness to an animal.

--Stand up for what you believe in.

--Smell the rain, feel the breeze, listen to the wind, enjoy the sun.

--Use all your senses to their fullest.

--Cherish all your TODAYS!

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DR. ANNE GAWNE

The following was sent to me last month by the head of the Atlanta Post-Polio Support Group.  I’m sure most of you know of Dr. Gawne’s passing, but still thought it appropriate to put this in our newsletter as she was such a good friend to us.

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It is with deepest regret that I inform you that Dr. Anne Gawne died this past Saturday.  Information is sketchy, but I have been informed that she died of a heart attack.  She is survived by her husband and two teenage children.  A memorial service will be held at Georgia Hall on Monday, December 23, 2002 at 2:00 PM.  Sylvia and I will be traveling to Warm Springs for the service.  I am sure that her family would welcome all who can attend.  If I remember correctly, Dr. Gawne was in her early 40's and had no history of heart disease.  From what I have been told, this was a complete shock to everyone.  Dr. Gawne was one of the most selfless and giving doctors I have ever known.  She had deep concern for all of us who are polio survivors.  I was privileged to get to know her more personally in the past couple of years, and I was deeply touched by her concern and empathy for polio survivors.  Not only did she give freely of her time to APPA, but she was responsible for the Warm Springs Polio Support Group.  She was the editor of their newsletter, planner of their activities and organizer of their programs.  Members of that group are devastated by this news.  She will be sorely missed by all of us.  Linda Priest 

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We also offer condolences to the family of our long-time member RICHARD DUFFNER who passed away last month.  May they only know happy times from now on.

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DUES FOR 2003-  Please take a minute to look at your mailing label  -  on it you’ll see the month and year we received your 2002 dues, i.e., 01/2002 means it was received in January 2002, so your 2003 dues was due in January 2003. If your mailing label has the year first and then the month, i.e., 2002/01 it means that you indicated to us in January 2002 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.

          Your dues covers the supplies we need to send out the information packets to all inquiring about Post-Polio Syndrome, any other correspondence we do, and postage for publicity and for the out-of-country (33) newsletters that we send out.  We’re fortunate in that the “Free Matter for the Blind and Physically Handicapped” status takes care of the postage for the over 450 newsletters sent out within the United States.  We network with approximately 60 other support groups throughout the United States, Australia, Canada, England, Israel, New Zealand, Portugal, Sweden, Taiwan and Wales – some 40 of these reciprocate by sending us their newsletters.  We receive as many dues checks from our out-of-state members as we do from our Florida members.  So, please check your mailing label and return the tear sheet if your date is due.  We really need your support now more than ever. 

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WHEN YOU MOVE

PLEASE be sure to send us your new address.  Sometimes the post-office will return the newsletter to us with a “forwarding period expired” notice on the front with your new address but most of the time they are just returned to us with “address unknown” on it.  SO, if you want to continue receiving the newsletter it is UP TO YOU to make sure we have your new address.

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Reprinted from Colorado Post-Polio Connections, Fall, 2002

GAIL’S TIPS ON ORGANIZING TO SAVE ENERGY

Ÿ       Nutrition is important for feeling well.  Do meal preparation (chopping veggies, measuring recipe ingredients, thawing out meat, preparing nutritious snacks) first thing in the morning before energy runs out and the temptation to grab anything sets in.

Ÿ     Use carrying totes to save steps (I use one for cleaning products, one for common cooking ingredients, and one for my drawing supplies).

Ÿ       Make “to do” lists for the day and the week.  Then prioritize.  Which tasks are important, which can be delegated, which can be done at a later time?  Don’t forget to schedule sin at least one thing you really enjoy doing every day.

Ÿ       Schedule rest breaks.  (I have at least two scheduled, one for morning, one for late afternoon and I usually need at least 30 minutes of down time.)

Ÿ       Going out in the evening?  Plan time to rest, rest in the afternoon.

Ÿ       Errands can be exhausting.  Keep a list of items that you run out of or need.  Then plan errands carefully.

Ÿ       Entertaining?  Organize a potluck dinner, preferably in the park!

Ÿ       Need to make decisions?  Do tasks that need careful thinking in the morning (or whenever your energy level is highest.)  Don’t be afraid to use the phrase, “I’ll think about it.”

Ÿ       Carry a backpack rather than a purse.  (Purses tire out my arms quickly).

Ÿ       Bring one item in your backpack that will make you happy (a good book, sketch pad or crossword puzzle) in case you have to wait, need a break, or can’t keep up with your companions.

          Simplicity.  The less “stuff” you have, the less energy it takes to take care of it.  (My favorite simplifying book is Living the Simple Life by Elaine St. James.)

FECPPSG Editor’s Note:-  I have found that wearing pants with pockets is the best that we can do for ourselves.  Instead of a purse or backpack I have a changepurse that holds my money (I try to avoid change), my driver’s license and two or three credit cards (Discover, Burdines Master card, and Dillards).  If I find its necessary for me to carry a purse, I use a small one – I try to use soft cover books as they weigh less and you may be able to insert them into your purse.  Since my minivan has a remote, I keep the remote in this changepurse, allowing me NOT to have to carry keys with me – they are in the pocket of the car door, easy to locate when I get back into the car.

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Reprinted from San Francisco Bay Area Polio Survivors, Volume 2 Issue 2, October 2002.

POLIO MADE FROM SCRATCH

First ever virus synthesized from chemicals alone.

                                                By Tom Clark      www.nature.com     12 July 2002

Chemicals and a computer:  all you need to make a virus.  Using genetic code as the recipe and carbon-containing chemicals as ingredients, researchers have made infective poliovirus entirely from scratch.  This is the first time that a working biological entity has been made using chemistry alone.

          The team behind the achievement claim that it demonstrates the risk of further viruses being created from just their genetic code – by bioterrorists, for example. Other virologists are skeptical.

          Compared with living things such as bacteria, animals and plants, viruses are rudimentary – even their status as organisms is debated.  Building complex life forms from scratch, at least using current technology, is still regarded as impossible.

          Eckard Wimmer of the State University of New York in Stony Brook and his colleagues assembled large chunks of the poliovirus genome by joining up the four chemical subunits of DNA in the correct sequence.  They put this synthetic virus genome into “cell juice” – a mixture of protein-building molecules and catalysts – and watched the virus assemble itself.

          The re-engineered virus infected mouse cells just as a normal poliovirus would and successfully replicated itself in them.

          “It’s a beautiful study,” says virologist Olen Kew of the US Centers for Disease Control in Atlanta, Georgia.  The individual steps of Wimmer’s process, such as manufacturing the sequence, and growing a virus outside a cell, had been demonstrated before.  “The strength of this study is its having strung them all together,” explains Kew.

Open season?

          The gene sequences for ebola, influenza, smallpox, HIV and many other viruses are publicly available on the Internet.  Wimmer argues that it could now be open season for rogue virus engineers.  “You can make any virus from published data,” he says.

To do this with larger viruses would be very difficult indeed.  Olen Kew, US Centers for Disease Control.  But poliovirus is easier to build than many others.  It has a very short and simple genome and assembles itself directly from a DNA template; others go through intermediate translation stages.

          More complex viruses could be synthesized, Wimmer believes, by additional chemical steps, or by putting synthetic gene sequences into living cells.

          The likelihood of anyone trying this is tiny, thinks Kew.  The poliovirus genome is 7,500 subunits long; that of smallpox is more than 24 times longer.

          Synthesizing larger viruses from scratch would be “very difficult indeed”, he says.  Making the building blocks would demand new technologies and lots of money.

          “This is not something you could do in your garden shed,” agrees Neil Berry, who studies HIV at Britain’s National Institute for Biological Standards and Control in Potters Bar.

          Says Kew:  “Once any new sequence is published it’s clear the virus can be recovered but we’ve assumed that for about 20 years.”

References

Cello, J., Paul, A.V. & Wimmer, E. Chemical synthesis of poliovirus cDNA: Generation of infectious virus in the absence of natural template.  Science published online, doi:10.1126/science.1072266 (2002).

© Nature News Service / Macmillan Magazines Ltd 2002

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Reprinted with permission from Dr. Mary Westbrook who has a regular column entitled ‘Polio Particles” in the Newsletter of Post-Polio Network (NSW), December 2002.

Polio Particles11

By Mary Westbrook

 

Polio endgame

The World Health Organization announced in May that there were only 537 cases of polio worldwide in 2001, down 82% from 2000. The number of countries reporting polio had halved from 20 to 10.  Polio was endemic in over 125 countries in 1988 when the campaign against polio began.  A fascinating website www.endofpolio.org  is packed with information on the challenges and strategies of the campaign. A few of the tidbits that caught my eye were that there are 20 million people alive today who are disabled by polio, that the total cost of the eradication campaign through to 2005 will be less than 3 billion US (the amount Americans spend on coffee every two months) and that since 1999 nearly 2 billion doses of vaccine have been produced annually. A batch of vaccine takes 12-18 months to make. If it is to retain its potency, it needs to be kept cold, a problem in hot war-torn areas often lacking electricity. Until the mid 90s health workers had difficulty determining whether a vaccine was still potent. Then the invention of a vial monitor (specially treated circles on vaccine vials that turn dark as the temperature rises) eliminated the uncertainty resulting from power failures, hot days etc. Vaccine wastage was reduced by around 25%. On the website a photograph from Sierra Leone’s first national polio immunization campaign in 1999 shows five men wearing ‘Kick Polio out of Africa’ T-shirts over military fatigues. Unexceptional unless you know who they are leaders of the country’s five main warring factions. They were together for the first time.

One of the problems not mentioned on the website is that the statistics WHO quotes are often unreliable and sometimes wildly wrong according to an article by Sanjay Kumar in New Scientist (19/11/01). ‘National level immunization figures are a myth’ says virologist T. Jacob John, advisor to the Indian state of Kerala. He said ‘year after year’, India reported vaccinating hundreds of thousands more children against polio than the number of doses the country purchased. Often health workers have been threatened by punishment if they do not meet targets. WHO is revising its estimates after looking more critically at the data countries submit (e.g. 106% of children in a country could not have received their first dose of a vaccine in one year) and comparing data with findings from independent surveys.                

Last European ever to contract polio?

In November 2001 WHO declared polio to have been eradicated in Europe, after the continent achieved the goal of three years without an indigenous case of the disease. Polio did enter Bulgaria and Georgia from India during this period but the virus was quickly eliminated. Europe is the third region of the world to be certified polio-free; the Americas were in 1994 and the western Pacific in 2000. The last European case was two-year-old Melik Minas who lived in south-east Turkey. He was never vaccinated and contracted polio in 1998 (Guardian 27/6/02).

Polio survivors’ falls

Falls have been shown to be more frequent among polio survivors than their ablebodied counterparts. Silver and Aiello recently reported that 64% of survivors they researched had fallen within the last year and that 61% of their falls required medical attention while 35% caused  factures. Age was not related to likelihood of falling but a tendency to trip was (published in the Archives of Physical Medicine and Rehabilitation, 2002). An Australian study of risk of falls among polio survivors by Lord, Allen, Williams and Gandevia appeared in the same journal this year. They found that survivors who fall more frequently have weaker lower limbs and greater postural sway. The latter was measured while subjects stood on a foam rubber surface. The authors concluded that the association between muscle weakness and falls is mediated to a large extent by decreased stability.  And as any survivor with a history of falls knows once you start to fall you usually lack the muscle power to do anything to halt your fall.

Aussie polio survivor created modern swimsuit for women

Swimming champion Annette Kellerman was born in Sydney in 1888. After childhood polio left her with leg weakness she was encouraged to swim and by the age of 10 she was winning competitions. When she was 14 the family moved to London where her father determined to make money from her skills. He announced that Annette would swim 26 miles along the Thames, an unheard of feat at that time. Annette succeeded, wearing a man’s tight-fitting, shoulder to hips, one piece swimsuit that left legs, arms and neck bare. At that time women swam in dress and pantaloon combinations. Annette performed as The Diving Venus in vaudeville shows at the London Hippodrome wearing her costume. However when she wore it in Boston in 1907 the police were called and Annette was charged with indecency. Following her court appearance Annette sewed sleeves, stockings and a neckpiece to her costume. By 1910 Kellerman’s original costume, plus legs to the knees, had become accepted swimwear for women. She starred in a 1914 Hollywood film Neptune’s Daughter in which her skinny-dipping scenes caused further scandal.  A film about Annette’s life, Million Dollar Mermaid, starring Esther Williams was released in 1952.

Polio survivors bring lawsuit against theatre

Margo Gathright-Dietrich and Bonnie Bonham, wheelchair users due to PPS, have filed a federal lawsuit against a theatre in Atlanta claiming that it violates the Americans with Disabilities Act. According to the Atlanta Journal (25/7/02) the lawsuit claims that the theatre: Segregates disabled patrons into inferior seating locations—either at the far back or extreme sides—and frequently charges the highest ticket prices for these locations; Provides a ‘handicap corral’ at the farthest possible distance from the stage that accommodates fewer than nine wheelchairs; Provides people with disabilities poor access to concessions, restrooms and other amenities; Requires some disabled patrons to come to the theatre ticket office and pay for their tickets in cash, while allowing non-disabled people to charge their tickets over the telephone; and Provides some wheelchair accessible seating in aisles that are sloped, making it dangerous and uncomfortable for these patrons. Bonnie says she was reduced to tears after an irate usher scolded her because she objected to not being able to sit next to her husband at a show.

Siblings of polio survivors

A Norwegian study titled, Education, occupations, and perception of health among previous polio patients compared to their siblings was published in the European Journal of Neurology (May, 2002). The researchers, Farbu and Gilhus, found that the educational levels of the 168 survivors and their 239 siblings did not differ but survivors experienced reduced professional options. Survivors were less likely to be in full time employment at the age of 40 than were their siblings. Compared to siblings more survivors lived on their own. Survivors rated their total life situations and general health as poorer and reported more frequent pain and tiredness than did their siblings.

‘Polio Man’, silent polio carrier

BBC news (22/7/02) reported the case of a European man in his late 20s, referred to as ‘Polio Man’, who is carrying the polio virus but has not developed the disease even though he is immunodeficient. It is thought that Polio Man originally received the weakened form of the virus in the Sabin vaccine and somehow this mutated in his body into the full-strength natural virus. Doctors were alerted to his case in 1995 when conducting a study into gastric problems associated with immunodeficiency. One test during the study involved analysis of the man’s faeces and this revealed the presence of polio. It appears he may have been excreting the live virus for over 20 years. The head of Virology at the UK National Institute for Biological Standards and Control said: Although there is no official record that anyone has caught polio from him, it is a possibility. Unvaccinated children could be at risk of contracting polio if their mothers have not passed on antibodies. The man is not likely to be in contact with small children. The case is very relevant to the ongoing debate about how necessary vaccination programs will be after the ‘elimination’ of polio. I liked a comment by virologist Professor John Oxford, No vaccine is safe but it’s a damn sight better than the real disease.

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AVOIDING GOING

TO THE DOCTOR

By  Margaret E. Backman, Ph.D.

 

    Polio survivors have had a lot of experience dealing with the medical establishment.   However, with age comes new medical conditions that need to be attended to as well. Having had your fill of going to doctors, you may avoid following up on these other health-related problems.  The anxieties associated with your past experiences with polio may resurface when you are confronted with new medical problems.

Physicians often wonder why patients wait so long before coming to see them. There are many reasons, which are tied to how people perceive their conditions, as well as their characteristic ways of handling anxiety, and their past experiences with illness and disability.   These reasons or rationalizations are outlined in the   Reasons for Delaying Going to the Doctor you’ll find at the end of this article.

THE FEAR OF KNOWING

The fear of a “bad” diagnosis and treatment can strongly influence the decision not to go to the doctor.  Yet with some medical conditions, the loss of time may give the disease time to progress.  The delay may in effect cause the feared extensive treatment, the feared pain, and the feared disfigurement.  Although most people know this intellectually, putting off going to the doctor is a common occurrence. Some people wonder if the doctor will consider them a hypochondriac, vain, or someone who is wasting their precious time.

“Maybe it’s in my mind.” 

“Maybe it will go away.” 

“I’ll go to the doctor later when I have more time.”  

LEARNING TO COMMUNICATE

As a patient you may be worried about things that your doctor has not even considered?

 “Will I suffer?  Will I be in pain?”

 “Can I afford it?  Will my health insurance cover this?”

 “Will I be incapacitated?”

“Will I be able to work during treatment and after treatment?” 

“How will I be able to take care of my family?”

  “Will I be disfigured?”

  “Am I going to die?”

          Prepare your questions before-hand and write them down.  Then you will be able to ask your questions when you see the doctor and not get distracted by your anxiety.

When appropriate, don’t hesitate to get others involved, such as family and friends.  Let them come to appointments with you, so you will have four ears instead of two. As many of you have already done with your PPS, educate the supportive others about the medical condition and what to expect.

But bear in mind that family and friends have their own personalities and coping strategies. They also have their own limits regarding how much they can take on, both practically and emotionally. Since these people are not acting as professionals, in trying to be supportive they may inadvertently add to the problem.

In trying to alleviate anxiety—yours and their own--significant others may say, “Don’t overreact”, and thus add to the denial and delay in seeking treatment. Or the contrary, their persistent urging that you see a physician may set up more resistance on your part. 

 Bearing all this in mind, working as a team--with physicians, mental health providers, and significant others—is a good way to increase communication and avoid unnecessary delays in getting treatment.

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REASONS FOR DELAYING

GOING TO THE DOCTOR

 

Lack of accurate information about one’s condition.

Procrastination – feeling that treatment is not urgent.

Wish to avoid the expense of medical treatment.

Responsibilities related to self, family, and work.

Other medical conditions given priority.

Memories of your own or others’ illnesses.

Distrust of the physician’s competence or skill.

Personal dislike of the physician.

Fear of pain and disfigurement.

Fear of finding out that one has a serious, perhaps fatal illness.

Normal coping mechanisms, such as denial, avoidance, and anger.

Underlying psychiatric disorder which interferes with perception and judgment.

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Margaret E. Backman, Ph.D. is a Clinical Psychologist specializing in Health Psychology.    She is on the Faculty of the New York University Medical Center and has a private practice in psychotherapy in New York City.  Dr. Backman is the author of the book:  The Psychology Of The Physically Ill Patient, published by Plenum Press.

FECPPSG Editor’s Note:-  Dr, Backman was kind enough to send this to me for our newsletter when I wrote asking her for an article.  Thank you, Dr. Backman.  Some of you may remember that she was a speaker at our December 2000 Conference.

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UPCOMING CONFERENCES

April 5 – North Central PPSG, Ocala Ramada Inn, Exit 354 off I-75, Ocala, FL. Topic:- Post-Polio Syndrome:  What Can I do to Make a Difference?  Key Speaker:-  Dr. Richard Owen, Emeritus Medical Director, Sister Kenney Institute, Minneapolis, MN

For further information call:  Carolyn Raville – 352-489-1731

April 26/27 –- New Jersey Polio Network, Lafayette Yard Marriott Hotel, Trenton, NJ.  Key Speaker:- Dr. John R. Bach, Medical Director of the Center for Ventilator Management Alternatives at University Hospital (NJ), Professor of Neurosciences, and Professor of Physical Medicine and Rehabilitation at UMDNJ – New Jersey Medical School.  For further information call:  Joan Swain – 201-845-6860

May 16/17 – Triad PPSG, Embassy Suites, Greensboro, NC.  Topic:-  “It’s Now or Never, Only You Can Choose How You Feel”.  Key Speaker:-  Dr. Julie Silver, International Rehabilitation Center for Polio at Spaulding Clinic, MA.  Dr. B. Thomas Brown who was a speaker at our December 2000 conference will also be a featured speaker there.

For further information call:  Jenny Danielson – 336-373-1122

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Reprinted from www.post-polio. Org with permission of Gazette International Networking Institute (GINI), 4207 Lindell Blvd., #110, St. Louis, MO  63108-2915.  Selma Calmes, MD Chairman and Professor, Department of Anesthesiology, Olive View-UCLA Medical Center, Sylmar, California

SUMMARY OF ANESTHESIA

ISSUES FOR

POST-POLIO PATIENTS

          Polio results in widespread neural changes, not just destruction of the spinal cord anterior horn (motor nerve) cells, and these changes get worse as patients age.  These anatomic changes affect many aspects of anesthesia care.  No study of polio patients having anesthesia has been done.  These recommendations are based on extensive review of the current literature and clinical experience of these patients.

1.  Post-polio patients are nearly always very sensitive to sedative meds, and emergence can be prolonged.  This is due to central neuronal changes, especially in the Reticular Activating System, from the original disease.

2.  Non-depolarizing muscle relaxants cause a greater degree of block for a longer period of time in post-polio patients.  The current recommendation is to start with half the usual dose of whatever you’re using, adding more as needed.  This is because the polio virus actually lived at the neuromuscular junctions during the original disease, and there are extensive anatomic changes there, even in seemingly normal muscles, which make for greater sensitivity to relaxants. Also, many patients have a significant decrease in total muscle mass.  Neuromuscular monitoring intra-op helps prevent overdose of muscle relaxants.  Overdose has been a frequent problem.

3.  Succinylcholine often causes severe, generalized muscle pain post-op.  It’s useful if this can be avoided, if possible.  There is no experience with Raplon yet.

4.  Pain is often a significant issue.  The anatomic changes from the original disease can affect pain pathways due to “spill-over” of the inflammatory response.  Spinal cord “wind-up” of pain signals seems to occur.  Proactive, multi-modal post-op pain control (local anesthesia at the incision plus PCA, etc.) helps.

5.  The autonomic nervous system is often dysfunctional, again due to anatomic changes from the original disease (the inflammation and scarring in the anterior horn “spills over” to the intermediolateral column, where sympathetic nerves travel).  This can cause gastro-esophageal reflux, tachyarrhythmias and, sometimes, difficulty maintaining BP when anesthetics are given.

6.  Patients who use ventilators often have worsening of ventilator function post-op, and some patients who have not needed ventilation pre-op have had to go into a ventilator (including long-term use) post-op.  The marker for real difficulty is thought to be a VC &60; 1.0 liter.  Such a patient needs good pulmonary preparation pre-op.  Another ventilation risk relates to obstructive sleep apnea in the post-op period.  Many post-polios are turning out to have significant sleep apnea due to new weakness in their upper airway muscles as they age.

7.  Positioning can be difficult due to body asymmetry.  Affected limbs are osteopenic and can be easily fractured during positioning.  There seems to be greater risk for peripheral nerve damage (includes brachial plexus) during long cases, probably because nerves are not normal and also because peripheral nerves may be unprotected by the usual muscle mass of tendons.

Please feel free to contact me (Dr. Calmes) – pager 818-529-0325, office 818-364-4350, e-mail shcmd@ucla.edu – if you have any questions.  This brief summary may not cover everything you want to know.

FECPPSG Editor’s Note:-  You might want to add this to the Anesthesia Article we had in our newsletter some time ago.  If you would like a copy of the original article, just give us a call or an e-mail.

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The following article was written for us exclusively by our support group member, Mark Ravenscraft who resides in Tallahassee.  Thanks, Mark…..

TIME TO ROOMBA!!!

Most all of us have heard the expression, “clean sweep.”  Little did we know our lives would get easier with the advent of the robotic vacuum cleaner?  That’s right – Robovac has arrived! Better known by its brand name, ROOMBA, this modern wonder came into my life recently. This is not a product endorsement (though it sounds like one), but rather a story about a man (me) and his new toy!

During the holidays someone gave me a gift from Brookstone.  It didn’t work very well and I took it back for a refund.  “No can do,” said the store manager, we need the person’s credit card number and we will only issue a credit to them.”  How many of you have been in the same boat – wanting to exchange a gift, but not wanting to hurt the gift giver’s feelings.  So, I asked the person at the store if I could select another item and pay the difference.  They said I could.  It turns out I had a $180 gift buying credit to select something else.  This always feels like spending funny money, because you never had it in the first place.  I asked the sales person what he thought was a neat new product and he showed me this robotic vacuum cleaner – the ROOMBA.  It was priced at $200 (which I would never spend on myself normally), but I figured what the heck – here’s the extra $20, give me the gadget!

Home I went, anxious to introduce my off-white carpets to my newest mechanical friend!  Out of the box it looks like a round, flatter version of R2D2 encircled with a rubberized bumper.  Nickle Hydride rechargeable batteries last for a 60-minute vacuuming stint and take about twelve hours to recharge.  A large room (17’ X 14’) can be finished in about 45 minutes. There is a light indicating battery charge status.  

No replacement bags to worry about – the dirt reservoir holding tank is plastic and easily slides out for emptying.  The unit is lightweight (under 7lbs.) and easily stored.  The brushes on the bottom are easy to clean. The whole thing can be wiped off with a damp cloth.  It has enough suction to pick up a quarter and most small things that fall on the carpet.  It also vacuums wood, tile, linoleum or vinyl floors.  If you have (as I do) large throw rugs with fringe edging, you must turn the fringe under so it doesn’t get caught in the mechanism.  No harm done if it does get hung up, a beep will sound until you come and rescue it from the clutches of your fringed carpet. 

How does it work?  It moves according to an algorithm swirl pattern, back and forth, round and round like a spinning top until it hits something in its way. Then its sensors cause it to circle the obstacle and spin away until it reroutes itself.  Watching it, you would think it couldn’t possibly cover the whole room, but it will seek out every surface area in a room until it vacuums everything, except the extreme right angles in the corners.  Since it is round, it cannot get into the corners, but then neither did my Hoover!  Overall, this little robot vacuums better than anything I’ve ever seen.  The first time I used it I emptied the reservoir four times. This proved to me it picks up very well.  I use a power wheelchair so lots of dirt gets tracked in from the outside.  I keep one of those servette handsweep butlers (like they use in restaurants) in every room in the house just to keep things neat and trim, but now I have a robot partner that does an even better job.

Amazingly, when the Roomba approaches a stairway, the unit turns away and avoids the step!  Nevertheless, users need to watch balconies and other places where the unit might fall.  It comes with a laser beam that you can set up to throw a 13ft laser beam across an opening.  This acts just like a wall and when the Roomba bumps into the beam it will backup and swirl in an opposite direction.  This allows you to prevent the unit from leaving an area you have designated for vacuuming. It has a flip up carrying handle and the push button controls are right on the top. You can leave the unit to do its work unattended, but not around children or pets.  If the Roomba gets stuck under something or between objects it will stop and beep (politely) for help.  If no one is around it will shut down to save its battery.  Overall it behaves much better than my kids did and they never wanted to vacuum!

Maintenance is easy.  There is a small replaceable filter (two extras come with the unit).  It should be changed every six months or so depending on how much you use the vacuum. The dirt reservoir tank snaps out and in for easy cleaning.  Brushes can be cleaned with a small comb or your hand.  It was designed to be user friendly.

The price ($200) is a little steep, but will probably come down as new models come out and competitors enter the field. Even at $200 it beats having to hire someone every week to come in and do the vacuuming.  In terms of value, it is as important as any medical device or assistive technology product I own.

PROS: Small, light weight, portable, won’t nag you; works by itself while you do something else; gets under furniture you would normally never get under: batteries are rechargeable; easy to maintain; can’t divorce you; dirt reservoir easy to empty (no bags to replace); works on wood, tile, linoleum and carpet.

CONS: Still need to clean out the corners; must keep cords, cables, etc. out of the way; it won’t give you a hug; works 60 minutes and then needs to be recharged; won’t answer the phone or do windows; cost is high ($200); should be monitored around small children and pets.

Will this replace your regular vacuum?  No, but it sure will keep the house or office looking good in between the “deep vacuuming” times.  For wheelchair/scooter users who are constantly bringing in dirt from the outside, this little guy is your newest best friend.

Units are sold at Hammacher-Schlemmer, Brookstone, Harringtons, and The Sharper Image.  All four have mail order catalogs and online websites where you can get pricing and product information.  You can also access the manufacturer’s website – www.RoombaVac.co.  For seniors who live alone and can’t vacuum as often as they used to, this is a godsend.  For quickie cleanups when visitors are coming and there’s no time to get ready, switch it on and have the place vacuumed by the time you take your shower. You’ll be ready in a … “clean sweep!”

FECPPSG Editor’s Note:- This is the very first time that I recall we have ever “plugged” a product – but after receiving the draft of Mark’s article I happened upon an “Infomercial” for this product…..  It absolutely fascinated me and, as soon as the price comes down, I hope to purchase one.  Wish Medicare would allow us to write it off as an assistive device…..

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This came through an e-mail and I’m beginning to think it’s not such a bad idea……

In my next life...

 

I wanna be a female bear…

If you're a bear, you get to hibernate. You do nothing but sleep for six months. I could deal with that.

Before you hibernate, you're supposed to eat yourself stupid. I could deal with that, too.

If you're a bear, you birth your children (who are the size of walnuts) while you're sleeping and wake to partially grown, cute cuddly cubs. I could definitely deal with that.

If you're a mama bear, everyone knows you mean business. You swat anyone who bothers your cubs. If your cubs get out of line, you swat them, too. I could
deal with that.

If you're a bear, your mate EXPECTS you to wake up growling. He EXPECTS that you will have hairy legs and excess body fat.

Yup ... I wanna be a bear.

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 FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP

12  Eclipse  Trail  /  Ormond  Beach,  FL  32174

 386-676-2435  /  e-mail  address:  bgold@iag.net

DATE:                Sunday, March 16th, 2003

TIME:                 1:00 – 4:00 PM

PLACE:              Red Lobster Restaurant

                             International Speedway Boulevard

                             Right off I-95 – Exit 87 – Daytona Beach, FL

                             (head EAST for about 1/4 mile)

 

PROGRAM:-      Rap Session -  Let us know what’s on your mind…..

 

                                                                       

Cost of the Luncheon is $10.00 all inclusive.   As usual we will have a choice of several different menu items.

 

Please send in your reservation tear sheet and check

no later than March 11th, 2003

 

Any questions call Barbara at 386-676-2435.

 

==============================================================

 

R E S E R V A T I O N   F O R M

March 16th, 2003 Luncheon

  

Name:- _______________________________  Phone No.:- _________________

 

Number of People Coming:- _________ Number in Wheelchair(s):-  ___________

 

Amount of Check Enclosed:-  ________________  @ $10.00 per person

 

Make check payable to and mail same to:

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail  --  Ormond Beach, FL  32174

03/2003

 

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

FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP

12  Eclipse  Trail  /  Ormond  Beach,  FL  32174

 386-676-2435  /  e-mail  address:  bgold@iag.net

TENTH  ANNIVERSARY  LUNCHEON

 

DATE:                Sunday, May 11th, 2003

TIME:                 1:00 – 4:00 PM

PLACE:              Red Lobster Restaurant

                             International Speedway Boulevard

                             Right off I-95 – Exit 87 – Daytona Beach, FL

                             (head EAST for about 1/4 mile)

 

PROGRAM:-     Guest Speaker:- Dr. Gudni Thorsteinsson from the Post-Polio    Clinic at Mayo Clinic in Jacksonville, FL.  His topic will be:-  "Post Polio Syndrome:  Things we want to hear and things we do not want to hear".  

 

                                                                       

Cost of the Luncheon is $10.00 all inclusive.   As usual we will have a choice of several different menu items.

 

Please send in your reservation tear sheet and check

no later than May 1st, 2003

 

Any questions call Barbara at 386-676-2435.

 

==============================================================

 

R E S E R V A T I O N   F O R M

May 11th, 2003 Luncheon

  

Name:- _______________________________  Phone No.:- _________________

 

Number of People Coming:- _________ Number in Wheelchair(s):-  ___________

 

Amount of Check Enclosed:-  ________________  @ $10.00 per person

 

Make check payable to and mail same to:

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail  --  Ormond Beach, FL  32174

03/2003

 

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

 FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 ECLIPSE TRAIL

ORMOND BEACH, FL 32174-4936

386  676-2435            e-mail:- bgold@iag.net

 

 

DATE:-       SUNDAY, March 16th, 2003

TIME:-         1:00 – 4:00 P.M.

PLACE:-     RED LOBSTER RESTAURANT

                   INTERNATIONAL SPEEDWAY BLVD

                   Right off of I-95  --  Exit 87  --  Daytona Beach

 

 

PROGRAM:-   Rap Session ----  Let us know what’s on your mind….

 

  

For further information call:-

             BARBARA GOLDSTEIN  at   386  676-2435

 

========================================================

 

2003  DUES/MAILING  LIST

 

Dues Enclosed  ____                                                  Keep me on mailing list ____

 

If sending dues, please make Check ($5.00) Payable to and Mail to:-

FLORIDA  EAST  COAST  POST-POLIO  SUPPORT  GROUP

12  Eclipse Trail,  Ormond  Beach,  FL  32174-4936

 

NAME:- __________________________________________________________

                   with city, state & zip code

 

ADDRESS:- _______________________________________________________

 

E-MAIL ADDRESS:-__________________________ FAX #:- _______________

 

TELEPHONE NO:- Home _______________________ Office ________________

 

Date of Birth:-_________________   Wedding  Anniversary:- ________________

 

Name and Date of Birth of Spouse:-_____________________________________

 

Support Group I belong to:- ________________________________________

03/2003