The Lighthouse The Lighthouse
Coastal Empire Polio Survivors Association, Inc.
Newsletter June, 2011
Vol. XIV, No. 6
Shining Light on Post-Polio Health
www.coastalempirepoliosurvivors.org
The President’s Message…
I just returned from my Granddaughter’s college graduation from the University of Rhode Island. I took with me what I feel is CEPSA’s best purchase, a new Go-Go scooter. I sailed through the airport in Savannah, (albeit that being in the scooter required my being patted down) and onto the plane. Upon arrival in New York, I was told exactly where my scooter would be and before I knew it, I was out front waiting for my son to pick us up. He broke it down in about 30 seconds or less, placed it in his trunk, and we were on our way. The next day we headed up to Newport, RI via a ferry from Long Island. I don’t know how many of you have visited the Mansions of Newport, but they are the most fantastic homes you can see. The theme for these giant homes owned by the Vanderbilts, Rockefellers, Astors, etc. was opulent, more opulent and most opulent. It was a competition and, believe me, they went all out; no expense was spared. The reason I am mentioning this is that, without the scooter, I would have been sitting by myself in the lobby while my family toured, or have stayed at home. The scooter enabled me to see every room (70 in one mansion) and not be left behind. At the college campus I was able to go to all the venues and enjoy being a proud “Papa.” Please, if you are planning a vacation, either by air or car, a few days or longer, take this scooter with you. It will make all the difference in the world how you enjoy your trip. You will not be left out of anything.
I know at the meeting Richard told everyone about it and how this scooter will be available to all members. If you know you will need it, just call me and I will sign you up. The person that wants to use it will be responsible to pick it up, then keep it in their home and keep it charged until the next member picks it up. Once you use this scooter and see how convenient it is, you will never travel without it.
I understand from Diane that the May meeting went well. Many question regarding PPS and our bodies were answered. The members present seemed to like the format, and I believe there were more questions that Diane didn’t get to. We will try to finish them off at this June’s meeting (June 25th). I want to thank Diane for all the research she did in putting together this program. I think this type of a program is something we could revisit from time to time. Possibly even one member’s questions answered each meeting. Maybe we can have a committee handling it.
Jim Veccia, President
General Meeting Minutes
May 21, 2011
Vice President Diane Davis called the meeting to order at 10:40 am. She recognized Raye and Jack Rozek who had missed a few meetings, welcomed everyone and asked the two new members to introduce themselves. Hugh Munn had polio at age three when he was living in Columbia, SC. He underwent 12 to 15 surgeries at the Shriner’s Hospital. He was a news reporter for many years and is now teaching Public Relations at the University of South Carolina. He was evaluated by Dr. Hoffman at Warm Springs, Georgia for Post-Polio Syndrome.
Ed Stallworth read “A Choice to Make” for the inspiration.
Cheryl Brackin led the Pledge of Allegiance.
Diane asked if there were any corrections to the minutes of the March meeting. Cheryl Brackin noted that the title of Lorraine Frew’s inspiration was “The Train of Life” and moved that it be corrected. The minutes were approved as corrected.
Marty Foxx gave the Treasurer’s Report which was accepted as presented.
Richard Graham, Cheryl Brackin, Diane Davis and Janet DiClaudio gave their Care Team reports. Member concerns mentioned were Dale Merritt, Ed and Adrienne Stallworth’s daughter, Nancy Hess, Eunice Newcomer and George Finley. Cheryl Brackin stated that she has resigned from Savannah Speech and Hearing effective June 14, 2011.
New Business
Janet DiClaudio reported on the River’s Edge Health Fair which was held on May 6 and 7, 2011. Five copies of the article, “Polio’s Second Act” from the September 2010 issue of The Rotarian were taken. Two vendors, Smart Feet and LoCost Pharmacy, would be willing to do presentations at a meeting for us. One vendor stated that she would talk to the editor of their employee newsletter regarding patients who might be polio survivors and if so, to have them contact me regarding our organization.
The person responsible for marketing River’s Edge said that her 51 year old brother had polio in the very early 1970’s. He attended the Daycroft School in Greenwich, CT. One of his classmates went to Africa with his family and was exposed to polio. Her brothers and four other boys ended up with her. Her parents were Christian Scientists and did not have them immunized. The display attracted attention. Two people recognized Sandra Bath and one knew Cheryl Brackin. Vivian Frazee, a friend of Janet’s from River’s Edge, donated $5.00 to CEPSA.
Richard Graham discussed the scooter that was purchased by CEPSA which is to be loaned to polio survivors when needed on a temporary basis. It can fit in the trunk of your car and the heaviest part is the battery which weights 27 pounds.
Janet DiClaudio read the World Health Organization’s Global Case Count which is higher than last year. The count in 2010 was 84 on April 27, 2010 and 120 on April 26, 2011.
The business meeting was adjourned at 11:30 am.
Program
Members submitted six questions to Diane Davis who researched the answers prior to the meeting. The answers to four of them were discussed at the meeting and will be published in the June issue of The Lighthouse.
- A list of your doctors and their contact information.
-A list of medications you are currently taking.
- A list of medications you cannot take, making note of the side effects you experienced.
- A list of medications that you have no problems taking.
- A list of surgeries and other vital information.
- A list of instructions of how to handle your body in the event of an emergency, unconsciousness and/or surgery. Be specific to your area of weakness: legs, arms, back, neck, etc.
Make copies of the list for family members and contact persons in the event of an emergency.
2. Should polio survivors see a Pulmunologist even if they did not need an Iron Lung at the onset of polio? Janet DiClaudio discussed the treatment of sleep apnea. C-PAP is Continuous – Positive Airway Pressure. The pressure is set the same when inhaling and exhaling. Bi-PAP is Bi-level-Positive Airway Pressure. The pressure is set higher when inhaling and lower when exhaling. Bi-PAP AUTO is Bi-level-Positive Airway Pressure Automatic. The pressure is not set. It sets itself from your breathing pattern. This is the one Janet DiClaudio uses. If someone uses oxygen, the oxygen is connected to the equipment during sleep.
3. Is anyone having specific problems while using statin drugs, such as Crestor? Marty Foxx led the discussion. Several people did have problems, mostly related to muscle pain. Two people have been taking Livalo, a new drug for control of cholesterol, for a short while and have had no problems so far.
4. Has anyone experienced any problems (such as additional muscle weakness) when receiving IV infusions of a hormone called Zometa? Sally Luck took one Actonel tablet and experienced severe pain in less than a week. It took ten days to go away. Tom Schendorf recommended reading Drug Muggers regarding what you need to take with certain drugs by Dr. Suzy Cohen.
The questions and their answers are located elsewhere in this newsletter. There were questions that were not answered due to lack of time that will be addressed at the June meeting.
The next meeting will be on June 25, 2011 at 10:30 am in the Candler Heart and Lung Building.
Respectfully submitted,
Janet DiClaudio
Secretary
OUR SUMMER BIRTHDAYS
JUNE
Deloris McCall –10
Ed Stallworth –12
Ruth Parham –14
Janet DiClaudio –17
Joey Carroll –29
JULY
Joan Page –17
Cornelia Rollins –21
AUGUST
Gene Goff –7 Idella White –21
Angelo Foster –8 Ron Gay –26
Tony Calandra –11 Jim Veccia –27
Bob Parkhurst –29
Cheryl Makes the Evening News
Those of you who attended our last meeting heard Cheryl tell the group that after thirty-six years of caring for people with speech problems at Savannah Speech and Hearing,
our speech pathologist, due to increasing health problems, is retiring. Speech and Hearing held a reception for her that was attended by a large number of Cheryl’s ‘second family.’ The TV cameras were rolling and the festivities were recorded and played on the evening news. All of us at CEPSA wish Cheryl nothing but the best in her retirement. I’m sure she knows that she can call on any of us for any help she might need. Good luck Cheryl!!!!
Questions Submitted by CEPSA Members for the May Meeting,
S.O.S. - Sharing Our Strengths:
Post-Polio Questions & Answers
Question: 1. What doctors can you recommend that know about Post-Polio? This question comes up a lot among polio survivors who have moved to the area, however, as we age, the need for all of us to see a specialist may be something in the near future. A list of medical providers and Post-Polio Clinics has been compiled that are recommended by some of our CEPSA members according to their experience with the professional. This is not a CEPSA recommendation. With the exception of the Post-Polio Clinics, the medical professionals listed don’t claim be Post-Polio experts; however, they are familiar with Post-Polio and willing to work closely with polio survivors.
Medical Providers Recommended by
Members of
Coastal Empire Polio Survivors Association:
Savannah, Georgia
Internist (Familiar with Post-Polio)
Dr. Paul Bradley – 912- 443-4200
340 Eisenhower Drive
Cheryl Brackin – 912-927-8332
Lorraine Frew – 912-925-0117
Dr Joenie Almeida – 912-819-9100
527 Eisenhower Drive
Lorraine Frew – 912-925-0117
Internist - Specializes in Endocrinology
Dr. Joseph DeHaven – 912-355-1437
7001 Hodgson Memorial Drive, Suite # 2
Betty Goff – 912-355-8497
Rheumatologists
Wrightington Rheumatology - 912-352-7960
4849 Paulsen St., Suite 209
Dr. Than Win (Familiar with Post-Polio)
Cheryl Brackin – 912-927-8332
Pulmonologist (Familiar with Post-Polio)
Dr Obaid Rehman - 912- 927-6270
11700 Mercy Blvd.
Betty Goff – 912-355-8497
Coastal Respiratory Associates – 912-352-4777
5354 Reynolds Street
Dr. Gifford Lorenz (CEPSA Speaker)
Lavonne Calandra - 912-354-2020
Janet DiClaudio – 912-352-8383
Terri Dunnermann – 912-234-3495
Cardiologist (Familiar with Post-Polio)
Savannah Cardiology – 912-352-8700
6301 Abercorn Street
Dr. Robert Rollings (CEPSA Speaker)
Janet DiClaudio – 912-352-8383
Lorraine Frew – 912-925-0117
Lavonne Calandra - 912- 354-2020
Betty Goff – 912-355-8497
Harvey Varnadoe – 912-659-2544
Sally Luck – 1-843-705-3234
Neurologists (Familiar with Post-Polio)
Doctors at Savannah Neurology Specialist Listed Below - 912-354-7676
6602 Waters Avenue
Dr. Richard Bodziner
Harvey Varnadoe – 912-659-2544
Lavonne Calandra - 912- 354-2020
Dr. Julia Mikell
Janet DiClaudio – 912-352-8383
Dr. Frank Lafranchise
Betty Goff – 912-355-8497
Physical Therapist at Savannah Neurology Specialists - 912-353-3333
5356 Reynolds Street, Suite 300
Tony van Sherpenseel (Familiar with Post-Polio; particularly skilled in neck problems)
Cheryl Brackin – 912-927-8332
Orthopedic (Familiar with Post-Polio)
Doctors at Southeastern Orthopedic Center Listed Below – 912-644-5300
210 DeRenne Avenue
Dr. Joseph C. Hegarty - Pain Management Specialist (CEPSA Speaker)
Lavonne Calandra - 912- 354-2020
Harvey Varnadoe – 912-659-2544
Dr. Andrew Pandya - Pain Management Recommended by CEPSA Member:
Betty Goff – 912-355-8497
Dr. Charles A. Hope - Orthopedic Surgeon Specializes in hip and knee
Lorraine Frew – 912-925-0117
Lavonne Calandra - 912- 354-2020
Dr. David N. Palmer - Orthopedic Surgeon
Lorraine Frew – 912-925-0117
Gastroenterologist (Familiar with Post-Polio)
The Center for Digestive and Liver Health
912-303-4200
1139 Lexington Avenue
Dr. Mark E. Murphy CEPSA Speaker
Lorraine Frew – 912-925-0117
Gastroenterology Consultants of Savannah
912 -354-9447
519 Stephenson Ave
Dr. Greg Borak (Familiar with Post-Polio)
Betty Goff – 912-355-8497
Orthotics (Bracing) Savannah Orthotics - 912-355-7778
906 East 68th Street
Brandon Stewart (Familiar with Post-Polio & Polio Equipment)
Diane Davis – 912-355-1221
Cheryl Brackin – 912-927-8332
Hattie Evensen, Statesboro, GA –
912-267-9797
Equipment
Integerty Medical – 912-355-0715
46 Lee Blvd.
Scooters, motorized wheelchairs, etc.
Bill Byler – (CEPSA Speaker)
Richard Graham - 912-728-3393
Diane Davis – 912-355-1221
Dave Byler - (CEPSA Speaker)
Augusta, GA Phone: 1-706-394-1618
Remodels Accessible Bathrooms
Ophthalmogy (Eye)
Boland Eye Center – 912-352-2299
1615 East Montgomery Cross Roads
Dr. Ryan Boland (Familiar with Post-Polio)
Recommended by CEPSA Member:
Lorraine Frew – 912-925-0117
Oral Surgeon
Oral & Maxillofacial Surgery - 912-354-1515
310 Eisenhower Drive, Building #1
Dr. Michael Wilson (Familiar with Post-Polio)
Betty Goff – 912-355-8497
Acupuncture (Familiar with Post-Polio)
Isa Holloway – 912-414-6461 (Pain Management)
Lavonne Calandra - 912- 354-2020
Bluffton, South Carolina
Coastal Pain & Spine Center 1-843-757-6744
38 Sheridan Parks Circle Suite F
Bluffton, SC 29910-7023
Dr. Susan Cramer (Familiar with Post-Polio)
Sally Luck – 1-843-705-3234
Jim Veccia – 1-843-837-1230
Physical Therapy - Bluffton, SC
Karin Massie & Lee Kalmers 1-843-705-8840 (Familiar with Post-Polio)
Sally Luck – 1-843-705-3234
Hilton Head, South Carolina
Dr. Mark Dean - Orthopedic Surgeon
(Familiar with Post-Polio)
Hilton Head Office – 1-843-681-2363
Beaufort Office – 1-843-525-0045
Sally Luck – 1-843-705-3234
Jacksonville, Florida
Mayo Clinic - Rheumatology Department Appointments 1-904-953-0853
Dr. Andy Abril (Familiar with Post-Polio)
Cheryl Brackin – 912-927-8332
Post-Polio Clinics Recommended by Members of
Coastal Empire Polio Survivors:
Albany, Georgia
Palmyra Post-Polio Clinic
810 13th Ave. Suite 105
Albany, GA 31701-1333
Phone: 229-446-8960 Appointments: 1-800-443-4476 Fax: 229-439-8861
Medical Specialty of Director: Physical Medicine & Rehabilitation
Dr. Paul E. Peach - paulpeachmd@aol.com
Lorraine Frew – 912-925-0117
Richard Graham – 912-728-3393
Charleston, South Carolina
Coastal Post-Polio Clinic
3185 Azalea Drive
Charleston, SC 29405
Phone: 843-762-2274 - Fax: 843-762-2278
Medical Specialty of Director: Physical Medicine & Rehabilitation
Dr. Kerri A. Kolehma, MS, MD
Physical Therapy: Dr. Holly Wise, PT, PhD/ (CEPSA Speaker) wisehh@musc.edu
Recommended by CEPSA Members:
Pixi Winters – 803-413-1010 Columbia, S.C.
Penny Smith – 912-265-8373 Brunswick, GA
Recommended by CEPSA Member:
Carlos Clas – 912-398-4759
Warm Springs, Georgia
Roosevelt Warm Springs Institute for Rehabilitation
6135 Roosevelt Highway
Warm Springs, GA 31830-1000
Phone: 706-655-5251 Fax 706-655-5432 www.rooseveltrehab.org
Medical Specialty of Director: Physical Medicine & Rehabilitation
Dr. Katherine Hoffman
Raye Rozek 1-229-561-3895
Question: 2. Should polio survivors see a Pulmonologist even if they did not need an Iron Lung at the onset of polio? Yes, respiratory muscle function gets worse with age, especially for those who had polio. It is important to establish a baseline of your pulmonary status before there is an emergency or the need for surgery. This baseline is measured with pulmonary function tests by a pulmonary physician. Those who used iron lungs should definitely have preop pulmonary function tests because they are at greater risk for postop respiratory failure. Polio breathing difficulties are not caused by lung disease, but rather by problems outside the lungs that limit the amount of air entering the lungs with each breath, causing underventilation. Without proper ventilation to bring in oxygen-containing air and carry out the carbon dioxide made in the body, a buildup of carbon dioxide can occur. For polio survivors, underventilation is related to respiratory muscle weakness, polio-weakened throat and neck muscles, scoliosis or sleep-disordered breathing. It is common for polio survivors to have problems sleeping. If you are experiencing difficulty sleeping, your pulmonary physician would conduct a sleep study that determines your sleep apnea problems. Many polio survivors are prescribed CPAP or BiPAP positive airway pressure devices that address sleep underventilation problems. Sleep apnea is well documented to be a risk factor for anesthesia incidents for polio survivors during surgery both at the beginning of anesthesia and especially at the end of the surgery as the patient begins to breathe on their own. CPAP or BiPAP users should let the surgeons know early in the surgery scheduling process, so they can alert everyone on the surgical team. In addition, the CPAP devices should be brought to the hospital to be used when the breathing tube is removed after surgery.
Signs and Symptoms of Underventilation
The presence of any one of these can alert polio survivors to the possibility of breathing difficulties and should see a Pulmonologist:
Practical Suggestions for Polio Survivors
Post-Polio Health International Newsletter Fall 2007 Vol. 23, No.4 - www.post-polio.org
Question: 3. Is anyone having specific problems while using statin drugs, such as Crestor?
Yes, several people in our group have tried taking statins and experienced pain, weakness and extreme fatigue. For some of them, there has been a permanent increase in some of their Post-Polio symptoms after discontinuing the drug, while others have found a particular statin drug that works for them.
Cautions about Medications
Many drugs may have drowsiness as a side effect or may increase fatigue within the general population. (Always check the label or ask the pharmacist or physician.) These include central nervous system (brain) depressants, e.g., narcotics, sedatives, tranquilizers, sleeping pills, and alcohol; anti-histamines; antidepressants; and anti-anxiety agents. Polio survivors who take these medications may experience an increase in polio-related weakness and fatigue.
Diuretics (water pills) and laxatives may deplete the body of essential minerals required by nerves and muscles for normal functioning. Many other drugs (antibiotics, chemotherapy agents, even megadoses of some vitamins, e.g., B6) can contribute to nerve damage. Muscle relaxants and drugs similar to them in chemical structure (quinine, quinidine, procainamide), as well as other medications used for heart or blood pressure problems (beta-blockers, calcium channel blockers), may add to polio-related weakness and fatigue.
Anecdotal evidence suggests that cholesterol-lowering medications of the “statin” family may also increase polio-related weakness and fatigue. Polio survivors, particularly those with a lesser muscle mass, have reported fewer and less dramatic side effects from some medications when taking a lower dose.
Polio survivors and their physicians should scrutinize all medications – current and newly added – used to treat various medical problems to be assured that related conditions, such as fibromyalgia, elevated cholesterol, high blood pressure, etc., are appropriately treated, but with minimal effect on polio-related symptoms.
Post-Polio Health International Newsletter, Winter 1999, Vol. 15, No. 1 - www.post-polio.org
Question: 4. Has anyone experienced any problems (such as additional muscle weakness) when receiving IV infusions of a hormone called Zometa? Bisphosphonates are sold under the names Zometa, Actonel, Aredia, Bonefos, Boniva, Fosamax, Didronel, Reclast and Skelid. Most people are familiar with these drugs as osteoporosis treatments. However, they are also approved for a variety of other indications, including other bone diseases such as Paget's disease. These drugs are also given to cancer patients for the prevention of fractures due to bone metastases. Actonel, Boniva, Didronel, Fosamax and Skelid are all oral bisphosphonates. Aredia, Bonefos and Zometa are administered intravenously. Depending on which drug you are taking, and the condition for which you are being treated, bisphosphonates may be administered once per day, weekly, or monthly.
Over the past several years, bisphosphonates have been associated with a number of side effects, including:
Osteoporosis is a musculoskeletal disease, which affects the bones. The bones in the human body regrow and restructure through a person's lifetime, but when the rate of bone mineral loss exceeds the rate of mineral absorption, the condition is known as osteoporosis. The National Osteoporosis Foundation reports 10 million Americans have this disease, of which 80 percent are women. Women are at high risk for this disease because their estrogen levels decrease after menopause, which causes a reduction in the rate of bone regrowth.
Doctors should only prescribe one infusion drug to patients because both Zometa and Reclast utilize the same active ingredient, zoledronic acid. Infusion treatment alone will not strengthen bones. Side effects include muscle pain, flu-like symptoms, and tenderness at point of access. Patients who show signs of renal deterioration should not be prescribed for infusion treatment, because it can further endanger the kidneys.
Medication Summary: Polio survivors should work cautiously with their doctor when considering drugs that could cause the following side effects:
Everyone enjoyed our summer luncheons last year, so we will continue it this
July and August. The dates will be July 23rd, and August 27th. Only this year we will meet at The Exchange Restaurant, 6710 Waters Street, Savannah. You can call (912) 525-1148 for directions. Of course it will be “Dutch Treat.” This gives us the chance to catch up with each other during the summer months.
Our Member Concerns
Janet DiClaudio, Beverly Jarvis, Eunice Newcomer, Eileen Boyle, Terri Dunnermann,
Ann and George Finley, Ed Stallworth, Dale Merritt, Sally Luck, Dot Parkhurst, Betty Goff, Beverley Polin, Nance Sherland (Jim’s sister) Please keep these members in your prayers.
CONTRIBUTIONS
The Coastal Empire Polio Survivors Association is a non-profit corporation which is tax exempt under IRS code 501c(3). We have no paid employees, only volunteers dedicated to helping all polio survivors.
Your financial support is appreciated at any level suggested below:
* CEPSA Member - $15.00 annual voluntary donation
* CEPSA Supporter - $25.00 $50.00 $100.00 $300.00
* CEPSA Memorial or Honor Gift - any amount
* CEPSA Sponsor – any amount
Your contributions are tax deductible and will be acknowledged appropriately.
Please complete this form and mail it along with your check to: CEPSA, Marty Foxx, 23 East 61st Street, Savannah, GA 31405.
Name __________________________________________________
Address ________________________________________________
City ___________________ State_____________ Zip ___________
Phone _______________________ E-mail _________________________________
Are you a relative or friend of a CEPSA member, if so _________________________________
Name of member
Thank you for your support and encouragement.