Atlanta post polio association

November 3, 2007, Meeting Summary of Presentation: Maintaining the Health and Energy Level of Post-Polio Patients
Dr. Donald Leslie, Shepherd Center Medical Director, spoke to APPA members for its November meeting. As a life-long member of APPA and the compassionate Polio physician for many of APPA’s members, Dr. Leslie’s annual appearances are very popular and highly attended. The meeting took place for the first time in many months in the newly expanded and refurbished Shepherd Center (SC). The meeting took place in their new cafeteria at the Ground Level. Future meetings will be scheduled in the new auditorium. Dr. Leslie reported that SC has 14 physicians on staff now covering the needed broad range of specialties. In most cases there are 1 or 2 physicians covering the same specialty. These physicians have succeeded in establishing good working relationships with their patients. Dr. Leslie’s presentation discussed important matters for APPA members in maintaining their health and energy level. Spinal Stenosis As one of his patients is diagnosed with Spinal Stenosis, he indicated that this condition is very painful but not necessarily related to Polio. With this condition, the covering of the spinal column shrinks putting pressure on the nerve endings. It is diagnosed in several ways but best with MRI, which allows the physician to see the nerves. Falling, or even excessive sneezing, can cause the shifting of the spine, precipitating this condition. The condition can exist also with scoliosis. Personal Strength Dr. Leslie advised his audience to strive to maintain their strength. Even though it is stated that in later years a person loses 1-2% of motor neurons each year and polio patients have fewer in number to lose, most of the Polio patients have not become confined to bed as one might have predicted. The reason is that polio patients are taking care of themselves by trying not to exhaust themselves each day. He estimated that a 1-2% loss of motor strength (and possibly up to 10%) could occur through daily exhausting activities. He advises his patients to take the best care of themselves that is possible. As a general rule of thumb, he stated, “Don’t do it if you do not have to do it, or, at least, do less of it and spread the effort over a longer period of time.” Dr. Leslie recommends to his post-polio patients that they retire. They have worked hard for many years and deserve to retire. The benefits of retirement translate to improved health and strength. Lipid Profiles Dr. Leslie queried the audience as to how many are taking medication to control their cholesterol level. There were a significant number of people taking prescribed “statin” medications for this reason. He reported that in his annual physical his total cholesterol level went from 130 to170. Although this level is below the 200 maximum recommended, his physician gave Dr. Leslie a prescription for Zorcor (20 mg/day). He reported that the Mayo Clinic recommends now taking a statin regimen at total cholesterol levels of 100. He asked his audience, “Why are we taking this medication?” The answer was to prevent the blocking of our arteries, avoiding serious heart conditions and possible death. He indicated that Lipitor is the most expensive statin and the largest selling medication today. There is no generic alternate but there are other effective statin products available. He encouraged the audience to take this medication as needed, even though statins can “induce muscle cramping or muscle loss for Polio patients.” However, if you are having side effects from your statin switch to another brand. He cautioned that one needs a two-week cleaning out period of the previous statin before starting any new product to get a clear understanding of the acceptability of the new drug. One member of the audience recommended seeing a cardiologist who can determine if you have blood problems and provides better expertise in treatment than a general practice physician. Dr. Leslie indicated that Shepherd Center is able to help anyone find a cardiologist or any other specialist for that matter. CDC Exhibit on Eradication of Polio To commemorate the eradication of polio effort, Dr. Leslie reported the CDC has a wonderful and educational exhibit open to the public. He has been instrumental in extending this exhibit until March 2008 and highly recommends this exhibit to APPA. Entrance to the CDC building requires a picture identification and screening through a metal detector. The telephone number at the CDC is 404-639-0830. The eradication effort was initiated in 1988 and with 122 countries participating became the largest health effort in history. At its peak polio infected 1000 patients per day. Nearly 2 billion people have been vaccinated for polio and an estimated 250,000 lives were saved. In the world today there are about 2000 cases of polio per year. In the US there were less than 50 and these cases were brought into the country. To make sure that the inoculations are indeed effective, characterization of the various strains of poliovirus active today are being closely screened. So far the poliovirus has not mutated. Pulmonary Concerns Several of Dr. Leslie’s patients are using supplemental oxygen at night to reduce the strain on the body and improve sleep quality. He recommended that APPA members consider seeing a pulmonologist to determine if they are in need of supplemental oxygen. He explained that people breathe using three mechanisms. The first mechanism uses the diaphragm and accounts for 45-55% of a person’s air intake. The second way is thorax breathing that accounts for 25-30%. This involves the 12th vertebrae area of the ribs and attached muscles acting to expand the chest. The remaining mechanism involves air movement (15-30%) resulting from the action in the area of the collarbone up to base of the neck. Effective use of these three mechanisms is important to maintaining pulmonary health. Miscellaneous Inoculations To maintain the health of polio patients, Dr. Leslie encouraged everyone to get a flu shot each year and the inoculation for pneumonia every five years. For the latter inoculation it is recommended now that this shot be repeated every five years and not every ten years. Pain Medications Dr. Leslie reminded his audience that energy expenditure is greater as muscle loss increases. Accordingly, use of any pain medications must not act to reduce the energy of the patient. It is important to check with a doctor about this concern. In response to an inquiry, he responded that acupuncture remains a means for controlling pain. A question was asked relating to using “nerve blocks” to control pain. He agreed this is one means to improve the life of a patient. TENS is another approach in controlling pain using electrical nerve stimulation. This approach prevents the relaying of the pain signal to the brain. Also, he mentioned that ignoring pain could induce pain in other areas. An aching shoulder could induce pain in the elbow, for example. He added that pain physicians at Shepherd Center are also trained in rehabilitation medicine. Handling Fatigue Dr. Leslie stressed that it is important to recharge our batteries through effective rest, such as lying down and taking naps. In answer to questions about available medications, Dr. Leslie cited Ritalin or Strattera. These medications act as stimulants that can increase heart rate and blood pressure, however. He also mentioned Provigil, which does not induce these side effects. Dr. Leslie cautioned his audience to take as few medications as possible. He emphasized the a good night’s sleep is the best route to treating fatigue and to get a minimum of six hours of sleep or more at night. Nonetheless, if a person needs some help they can try either Tylenol PM or Rozerem. He warned that use of drugs that are too strong can adversely affect breathing. These must be avoided if they cause shortness of breath or cardio problems. As a physician, he works with patients to reduce the amounts of medications being used. He acknowledged prescribing some medications that could be addictive. He monitors their use carefully, however, to prevent any possible addiction. Xanax (available at 0.5, 1 and 3 mg pill sizes) is a Valium type medication that can be effective in reducing pain. A member of the audience reported using Melatonin at low dosages (available in 1 or 3 mg pill sizes) with great success in inducing sleep. He agreed and explained this product is an amino protein that is tolerated readily by the body. It can be purchased over the counter at health stores. Restless Leg Syndrome To a question on this subject, Dr. Leslie indicated this condition is not addressing the issue of spastic muscles. Cymbalta is a medication that is being used now to relieve this condition. Another drug (possibly Mirapex) is being introduced but the correct name could not be recalled. He asked his audience to call his office for this information. Neurontin is another medication that has been used for this purpose. Again, he cautioned that it is important for patients to have a physician advise them on use of multiple medications. Improved Sleeping Dr. Leslie suggested that to improve sleep quality consider replacing their “old” bed mattress. As a mattress ages it loses its ability to support the body properly. Members of the audience volunteered their experience with selecting a mattress. Among the many comments was the recommendation to avoid memory foam mattresses as they make it difficult to turn at night. Another indicated mattresses with pillow tops should be avoided, as they may not give sufficient support. One person had to use their pillow mattress with the pillow side on the bottom to gain better support. Another member indicated the name of the manufacturer is less important than buying a mattress having the highest available number of coils per square foot of mattress. This will assure better support. Use of electrically controlled beds can provide comfort and more ease in getting in and out of bed. The Atlanta Mattress Factory customized a mattress for an APPA member to provide better support at the edges and corners for easier access. In his final comments, he admonished his audience not to be “Polio Passers.” This is a polio patient who avoids using aids of any sort. APPA is very appreciative of Dr. Leslie for taking the time from his very busy schedule to provide this important information. Summary Written by: Ron Swor and Karen Sabastian Disclaimer The information provided herein represents what the authors believe they heard during the November 3 presentation. The authors are neither medically trained nor experts in the treatment of polio patients. Also, they are not knowledgeable concerning the use of prescription drugs or over-the-counter supplement medications. For these reasons the authors may not have recorded an accurate accounting or understanding of the important matters discussed. Accordingly, neither the authors nor APPA assume any responsibility for the accuracy of the information provided. It is, therefore, highly recommended that all and any information provided be discussed and confirmed with an appropriate physician before implementing any of these actions or recommendations on your own.

Source: http://www.atlantapostpolio.com/APPA%20Leslie%20Nov%20Mtg.pdf