|People with Special Needs Down Syndrome Report||
|VOL. 17 #6||SSN0731-566X||Fall 1997|
SENATOR DASCHLE. Recent letters to and from him crossed in the mail so here are extracts from Senator Daschle's latest letters: "Thank you for sending me the Summer 1997 issue of People with Special Needs/Down Syndrome Report. I appreciate your words of support for the IDEA compromise. Senator Lott's chief of staff, Dave Hoppe, does have a son with Down's syndrome and was indeed important to the negotiations."
"I also appreciate your comments about Walter Runyon. Even though the Postal Service Board of Governors voted to seek an increase in the price of postage, the proposal still must be approved by the independent Postal Rate Commission, which is under no obligation to approve the increase. At any rate, even if an increase were approved, it would not go into effect before May 1998."
"Thanks again for keeping me up-to-date on issues affecting people with disabilities. Please keep in touch."
"I will be happy to address your concerns regarding pro-rated Social Security benefits for those who have fallen short of coverage." THIS IS A TIME OF POSSIBLE EPOCH-MAKING SOCIAL SECURITY REVISIONS. The White House policy makers tested the media waters before Labor Day. There likely will be a national dialogue. Let us know what you think should be changed and/or contact the President, Senators Daschle and/or Lott, your local Congressional Representatives and your various support groups.
VOLUNTEER FOR YOUTH. The first couple of pages of the August issue were about this subject although my article "Few Things in Life are Certainties" may not have seemed related. Being a skeptic, I considered and recognized that Colin Powell, the President and others would gain if the program is successful and I think it will be. Now the 8-25 TIME magazine article on p. 36 "The Children's Crusade" says the Democrats (including Gephardt) seek the image of concern about protecting children and helping parents be great parents. In October, Hillary will conduct a child-care conference at which several major initiatives will be introduced according to the article. We have never endorsed a political party, religion, or any other endeavor/activity that didn't seem beneficial to the country. Moreover, I recently have read much biographic material on another former Chief of Staff, George Marshall, and concluded that he served our country as well when he retired as he did before and during WW II. I saw Colin Powell on the 8-17-97 CBS show "Touched by an Angel" and concluded that he promoted the "volunteer for youth" program very well. If he, or others, gain stature from this program, so be it! We want to help. As we mentioned on p. 9 of the Autumn issue JOIN TOGETHER (441 Stuart St., 7th Floor, Boston, MA 02116) has published a kit dedicated to this subject which we endorse. It suggests that you call 800-365-0153 if you will "join Together" with the rest of us to advance the condition of America's youth.
The Volunteer Protection Act of '97 (PL 105-19) removes volunteers from legal liability in negligence lawsuits under certain circumstances (except in the case of a hate crime, violence or sexual nature). Volunteers who violate civil rights laws or under the influence of drugs or alcohol remain liable for their action. There are many aspects of the new law and if you write M.D. Croser (AAMR, 444 N. Capitol St., N.W., Washington, DC 20001-1512). You probably will get help and if you aren't an AAMR member, consider joining! PL 105-19 is effective 9-16-97 and applies only to misconduct after that date.
LOW GLUCOSE METABOLISM DURING BRAIN STIMULATION IN OLDER DS SUBJECTS AT RISK FOR AD PRIOR TO DEMENTIA. This AMERICAN JOURNAL OF PSYCHIATRY article from their August issue consists of a half dozen pages (1063-9) of well documented scholarly work from a dozen degreed specialists. Address reprint requests to D. Pietrini, M.D., Lab. of Neuroscience, NIA, Room GC414, Bldg. 19, 9000 Rockville Pike, Bethesda, MD 10892.
They believe that the differential increases in regional cerebral glucose metabolism reflect an intrinsic limitation of the brain of the older non-demented adults with DS in responding to sensory stimulation as a result of Alzheimer's disease (AD).
One of our staunchest supporters wrote in July that her brother who has DS is past 58 and has AD. Although he is deteriorating predictably, he is still at home as she feels he will not be taken care of in a facility. If you have comments or suggestions send them to Grace Davenport, P. O. Box 74763, Los Angeles, CA 90004. In our next issue we will print the first installment of her brother's personal narrative.
Some recent research findings on AD are that vitamin E and the drug selegiline appear to slow deterioration caused by AD and that NSAIDS (such as ibuprofen) lower the risk of AD. Try to avoid strokes as the Kentucky study of nuns found that nuns with a combination of strokes and AD had more dementia. Columbia University reported that women who took estrogen for at least a year reduced their risk of AD by 87%.
An article in the June DOWN SYNDROME QUARTERLY ($24 per year, Dr. Thios, Denison University, Granville, OH 43023) by Silverman and Keim titled "Reaction Times Verify Nondemented Status of Adults with Down Syndrome" is based on target search and speeded matching tasks to determine if adults with DS process information more slowly than their peers (they found none). To communicate in relationship to this "positive" article write Wayne Silverman, (Department of Psychology, New York State Institute for Basic Research, 1050 Forest Hill Road, Staten Island, NY 10314-6399. Email: email@example.com). It says: "Evidence has been accumulating that most adults with DS in their 30s, 40s and 50s do not experience dementia."
DIABETES/PREVENTIVE MEDICINE. We mentioned in our Autumn issue that anyone with 126 milligrams of glucose per deciliter of blood is considered diabetic and that you can easily measure your blood glucose levels at home. I called Lifescan (a subsidiary of Johnson and Johnson) at 800-227-8862 and they sent me free new One Touch Basic machines in exchange for my old equipment. They will have new equipment out this winter (hopefully avoiding the need for pricking fingers to get blood). My health insurance (GEHA) includes blood testing strips through my Merck pharmaceuticals by mail coverage.
Everyone should periodically (at least every three years) have their blood sugar measured. Many of the amputations, deaths, discomforts, etc., caused by diabetes could be avoided if that is done.
In the Autumn issue we started this subject with the word thyroid and we will continue to watch and report on thyroid development and in the summer issue we linked "Idea/Preventive Medicine" in our lead article as we reproduced Senator Daschle's letter linking the two subjects. A new law includes $2.1 million for expanded Medicare benefits and $150 million for research plus $150 million earmarked for Native Americans.
Diabetics do not produce or properly use insulin which converts sugar, starch and other foods into energy. The cause of diabetes is a mystery and it has no cure. Only eight-million Americans have been diagnosed but perhaps twice that number have it. The absolute numbers are in question; the Jan - Mar STATISTICAL BULLETIN produced by Metlife contains an overview of diabetes saying it affects more than 16 million people. It also says that diabetes deaths increased 5% from '93 to '94 (1 Madison Avenue, New York, NY 10010). November is Diabetes month, so you may want to ask ADA for specific information of interest to you (1-800-DIABETES). Metlife says diabetes was responsible for more than 160,000 deaths which was 3% of all deaths in 1994 and according to Metlife it is the seventh leading cause of death in the U.S. Ten percent have Type I which requires daily injections of insulin; Type II diabetics treat it with medication and/or diet. Diabetes frequently leads to blindness, amputation of limbs, kidney failure and death and is claimed by ADA to be the fourth leading cause of death by disease in the U.S. The 2-12 JAMA report indicated that a diet rich in carbohydrates and lacking in fiber increases diabetes rise more than double.
At least 10% of people with Medicare are diagnosed with diabetes, but many of them do not receive the recommended levels of treatment, including routine blood glucose tests, and annual eye and foot exams. Some doctors may not be aware of the latest recommendations, and some patients may not realize the danger of lack of treatment.
Senator Daschle told us: "The budget bill recently signed into law by President Clinton includes a provision that improves diabetes management benefits covered by Medicare, effective July 1, 1998. Under this provision, Medicare would cover outpatient self-management training services, including educational and training services furnished to a diabetic by a certified provider in an outpatient setting. The provision also would extend coverage of outpatient blood glucose monitors and testing strips to Type II diabetics, without regard to a patients use of insulin. A physician has to certify that these services are needed to ensure therapy compliance or to provide necessary skills and knowledge."
There are continuous scientific findings such as those in SCIENCE by Washington University School of Medicine teams relating to C-peptide, which had dramatic effects on research rats. This is a serious problem so assure blood sugar levels in yourself and loved ones remain safe.
DS/SLEEP APNEA. This is the review of the article we promised you from the March PLASTIC AND RECONSTRUCTIVE SURGERY. It was authored by six physicians and two RN's from the Scottish Rite Children's Medical Center in Atlanta. Some of the clinical presentations identified include daytime somnolence, poor school performance and behavioral problems. They say sleeping patterns are characterized by snoring with gasping respiration and pauses, frequent arousal and not uncommonly excessive sweating and enuresis. Increased upper airway infections accompanied by increased mucosal secretions and chronic nasal drainage lead to tonsillar and adenoid hyperplasia. They provide a half dozen sources for the statement that "this increase in soft-tissue volume accompanied by maxillary and mandibular hypoplosis is responsible for the relative crowding of midface structures.
The research reported on relates to only seven children aged 3 to almost 13, who were followed from 3 to 52 months. A postoperative polysanogram was obtained prior to discharge and repeated 3 to 6 months postoperatively. They specify the procedures used for the benefit of other craniofacial practitioners. They reveal complications of surgery and seemingly provide all details in narrative or short form.
They say obstructive sleep apnea in DS is common (one-third to one-half) but long-term sequelae can be avoided with early diagnosis and proper management. They quote "No longer should we accept developmental delay or pulmonary hypertension as inevitable consequence of DS; both may be secondary to obstructive sleep apnea."
Certainly the managers of all medical clinics that service people with DS should read this article.
SOMNOPLASTY. FDA has approved this outpatient surgery using high frequency radio waves to destroy tissues that block airways (it takes only half an hour). We will keep reporting on how sleep apnea responds to new technology.
DOWN SYNDROME NEWS. This is the newsletter of the National Down Syndrome Congress, 1370 Center Drive, Suite 102, Atlanta, GA 30338 I created it and coordinated publication by various churches before gratuitously turning it over to the Congress.
RATING A LIFE. "It's not what you have, it's what you do with what you have that counts."
SPECIAL CHILDREN, CHALLENGED PARENTS. This new book by a psychologist, Dr. Robert Noseef, is intended to teach parents how to acknowledge and understand the emotional turmoil--especially the darker feelings of anger, fear, guilt, sadness and shame -- that accompanies their loss (from the cover). I skimmed, but didn't read it so can't speculate on how well he did what he claims. The fact that his teenage autistic son is in a residential facility may have influenced my negative impression.
ACCOMPLISHMENT VS. PLANS. In the Autumn issue in the article captioned MAJOR PROGRESS IN DS RESEARCH, we revealed that NICHD and NDSS had entered into a $3 million research partnership. The last word on this is that the NDSS "Thresholds" campaign is now at the $4,245,620 level and on its way to their five year $7.5 million goal. If you want to see some of the individuals responsible, ask NDSS (666 Broadway, New York, NY 10012-2317) to send you the Summer THRESHOLDS. It also provides a donor roll, which includes "Marjorie, George R. & Robert Johnson" along with many subscribers/partners of this periodical. This contrasts with one of my early efforts to promote action on the DS front at which a gentleman in an immaculate light suit announced to all present at one of our first meetings: "Don't talk or think about raising money, but concentrate on how to spend it." Unfortunately, he had medical problems and regardless of his impeccable credentials, those of us assembled never saw any money and since we hadn't planned to raise any, the only income came from the DS NEWS which I published at that time. I never learned if he was just a blow hard or if circumstances beyond his control prevented him from doing what he said he would do.
DS CLINIC AT PROVIDENCE. In our last issue we highlighted the clinic in Birmingham. This one may be the oldest in the U.S. The Child Development Center at Rhode Island Hospital (which is the overseer) was established in 1966, but I don't know when the DS Clinic was formally established. Dr. Sig Pueschel (M.D., Ph.D., JD, MPA) became Director of the Center early in the '70s. His son, Chris, was born about the time it was established. I'm gong to send this draft to Sig to modify as he sees fit, but since he wrote the "lead" article on it in the June DOWN SYNDROME NEWS, I'm just going to extract details from it. The Center is an interdisciplinary and treatment center open to children with handicaps. Treatment plans for care and education are developed. The basic goal is to help prevent future hospitalizations, long-term disabilities and mental health complications. The Clinic is one of a half dozen at the hospital and deals with behavioral, educational, recreational, vocational and most aspects of life of which medical needs are only one aspect. The care professionals are developmental pediatricians and a nurse coordinator. They follow over 500 people with DS. They focus in on prevention and fostering the well-being of human functioning.
Profile of SIEGFRIED PUESCHEL, M.D., Ph.D., J.D., M.P.H. Dr. Pueschel studied medicine in Germany and graduated from the Medical Academy of Dusseldorf magna cum laude with a Doctor of Medicine degree in 1960. He then pursued his pediatric residency training at the Kauikeolani Children's Hospital in Quebec, Canada. In 1967 he earned a Master of Public Health degree from the Harvard School of Public Health, in 1985 he was awarded a Doctor of Philosophy from the University of Rhode Island and in 1996 he was granted a Doctor of Juris degree from the Southern New England School of Law.
In 1975 Dr. Pueschel was appointed Director of the Child Development Center at Rhode Island Hospital in Providence Rhode Island. He continued to pursue his interest in clinical activities, research, and teaching in the fields of development disabilities, biochemical genetics and chromosome abnormalities. Dr. Pueschel has lectured extensively both nationally and internationally. He has authored or co-authored 15 books and has written over 200 scientific articles. He is certified by both the American Board of Pediatrics and by the American Board of Medical Genetics. His academic appointments include Lecturer in Pediatrics, Harvard Medical School and Professor of Pediatrics, Brown University School of Medicine.
Dr. Pueschell has a 31 year old son, Chris, who still shares his home. Sig will speak on Nutritional Therapies at Cleveland South Hilton (800-899-3039 for information) on 9-11-97.
$10,000 LLOYD BENTSEN AWARD. It went to Paul Connolly this year. It was established in 1987 by the Kelsey-Seybold Foundation for Medical Research and Education to foster better recognition of family-centered, community-based conducted care for children with special needs. The award seeks to recognize individuals who have made a significant difference. The award focuses on families with children who have Down syndrome. Lloyd gave the award to Paul August 9 at the NDSC "silver" convention in Phoenix. You probably can get a packet containing background on the award, Paul Connolly and the Foundation by writing K-S Foundation, 6624 Fannin Street, Houston, TX 77030. I consider Lloyd a Dakotan and I know his Dad was from SD and he conducts himself like a Dakotan.
Paul recently sent me the following message and I certainly agree with him completely. And even though I don't have written permission from all of you, this is a public thank you and congratulations to Paul from all of us who are privileged to have a person who has DS as a member of our family. We recommend that you send him a personal postcard expressing your sentiments (3406 Wellborne Dr., E. Mobile, AL 36695).
"It seems that many people across the country do not even know it is available and that any parent of a person with Down syndrome who has done volunteer work is eligible to be nominated. I would greatly appreciate it if you do an article on the award. Please focus on the idea of people nominating individuals from their community for this award next year and not, so much on me as this year's recipient. Thanks for your help." /s/ Paul Connolly
OUR GUYS. We are selling the concept that parents of developmentally disabled girls should be especially vigilant and not the book which is available for $36 (800-763-6393). The August LADIES HOME JOURNAL contains excerpts from it. The "star" of the story was 17 with an I.Q. of 49. Other major players were four high school football heroes. A dozen other young men were sofa-side onlookers, but apparently half of them left when the first boy pulled off his pants. However, seven remained. There is nothing to be proud of but plenty to learn from this tale of inhumanity.
DOWN'S VOICE. This 60 legal-sized journal qualifies for what it claims. Tony McDonald, who is on the editorial committee deserves most of the credit as she found this an effective way to meld narrative and clippings. Send $20 (or whatever) to 55 Victoria Pde, Collingwood, Victoria 3066 Australia. In the Autumn issue there is an excellent review of UNCOMMON FATHERS (Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817), 800/843-7323), which includes 10 essays of fathers with different disabilities. The review says: "It's pages are rich with heartwarming anecdotes and insights." I concur.
Another review quotes author Michael Bérubé as stating he fears a world in which public care disappears and his ability supplement it with private care diminishes. He is quoted: "If the last three years are any indication, we really don't know where to set our gauges because our children keep exceeding our expectations. Look back a century and most people will feel sorry for a society which allowed so few who were disabled to become people! The three pages devoted to Atlanto-axial Instability concludes: "on the evidence available, the conclusion must be that the DS child is not likely to suffer spinal cord injury from a single traumatic incident. So, why screen for C1-2 instability? Readers must draw their own conclusions. We do, however, see every reason to investigate a DS child who complains of persistent neck pain, or who has an abnormal neck posture of recent onset, or who shows any other evidence suggestive of early myelopathy, such as decreased stamina, when abnormal neurological signs may be subtle indeed."
Some of the newspaper clippings said more than a thousand illegal sterilizations on intellectually impaired girls were done between '92 and '95, even though by law a Family Court order was required. Also, boys were sterilized: 218 boys under 10 had testes removed, 98 under 10 had vasectomies. It will be interesting to see how facts are revealed. Another article revealed that Tony and her 24 year old son with DS assist police learning how to communicate with disabled people. Some conversations took 30 minutes; sounds like something that should be emulated.
With the publication there was a flyer about a film about Harry, a man with a lackluster life but George, a man with DS, reintroduced a purpose and Harry learns again to give, and to enjoy life. Sounds like a great money raiser.
ACADEMIC PERFORMANCE OF DISABLED PEOPLE. We know of no non-stigmatic common referent. The GED test doesn't recognize disabilities so it clearly isn't appropriate to use it to measure academic performance of disabled people. The Adult Basic Education program in South Dakota does require the measurement of competence both before and after semester type training programs, but it compares performance with skills competency based largely on the early elementary school averages. For a person who doesn't comprehend averages and perhaps can't hope to ever attain competency equal to average third graders in math, it is another kick in the buttocks to be compared to them. We will send this draft to Dick Riley the U. S. Secretary of Education with a request for comments and information on how the Government evaluates special education programs and students.
PROUD OPTIMIST. The Parents Regional Outreach for Understanding Downs publishes the OPTIMIST. They had their annual picnic and I bet everyone enjoyed it and learned something. You can reach their web site at: http://www.dsaoc.org/ and/or E-mail to: firstname.lastname@example.org. Their publication and services are free but donations sent to P. O. Box 5822, Orange, CA 91863-0832 are appreciated. In Issue 4, I enjoyed the editorial by Kathleen Tansey Riggs the most; she shares facts and personal feelings. She also wrote the two page article titled "Knowledge." It seems to me that PROUD is a model DS support organization (714-974-6419).
TASH. It got started a year or so after we had the first international organizing conference for DS and picked up the current acronym in 1980, which continues today although the official name has changed and they don't use it. TASH provides equity, diversity, social justice and inclusion for severely disabled people. They are opposed to segregated settings. I think it is a pricey organization but I have never heard complaints about it. To get information from the horse's mouth, send a card to TASH, 29 W. Susquehanna Ave., Suite 210, Baltimore, MD 21204 and ask for their December 10-13 Boston Conference Program.
EXCEPTIONAL HEALTH CARE. This is a monthly interdisciplinary newsletter relating to the health of people with developmental disabilities. It is mailed first class in North America for $65 (DD Pub. #60, 100 Madison Avenue, Morristown, NJ 07960-9886 or call 800-852 2718). Physicians can receive continuing medical education credits from AAFP or AMA. Two of the 20 questions for the first half year follow: (1) T Or F. As of 1995, only 67,735 people with DD resided in public institutions and (2) Tourette syndrome has recently been associated with infection by which of the following: (A) Epstein Barr virus, (B) Hanta virus, (C) Streptococcus, (D) Staphylococcus.
ENABLING DISABLED WORKERS. That is the title of an article in the July AMERICAN DEMOGRAPHICS. It starts with: "Fifteen million workers have moderate or severe disabilities that don't interfere with their lives enough to keep them off the job. Employers can reap rewards that far outweigh the costs of accommodating the disabled, because such workers often boost productivity and morale."
It reproduces a Census Bureau chart dividing workers of '91 - '92 into 3 groups. The first was for employees with no disability and the ultimate were those with severe disability; in between were those with mild disabilities. The severe group had the lowest percentage in executive/managerial jobs and the highest in technical/sales jobs, but actually the differences between the three groups in the six types of jobs listed wasn't great. As to pay, the average monthly earnings were $1,962 for the not disabled with severely disabled employees averaging $1,411, but the mildly disabled were paid less than $200 less per month than those not disabled. To subscribe to AD write P. O. Box 68, Ithaca, NY 14851-9989 and they will bill you $99 for two years or $69 for one year.
MANAGEMENT OF MULTIPLE-ANTIBODY-MEDIATED HYPERTHYROIDISM IN CHILDREN WITH DS. This article is on pages 312-15 of the March SOUTHERN MEDICAL JOURNAL and is authored by two Air Force officers (reprint requests to Col. Samar Bhowmick, Department of Pediatrics, 301 Fisher St., Room 1A132, Keesler AFB, MS 39534-2519). They say the most common DS thyroid disorder is Hoshimoto's thyroiditis. During a seven year period they had five patients with DS, all five had a goiter and symptoms consistent with hyperthyroidism. The article includes detailed case reports of three of the patients with symptoms indicative of combined Hoshimoto's thyroiditis and Grave's disease. Keep this reference and a reprint of the article (if possible) so that when later you are informed of a case of DS thyroid dysfunction you can make it available.
DEFINITIONS: FAMILY, DOMESTIC PARTNERS? My intent is to motivate consideration of domestic partners as a growing part of our society. It has seemed to me for decades that there was room for another category of people that choose to live together. Similarly the form of sharing of larger groups such as communes never has worked out in the U.S. My interest was stimulated by Uncles, Aunts, and friends who deserved more interesting "last years" plus the fact that many larger homes were being operated by one or two people. In recent years, group homes for the disabled have become a more significant interest, but questions of gender mix and seemingly intractable differences in capabilities/interest has seemed to lesson the likelihood of defining definitely "domestic partners." Now that Robert might find domestic sharing advantageous, the question arises as to the merits of restricting the sharing to one person of the opposite gender or a mixed group. Thoughts/reactions solicited. One firm after deciding to offer medical benefits defined a domestic partner as a person over 18:
living with an employee for at least three years,
jointly responsible for finances,
not related by blood.
EASTER SEALS. Their name resulted from the successful fund raiser in 1934; however, their history goes back to 1907. In '29 they had 33 facilities and now have nearly 400. All program dollars (except for four percent) goes for direct client services. It has been recognized as a public education leader that promotes positive constructive attitudes towards people with disabilities. Call 800-221-6827 to find out what it can do for you and yours. They have a beautiful '98 calendar for which they seek a $15 donation (230 W. Monroe St., Chicago, IL 60606).
SMALL DIFFERENCES. We have previously endorsed this 20 minute disability awareness video. To get a flyer telling of it or even perhaps a free preview, call Perry Como, 800-543-2119. It comes with a study guide--all for $85 total: http://www.pdassoc.com/.
FOOD BORNE ILLNESS. The mid-year ND EPIDEMIOLOGY REPORT provides health care providers guidelines for reporting suspected cases in ND. We think they should be utilized more universally. They want samples for lab analyses of stool, serum and vomitus. They provide a phone number for questions on samples. They recommend that suspected food items be refrigerated. They also provide a guide for safe food preparation and a rather comprehensive "trilogy" of problem situations in ND earlier this year. As usual the REPORT provides the number of reportable disease conditions by county with comparable '96 figures. They also provided a brief summary of legislative conditions relating to infectious/communicable diseases or conditions. Contact Editor Larry Shireley at 600 E Boulevard Ave., Bismarck, ND 68605-0200.
LOW FATS - LOW BLOOD PRESSURE. The caption is too simple, but a diet low in saturated and total fat but very high in fruits and vegetables reduced average systolic pressure 55 mm hg and diastolic BP 3.0 mm Hg as reported in the New England Journal of Medicine. You can ask NIH (9000 Rockville Pike Building 1, Bethesda, MD 20892) for a copy of the 2000 calorie DASH diet, http://www.nih.gov/news/pr/apr97/nhlbi-16.htm.
MYSTERY ILLNESSES. We are going to restrict this topic to Chronic Fatigue, Myalgic Encephalomyelitus, Fibromyalgia, Environmental Illness and Chemical Sensitivities. Our primary source will be M.E. Canada (400-246 Queen Street, Ottawa, Ont. K1PSE4) so if any of the above conditions concern you, ask them to put you on their monthly mailing list. John Warren, the editor, asks" "Why are so many scientists determined to deny the existence of something simply because they don't understand it?" Also, "Is it somehow less real to be sick because of a faulty internal circuit than an invading virus?" I would add: "different genetic makeup" to the second question.
I just probed THE HUMAN BRAIN AND SPINAL CORD hoping to find a clue to my Bell's Palsy as it seemed likely that Charles Bell or one of his brothers might be the person who it is named for, but all I found was evidence that mankind knew very little about the intricate mechanism of the body until this half of this century. It has always amazed me that so many former scientists didn't even know the correct number of human chromosomes until that period. Another contact is Fibromyalgia Network (P. O. Box 31750, Tucson, AZ 85751-1750).
NO FEAR STRENGTH. Kathy Wenzlau is credited with launching this program for people of all ages:
ALLAY FEARS. Increase the comfort level about a particular exercise, like weightlifting, by equating it to everyday tasks like lifting and carrying groceries, putting things on shelves or playing with grandchildren.
MOTIVATION. Think of a variety of reasons why it is important to build strength, such as improving looks, defining muscle, trimming fat and building bone mass, which reduces the risk of fractures. Feeling stronger also builds self-confidence.
EASE INTO THE PROCESS. After obtaining a doctor's approval to proceed, start out slowly, maybe just 20 minutes on a treadmill or exercise bike, followed by simple exercises using moderate hand weights.
CONSISTENCY. Strength training should be conducted at lest twice a week, but seniors will benefit most from training or exercise of some kind at least three to five days a week.
BOREDOM. Boredom is the enemy of fitness training for people of any age, and no less so for seniors. If boredom sets in, try encouraging something different. If weight training gets boring, get in the pool and participate in water aerobics. Keep the program interesting.
PEAK PARENT CENTER. Judy Martz, co-director, claims one of our free subscriptions. Her 25 year old son has DS. The Center has a flyer that describes ten of their moderately priced publications on Inclusion (6055 Lehman Dr., Suite 101, Colorado Springs, CO 80918).
SUPPORTED EMPLOYMENT GUIDELINES. There are ten issues per year and all are so strong on SE that some might well say they are hostile to facility-based (sheltered workshop) employment. Send $100 to TRN, Inc. P. O. Box 439, St. Augustine, FL 32085-0439 for a professional pro SE periodical.
TEXT BOOKS. Over the years I have checked out comments in college textbooks relating to DS and just read, "INTELLECTUAL DEVELOPMENT APPEARS TO BE MARKEDLY SLOWED AND DS CHILDREN APPEAR TO BE LESS RESPONSIVE TO STIMULATION GENERALLY THAN OTHER CHILDREN." However, under a picture of a toddler with DS with a woman and a Sesame Street book I found the statement that: "Although Trisomy 21 is the leading cause of mental retardation in the United States, when given the opportunity to learn, many children with this chromosomal anomaly can acquire some skills in reading and writing." Who would deprive them of that opportunity even if it takes a little extra effort? Let us reprint your comments on these extracts from the '95 Houghton Mifflin CHILD DEVELOPMENT BOOK.
NEWS & NOTES. "We invite editors of other newsletters to reprint items from NEWS & NOTES, provided proper credit is given to the source. Please clearly delineate the material you are printing, indicate that it comes from NEWS & NOTES, the newsletter of down syndrome/Aim High, P. O. Box 12-624, Albany, NY 12212." They ask that reprints include the preceding statement. As I have said before their dues are only $10 and each issue of their newsletter is worth that much.
Each issue contains many articles worth reprinting, but due to space limitations I have selected only the following which I recommend you save as there likely will be medical situations where you will want to find recent publications relating to the problem and most librarians will be happy to use this source for you to obtain information:
"The National Library of Medicine has now opened Medline to everyone. Medline is the online service that Doctors have been able to use to find all the published articles on subjects that interest us. It is now available for free for everyone. You can sign on to Medline at: (http://www.nlm.nih.gov/databases/medline.html).
MARY COLEMAN, M.D. She has an Editorial in the June DOWN SYNDROME QUARTERLY titled "Vitamins and Down Syndrome" which concludes:
"...we must be careful not to interfere with the metabolism of children with Down syndrome until we understand what we are doing. Properly handled from birth with knowledgeable educational and medical care, the overwhelming majority of children with Down syndrome now have great potential for a good life and it is important not to experiment on them for the sake of an elusive 'miracle cure'."
She started the editorial by citing a 12-20-96 "Nightline" television show that gave the impression that multi-vitamins were an exciting new treatment for Down syndrome.
We and Robert (among others) were privileged to be associated with Dr. Coleman with her brain research program for children with DS in the early 70s and later she and I founded DOWN SYNDROME PAPERS AND ABSTRACTS, which in a sense was the predecessor of DOWN SYNDROME QUARTERLY, and she is listed as Editor Emeritus of DSQ. She, her children, and her mother were all very gracious. She has been an international leader in the effort to develop more scientifically based facts on Down syndrome.
FROM HONG KONG: OCULAR ABNORMALITIES IN DS. The May PEDIATRIC NEUROLOGY on pages 311 - 314 contains their report on 140 children treated between '85 and '96 in the Duchess of Kent Hospital. Only 43 had no ocular abnormalities; 58% had refractive error; 20% strabismus, and nystagmus 11%. None had Brushfield spots or kerotoconus. The authors state that the only comparable study was that of Nancy Roizen, et al. of 77 Chicago children with DS reported in DEV. MED CHILD NEURAL 1994:36:594-600.
GROWTH HORMONE. We still get inquiries on this subject so we want to alert those seriously concerned that a supplement to the July THE JOURNAL OF PEDIATRICS is devoted to this issue, which provides the proceedings of the tenth national meeting on the subject edited by Professor D.B. Allen, M.D. of the University of Wisconsin Children's Hospital. You can also write the Journal (11830 Westline Ind. Dr., St. Louis, MO 63146-3318) for availability information.
IF ONLY I HAD KNOWN/LATER-AGE PREGNANCY. These two recent articles relate. The first is on Page 4 of the September MAYO CLINIC WOMEN'S HEALTH SOURCE. The second is in the September 1997 LADIES HOME JOURNAL. Your librarian can get you both articles through I.L.L. Certainly anyone over 40 should be aware of the risks of late-age pregnancies. However, I'm not sympathetic for the mother described in LHJ as it seems she would rather not have had a child than another imperfect one. Her only child (from a previous marriage) died at age 2 with a brain tumor. She had CVS done at almost the 9th week and no problems were reported. The baby had no fingers or thumbs when born. Later, she saw that the baby was good, even though not perfect and it seems to me that view should be held by all prospective mothers as none of us are perfect and generally a baby is a blessing. Anyhow, the mother became aware of other babies with birth defects after CVS and contracted with a lawyer on a contingency basis and finally negotiated a settlement. Enough for that article.
The Mayo article says most older mothers have uncomplicated pregnancies and healthy babies even though at a higher risk for complications. One of the charts is much like one a friend, the great Hanz Zellweger, M.D., gave me 25 years ago, showing the chances of having a child with DS at ages 20 (1 in 1,667), 35 (1 in 378), 40 (1 in 106), and 45 (1 in 30). The Mayo article also provides information in multiple births, cesarean deliveries, planning, and the benefits of waiting; their website is Mayo Health O@sis at http://www.mayo.ivi.com. The HEALTHSOURCE is published monthly ($24 per year), 200 First St., S.W., Rochester, MN 55905. We endorse it and particularly suggest you have the page cited as someday an acquaintance, friend, or relative may be interested.
SAM AND KARI JOHNSON. In the Autumn issue we had articles on Robert's "middle" brother (Peter) and sister (Margie Brekken). Robert went last week to Devils Lake, ND with his youngest sister (Kari) who will be Resource Room Manager for 12 special education students at Devils Lake. She had a similar job for a couple of years, but most recently has been the Community Prevention Networker of a substance abuse program. Robert is on vacation and will be helping her move.
Robert's eldest brother (Sam) is North Dakota Teacher of the Year for 1997 and Robert likely will help him with yard work and completion of a deck building project. Earlier this month Sam spent two weeks at the Space Center in Huntsville, AL, along with some of his counterpart "teachers of the year." Late this fall he will be going to Russia on a somewhat similar visit.
QUESTIONABLE TREATMENTS. Certainly, I have seen many programs that purport to aid chronic conditions, but appear to be scams. In some cases FDS intervenes, but in many others, there is no opposition so the practitioners continue to trade hope for dollars. I'm looking at a flyer announcing a program in late August that seems unlikely to a cynic like myself, to offer any real relief, but some people will try anything and the practitioners are marketing experts who know how to market their wares. Perhaps the best source of corrective action and information is the national and regional support organizations for specific conditions (such as DS) who might not label them as quacks, but certainly wouldn't endorse any treatments that haven't proper double blind studies or other research to back their claims.
AMERICAN FAMILY PHYSICIAN. This is one of many resources we use. It is published monthly by American Academy of Family Physicians (800-274-2237 or 800-944-0000). The August issue contains "Primary Care of Adults with Mental Retardation Living in the Community" by Barry Mortin, M.D., which says atlanto axial instability occurs in more than 210% of patients with DS. To prevent the occurrence of spinal cord compression, lateral cervical radiographs should be obtained before these patients receive general anesthesia for the first time. You probably can get a copy of the article or information on how to do it from him. Director of Clinical Services, Met. Denver Provider network, 15501 E. 13th Avenue, Aurora, CO 80011. Your librarian probably can get a copy through I.L.L. (pages 485-494). I should think any physician with a patient who has a patient as identified in the title of the article would appreciate a copy.
HOW MUCH WILL SOCIAL SECURITY PAY. Page 60 of KIPLINGER'S PERSONAL FINANCE MAGAZINE treats this question and includes an official SSA request form. You can write directly to SSA as it is very important to become fully covered. Since the President reputedly will soon be making recommended changes to Social Security, I have asked Senator Daschle to consider recommending that everyone with 5 years or more of coverage be given pro-rate payments based on the comparison with being fully covered (40 quarters or 10 years).
WHO'S WHO IN THE WORLD. Robert has received a letter from Paul Canning (Editorial Director) telling him he will be included in the fifteenth edition and offering congratulations and best wishes. This is particularly commendatory since FDR has been recently honored with a statue and was seriously disabled with polio. We aren't trying to equate Robert with FDR, but neither of them consider(ed) the disability as more than a serious handicap. WHO'S WHO now offers an Enhanced Biography published in unabbreviated standard English prose, well worth the $75 charge, but Robert opted for the traditional terse "no charge" sketch. We will still send anyone who provides a SASE two legal pages; one consisting of his personal history plus a page dedicated to his education. Anyone interested in getting information on the twenty or so WHO'S WHO publications should write Paul Canning at 121 Chanlon Road, P. O. Box 5, New Providence, NJ 07974-0005. I have found WHO'S WHO to be a reputable publisher providing considerable value to biographees.
DISABILITY FUNDING NEWS. This semi-monthly reports on Federal and private grants and says it has been doing so since '61. The 7-9-97 issue lists the titles of previous articles this CY but I'm sure you recognize that titles, captions, etc., don't indicate how accurate or valuable the information is. I'm quite sure if you call them at 800-666-6380 they will send you a sample copy but a subscription costs $269 (8204 Fenton St., Silver Spring, MD 20910). They guarantee a full refund if you cancel within 90 days. In this issue one item says the Mabee foundation makes grants for special education projects for disabled children and provides the phone number (918/584-4286)
NDSS MEDICAL SYMPOSIUM. Scheduled for November 20 - 22 at Amelia Island. Call 800-221-4602.
AAMR REGION VIII ANNUAL CONFERENCE ON SEPTEMBER 28, 29, & 30, 1997 AT THE CLARION HOTEL IN OMAHA. Call 800-656-3937 for details if you might attend. It will be both meaningful and fun!
HILLS OCTOBER 28 - 39 CONFERENCE IN LEAD, SD. Write Dakota Works, c/o Brooke Severson, 435 S. Chapelle, Pierre, SD 57501 now for details. It is inexpensive and should be rewarding for all.
REFUND POLICY. At any time you can get back all you have sent minus $1 for each issue sent you. The same goes the other way. If we should cease publication, you will receive your money back minus $1 for each issue we have sent. We intend to publish every other month again so there is no time frame to contend with, but our current policy started only a few years ago.
Today's mail brought a $25 check from a physician who probably has served a thousand people with DS and likely will serve many more. Requests from Honolulu and Colorado Springs asking for our freebie "one to any person in the commuting area claiming affiliation with a DS group, and a letter from the sister of a 58 year-old man with DS, who asks why should we pay postage when our paper isn't going to provide them with knowledge for their stage in life (her brother has AD); she concludes: "Thank you for the association for past years and best wishes to both of you." I'm challenged to do my best for all three and when Robert gets home we will go over the mail and find out how he prioritizes the three messages. (Robert says we have to try hardest to provide the physician with good information, whereas if I had to prioritize, our long time partner with the 58 year old brother who now has DS & AD would come in first).
50% of the 29 million disabled Americans, age 21 to 64, are employed. (Although only one-quarter of those who are severely disabled work). All together, they account for 14 percent of the employed population. The preceding was in the Aberdeen American News which attributed the source to "Wire Reports."
TELECOMMUNICATION/DS ON-LINE. The summer MADSC NEWS (3408 Wellborne Dr. E, Mobile, AL 36695 or MADSC@juno.com) prompted this article. If you want a list of internet resources on DS contact them (Paul Connolly). Paul strongly endorses going on-line now! NP and public rural health care providers can now purchase 1544M bps bandwidth service at rates comparable for similar services in the nearest urban (50,000 + pop.) center + 30 hours monthly Internet access. S.385 by Sen. Kent Conrad (ND) would require HCFA to cover Telemedicine under Medicare. Magnavox recently has had full-page ads displaying a VCR like device that plugs into a telephone line to use your TV to get on the Web (800-WEBTV26 or www.consumer.philips.com/ ). To get on the MADSC mailing list send $10 to Paul.
TRISOMY 21 IS ASSOCIATED WITH HYPERCHOLESTEROLEMIA DURING INTRAUTERINE LIFE. This was in the March AMERICAN JOURNAL OF OBSTETRICS & GYNECOLOGY by four medical doctors from the University of Milano, Italy. They concluded that the mechanism is still unknown through which high levels of cholesterol during prenatal life are not leading to increased risk of atherosclerosis. Their penultimate sentence is: "Perhaps patients with DS being generally good tempered and happy, lack the stress of daily life to which most normal individuals are exposed." Up to the comma the comments fit Robert, but I suspect his exposure to stress doesn't deviate much from others, and may be greater since he doesn't understand all the information he is exposed to.
|PEOPLE WITH SPECIAL NEEDS/DS REPORT||Non-Profit Organization|
|Northern State University||U. S. Postage Paid|
|School of Education, Box 850||Aberdeen, SD 57401|
|1200 S. Jay Street||Permit No. 77|
|Aberdeen, SD 57401-7198|
|Revised: June 14, 1998.|