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"The Clarion" NewsletterSummer Camps C.A.M.P: Camp Cheerful: Camp Riley: Camp Sacramento for Kids: Camp Goodwill: National Sports Center for
the Disabled: Lee Mar Summer Camp for
special needs kids & teens: Camp Huntington for kids: Camp Attitude: Upward Bound Camp: Life Path: Marbridge Summer Camp: Problems with Slow Elimination? After a warm bath, have a warm drink and gently massage a warmed gel on the belly. 1 TB in 1 cup water daily of Miralax works wonders.Miralax is Polyethlyene glycol, a natural substance secreted with the stool. For Reflux www.g-tube.com has a column called "Living with Tube feeding." PAGER is the REflux Assoc for
kids and teens. 301-601-9541 www.reflux.org On the internet is Reflux Digest . 2329 Fallbrook Place, Escondido, CA 92027- 6739 Doctors are working on tightening the Seating/Sleeping Aquila makes an airpulse 16" or 18" chair cushion -a Rojo with alternately inflating rows, shifting pressure contact points to prevent collapse of blood vessels and sores. An armrest knob changes inflation frequency. 16 hour battery with low pressure alarm - or use the chair battery.$1650+$15 to ship. 888-878-1141. www.aquilacorp.com Pegasus makes an alternating air cushion and mattress. Its cushion operates from the batteries.www.pegasus-airwave.com. The Pillo-Pump Air Mattress by Gaymar looks like a thick piece of plastic: 2 thin plastic sheets with figure 8 pockets'. Air is pumped into half of the pockets, which then deflate and the alternate pockets fill. The pump is quiet, and when the motor is off, the mattress flattens and firms up. Place a mattress pad over the Pillo-Pump to soften the feel. Order through your medical supply dealer. The rental fee is covered by many insurances. Medical Plans and Adaptive Equipment and Clothing Click
Here for a template to aid in submitting to your
insurance company or service professional for clothing
costs. Save and list receipts from all purchases that you make that the able bodied don't. This list is our hidden disability! Possibly you can use the list at tax time.If adaptive clothing helps you be or become more independent, such as to use the bathroom alone at school or at work, and there is a doctor who knows your situation well, ask the doctor to write a prescription for adaptive clothing. Write a letter to the doctor in which you state, for example, how a waterproof cape could keep your legs dry as you wait for the bus, so that you arrive ready to work, or that pants that open more easily could enable you to cath much more safely, or to transfer alone in the bathroom. Sign the letter and keep a copy. If there is a vocational rehab person or a family service professional with whom you meet, send them a copy. Mail the letter to your doctor and call to explain your purpose. Prescriptions are written for adaptive equipment because it is medically necessary for functioning. Sometimes clothing makes the difference between being trapped in the house or being free. Then call your local large pharmacy or equipment store or visit them and make friends with the person who arranges billing for you. This person does all the legwork, and deserves a Christmas card! Direct the prescription to the store, but ask them to mail you a copy. This store is called -- Mobility, --- Rehab, or --Medical Equipment. The store will then buy from the manufacturer at a discount, ship the products to you, and bill Medicaid or the insurance. A prescription makes a claim hard to deny, but there may be quite a delay, or, you may have to pay a part of the claim yourself. By submitting the claim, you are making the job easier for the next person by creating an awareness of the need for clothing. In Europe adaptive clothing is covered because the need is openly acknowledged. Gastrointestinal Slowness If the bowels empty only every 4 days, the intestines may become distended and stop working. This could lead to a colostomy or pancreatitis, in which the pancreas can't secrete its enzymes because its exit is blocked.Miralax in plenty of water keeps things moving. Pour the powder in the measuring cap in 2-3 cups of water and stir, then pour in G tube or pour on ice cream. It produces, especially with a warm washcloth on the belly. Miralax tastes flat; mix it with plenty of liquid. It is harmless, and is secreted with emptying. A quarterly newsletter from the IFFGD, International Foundation for Functional Gastrointestinal Disorders, is very instructive. A G-tube is an excellent way to give meds, ensure nutrition and enough liquids, and to vent when there is hyper acidity and gas- common with CP. Fatty foods like pizza remain in the stomach overnight undigested and irritate it. Try not to use Amoxicillin, Ampicillin, or Cephalexin repeatedly. They can destroy the beneficial bacteria in your intestines. This can lead to a common hospital bacterial infection called C Difficile- the worst diarrhea imaginable. It can also occur repeatedly in patients frequently hospitalized. It injures the skin, as diapers plaster bacteria against the skin. Use an antibiotic when there is true bacterial infection only! Botox and Baclofen We tried botox injections, oral Baclofen, and surgeries to relieve spasticity. For us, the Baclofen pump implanted near the waist was the most successful. Every three months, a needle is inserted into the center of the pump to refill it.A computer sets the pace at which the solution is dripped into the spinal fluid. It seeps up to the brain and is absorbed in the ventricles. Dosage varies according to personal sensitivity. Side effects include a sleepy bladder, afternoon doziness, and depression when the dose is at your personal peak These effects can wear off. With the pump came easier movement, such as lifting arms, straightening legs, and opening fingers. Withdrawal if the pump malfunctions include: crabbiness, discomfort and tightness if it works too slowly, and dangerous sleepiness if it works too fast. It needs to be monitored and should not be used where there is staff turnover, or for tiny children. The pump helped us greatly with swallowing rice, soups, and cereals. Sleeping A false back behind two stacked lower waterbed drawers makes a 34'' high bed on 4 drawers- no bending!We've had no pressure sores in 8 years. Pull to a seated position on the padded side bar. Affording Prescriptions www.themedicineprogram.com http://www.phrma.org/patients/ www.needymeds.com/ Hotel Bed Help Very Special Traveler Wheelchair Traveler It is illegal for foreign pharmacies to sell U.S. citizens drugs by mail. Some internet pharmacies with no valid address and no real pharmacists sell prescription drugs such as Cipro without a valid prescription.If your loved one with a disability catches a virus, your regimen needs temporary support -more vegetables, more sleep, more frequent meals and vitamin tablets, Miralax every day if usually every other day, perhaps an enema, and an afternoon nap. Sinus congestion seems to be causing more headaches. A child who cries more than usual may be having headaches, or constipation. Claritin has been effective for some in reducing headaches and aiding sleep. A good holistic medicine MD or physiatrist should be monitoring your regimen. http://www.nafc.org/ For G-tube users: Meat tenderizer (through the tube, not the body!) eats protein deposits in the tube extension. Use a syringe of 1 tsp tenderizer in 1cup warm water every few days. For brittle bones: Cal Burst are non prescription candies like Tootsie Rolls. Myocalcin is a prescription nasal spray, alternating nostrils daily, that takes calcium from the blood to the bones. Our doctor says we need 500 mg of calcium in tablets three times daily. Try eating broccoli and adding Instant Breakfast powder to a shake. For water in the ears: Use an eye dropper to put 1-2 drops o f rubbing alcohol in each ear after the shower. Liquids: Hang a water bottle in a mesh bag from the headrest bar. Clear, flexible plastic 3/8” tubing in 13” lengths makes straws. Buy a tubing brush from a medical supplier for cleaning. New Developments! Voicevoting.com will enable us to vote using our voice! Step on It! AT & T distributes free phones to disabled customers which operate by scanning preprogrammed numbers. You hit a switch when the desired number lights up, and the phone dials it. At the Abilities Expo, we saw the E Z Chair. It's a 30 lb fabric backed folding chair that can be pedaled with little force and fits in a trunk. Call 800-438-5630 (Prince Products). PT Cruisers are n-ow adapted- with swivel seats and hand controls-dr5-ive from your chair. A small electric chair could fit in the back with the addition of a ramp. (Freedom Motors 888-625-6335 ). EZ Access by the Trace Center at the University of Wisconsin speaks ballots in the voting booth; has large print. Also works at ATMs. A free screen reading program called ReadPlease can be tried at www.magnifiers.org/ New screen readers and screen magnifiers are bundled, with more natural speech. Most cost over $500, but ReadPlease has a free version and a $50 deluxe version. Important workshops If you are interested in the latest technology, two important workshops are held each year.The Cal State Northridge Center (north LA) on Disabilities holds a conference each March. 818-677-2578. "Closing the Gap" newsletter has an excellent conference each October in Minneapolis. Call 507 248 3294. Each conference publishes its proceedings if you can't attend. We have attended each one and highly recommend them. www.SayICan.com Hang a curtain behind you to prevent your voice from bounding off hard surfaces and confusing microphone input. A wand microphone sits on the monitor and screens out background noise. At www.talkingweb.com you can register with a browser that supports voice commands; it connects to a desired page and plays it back to you. Preferred Version 5 of "Naturally Speaking" is much improved. Or use eyes to signal the cursor (Eyegaze) or the tongue. Call National Center for Disability (516-747-5400 ) or VESID (516-483-6510), both in NY. Ask them for a center near you. Tech Assistance agencies fit donated computers with modems. The Library for the Blind/ Disabled lends players and tapes. Regular updated catalogues are sent out with listings of taped books. Some Useful Products: From Sammons- Preston:
For those without the use of one arm, Accessible Accessories offers a vest with a built-in arm support. The wearer sips the arm through the opening in the vest instead of using a sling. To buy or sell Used Medical Equipment go to: http://www.medsell.com Equipment Exchange Equipment Connection Online connects buyers and sellers of used adaptive equipment, listed by category in price order.Click on the item for more detail. $15 lists your item until it sells. Contact the seller if interested. http://comnet.org/local/orgs/kenny/eq_index.html
A lot of exercise equipment is available. Several machines can be seen at Abilities Expos. Viva! is a small
floor sitting wheel with manual pedals Slim Master
(800-758-3460) Ergys 2 has a motor
that cycles your legs at 50 RPM Power Trainer
800-852-6869 Saratoga makes another platform with combos of arm or arm and leg pedaling. 800-474-4010. Freedom Ryder, Invacare, Quickie, and Freedom Concepts all make adapted bikes.
Choose a pack that you can hang from the side of your chair or lie by your thighs, with one main velcro compartment. Our Barrier Free (800 582 8732) ceiling lift is 8 years old with no problems, covered by insurance. Made in Europe, it’s serviced by local distributors. Other lift
companies: Chairs: For the proportional touchpad for Invacare chairs: www.invacare.com The Toilet Riser raises a toilet 4". Made of PVC, it weighs 12 lbs but supports 1000 pounds. $99 from Medway Corp in Ohio. 800-817-3118. International Access Directory Write Rehabilitations International
U.S.A. or Access for the Handicapped, For air travel: Discovery Hills Travel advertises ADA cruises: 800-750-5975 Magazines: Abled Woman, is
published quarterly for disabled women. Special Living is published by the publishers of Accent on Living: P.O. Box 1000 Bloomington, IL, 61702 Disabled Dealer
magazines Recreation For accessible camps visit www.campdepot.com or write: Camp Depot The Guided Tour takes developmentally delayed people on trips:http://kidscamps.com/specialty/special_needs/guidedtour/ Web Sites http://sacramento.networkofcare.org www.makoa.org/index.html www.projectaction.org/paweb/index.htm www.pedors.com www.atacess.org www.compaqworks.com www.halfprice.com/retail.html www.dell.com www.kensington.com www.medicare.gov/NHCompare/ www.swim-diapers.com/ www.familyvillage.wisc.edu/ www.familyvoices.com www.childrenwithdisabilities.ncjrs.org/ www.enablingdevices.com www.healthfinder.gov/ www.disabilitytravel.com www.closingthegap.com MS Association: 1-800-FIGHTMS Parkinson's Foundaion: 305-547-6666 800 223 2732 Spinal Cord Injury: 800-526-3456 800-962-9629 Stroke Institute 800 352-9424 Canine Companions 800-572-BARK Parent to Parent: 800-651-1151 Center for Rehab Tech 800-726-9119 NICHY (Youth with Disabilities) 800-695-0285 Abledata (assistive tech) 800-227-0216 MDA 800-572-1717 UCP 800 USA 5 UCP Interesting Catalogues:Bodysense- aromatic sinus and heat aids 888-441-7890 Sammons Preston 800-631-7277 positioning aids Rifton 800-777-4244 positioning aids Computer Speech Dictation: 617-893-5151 Dragon Enrichment 800-323-5547; Functional Solutions 800-821-9319 Adaptability 800 288 9941 Daily living aids Toys Lakeshore 800 4215354 Flaghouse 800 793 7900 Memory Devices, dictionaries Franklin 800 525 9673 Switches /artificial speech: Prentke Romich/TASH 800 262 1990 ablenet 800-322-0956 www.ablenetinc.com
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