THE MYOSITIS ASSOCIATION

Products IssueSUMMER 2004

In this issue:

CCllootthheess ffoorr aallll aaggeess .. .. .. .. ..33

MMyyoossiittiiss 2244//77 .. .. .. .. .. .. .. .. .. ..44

EEvveerryyddaayy ttiippss .. .. .. .. .. .. .. .. ..66

GGaaddggeettss .. .. .. .. .. .. .. .. .. .. .. .. ..77

JJuuvveenniillee mmyyoossiittiiss .. .. .. ..88-1100

CChhiilldd’’ss cchhaannggiinngg nneeeeddss .. ..88

BBeeyyoonndd mmeeddiicciinneess .. .. .. .. ..1100

CCoommppaanniioonn aanniimmaallss .. .. .. ..1111

GGaarrddeenniinngg ssoolluuttiioonnss .. .. .. ..1122

CCrreeaattiivvee oouuttlleettss .. .. .. .. .. .. ..1133

BBuuiillddiinngg aa hhoouussee .. .. .. .. .. ..1144

TTaaiilloorreedd kkiittcchheenn .. .. .. .. .. .. ..1155

DDrreessss yyoouurrsseellff iinn ssttyyllee .. ..1166

BBuuyy wwhheeeellcchhaaiirrss oonnlliinnee ..1177

RReessoouurrcceess .. .. .. .. .. .. .. .. .. .. ..2222

Thank you to all the memberswho contributed their thoughtsand experiences to make thisissue a valuable resource.

We would also like to thankBBrriissttooll-MMyyeerrss SSqquuiibbbb, GGeenneenntteecchhand BBiiooggeenn IIDDEECC who helpedfund this issue with unrestrictededucational grants.

It’s difficult to know when you mightneed a cane, walker, wheelchair, liftcushion, or other device to help youget around. A recent member-drivensurvey on the TMA Bulletin Boardrevealed that there isn’t one “time”for everyone. A large part of this dis-crepancy comes from people beingdiagnosed at different stages in thedisease, so some who responded tothe online survey may have actuallyhad symptoms longer than otherswhen they were finally diagnosed.Age, health before myositis, andtreatment success may have also beenfactors in this survey.

SSoo wwhhaatt ddiidd tthhee ssuurrvveeyy tteellll uuss??Canes were typically the first aidsadded to daily routines, with mostwho participated in the survey relyingon a cane for at least outdoor walkingwithin 3 to 4 years of diagnosis.Walkers soon followed, andwheelchairs, including power chairsand scooters, were added only whenother methods failed to prevent fallsor when the situationbecame too difficult forcaregivers to help.Lift cushions,reachers, braces,and other equip-ment were alsoused.

Many otherdevices areavailable tohelp with dailytasks, taking somedemands off bothyou and yourcaregiver. These

aids lessen frustration and make lifeeasier. This OutLook Extra exploresthese options with your help. Youhave written to us and posted on theBulletin Boards, and we haveresearched other ideas for you aswell.

HHooww wwiillll yyoouu ddeecciiddee wwhhaatt ttoo uusseeaanndd wwhheenn??From reading many emails, lettersand posts, it is apparent that somegadgets and strategies work for somewhile not for others. As with the dis-ease itself, each person is unique.

Keep your own specific needs inmind. What is causing you trouble?What type of device or solutionwould solve these problems?

Remember the saying “less ismore.” Sometimes, the basic productis all you need to help you out themost.

Consider safety. Choose the prod-uct or strategy that will be both safeand effective.

Many of you have foundready-made products thatwork; and some of you

have taken convention-al products and

modified themto fit yourneeds. Wehope this Extra

will introduceyou to just the

right tool or igniteyour creativity to

make your own!

Time for a change?

2

Published by: TMA, Inc.THE MMYOSITIS AASSOCIATION 1233 20th St., NW, Suite 402Washington, DC 20036P: 800-821-7356F: 202-466-8940Email: tma@myositis.orgWeb: www.myositis.org

Executive Director: Bob GoldbergEditors: Theresa Reynolds Curry

Kathryn SpoonerGraphic Design: Jami Latham

BOARD OOF DDIRECTORSRichard Bullard III, ChairpersonEdward Grass, Vice ChairpersonEarl Klein, Vice PresidentJanet Schuler, Vice President, SecretaryLynn Chapman, TreasurerJeffrey CampbellJanice GoodellConnie KeelinAndrea MacherFrederick W. Miller, MD, PhDJay ShinnRichard StevensonSeth StopekShari Weber

MEDICAL AADVISORY BBOARDMarinos C. Dalakas, MD, ChairFrederick W. Miller, MD, PhD, Vice ChairWalter Bradley, DM, FRCP, Research ChairLisa G. Rider, MD, Nominating ChairValerie Askanas, MD, PhDRichard Barohn, MDJeffrey P. Callen, MDW. King Engel, MDRobert Griggs, MDJeanne Hicks, MDChester V. Oddis, MDLauren Pachman, MDLawrence H. Phillips II, MDPaul Plotz, MDAnn Marie Reed, MDBarbara Sonies, PhDRichard Sontheimer, MDRup Tandan, MD, FRCPVictoria P. Werth, MD

STAFFBob Goldberg, Executive DirectorNeil Alpert, Development DirectorTheresa Reynolds Curry, Communications

ManagerJami Latham, Member Services &

Operations CoordinatorKathryn Spooner, Communications

Coordinator The opinions expressed in this newsletter are not necessarily those of The Myositis Association. We do notendorse any product or treatment we report. It is our intent to keep you informed. We ask that you alwayscheck any treatment with your physician. Copyright 2004 by TMA, Inc.

Dear Reader:

This is the second Products issue of OutLookExtra published by The Myositis Association.Last year's was very well received, and we thinkyou will find this year's to be equally helpful. Infact, you will find within this issue an indexfrom last year's issue so that you know what hasalready been covered and can refer back to lastyear's issue, if need be. If you need a copy of

last year's issue, please let us know and we will gladly send it to you.

This second Products issue follows the theme of independence for theindividual and that is what many of the products covered here aredesigned to do - to allow you to be self-sufficient and help relievecaregivers of some of the stress and strain.

We include an hour-by-hour approach to highlight products that canbe used round-the-clock to help you support yourself.

Although caregivers are critical to enabling many of those withmyositis to function daily, many of these products will enable you tobe less dependent on others.

There is true ingenuity and creativity in the talents and adaptationsour members have developed to produce these unique products.Share their success and revel in the ability of those with myositis tolive creative, enriching lives in spite of the disease!

Fondly,

Bob GoldbergExecutive Director

3

There are a number of adaptivedevices available for various reasons,but clothes don’t readily come tomind when you think of makingchanges. Buying a few articles ofclothing that make you feel morecomfortable and confident may bejust what the doctor ordered.

EESSPPEECCIIAALLLLYY FFOORR JJMM’’EERRSS

KKiidd-tteesstteedd,, kkiidd-aapppprroovveedd ccllootthhiinngg

For children taking prednisone, theweight gain tends to be drastic in ashort period of time due to childrentaking relatively higher doses thanadults with myositis. This weighttypically comes off quickly once thedose is lowered, so parents don’t wantto spend a fortune on a new wardrobe.But it’s important that your childrenfeel confident and, depending on theirage, in style as well.

Nikki Silver found an online cata-log to suit the needs of her daughterwhen Morgan gained weight. HannaAnderson offers stylish clothes with agood fit. “They have beautifulclothes and they all have an elasticwaist,” says Nikki. “What a blessingfor us parents.”

AAss ttoolldd bbyy yyoouu

Some of you have written in withyour own suggestions on what typesof clothes to buy when you’ve gainedweight. Lauren Adelman, a teenagerwith JM, says to keep it simple. Stayaway from form-fitting clothes,including pants that often cut tighterthrough the thighs. Stick with materi-als that have more “give” in them,like khaki or terry rather than denim.Lauren preferred cute short skirtswith an over-blouse. “An over-blousedid not emphasize my bigger tummyas much,” she says, “and was morecomfortable.”

She adds that buying too much atone time isn’t the answer: “I neverbuy more than one to two pieces of

clothing ata timebecause myweightchanged fair-ly quickly,especiallyinitially.”

These andother hints applyto both children andadults with myositis:

Choose darker colors and patternsthat compliment you; avoid patternsthat are too busy.

Go with flat-front pants rather thanpleated pants.

Wear V-neck shirts, which makeyour neck look longer.

Buy clothes in a bigger size, butkeep from getting too much bigger asthis tends to make you look bigger.

Replace top shirt buttons withVelcro, keeping the lower buttonsclosed while pulling the shirt overyour head. The Velcro is easier tomanage than fitting buttons throughbuttonholes.

CCLLOOTTHHEESS MMAADDEE WWIITTHH TTHHEEWWHHEEEELLCCHHAAIIRR UUSSEERR IINN MMIINNDD

For any of you confined to awheelchair or seated for most of theday, there are plenty of styles createdjust for you. (See also Ms.Wheelchair Virginia, page 16.)Certain styles simply don’t work ifyou’re sitting all day. Pants with ahigher waist in the front, for instance,may bunch up and become uncom-fortable throughout the day. Choosematerial that is less restrictive –khaki, cotton or polyester over denim.Or buy pants made especially for you.USA Jeans offers jeans and slackswith a lower front and higher back,giving the look of a more even waistwhen seated ($47.95); jeans fromRolli-Moden ($99) incorporate spe-cial pockets and flannel lining; and

Finally It Fits has anarray of wheelchairand standing pants($65) with Velcro clo-sures and knee pocketsto reach more easily.

Shirts and tops thatcome below the waist

may get in the way, tug-ging as you try to turn in your

chair. Buy tops that come just belowyour waist and settle comfortablyabove your sitting point. Some com-panies make tops that are shorter inlength and a bit wider at the bottomto allow for more flexibility.

Rolli-Moden even caters to theprofessional, designing complete suitsfor women and men, and sportcoatsfor men. They offer pre-knotted tiesso you can “just zip and go!”

There are a variety of accessoriesat most specialty stores, from scarvesand gloves to ponchos and leg covers.Visit them online or order their freecatalogs to find what clothes workbest for you.

Editor's note: If you’ve found a wayto alter the clothes already in yourclosets, let us know! Provide as manydetails as you can so others will beable to make their own modifications.

RREESSOOUURRCCEESS

Finally It Fits: 866-866-9740;www.finallyitfits.com; P.O. Box24708, San Jose CA 95154;info@finallyitfits.com

Hanna Anderson: 800-222-0544;www.hannaAnderson.com; 1010 NWFlanders, Portland OR 97209;

Rolli-Moden: 800-707-2395;www.rolli-moden.com; 12225 WorldTrade Dr, Suite T, San Diego CA 92128

USA Jeans: 800-935-5170;www.wheelchairjeans.com; 9062 East28th Street, Tulsa OK 74129;Darlene@wheelchairjeans.com

Clothes for all ages

4

MYOSITIS 24/7It’s a new world out there for peoplewith disabilities, as assistive devicesare improved and adapted to helpthem remain more independent. Forevery activity that’s necessarythroughout the day, there’s an inge-nious gadget, resource, machine orstrategy that makes the task a littleeasier. While we know that most ofour readers aren’t able to afford thevery high-end solutions, we’veincluded them here along with somelow-tech, low-cost items that aremore familiar. We’ve also includedproducts for different levels of dis-ability – those relying on wheelchairsand other devices to get around aswell as those who just need occasion-al assistance with specific tasks. (See“Everyday tips,” page 6, for many ofthe less expensive and more tempo-rary items and strategies.)

We hope the “hour by hour” for-mat, and the costs associated witheach item, will give our readers someideas, and start them thinking aboutways technology can compensate forsome of the losses that accompanymyositis. Thanks to the staff at TheDisabled Dealer for developing theinformation on technology for dailytasks and the costs associated withthem. We begin at midnight.

= MMiiddnniigghhtt

TTaasskk: SleepAAssssiissttiivvee ddeevviiccee:: Alternating airmattress with electric pump, for thoseunable to move around unassisted,prevents pressure sores and adds tocomfort. A higher-cost investment isa lateral turning bed and mattresscombination with pump, motor andelectronic controls to regulate thebed’s tilt and turning frequency.Emergency communication can beprovided by a bell, a switch withremote buzzer, a medical alert device,an auto-dial telephone, a voice-dialedcell phone, or an environmental con-trol unit with built-in phone.

CCoosstt::Air mattress ($60-$200)Electric pump ($250-$400)Lateral turning bed and mattress com-bination ($4,500-$12,000)Bell ($10)Buzzer ($40)Medical alert device ($30 per month)Auto-dial telephone ($30)Voice-dial cell phone ($100-$300)Voice-activated phone ($500-$1,000)Environmental control unit with built-in phone ($2,000-$10,000)Second phone line to accommodateother needs ($25 per month)

EExxppeerrtt aaddvviiccee:: Seek guidance forexpensive items, like the lateral turn-ing bed and environmental controlunit. Make sure to weigh the expenseagainst realistic expectations of per-sonal care needed to perform thesame chores.

1 11 aamm

Can’t sleep? Check the time and tem-perature by projecting it on the ceilingwith a special clock. Some environ-mental control units can tune the radioto music of your choice, a late nighttalk show, or a favorite old movie.

= 55::3300 aamm

TTaasskk: Wake up and exerciseAAssssiissttiivvee ddeevviiccee:: Personal care aidCCoosstt:: $5-$20 per hour

6 66 aamm

TTaasskk: Morning bathroom careAAssssiissttiivvee ddeevviiccee:: Use a showerchair next to the hospital bed; a slingwith a ceiling motor lift and overheadrail to transfer; or a Hoyer lift. Youcan also use a ceiling track from thebed to the bathroom instead of ashower chair. A renovated bathroomhas a special floor with center drain,waterproof tile walls, long flexible

shower hose and accessible washbasin; or a roll-in shower stall mightreplace an existing tub. An electronicfaucet makes bathing easier and saveshot water.

CCoosstt::Shower chair ($600-$1,400)Hospital bed ($1,000-$2,000)Sling ($200-$300) Ceiling motor lift ($1,800)Ceiling track ($1,500-$3,000)Overhead rail ($500 then $100 per foot)Hoyer lift ($900-$2,500)Renovated bathroom as described($3,000-$7,000)Roll-in shower stall ($1,200-$2,500)No-touch faucet ($550)

7 77 aamm

TTaasskk: DressAAssssiissttiivvee ddeevviiccee:: Special clothing(see pages 3 and 16) CCoosstt:: Depending upon the clothesyou choose, up to two or three timesthe cost of conventional clothing;alternatively, there are many ways tomodify what you already have in yourclosets.

§ 77::3300 aamm

TTaasskk: Settle in chair or wheelchairAAssssiissttiivvee ddeevviiccee:: Transfer into apowered wheelchair. Features like amotor-operated tilt, elevating legs,and reclining back may be essential.If you are leaving an upstairs bed-room, you’ll need a vertical or angledplatform lift or an elevator.EExxppeerrtt aaddvviiccee:: If you are unable toreposition yourself during the day,take some time to make sureyouroriginal position is comfortable.CCoosstt::Power wheelchair ($2,000-$5,000)Motor-operated tilt ($1,000)Elevating legs ($500-$1,000)Reclining back ($1,500-$2,500)

5

from possible pressure sores andother discomfort. Wheelchairs offertilt and recline features so you canshift your position.CCoosstt::Wheelchair tilt feature ($1,000)Power reclining back ($1,500-$2,000)

6 55::3300 ppmm

TTaasskk: Leave for homeAAssssiissttiivvee ddeevviiccee:: The options arethe same as getting to work (see 8:00am). In cold weather, use the capecoat (see 7:50 am).

6 66::0000 ppmm

TTaasskk: DinnerAAssssiissttiivvee ddeevviiccee:: You’ll need atable with plenty of leg room. A uni-versal cuff holds regular forks andspoons. If you’re dining out, ask forlarge pieces of food to be cut in thekitchen, or order meals like stir-fry,stews, salads and pastas that areserved in bite-size pieces.CCoosstt::Universal cuff ($12)

3 77::3300 ppmm uunnttiill bbeeddttiimmee

TTaasskk: In for the nightAAssssiissttiivvee ddeevviiccee:: Once you’re inbed, whether with the help of an aidor transfer, you can use your comput-er for bill-paying, working, email,games, reading, studying or writing ifyou have an environmental controlunit that includes mouse control. Thevoice-activated control will allow youto make adjustments to the bed posi-tioning, change television channels,adjust volume, make phone calls, diala radio station, set the thermostat andturn out the lights. To watch televi-sion from a reclining position, tryprism glasses.CCoosstt::Prism glasses ($80)ECU ($5,000-$10,000)

leaving at a slower time for traffic. Ifyou are in a wheelchair, you’ll needspecial accommodations.CCoosstt::Wheelchair van driven by carpool($35,000-$50,000 for the van)Specially-equipped vehicle ($60,000-$80,000)Wheelchair taxi service ($50 plus$2.50 per mile each way)

• 88::3300 aamm

TTaasskk: On the jobAAssssiissttiivvee ddeevviiccee:: Whether you’reworking at home, or are in an office,you’ll need a large, flat table, about42” x 60”, with non-interfering legs,whether custom built or from a cata-log. It must be of proper height forknees and of sufficient depth for com-puter display and elevated legs. Ontop must be workspace and telephone,and if needed, answering device,computer keyboard, display screenand printer, fax and copier. A motor-ized set of shelves is useful, and anautomatic door opener may be neces-sary unless there is a great deal oftraffic at doorways. A level IVEnvironmental Control Unit, wirelessand activated by a voice or keypad,would be a powerful aid in manycomputer-dependent job situations,like teaching, writing, surveying,engineering, design, scheduling, etc.CCoosstt::Table (custom) ($500-$2,000)Table (stock) ($600-$2,500)Motorized shelves ($1,500)Automatic door opener ($1,500-$2,500)Level IV ECU ($5,000-$10,000)

6 NNoooonn

TTaasskk: Lunch; relief from wheelchairpressureAAssssiissttiivvee ddeevviiccee:: Many wheelchairusers find it simplest to bring a lunch.Eating at your desk allows time tochange your position, offering relief

Platform lift ($17,000-$22,000)Elevator ($28,000-$36,000)

8 77::5500 aamm

TTaasskk: Eat breakfast; prepare forwork or school dayAAssssiissttiivvee ddeevviiccee:: You may find eat-ing breakfast more comfortable with autensil holder or arm fulcrum assist.A cape coat is easier to put on than aconventional coat. An automateddoor opener will help if thewheelchair user is alone at home.Thresholds up to three inches can beramped with modular ramping. Stepswill require either a ramp or a lift.Choose a custom-made ramp of pres-sure-treated wood or a modular metalramp. A vertical platform lift may bea good choice if the height is morethan about 30 inches or the space fora ramp is limited.CCoosstt::Utensil holder ($12)Arm fulcrum assist ($300)Cape coat ($60-$100)Automated door opener ($1,000-$2,500)Modular ramping ($50 per inch of height)Custom-made wood ramp ($125 perinch of height installed)Modular metal ramp ($120 per inchof height; $1,500-$1,800 per plat-form; $500-$1,000 installation)Vertical platform lift ($1,500 per footof height installed)

k 88::0000 aamm

TTaasskk: Go to work or schoolAAssssiissttiivvee ddeevviiccee:: Many cities nowhave public transportation providedby vans that are specially equippedfor wheelchair users. If you’re get-ting around with a cane or walker,most cars can accommodate you. Ifyou’re taking public transportationand need some assistance from canes,braces or a walker, you may want toexplore “flex-time,” coming in wellbefore or after the rush hour, and

6

GGeett aa ggrriipp oonn jjaarrss aanndd bboottttlleess“To more easily open new bottledproducts: Punch a very small holethrough the cap or lid. Such hole willimmediately allow equalization of thevacuum (gravity weight force of air),which holds such lids so tightly. Ifyou are concerned about leaving thehole in the lid open then just place apiece of scotch tape over the hole toreseal the jar. Another useful idea foreasier opening of jars is to wear rub-ber gloves such as those thin medicalgloves that are so inexpensive andavailable in stores. Wearing a gloveon each hand will make it much easi-er to hold both the jar and the lid foreasier turning to open and close allcontainers. These ideas do really helppersons with weakening hands likeme.” John/IBM

GGrraabbbbeerrss“I use ‘Gophers’ available from Dr.Leonard for $9.95 for the first oneand $7.95 for additional. I have fouraround the house and will buy a cou-ple more to put in my vehicles. I canpick up a dime laying flat on thefloor. My wife likes them also (she ishealthy)!” GMill (Bulletin Board)

“I too use ‘the gopher.’ Great in thegarage when I drop something. Onlyone problem: the little nut at the endof the rubber tip comes off, and is a‘bugger’ to find. REMEDY: Ireplaced the original nuts with ‘locktight’ nuts (the ones that have plasticinside the nuts), and the problemseems to have been corrected.”John/IBM

“I found one at WalMart made byInvacare for $9.93. It is 22 incheslong and will stand in the basket ofmy walker so I have it near all thetime. It has a pistol action handlewhich is easy to squeeze and rubbersuction cups on the end. I used it totake items out of the dryer, to pick uppieces of ice that I dropped, and to

retrieve shoes from the back of thecloset. This is going to be a veryhandy tool.” Dorris/IBM

“A very useful product I couldn’t bewithout is the AliMed Grabber – longhandle. It can assist in picking thingsup from the floor or nearby. It has amagnet at the tip. I have seen othergrabbers but this is better made thanmost.” Mikki/IBM

PPrraaiissee ffoorr eellbbooww ccaanneess“I have IBM and up to 2 years agohad many falls even though I used acane. I have read your summary ofequipment showing different handles,etc. Well, on my last fall (2 yearsago) I broke an ankle and after thesurgery and during physiotherapy inthe hospital I noticed a patient usingan ‘elbow cane.’ Thought I’d try it.WHAT A DIFFERENCE! Not a fallsince.” Ted/IBM

RRuubbbbiinngg oouutt yyoouurr iittcchhyy ssccaallpp“I have been using Head andShoulders soothing lotion for myitchy scalp. I found it at Target. Ithas reduced my itching by about60%. I hope it can help others. I canat least sleep at night now.”Tootwhistle (BB)

“I wash my hair with Paul MitchellTee Tree shampoo and conditioner. Ionly wash my hair every other day somy scalp doesn’t dry out too much.Make sure you wear hats (rain or shine)so your scalp isn’t exposed to the sun!You can get the shampoo at any superWalMart that has a salon or the beautystores in the malls.” Tricia/DM

BBaatthhiinngg bbaassiiccss“Spray in hair conditioner that youdon’t have to rinse out – this was alife or at least hair saver after kneesurgery, when taking a showerexhausted me, even using a chair.”Linda/PM

PPaappii-LLiifftt“I recommend alook at ‘PAPI-LIFT.’ Thisis aCanadianproductthat isveryhelpful foranyone need-ing assistance getting upfrom chairs, etc. A call to 1-800-889-5295 will get full informa-tion and photos. I have IBM andhave one of these and suggest thateveryone with IBM consider thisbathroom assistant. It is not inexpen-sive but mine is priceless to me.”Ernest/IBM

“Papi-Lift. This is a device that fitsright over an existing toilet or com-mode. Rechargeable battery operat-ed. It allows independence getting onor off the toilet. Well-built and defi-nitely worth the money.” Mikki/IBM

CClleeaanniinngg wwiitthhoouutt tthhee ffuussss“One of the most helpful items I havefound is the Black & Decker ScumBuster. It works great for cleaningthe bathroom, patio furniture, etc.,and they now have several new acces-sory brushes and pads. The onlydownfall is that you really need topurchase the stronger VersaPak Goldbatteries. The ones that come with it(silver) just don’t hold the charge.”Tricia/DM

MMoovviieess ddeelliivveerreedd rriigghhtt ttoo yyoouurrddoooorrTry NetFlix at www.netflix.com towatch all the movies you want with-out running out to the video store.For a monthly fee, you choose up to five movies at a time. Turn in yourwish list to NetFlix, and they’ll send

He said, she said: your everyday tips

See Everyday tips, page 19

7

EEaassii GGrriipp SScciissssoorrss:: When your fin-gers are swollen and have limitedflexibility, regular scissors are hard tohandle. These Easi Grip Scissors aregreat. I found some nice ones that areeasy to use at a Joanne Fabrics storeor you could try to get somethingsimilar at The Wright Stuff.

TTaabbllee FFiinnggeerr NNaaiill CClliippppeerr:: This isvery handy for cutting your own fin-gernails without having to handle theclippers too much. It is easy to make– have a friend or spouse make it foryou. Cut a piece of wood that isabout 3/4 inch thick, 4 inches longand 2 ½ inches wide, then sand it tomake it real smooth. Take a finger-nail clipper or a toenail clipper (I pre-fer the larger one), and attach them tothe wood piece. Both clippers have ahole on the top where you can screwit down and put two screws on theother side to keep it steady (screwshave to go in slanted so the head ofthe screw will hold it down). Or youcan use a thin wire to hold down theopposite end.

These are only a few things that havehelped me deal with my slow DMrecovery. I hope some of these willbe helpful to someone else.

RREESSOOUURRCCEESS::Sheepskin Fashions: 973-743-5858;www.sheepskinfashions.com

Melody Enterprises: 224Baldwin Street, Bloomfield

NJ 07003

Muffle-up (UK): 44 01253-822-392;

www.muffle-up.com;info@muffle-up.com

The Wright Stuff:877-750-0376;www.thewright-

stuff.com

By Sr. Teresa Meza, FSP

Editor’s note: Thanks to Sr. Teresafor sending in this list of products that

have helped her throughout herdays with dermatomyositis:

I have muscle weakness andlesions from dermatomyositis, as

well as vasculitis and Raynaud’s onmy hands. My main problem is withmy hands, which makes it very hardto do simple things such as to usegloves or mittens in the bitter coldweather, turn a key to get into myoffice, open a soda can or bottle, orsimply put on my socks or stockingsin the morning.

The following are a few practicalgadgets that make my everyday deal-ing with this disease a little easier inorder to be a little more independent.I have found some things through cat-alogs and on the Internet; others Ihave made myself or had someonemake for me.

HHaanndd mmuuffffss wwiitthh ffuurr iinnssiiddee:: It ispainful for me to put on gloves ormittens. Youll find fleece hand muffsand hand warmers at most sportsstores in the hunting section or atwww.heatfactory.com. (Though someproducts use animal fur, there areplenty of animal-friendly productsavailable to keep you warm. SeeResources for items made with fauxfur or fleece.)

PPeenn//ppookkeerr oonn aa ccoorrdd:: Using a reg-ular pen on a cord that can be foundin most stores, I took a rubber finger-tip, cut it a little, and taped it on theend of the pen. With a string, youcan carry this around your neck so itis always handy, especially for push-ing elevator buttons or opening thingsthat require using your fingertips.

FFllaatt ssccrreewwddrriivveerr:: This is veryhandy for opening boxes or letters

that you normally have to pull openwith your fingers.

LLaa CCrroossss TTwweeeezzeerrss:: Tweezers areuseful for any little things you wouldnormally use your fingernails to pickup. I have found that La Crosstweezers are easier to squeeze, andthey even have a model that is veryeasy to hold. These can be found atmost drug stores or Walmart.

EEaassii GGrriipp TTwweeeezzeerrss:: I have one ofthese that I use for everything, fromopening pill wrappers to candy wrap-pers.

LLoonngg-nnoosseedd pplliieerrss:: These are greatfor pulling harder wrappers or boxesapart. They can be found at any hard-ware or hobby store.

TTooootthhbbrruusshh hhaannddllee:: Your dentalhygienist/dentist probably has a sup-ply of these that he/she could giveyou. If not, you can make one foryourself out of the handle foamsdescribed below.

HHaannddllee ffooaamm ((ccoolloorr ccooddeedd)):: Thesefoam handles will fit cutlery, tooth-brushes, pens, pencils, tools, windowhandles…anything you can think ofthat hurts or bothers your hands tohold. You can probably find these ina pharmacy that carries special handi-cap equipment or at The Wright Stuff.

EEZZ KKeeyy TTuurrnneerr:: Until Igot this item, one of thehardest things for me wastrying to turn the key on adoor. I used to hurt myhands trying to openmy door. Of courseI could ask some-one to help me,but it feels goodto be a littleindependent!(The WrightStuff)

Gadgets for myositis

8

When you think of adaptive equip-ment, you probably picture canes,walkers and wheelchairs. There aremany other devices, both big andsmall, available to make life easierfor anyone in need of an extra boost.The products and strategies includedhere are by no means all of thoseavailable, but they give you someideas for adjusting to the daily chal-lenges of juvenile myositis (JM).

Check with your child’s physicianor therapist to find out what yourchild needs and what you can do tominimize the use of adaptive equip-ment. Using these devices unneces-sarily can have a negative impact onyour child, as he or she isn’t allowedto become naturally independent.There’s a fine line between pushingtoo hard and giving in too easily, andyour child’s therapist will help youdetermine the right path.

Even when you decide your childdoes require some help, decidingwhat to use depends on your child’sspecific disease stage, size, needs,and more. And many devices youuse will only be temporary. Familieshave shared some devices and strate-gies that have helped them alongtheir JM journeys.

MOVE AAROUND TTOWNIn a disease flare, your child mayhave trouble walking, especially dis-tances. Your own health is extremelyimportant, too, so be sure to think ofyourself when considering whether acane, wheelchair or other walkingdevice would help.

AA hheellppiinngg hhaannddWalkers and four-legged canes helpwith balance and allow your child toremain fairly independent whilemaintaining as much strength as pos-sible. Though your JM child mayfeel self-conscious using devicesuncommon to most children, oneJMer found a way to adapt them to

her own needs: “She put stickers onthe walker so it would be dressedup.” With a little creativity, any ofthese devices can become kid-friend-ly.

WWhheenn ttoo uussee wwhheeeellcchhaaiirrssJM children don’t often needwheelchairs for an extended period oftime, so consider renting from thelocal hospital or rehabilitation center.Usually, the basic model is sufficient.You can arrange cushions, neck col-lars, headrests and pillows to keepyour child more comfortable.

If your child will need thewheelchair for a longer time, buy onethat will grow with your child.You’ll find models with tilting backsand softer padding for more comfort.Ask your hospital or rehab center fortheir recommendations.

Many places, like malls and gro-cery stores, have carts, wheelchairs orstrollers to use, either free of chargeor for a small fee. For younger chil-dren, strollers or wagons are fun andprevent fatigue. Older children, whono longer fit properly in standardstrollers, may be concerned aboutusing a wheelchair because of how it“looks,” but there are still options.

SSttrroolllleerrss ffoorr yyoouurr cchhiilldd’’ss ggrroowwiinnggnneeeeddssIf your child is too big for a standardchild’s stroller, Shari Hume suggestsa “special needs stroller.” One modelis the Maclaren Major SpecialNeeds Stroller (available online atwww.Adaptivemall.com, $500 –$700). There are also several add-ons helpful for JM children, includinga sunshade and different pads. Thisstroller folds up like a typical umbrel-la-type stroller, measuring 10 x 10 x44 inches without the footrest whenfolded. “We were considering buyinga wheelchair for times when Parker istoo fatigued to walk,” says Shari,“but this is a much more attractive

alternative and doesn’t havethe same stigma attached to it.”The 7-inch tires allow you topush with ease, and the frontwheels swivel for easier han-dling. The Maclaren Strollerholds up to 140 pounds andincludes a five-point harnesssystem if you need to buckleyour child in the seat. The web siteoffers help in choosing the right size.

A less expensive option is thePogon Buggy Stroller ($300+). Thismodel holds up to 125 pounds andhas several extras like a carrying bagand footrest. The Convaid MetroStroller ($450 – $860) offers seatwidths of 12, 14, 16 and 18 inches,with therapists available to help youchoose the right size for your child.Depending on the size, the MetroStroller holds children from 5 to 11years up to adults at 250 pounds.

AVOID TTHE MMORNING RRUSHMornings are hectic times for mostfamilies, with children getting readyfor school and parents preparing forwork. If your JM child has troublewith certain daily tasks, this adds onto the time it takes to get everyoneready. To avoid too much rushingaround, get up a little earlier toaccount for the extra tasks you’llneed to take care of as a parent.There are a variety of other productsand strategies that can help, too.

SSttaarrtt yyoouurr ddaayy ooffff rriigghhttEating is awkward and frustrating iffinger and grip strength is weakerthan normal. Several items are avail-able to help:

Wide-handled forks, spoons andknives improve grip. You can buythese already made or add foam orlayers of duct tape to widen the han-dles.

Cutlery of different shapes makescooping, spearing or cutting food

Adapt to your child s changing needs

9

easier and help your child eatwithout your help.

Non-slipmats or plateswith suction

cups on thebottom keep

the plate frommoving while yourchild is cutting or

scooping food.

Food bumpers canbe put on the plate to

give your child a surface to push foodagainst when she needs to concen-trate on scooping, spearing or cutting.

Cups with a textured surfacerather than a smooth surface preventslipping.

DDrreessssiinngg aanndd ddaaiillyy hhyyggiieennee Even a simple task like brushing theirteeth holds challenges for some JMchildren. Colby, a young boy withJM, uses a Sonic toothbrush as rec-ommended by his doctor to help withbleeding gums from cyclosporine.The wider handle is also easier tograsp, and the battery-operated move-ment reduces the effort needed tobrush.

Getting dressed creates anotherdilemma. Physical therapists recom-mend you choose looserclothing as well asclothes and shoeswith elastic orVelcro fasteners.(See “Clothes forall ages”, page 3,for more detailedoptions.) Troubleholding their armsup, especially foran extended period,is a common com-plaint for JM chil-dren. One young JMchild used a reacher and longshoehorn to help herself: “Shethought they were neat because shewas fascinated with gidgets, gadgets

and gizmos,” says one family mem-ber. “She also wanted to do thingsfor herself and not have to wait forsomeone to help her.” She still usesthe reacher to get things from the topcloset shelf, even though she nolonger needs it for lower items.Long-handled hairbrushes keepchildren from reaching as far to brushtheir hair.

FIND AA WWAY TTO PPLAYPlaytime is essential for children, nomatter what age. It may be difficultfor them to participate in certainactivities, like bike riding or contactsports. Find hobbies and intereststhat are compatible with the stage ofyour child’s JM. Puzzles, crafts, col-oring books, computer games, andother activities will hold your child’sinterest and give him or her a creativeoutlet. There are products to helpchildren keep playing – holders tomake playing cards easier (even foryour younger children who haven’texperienced a change in mobility),easy-grip scissors, and slant boardsfor better positioning. (See page 15for more on arts and crafts.)

For those who enjoy physicalactivities – and whose activitieshaven’t been restricted – try a therapybike. “[The bike] had three wheels, a

large safe seat with a seatbelt,and a big basket for her

stuff,” says one JMcaregiver. “She loved itbecause she had neverbeen able to balance abicycle and wanted toride around the parkwith her sister.” Thisgave her the freedomshe needed to play, butit also gave her familypeace of mind that shewas safe.

HHEELLPP YYOOUURR CCHHIILLDDRREENN HHEELLPP TTHHEEMMSSEELLVVEESS

It's impossible to create a list ofitems every child will need overthe course of the illness. Somewill get by with few or no devices,while others need extra help for alonger period. Each child’sneeds change over time, too.

So how do you decide whatto use and when? Therapistsare available to develop a planthat can help you and your childwith daily activities. Here aresome things to consider:

Keep safety in mind. Keep anon-slip mat in the tub or showerto prevent falls. Determine whatareas may create extra hurdlesfor your child.

Make your child aware. Talkabout how they can help them-selves. Be sure your childunderstands the need to rest sothey won’t burn out. Discusshow they might get around cer-tain obstacles on their own.

Focus on strengths. It'simportant to interact with others,but soccer, bicycling and climb-ing may be out for a while. Tryless strenuous activities - boardand computer games, or artsand crafts - then invite others tocome over and join in the fun.

Encourage independence.Therapists recommend using theleast restrictive device possible.All parents want to help theirchildren succeed without frustra-tion. When children do things ontheir own, the rewards areimmeasurable.

When in doubt, talk to others.Use TMA's online Bulletin Boardand email listserv for JM familiesto hear how others have handledcertain situations. Though eachchild is different, other familiesare an invaluable resource.

10

MMoorree oonn sskkiinn pprrootteeccttiioonnSkin sensitivity is a common concernfor JMers, and sun protection prod-ucts and strategies are a mainstay inJM households. “We had sun protec-tive film put on all of our householdwindows,” says Suzanne Printz.“Prior to this, we kept curtains drawnand the house was dark and dismal.The window screening gives us peaceof mind that Abby is ‘safe’ against theUV rays while at home.” The sun’sharmful UV rays reach you throughwindows, on cloudy days, and inother seemingly unlikely conditions.

For more variety, families buyproducts with UV protection in thematerial – parasols and umbrellas,canopies, clothing, and hats. DonnaAnderson appealed to her son’s schoolto place light filters on the fluorescentbulbs in Colby’s classroom. These fil-ters can move with Colby as hechanges classes from year to year. Shehas also looked into an Ex OfficioBuzz Off® outfit – clothes with UPF30+ and an insect shield. These are abit pricey but worth the expense toprotect her son.

SSeettttiinngg uupp yyoouurr oowwnn wweebb ddiiaarryy“My husband set up a web site forour son,” says Condie Ward, “whichwas a therapeutic activity for him andled to many connections for gettingand sharing informa-tion.”

Ralph Becker initiat-ed “Julia’s JDMS Diary”when she was first diag-nosed with juveniledermatomyositis, spark-ing a number of otheronline diaries and journals.Most families new to JMfind Ralph and Julia’sinformation online and soakup the detailed entries ontreatments, side effects, emotionalaspects, and more. Both Ralph andJulia graciously provide their email

addresses for others to contact themdirectly.

AA mmoorree ppeerrssoonnaall aapppprrooaacchh“I have created a photo journal forQuinn,” says his mom, Karen. “I havephotographed the process of the homehealth visits and the doctor visits. Iam in the process of creating a scrap-book for him – something to look backat later when he is in remission.”

If your children are young, theymay not remember much about theirexperience with JM. Because this wasa major event in their lives, some chil-dren would like to know more.Having a pictures-and-words diaryhelps you as you retell the stories tothem. Several parents have comment-ed that they wish they had kept a jour-nal to remember all of the medicinesand their side effects. You may thinkyou’ll never forget, but most parentshave told us that their memories oftreatment details have faded over time.

TTeeaacchhiinngg tthheemm ttoo ttaakkee rreessppoonnssiibbiilliittyy“He reads the food labels for fat andsodium content because he knowsthat ‘low sodium and low fat arebest’,” says Karen. Quinn also helpshis home health nurse, Theresa, takeinventory of his medicine cart and

mix his medicines. Having asense of con-

trol helpshim dealwith the dif-ferent treat-ments andadjustmentsthat accom-pany JM.

For thesame rea-son, it’s

best to allowchildren to

choose meals among the healthfuloptions available. Children won’tdread the food limitations each meal

since they’ve decided on their ownmenus. Since lower sodium andlower fat are better in general, yourfamily can enjoy healthier meals, too.

Beyond medicines: strategies for JM families

HHEERREE WWEE GGOO AAGGAAIINN……

Sometimes it's not equipment ormedical supplies you need butdistraction. Your child enduresneedle pricks, pokes and prods,and after a while, this routinegets old. Candy and other sweettreats only work for so long.

So what can you do to helpyour child get through theselong treatments and doctors'appointments?

Read a book. Find a chapterbook that'll keep your child inter-ested so she'll look forward towhat will happen next.

Create. Arts and crafts are agreat diversion. Use this time tomake gifts for friends and familyor to just dabble in differentthings.

Watch a video. It may be thesame video time and time again,but as long as the story holdsyour child's attention, it hasdone its job.

Have a party. If your childhas home health nurses toadminister IVs at home, inviteone or two of his close friendsover for some quiet activitiesduring the treatment.

Talk on the phone. Doesyour child have a special friendor family member out of town?Let this be the time to call onsomeone she doesn't talk tovery often.

There are many activities you canfind if you use your imagination!

11

By GREG GLASSNER

Editor’s note: We’ve been followingwith interest the use of dogs to helppeople with disabilities other thanblindness. Thanks to Greg Glassner,Managing Editor of The MadisonEagle for his article on a man andhis companion dog.

Kevin Seale is a gregarious manwho spent 25 years of his life work-ing outdoors. Six years ago, he wasdiagnosed with Multiple Sclerosis.Seale now spends much of his timeat home, jetting around the houseand deck on an electric scooter. Ithas been quite an adjustment, butone made more bearable by his newcompanion, an assistance dog namedShamrock. Shamrock is an 87-pound, 2 1/2-year-old “Labradoodle”(part standard poodle, part labradorwith a father who was a goldenretriever). Shamrock has an evendisposition, shaggy hair and afriendly, almost human face.

So named because he was bornclose to St. Patrick’s Day, Shamrockis a highly-trained companion forpeople with disabilities – a graduateof Manassas-based Blue RidgeAssistance Dogs, Inc. Shamrockcan pick up items Seale drops, turnthe lights on and off, pull awheelchair, open heavy doors, pushelevator buttons, carry items in abackpack and accomplish other tasksthat Seale finds difficult, evenimpossible.

In the final stages of his educa-tion, Shamrock trained with Seale tocement the bond between them andto iron out key commands. “Thedog actually has to bond to me. Ihad him since the third day of train-ing together. We commuted togetherto Manassas.”

“He’s a tremendous help to me,”said Seale, who is home alone onweekdays. “If I tipped over or fellout of my scooter, he’s trained to get

help bygoing to aneighbor’shouse.”Other tasksShamrock hasmastered arefetching thephone when itrings and takingthings out of the refrig-erator. “We keep thethings I’ll need on thelower shelf,” Sealesaid. A sixth senseeven tells Shamrockwhen Seale’s diabetesis out of control.

Almost as important as the phys-ical assistance Shamrock provides isthe companionship. “I’m here bymyself basically eight to ten hours aday. I can talk to him and he does-n’t talk back,” Seale said. Sealefirst realized he had a health prob-lem in 1996. “I couldn’t walk acourse and keep up with a group,”he said. In 1997, at age 45, Sealewas diagnosed with MS. A bigchange in his lifestyle followed. “Ilost the use of my legs, one at atime. I can tell my hand what to doand it did it. I can look at my leg allday long and it doesn’t move,” hesaid. He and his wife Maggie start-ed looking for an assistance dogabout two years ago, found a pro-gram nearby through the Internet,and waited for about a year. Sealeentered into training with LydiaWade Driver, who runs Blue RidgeAssistance Dogs, Inc.

The dogs begin when they arepuppies, cared for by special puppytrainers who work with the dogsuntil they are ready for advancedtraining. For Seale, training includ-ed a shopping trip together withShamrock at a nearby mall. Forhim, Seale said, the companionshipis as important as the assistance.

SSOOUURRCCEESS::

Blue Ridge Assistance Dogs, Inc.:www.blueridgeassistancedogs.org;8600 Smith Lane, Manassas VA20112; 703-369-5878

Canine Assistants: www.canineassis-tants.org; 3160 Francis Road,

Alpharetta GA 30004; 800-771-7221; info@canineassistants.org

Canine Companions forIndependence:www.caninecompanions.org;

P.O. Box 446, Santa Rosa CA95402-0446; 800-572-2275

Companions serve the disabled in surprising ways

PPEETTSS FFOORR HHEEAALLTTHH

If you have pets, you've alreadyexperienced their uncanny abili-ty to sense how you're feelingand react to it. Whether it's adog nuzzling against you or acat purring on your lap, petscreate a sense of calm thatbrings about health benefits foryou as well.

Mayo Clinic documents thisimportant relationship in arecent e-newsletter. Researchshows that caring for pets low-ers blood pressure anddecreases the likelihood thatyou'll feel depressed and lonely.

Do you have the time,space, money and physical abil-ity to care for a cat, dog orother pet? If so, reap the bene-fits of companionship and betterhealth.

12

No activity combines our connectionwith the earth with our need to createas well as gardening. TMA membershave found ways to stay in the gar-den, over-comingweak mus-cles andlimitedmobilitywith inge-nuity anddetermina-tion.DorrisNorris,known by many as the “FlowerNanny,” has some suggestions formyositis patients who want to keeptheir hands in the dirt. Dorris findsthat she has a better grip using handtools with thicker (fat) handles.Something true in all gardens is thatit’s always easier to pull weeds or digwith a trowel when the soil is wet.Other hints from Dorris:

I have a rolling garden stool that Isit on; I can still get off it by puttingmy hands on either side and pushingup. It is hard, but I am determined todo it as long as possible.

I load everything I might need in ayard cart: plants, tools, gloves, phone,etc. This saves me going back to thehouse to get things I need; when I fin-ish, I load everything in the cart forthe trip back to the house.

I walk with my cane in one handand pull the cart with the other hand.I take one step at a time, pull the carta little ways, give the stool a shovewith my foot, and repeat the processuntil I get to my flower garden.

I go out very early in the morning,about 7:00 am, and try to limit myselfto working about an hour; then Icome in and rest on the bed for anhour. Before IBM, I worked in myyard all morning on many days; Icould always see something else I

wanted to do. Now, I don’t work out-side in the heat of the day because itmakes me weaker. I don’t garden atall in July, August and September,because we have such hot, humiddays here (Dorris lives inMississippi). I have to let the weedsgrow during those months. There issomething very therapeutic aboutpulling weeds, setting plants andwatching them grow.

GGaarrddeenniinngg yyoouurr oowwnn wwaayy

The University of Missouri has awonderful web site devoted to gar-dening for people with various typesof disabilities at http://outreach.mis-souri.edu. Jeremy Diener, who col-lected most of the information for thesite, believes that gardening can be avery good activity for people withdisabilities, as long as they give someconsideration to their own specialneeds. Here are some of Dr. Diener’ssuggestions, used with his permission:

Try raised beds. Raised beds pro-vide an excellent option if there’sspace and mobility to allow you tocare for these beautifulgarden plots. Eachraised garden bed willbe different dependingupon the needs anddesires of the individualgardener. As a generalrule, though, all raisedbed gardens should beeasily accessible and fitaesthetically into the sur-roundings.

Use garden pathways. Pathwaysthrough your garden are important,especially if you have disabilities.Garden pathways can be made out ofalmost any material, depending uponwho will be using the pathways mostoften. Whatever the material, pathsshould be firm, level and smooth, andthe grade should not exceed a 5 per-cent rise in elevation. Paths should

be of an accessible width for someonein a wheelchair or using the assis-tance of a walker to easily turnaround, and there should be a clearbeginning and end. You’ll need touse appropriate edging to indicate theborders of your path, and you’ll wantto use textured surfaces for bettertraction if you are not in a wheelchair.As an extra safety precaution, Dienerrecommends that you use contrastingcolors and textures to increase visibil-ity of your pathway and install gardenlights to aid in visibility. It’s a greatidea to place seating areas along yourpathway for rest breaks.

Be kind to your body. Dieneradvises people with muscle or jointweakness and pain to warm up jointsbefore beginning to garden, and dosome light stretching to reduce sore-ness later on; to keep tools and water-ing sources near the garden to cutdown on extra steps and conserveenergy; to garden at times when youfeel the strongest; and to use propertools (see next page) and keep themin good condition. For those withweak upper-body muscles, he advises

you to use thelargest musclegroup possible tocomplete a task.For example,when carrying abag of tools, placethe bag on yourforearm and let thelarge muscles of

your arm do the workinstead of carrying it with your hand.You should use a stool or knee padwhen working on or near the groundto protect your knees, wear gloves toprotect your hands, and change posi-tions frequently to avoid becomingstiff.

Choose the proper tools. Usingthe right tool is a vital part of suc-cessful gardening. Whatever style oftool you choose, try to find tools with

Ingenious solutions keep gardens growing

13

a depression or ridge in the handle foryour thumb to rest on, as this willkeep your hand in the proper align-ment. Use tools with longer handlesto cut down on the need to bend overor kneel, keep tools sharp and in goodcondition to conserve energy, and usethe lightest weight tool possible tocomplete tasks.

SSOOMMEE HHOOMMEEMMAADDEE MMOODDIIFFIICCAATTIIOONNSS MMAAYY HHEELLPP

Modifying your own gardentools may be the cheapestway to have custom tools.Almost anything can becomean adapted tool. Diener givessome suggestions, but invitesyou to use your imagination tofind more ways:

Use a length of PVC pipeand a funnel to plant largerseeds.

Place small seeds in aspice jar and sprinkle themonto the garden.

Use baseball tape woundaround the handle of your toolto create a larger surface areato grip. (Duct tape or anysporting grip tape will providethis thickness as well.)

Create a PVC pipe handleby heating an appropriatelength and diameter piece ofPVC pipe to 235 degrees inthe oven. **BE CAREFUL: thePVC will be hot!** Slide thepipe onto the handle of yourtool and gently squeeze to cre-ate a firm grip.

Purchase bicycle grips andslide onto the ends of tool han-dles.

Use foam pieces to enlargethe size of the handles ontools.

Large-size crayons and markers[i.e. Chubbi Stumps crayons,www.kaplanco.com]

Sponges or sponge-tipped painters

Finger paints or finger brushes[brushes at www.specialkidszone.com]

Art easels or slant boards[www.specialkidszone.com]

Many of these items are available atlarger discount or department stores,while others are only sold at specialtystores like Zany Brainy, ImaginationStation, Imaginarium, Alex Toys, andthrough Internet sites. Remember, it’salways possible to modify what youalready have to fit your needs. Withpaintbrushes, for instance, thicken thegrip with foam.

DDooiinngg wwhhaatt yyoouu lloovvee“I do a little handquilting as a smallbusiness,” says Mary, who suffersfrom DM. “It usually takes me aboutfour months to do a bed-size quilt.The physical therapist said not to dorepetitive motion tasks for more than

20 minutes. I am having ahard time acceptingthat my quiltingdays may be over.”

From thisBulletin Board postcame a host ofresponses, encour-aging Mary to findnew outlets or tokeep experimentingwith her quilting.For many of you,your bodies will letyou know when

you’ve done enough. So howcan you continue doing what you loveto do? If you crochet, for instance,Access to Recreation offers a CrochetAid. Through a series of Velcrobands and rings, this gadget helps

Though most people don’t spend thetime they’d like on arts, crafts andother hobbies, these activities providean invaluable outlet to relieve stress,frustration and other negative feel-ings. If myositis has reduced yourability to continue working on thehobbies you’ve enjoyed in the past,you can discover new interests or findways to adapt your current hobbies toaccount for any loss of weakness ormobility.

AArrttss aanndd ccrraaffttss ffoorr kkiiddssChildren have a strong need for artsand crafts in their lives as a way ofexpressing themselves, especially foryounger children who can’t yet puttheir feelings into words. Some ofthe smaller supplies used in certaincrafts, though, are tough to hold or toput in place. Even holding crayons,markers and paintbrushes is an exas-perating task for some.

What you choose is an importantpart of your child’s therapy as well.“Be creative in your activities toinclude stretching and range-of-motion,” says Dr. Lisa Rider (NIEHS,NIH), answering a ques-tion on exercise. “Dosomething fun, likepainting, as a methodof stretching.” Oneyoung JM boy partici-pates in art therapy asa means of getting intouch with his deeperfeelings.

Art supplies areoften adapted for littlehands; these items arealso helpful for thosewith limited grip andmobility. Some to con-sider:

Paintbrushes [i.e. Crayola So BigBrush, www.crayola.com, orBeginner Paintbrush Set, www.alex-toys.com orwww.specialkidszone.com]

Discover your creative side

See Creative side, page 21

14

By Harris Teller

Editor’s note: Harris Teller was plan-ning the home of his dreams when hehit a snag. With some positive think-ing and good help, Harris now livesin this dream home. Here’s his storyin his own words:

This saga starts with disappointment,frustration and anger. Briefly, I wasexpecting my new manufacturedhome in 30 days. The design wasperfect for my needs, the price was inthe “ballpark” and I had found anadult community I liked. A phonecall brought months of planning andanticipation to a halt…the manufac-turer cancelled the order. As I was inthe mobile home park at the time, Iasked if there was possibly somethingfor sale that might meet my needs.Enter the sow’s ear.

Initially, the only good thing thatcould be said about the manufacturedhome in Space #8 was that it had avery long ramp that made for easyaccess. It had been vacant for over ayear. Further, it was old and tiredlooking. Small and narrow were thekey words – small kitchen, smallbathroom, small bedrooms, a narrowhall, narrow doors throughout, and,oddly enough, large closets. Againstthe advice of family and friends Ibegan to investigate the feasibility oftransforming this neglected place intothe serviceable “home of my dreams.”I had spent considerable time plan-ning a safe and efficient living spacefor someone in a wheelchair livingalone. All I needed to do was applythat concept to #8.

FFiinnddiinngg tthhee rriigghhtt hheellppFirst, I had to locate a contractor whospecialized in manufactured homes.Second, he had to be a contractor whocould be sensitive to the special needsof the disabled and very conversantwith ADA regulations. This was notas easy as it sounds. Finally, I found

a contractor who fit my requirements– except they had never ADAretrofitted a manufactured home com-pletely. We agreed on a feasibilitystudy by their staff. The designer andI felt that the key was a space largeenough for a complete ADA bath-room.

By incorporating the laundryspace from the kitchen area, takingspace from what would be the sparebedroom and removing the waterheater, more than enough room wasfound. The retrofit was indeed possible.

TTrraaddiinngg ssppaacceessThe final design of the bathroomincluded a large roll-in shower, araised toilet, anover/under laun-dry unit, anelfa® basketunit in lieu of acabinet, a wall-mountedmedicine cabi-net, variousaccessibleshelves andstorage space.(Note: Theelfa® systemallows you to designyour own drawer styles, includingsizes, using ventilated covered steelbaskets that can be mounted in closetsor free-standing systems.) In the cen-ter was more than the five-foot diam-eter required by ADA. One importantfeature of the bathroom is that inaddition the usual grab bars, both thelarge towel rack and the shower cur-tain rod are secure grab bars as well.

Next the kitchen was designed. Inorder to make room in what had beena very narrow kitchen, the inside wallwas moved several feet into the grandroom. The counters, including thestovetop, are all at the height neces-sary for easy use by a person in awheelchair. Again elfa® basket units

were used in lieu of cabinets anddrawers. The basket units can bepulled out with just one finger or witha hook attached to a dole. The ovenis a combination microwave/convec-tion. The design also incorporates amovable island for additional storageand workspace.

The dining area is at the end of thekitchen; it will seat three othersbesides myself comfortably. I wasable to use the china cabinet and din-ing table from my old house by care-ful space planning. A large windowwas installed at the end of the area tocreate a link with the outside. On thewall between the kitchen and the din-ing area, we attached a small drop-

leaf table that I usewhen I eat alone. It

also acts as a desk.The grand room

serves two majorpurposes. One endis my office and theother end, my fami-ly room. The roomwas made to appearlarger by removingthe glass doors tothe closed-in porch.

This porch hasbecome the main entry and thelibrary/museum. With the main entrydoor open, one can sit and read andfeel as if they are in a tropical garden.Plants line the ramp on both sidesright up to the door.

The windows of the master bed-room also open on to the ramp area.This and the solar tube give the rooma feeling of being outdoors. Thedresser uses the elfa® basket unitsand the closet area has pull-downclothes poles that pull done easily forremoving garments and retract almostby themselves.

The hallway between the bath-room and the bedrooms is extra wide

More than making do: building a house that works

See Building a house, page 19

15

As baby boomers plan ahead for thefuture, many are looking at the con-cepts of universal design, and thatinterest applies to kitchen design aswell. That's not only because every-one foresees a time when it willbecome harder to cook, but becausemany have become comfortableentertaining in the kitchen, withguests and family helping, and wouldlike to include guests who are dis-abled or frail or parents who mayvisit for extended periods of time.

TThhiinnkkiinngg aahheeaadd:: aa kkiittcchheenn wwiitthhyyoouurr nneeeeddss iinn mmiinnddThe kitchen that seems so efficient toyou may look like an obstacle courseto even an experienced cook in awheelchair. Making meals andcleaning up is really a series of tasksrequiring many stages that flowalmost instinctively and involveappliances, plumbing, fixtures, stor-age, ingredients and tools.

If you or a relative spend part ofyour time in a wheelchair - or antici-pate that you will - it's wise to thinkcarefully about your kitchen needs.If you're looking at homes that claimuniversal design, you may be sur-prised at the wide variations in thekitchens you see: some are suitable;some are not.

If you're building your own home,experts advise that you go carefullythrough the steps it will take you tostore, find, prepare and cook food.By analyzing the steps carefully,you'll end up with a kitchen that istruly workable for you.

If you live alone, the kitchen lay-out should respond toyour capabili-ties. If you livewith a partnerwho is not in awheelchair,the designshould fill theneeds of both

people. Thisrequires aslightly dif-ferentapproach tothe design.If you neverdo anycooking,you may notwant to alter the kitchen at all. But ifyou do, some crucial planning willhelp you continue with this most nur-turing and creative of householdchores.

PPllaannnniinngg yyoouurr eeffffiicciieenntt wwoorrkkssppaacceeEveryone is familiar with the"kitchen triangle," the three workcenters that define the work of anykitchen. They are the stove andoven; the refrigerator and freezer;and the sink, disposal, and dishwash-er. These centers should be set up tofollow the natural sequence of workfor food preparation and cleanup.

For example, food is usuallyremoved from the refrigerator or cup-board, washed at the sink, and thenprepared at a work counter. Then it'splaced in a pan or pot and put on thestove or in the oven. When the mealhas been served, the cleanup has itsown pattern: dishes are scraped andrinsed at the sink, then put in thedishwasher. When it's time to unloadthe dishwasher, the dishes and uten-sils are put in the cupboards anddrawers. It really doesn't matterwhether these chores are done in aright-hand or left-hand flow, but youmay feel more comfortable with oneor another.

A number of different arrange-ments are workable, including U-shaped, L-shaped, and galleykitchens. The U-shaped kitchenoften provides the best efficien-cy for a wheelchair user becausethe countertop is more continu-ous. For these cooks, the galley-

The tailored kitchenstyle kitchen is the most difficultto use. Work spaces on the coun-ters near each of the work centersis particularly important for peo-ple in wheelchairs, since thosewith impaired mobility often settheir tools or ingredients down asthey reposition themselves at thenext work center.

As a general guide, the refrigera-tor and freezer should have at least aone and one-half foot wide counter-top next to the opening side of theunit; the sink and dishwasher shouldhave at least three feet of counter tothe right and two feet to the left(assuming a right-handed user); thestove and oven should have two feetof countertop on each side.

As a rule, you should work for aminimum of ten feet of countertop inany kitchen. In some kitchenarrangements, part of the workspacecan be supplied by a table. Properkitchen design puts few obstacles inthe flow of work. For cooks withimpaired mobility, the countertopshould be as continuous as possibleto link the workstations with levelsurfaces. If the kitchen is to servethe needs of several users (for exam-ple, a spouse or other family mem-ber), the proper height for the coun-tertop should be carefully considered.A standard counter height is 36". (InEurope, most counters are slightlyhigher, at 37".)

As a general rule, work surfacesshould be higher when users are per-forming close work that requires pre-cise actions. On the other hand, tasksrequiring more physical strength, likerolling dough or mixing ingredientsare easier to do on a lower counter-top. For most people in a standingposition, the standard kitchen-counterheight is a reasonable compromisebetween these levels. Many peoplewho use wheelchairs or walkers else-where are comfortable without them

See Tailored kitchen, page 21

16

could have a positive role here andentered.” Pam won the title and isnow in the running for Ms.Wheelchair America.

LLooookkiinngg ggoooodd,, ffeeeelliinngg ggooooddThere’s no question that looking theirbest gives everyone – wheelchairusers and walking people; men andwomen – a real boost and promotespositive interactions with other peo-ple. Pam found it very importantbefore her accident, and this didn’tchange afterwards.“I was barely con-scious, in pain andstill hospitalizedwhen the peoplefrom my spashowed,” she said.They washed herhair, polished hernails and toenails,and rubbed her skinwith lotion. “Thatwas the most loving,helpful thing anyone could havedone,” she said. “It did wonders formy morale.” Pam has a dream ofsomeday opening her own spa, onethat would cater to people with dis-abilities, with comfortable shampoostations, various lifts, massage tables,and manicuring areas set up so thatanyone with a disability could becomfortable.

Pam had a full, energetic lifebefore her accident. She bred androde horses, taught school, modeledand rode motorcycles. She had beenan accomplished gymnast and lovedathletics of all kinds. She learned alot of what there is to know about dis-appointment and courage after thecatastrophic wreck. “I never ques-tioned why,” she said. “I’ve alwaysknown that things just happen, andthey happen to everyone.” Shelearned even more after she becameMs. Wheelchair Virginia. “I’d stayed

Pam Coble Clark’s accomplishmentsspeak for themselves and have noth-ing to do with the fact that she’s in awheelchair. Pam – Ms. WheelchairVirginia – has a doctorate and worksas an administrator at a state commu-nity college. Her determination andoptimistic spirit enabled her to movefrom being a primary grade schoolteacher to a high-level administrator.They’ve also influenced and inspiredher long struggle to find meaning andvision in her life after a motorcycleaccident left her in a ditch by the sideof a road with her spine broken inseveral places, bones shattered, ribscracked and her whole body torn andbruised.

As a professional person and awoman of pride and strength, Pam’sgoal was not only to succeed academ-ically and professionally but to pre-sent herself as positively as possible.“I’ve always taken a great deal ofpride in my appearance,” Pam said.“I think now it’s even more impor-tant.” She’s well aware that when shemeets people now, they may havepreconceptions about people inwheelchairs – stereotypes she canperhaps change with her own brandof style, personality, and grooming.

With a serious physical therapyregimen every day, Pam may some-day leave her wheelchair: until then,she’s determined to have a physicalpresence that will reflect the mostpositive things about her. Afterreceiving her doctorate, she wasapproached by Ms. WheelchairVirginia organizers with informationabout this competition. They heardabout her from Miss Virginia, whohad met Pam in a professional educa-tor’s group and believed Pam wouldbe a wonderful advocate forwheelchair users. “I really investigat-ed this,” Pam said. “I called andquestioned them several times.Finally, I became convinced that I

mostly with my old friends, walkingpeople,” she said. “After the pageant,I began to know more people inwheelchairs and my eyes wereopened again. There’s so much pain,worry and fear. I’m convinced I cando something to make a difference forthem.”

PPaamm’’ss ccrreeaattiivvee wwaayyssPam’s regimen is not for everyone.Some of her tips are just “Pamthings,” as she says. She’s willing to

take whatever time it takes totry to look her absolute best –in her case three hours somedays, less on others. Shedelights in nail polish, jewelry,sequins, furs and three-inchheels. She completes herphysical therapy religiously,five days a week, and includestime in a standing box as wellas stretching and strengtheningexercises. She’s able to useher arms, so the makeup and

hair styling are not the problems theymight be for some people with myosi-tis. She has many good ideas, wonfrom personal experience:

Keep it simple. Pam used to washher hair every day and wear it manydifferent ways. Now, she washes itevery three days, pulling it away fromher face on the second and third days.

Find what works and stick with it.Dressing is difficult when you can’tleave your chair. Pam has found yogapants at Victoria’s Secret that slip on.She wears the black pants (size extrasmall, extra long) almost every day.“I found that nothing worked better,”she said, “so now I just provide vari-ety with my tops.” The black is tohide marks that come from dirt get-ting on her wheels, then her hands.Pam finds tops she likes – sweaters,tube tops and tops with spaghettistraps – and buys some in every color.

Dress yourself in style: Ms. Wheelchair Virginia shares her tips for wheelchair users

Pam Coble Clark

17

“This has worked so well that my sis-ter (not in a wheelchair) now does it,too,” she said. “Once you have a cer-tain style that works, why not justmake it your style and vary it withcolor?”

Buy tops that end at the waist. Forobvious reasons, wheelchair usersdon’t want things hanging out andbunching up. Pam wears leather jack-ets that fit snugly at the waist. Whenshe’s out in bitterly cold weather, shebrings blankets to cover her legs.

Keep changing temperatures inmind. Pam knows she can’t alwaysmove out of a draft or away from asunny window, so she tries to buytops that have matching cover-ups.

Pay attention to your teeth. A nicesmile goes a long way towards thefirst impression you make. Pamfound out from her dentist that store-bought whitening strips are just aseffective as expensive treatmentsfrom a dentist.

Buy pants a little longer than youused to. Pam needs extra long pantsbecause of her three-inch heels, butshe also has found that pants that willalways be seen from a sitting positionshould be longer. “Maybe this is justa ‘Pam thing’,” she said, “but I likefor my pants to meet my shoes withno gap in between.”

Take the time. “If it’s importantfor you to look presentable andtogether, you can find the time,” shesaid.

WWee wwaanntt ttoo hheeaarr ffrroomm yyoouu!!

Have you found some items you justcan't live without? Share them withus to include in the 2005 ProductsIssue of OutLook Extra. We certainlycan't put this resource together with-out your tips, so help us help otherswith myositis! Write, email or callwith your ideas.

Editor's note: We wrote at lengthabout choosing a wheelchair in thefirst Products issue of the OutLookExtra. Request a copy for more infor-mation on which type of chair may beright for you. Meanwhile, a fewpointers for shopping online:

Why should I start with an onlinesearch? Finding a wheelchair bysearching the Internet is a good wayto research and compare what typesof wheelchairs are available. Onlineshopping is easier for most peoplewith a disability than in-store compar-ison shopping in the event that thereis no wheelchair convenient to you.

What should I look for? Don'tpick something immediately from thefirst site you visit. You may be sur-prised at how many choices you actu-ally have. The best web sites giveyou advice on how to have someoneproperly measure you for comfort andsafety. Be aware that accessories areimportant: wheelchairs can be orderedwith specific upholstery; features likedifferent types of armrests and seat-backs; and helpful additions like bat-teries, baskets, weather canopies anda host of others. Some online mer-

chants sell used wheelchairs, consid-erably cheaper than new ones.

What other factors should I con-sider besides price? Price shouldnever be your only consideration.Find out if the wheelchair will befinanced or if the site has a low priceguarantee. Ask how long it will taketo ship the wheelchair and if it is pos-sible to have shipping expedited. Askabout warranties, return policies, andservice contracts. Find out youroptions for checking the status of anorder, tracking delivery, toll-freenumbers, email help, and other onlinetools.

How else can I gather informa-tion? It always pays to ask yourfriends, family and disabled associ-ates for their experiences with specif-ic wheelchair models. The MyositisAssociation's bulletin board, forexample, will lead you to personalreferrals. Also check to see if any ofthe wheelchair manufacturers or mod-els has earned the endorsement of anylegitimate, third party rating entity.

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that no one device works for all.”Richard/IBM

“I have ankle braces on both legs andthey keep my foot from dropping sothat I don’t catch my toe and fall.The only trouble I find is going downa ramp they have a tendency to pushyou forward as your ankle can’t bendand therefore I back down any sur-face that has an incline. They are abit heavy but I can not get aroundwell without them. A bit warm in thesummer but they help me. I haveused them for about 7 years. I alsohave full braces but choose not to usethem.” Bob/IBM

“I have been using Otto Bock walk-on AFOs (www.ottobockus.com/prod-ucts/op_walkon.asp) for my footdrop, and they are great. They arecarbon fiber and consist of nothingbut a sole piece and a side-attachedpost that runs around your ankle andup behind your calf to just below theknee, where it is stabilized with aVelcro strap. There is no joint, butthe fiber has enough flexibility toadjust to inclines. They only weigh afew ounces, and except under theVelcro strap, they don’t enclose any-thing, so no sweating discomfort.They are so slim that you can stuffthem into any shoe. Before I devel-oped serious upper-leg weakness afew months ago, I’d do 6 to 8 milehikes on uneven terrain with no prob-lems.” Burkhard

EEvveerrddaayy ttiippss,, continued from page 6

movies to you postage-free (withinthe U.S.) as they’re available. Onceyou finish, return the movies to them,again postage-free.

AA ggoooodd nniigghhtt’’ss rreesstt“The problem is not being strongenough to turn over in bed nor beingable to slide over the bottom sheet tohelp those efforts. Many people havesolved it with silk or satin sheets.That would not work for me. Whensitting down on or getting up from theside of the bed my condition is suchthat I would be in great peril of slid-ing off onto the floor. My question isdoes anybody have any experiencewith some kind of cotton sheet tightlywoven and hard finished?” Jack/IBM

“What has helped me the most arepolished cotton sheets with a threadcount exceeding 300 tpi [threads perinch]. I love the 800 thread countsheets the best, but paying over $100per sheet is too much for me.”Jim/IBM

“Would this work? Sew a panel of apiece of satin (go to a fabric store)down the middle of your sheet. Thismight help you to turn over in bed butnot slide out of bed since the satin isnot on the side.” Julia

“Sheets made from pima cotton aresmoother. KMart (in my area) is theonly place I know of that has them.”Dorris/IBM

TThhee ddeebbaattee oonn bbrraacceess“I have discussed the use of braceswith both my physiatrist (an MD) andmy PT. Both have advised againstbraces, at least for now. I have suc-cessfully used a walker and have onlyfallen once in 1 1/2 years – that waswhen I bent over and leaned on some-thing which moved. I now use agrabber to minimize the need to bend.I know that we are individuals and

and has carpeting attached three feetup the wall. All of the interior doorsare “pocket” doors.

SSaaffeettyy ffiirrssttAdditional safety features include:

All exterior doors are equippedwith “Quik Release” deadbolts.

BBuuiillddiinngg aa hhoouussee,,continued from page 14

The home is fully alarmed – bur-glar, smoke and medical emergency.

There is a Knox box, which con-tains a house key outside the frontdoor for the paramedics.

There are speakerphones in everyroom of the house, including the bath-room.

TThhee ffiinnaall ttoouucchheessThe outside has been made an exten-sion of the living space. I can break-fast outside on nice days or curl up inmy chair on rainy days surrounded byrelaxing foliage. No matter where Iam on my property, I am never morethan a few seconds away from any-where else. My extra widewheelchair is easily accommodated inall the rooms and spaces.

I am pleased that I have been ableto create a safe, attractive, and effi-cient environment out of approxi-mately 800 square feet while recreat-ing much of the feeling of my previ-ous 3000-square-foot home.

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21

adjustable-height countertop thatsraised or lowered to accommodateeach user.

TTwweeaakkiinngg tthhee ssmmaallll ssttuuffffWhen the cook's in a wheelchair,many small adjustments can make abig difference. For instance, onehandicapped cook I know has all thecontrols at the front of the stove, soshe doesn't have to reach across a hotburner to turn the stove down or up,or to turn the oven on. She's alsoused only under-counter storage, withpots, measuring cups and ingredientson shelves with lazy susans, and she'sgot a number of stations around thekitchen where she can set a heavy orhot pan or pot down without reachingup. Get to know not only the designbut the kitchen gadgets that are help-ful, and you and your family willbenefit from the independence andsatisfaction that comes from a cre-ative kitchen.

in a kitchen, where there is alwayssomething to lean on. For a personwho must be seated in a wheelchair,however, the standard height may notbe workable at all. To solve thisproblem, the entire kitchen countercan be lowered to 34" except at thedishwasher. This is a little difficultfor ambulatory cooks, so anotherapproach is to lower specific sectionsof countertop, like a countertopworkspace, the sink or a cook top.While this solves some problems, itmakes the intersections of the differ-ent countertops awkward to use, sothese changes should be well thoughtout. A more sophisticated and costlyalternative is an electrically operated,

TTaaiilloorreedd kkiittcchheenn,,continued from page 14

those with limited dexterity. With alittle creativity, you may be able tocraft your own tool to help withsewing, crocheting, needlework, knit-ting, and other activities.

Painting was a natural choice forMike Shirk, whose wife is a watercol-orist (see Staying in the game fromthe June 2003 OutLook). “I’ve takenclasses and workshops, joined artorganizations, entered local competi-tions and am having more fun than Idid before I was diagnosed!” Mikesays. Dagmar Slaven chose to createorigami “Wings of Hope” whenprompted by her TMA Keep In Touchsupport group leader to come up witha fundraising idea. “I look at theaction of paper folding as some sortof therapy, mental as well as physi-cal,” she says, “but I am very muchaware that it cannot reverse the dam-age that is already there. I look at itmore as some sort of ‘carpe diem’approach, make the most of thingswhile I am still able to do them.”(Dagmar would love to share the plansfor her “Wings of Hope” with others.Contact TMA if you’re interested.)

You’ll find classes at your localcommunity college or centers teach-ing a variety of things – painting,photography, scrapbooking, and more.Find something you think you’denjoy, then go for it!

RREESSOOUURRCCEESS::Access to Recreation:www.accesstr.com; 8 Sandra Court,Newbury Park CA 91320-4302; 800-634-4351 [Click on “Aids for DailyLiving” to view the Crochet Aid]

Achievement Products, Inc.:www.specialkidszone.com; P.O. Box9033, Canton OH 44711; 800-373-4699

Assistive Tech: www.assistivetech.net

Alex Toys: www.alextoys.comCrayola: www.crayola.com

Kaplan: www.kaplanco.com; P.O.Box 609, Lewisville NC 27023-0609;800-334-2014

CCrreeaattiivvee ssiiddee,,continued from page 13

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RESOURCES

JJMM-ssppeecciiffiicc pprroodduuccttss aanndd ssttrraatteeggiieess::

Adaptive Mall: 1-800-371-2778www.Adaptivemall.com;info@adaptivemall.com; BergeronHealth Care, 15 Second Street,Dolgeville NY 13329

Baby Jogger Company: 1-800-241-1848; www.babyjogger.com(click on "Special Needs");sales@babyjogger.com or trosen-burg@babyjogger.com(International); 1907 South 14thStreet, Union Gap WA 98903

HealthCheck Systems, Inc.: 1-888-337-4684 or 718-339-6212;www.healthchecksystems.com(click on "Baby Care Products"then "Baby Jogger…");sales@healthchecksystems.com;P.O. Box 230215, Brooklyn NY11223;

Recreational Equipment, Inc.(REI): 1-800-426-4840 (US andCanada) or 253-891-2500(International); www.rei.com; REI,Sumner WA 98352-0001 [ExOfficio Buzz Off® Clothing]

GGeenneerraall::

Access to Recreation: 1-800-634-4351; www.AccessTR.com; 8Sandra Court, Newbury Park CA91320-4302

Achievement Products, Inc.: 1-800-373-4699; www.specialkid-szone.com; P.O. Box 9033, CantonOH 44711

Disability Products: 1-800-688-6794;www.disabilityproducts.com; 5447East Elmwood Street, Mesa AZ85205Dr. Leonard's: 1-800-455-1918;www.drleonards.com; P.O. Box7821, Edison NJ 08818-7821

Dynamic Living: www.dynamic-living.com; 428 Hayden StationRoad, Windsor CT 06095-1302;

Knox-Box Rapid Entry System:1-800-552-5669;www.knoxbox.com; 17672Armstrong Avenue, Irvine CA92614.

Maddak, Inc.: 973-628-7600; 661Route 23 South, Wayne NJ 07470

Maxi-Aids, Inc.: 1-800-522-6294(to order) or 631-752-0521 (forinformation);www.MaxiAids.com; 42 ExecutiveBlvd., Farmingdale NY 11735

Rolli-Moden: 1-800-707-2395;www.rolli-moden.com; 12225World Trade Drive, Suite T, SanDiego CA 92128

Sammons Preston Rolyan:www.sammonspreston.com; 4Sammons Court, Bolingbrook IL60440

The Container Store (elfa shelv-ing system): 1-888-266-8246;www.containerstore.com

Wisdom King: 1-877-931-9693;www.wisdomking.com; 2410Cades Way, Unit B, Vista CA92081

TTMMAA iiss aa rreessoouurrccee,, ttooooOOnnlliinnee ssuuppppoorrttThe Myositis Association's web site isfilled with useful information, linksand stories. Check www.myositis.orgfor:

TMA equipment exchange(Marketplace). Whether you havesomething to sell or need a particulardevice, this exchange allows you tofind a suitable buyer or just the rightitem.

Bulletin boards (CommunityForum). Stay in contact with othersby posting what helps you deal withthe daily challenges of myositis - bothphysically and emotionally - andreading about other people's strate-gies.

Clinical trials (Resources). Learnwhat clinical trials are currentlyrecruiting patients and healthy volun-teers, and find ones for which youmay be eligible to enroll.

Community events (Events).Locate what's happening near you, ordownload TMA's campaign manual tohelp you organize your own event toraise funds and awareness.

Research. Learn about the latestresearch related to myositis. Readabout the research being funded byTMA, and find links to other siteswith valuable research information.

Newsroom. Learn about recentlegislation that may impact those withmyositis and how you can convincefederal and state legislators to act onyour behalf.

PPeerrssoonnaall ttoouucchhIf you don't have Internet access, orjust need a hand, all members ofTMA's staff are available by phone,mail and email. Do you want to par-ticipate in the equipment exchangebut can't get online? Or find out whatclinical trials might affect you? We'rehere to help.

23

22000033 PPrroodduuccttss IIssssuueeOOuuttLLooookk EExxttrraa

TMA's first Products issue ofOutLook Extra brought a host ofresponses from you. And many newmembers and friends contributed tothis issue, making this second edi-tion as full of useful ideas as thefirst.

For those who haven't alreadyflipped through the 2003 Extra,here's what it included:

The search is on: But why startnow? Consider aids to help withdaily living before they become anabsolute necessity.

Need a lift? Decide whether youshould drive or push. The advan-tages of manual versus powerwheelchairs

Wheelchair users have morechoices than ever before. How tofind what you need, from big tosmall options.

Buying and using your scooter orpower chair. Selecting a scooter orpower chair that's right for you.

Staying on the road: Questions andanswers. Getting into and out ofcars with your wheelchair.

What about walkers and canes?Options available for these long- orshort-term aids.

A couple of classic common-sensesolutions: The Moench Buttonhookand Half-Step. Two commonlyrequested do-it-yourself modifica-tions.

Helpful hints: Members sharetheir ideas. Contributions from

TMA members - their own devicesand strategies.

Relief from dry skin.Recommendations for combatingthis pesky component, especially ofdermatomyositis.

Tried and tested ideas for bed andbath. Exploring smaller to largerproducts available for the bedroomand bathroom.

Finding funding for your needs.Programs available to provide fund-ing, or assistance in locating appro-priate programs to help.

Resources. Listing of resources forgeneral information, do-it-yourselfsolutions, dry skin relief, sun-pro-tective products, emergency alertsystems, wheelchairs, and more.

Immune GGlobulin SServices PProvided IIn PPatients' HHomes

IIggGG AAmmeerriiccaa is a national specialty pharmacy organization that provides immune globulinservices in the home setting. IgG America can arrange services during the day, evening,and/or weekend. Not only is it more convenient then having infusions in a physician's officeor outpatient center, it is usually less expensive. Services provided include immune globu-lin, supplies, pump/IV pole, and nursing services required to administer the immune globu-lin. The nurse stays the entire duration of the treatment and follows a comprehensiveadministration protocol. If you would like more information on IgG America's services orwould like to inquire if your health insurance would cover home immune globulin treat-ments, please call (toll free) 11-887777-667744-99770000 or visit our website at wwwwww..iiggggaammeerriiccaa..ccoomm.

1233 20th Street, NW, Suite 402Washington, DC 20036

The Dysphagia CookbookThe Dysphagia Cookbook offers a wide range of recipes forthose with swallowing problems. In his foreword, ToddLevine, MD, Director of the Neurophysiology Department atGood Samaritan Hospital in Arizona, and one of the expertson TMA’s medical panel for the 2004 Annual Conference,breaks down the act of swallowing and some of the condi-tions that may lead to swallowing troubles.

Tips for preparing and serving food, general recommen-dations for swallowing, information on food consistency,handy tools and foods to have on hand, and suggestions fortraveling and eating out supplement the recipes. The authormarks each recipe with S (soft), G (ground/shredded/sliced)or P (pureed) to help you decide which recipes are mostappropriate depending on the severity of your swallowing dif-ficulties.

Recipes include vegetable dishes, fish and meats, break-fast dishes, soups, salads, sauces, desserts and fruits, anddrinks.

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