The Vain Girl’s Guide to ALS So, you’ve been diagnosed with ALS, commonly acknowledged as one of the worst, if not the worst, diseases from which to die. You have a lot to digest and yet you also have the potential for a number of years of happy and satisfying living. I was diagnosed with limb onset ALS in December of 2007 and I have written this guide based on the progression ALS has taken in my life. ALS is different for each person who has it so you may find that only some of these tips are necessary for you. When I received my diagnosis, I believe that more than I feared death, I feared the loss of function that I was going to experience. I also feared being “that person in a wheelchair,” rather than me. I did not want to look like what people think a handicapped person looks like. I wanted to look like me. You see, I am vain. I like to look good. I like to dress fashionably, and I hate to go out into the world not looking my best. You would be amazed at how much it lifts your spirits to get showered, dressed, and made up every day, regardless of how sick you are. You would be surprised at how much it contributes to depression when you stay in, don’t wash, and wheel around in your pajamas all day.
The Beginning At first, you are likely to experience a loss of coordination. Pretty soon, it becomes clear that your high heels need to be retired and replaced with sensible shoes. I recommend several things. First, do not throw away your heels! One day, you will be confined to a wheelchair and you can wear the highest heels you want and never have sore feet. Also, as your legs lose muscle tone, the heel accentuates the shape of your legs and keeps them looking hot for as long as possible. In the meantime, you will need to wear flat shoes and possibly braces on your legs. If you go to a shoe store aimed at selling comfortable shoes, you will find there is a wide array of flat, comfortable and adorable shoes from which to choose. You will want to choose Velcro-fastened shoes because slip-ons are too challenging to slip on when you have ALS, except with a shoehorn. They can also be too loose, which is a trip hazard. Tying or buckling shoes may work one week, but eventually will become impossible. It’s better to begin with a shoe that will accommodate your disease as it progresses. Clarks, Naot, Indigo, and Dansko are just a few shoe brands that will cheer you up about having to go sensible. I know Velcro has a kind of Forrest Gump aesthetic, but you’d be surprised how many stylish Velcro straps you can find if you know where to look. If it’s hard to get to a shoe store, I recommend www.Zappos.com. Their delivery is free and their return policy is excellent. If you need to wear orthotics (toe-offs [http://www.spsco.com/products/new-releases/0509-06b.asp] are a common kind of orthotic brace), you can cover them up either by wearing slacks or buying “big girl boots.” Many styles of boot come in a larger calf size for plus-size women. These larger boots can often accommodate orthotic braces. Wearing flare-legged pants will hide the unsightly lines of the orthotic brace and also hide knee pads should you decide to wear them to protect you from falls. As you lose coordination, you will probably need to use a cane or a walker. This is very distressing for the vain girl in all of us. I found folding canes (http://www. target.com/gp/detail.html/176-8028049-0271864?ASIN=B000N8FHCK&AFID =Froogle&LNM=B000N8FHCK|Mabis_Healthcare_Adjustable_Folding_Cane_ Woodgrain&ci_src=14110944&ci_sku=B000N8FHCK&ref=tgt_adv_XSG10001) that fit neatly in your purse, walking sticks, and several other kinds of canes that had some panache. A friend of mine with ALS sports a walking stick made from
a bull’s penis. You can find out more by visiting www.rosstaylororiginals.com. When it was time to graduate to a walker, a friend painted one with acrylic paint in a leopard skin motif. There are many ways to accessorize your walker, including fringe, beads, glue-on rhinestones; you name it. You can also cover your walker in electrician’s tape of varying colors.
Loss of Fine Motor In Hands As you lose the ability to grasp small things, there are a number of great products available to help you. You can purchase magnetic necklace clasps (http://www. amazon.com/As-Seen-TV-Clever-Clasp/dp/B002HMCINQ/ref=sr_1_2?ie=UTF8& s=hpc&qid=1265410118&sr=8-2) which hook onto your existing necklace clasps. The magnets find one another and make it quite easy to put necklaces on and off. As I lost the ability to button and unbutton shirts and sweaters, a friend of mine sewed magnetic buttons (http://www.umei.com/snap-buttons/magnetic-buttons. htm) underneath the buttons of my shirts and blouses. From the outside, they look the same. But it gives you the power to take your own clothes on and off. Caution: Do not use magnetic buttons with any tops that are tight along the bra line or you’ll give everyone quite a show when your button bursts. Bra hooks are almost impossible to maneuver once your hands get too weak. Jogging bras are not an option unless you really love the uni-boob look. I found a product by Spanx called Brallelujah (http://www.barenecessities.com/SPANXBra-llelujah!-Soft-Cup-Bra_product_Spanx013_,search,.htm). It’s a pull-on bra not unlike a jogging bra. However, it has defined cups and a very wide band around the bottom which works as well as an underwire, only more comfortable. The Brallelujah is actually more flattering to the form than most normal bras. Zipping zippers can be accomplished by attaching fishing wire in a loop to the zipper or by ordering zipper pulls (http://www.solutions.com/jump.jsp?itemID=13111 &itemType=PRODUCT&iProductID=13111) which are cute, decorative ornaments that attach to zippers of sweaters, coats, etc. You can use scissors to slightly widen
buttonholes in pants, especially jeans. There are also buttoning aides that help you pull the button to the hole, but I never found them to be of much help. It’s important to experiment and figure out what works best for you. Note: I recommend trying things out at a medical store or at your ALS clinic before ordering them online. Some catalogs have a more restrictive return policy than others.
Transition to Wheelchair Everything changes when you move to a wheelchair. For example, when you try clothes on in a store, you stand in front of the mirror. Have you ever pulled up a chair and sat in front of a mirror to see if something fit you? A lot of your clothes may not be flattering on someone who sits all day. For example, midriff tops never look good when you’re sitting down. Ever. I mean, EVER. As you transition from a walking person’s wardrobe to a wheelchair wardrobe, there are a lot of things you will want to keep in mind. Dress to emphasize your best sitting down asset(s), even if you can still stand. If you have a fondness for low-cut tops, sit down in a chair and ask a friend just how well he or she can see your “assets” before you buy a top. Wear clothes that drape generously over the belly. Peasant tops are nice as are vests or jackets over something more formfitting. A monochromatic look on top is usually going to draw attention away from the wheelchair. Conventional wisdom says, “Don’t wear short skirts when you are in a wheelchair.” However, if you have great legs, a full cut mini skirt will prevent any embarrassing crotch shots while, at the same time, showing off your gams. Remember you get to wear those high heels now, so if you have great legs, flaunt them. Just not in a tight mini. In addition to looking good, your clothing must be easy to get on and off for bathroom transfers. Skirts just past the knee with stay-up thigh-highs (with or without underwear) make bathroom trips easier. I love thigh-
highs so much that I want to design my own line for people in wheelchairs. I will call them “EZPee.” Note: You can also cut the crotch out of tights and pantyhose and put panties on over the tights, but don’t try this look if you are hoping to get lucky. There is little less sexy than underpants over tights or pantyhose. Going “commando” is also an option but personally I’m not a fan of the “no underwear policy.” It is much easier to transfer to a toilet from a wheelchair but I love wearing pretty, lacy panties. If you don’t have an asset like hot legs or a sexy neckline to show off, you will want to draw attention towards your face. This can be accomplished by wearing bright scarves or cute, colorful necklaces. Some people confined to a wheelchair end up not wearing shoes. For one thing, they don’t need them as their feet don’t touch the ground, and for another their feet get swollen from lack of circulation. I recommend incorporating regularly scheduled stretching and massage sessions. Find out from your physical therapist what is causing your feet to swell and spend time each day elevating your feet above your heart. I do one hour of assisted yoga five times a week and have my hands, shoulders and feet massaged twice a day by my caregivers. I also have a massage once a week. I use “massage boots” that feel similar to a blood-pressure cuff to encourage my circulation (http://www. amazon.com/Massage-Boots-lower-leg-below/dp/B0020JK9FU). My feet, although cold, are otherwise fine because of the care that I take and I can fit them into any shoe. Psychologically there is something about going out in socks or slippers that makes me feel more handicapped. As my son likes to say, “Lack of fashion sense is a disability too, you know.” When you are first using a wheelchair, you may be able to reach your own wallet and cell phone. During this time, it is tempting to place your purse on your lap. Don’t do it. You will look like a cross between a bag lady and a highly awkward teenage girl. You can find small purses which will hang from the arm of your
chair. Purse handles can be reversed by 90 degrees for wheelchair use and easy access. Once you are no longer able to use your wallet or cell phone, you can hang your bag from the back of your chair and keep your belongings there. It is highly unlikely that any pickpockets will be dastardly enough to try to take your wallet from behind you, but just in case, the bag on the back of my chair is very deep so at least they have to work for it.
If you are depressed about living in a chair, try to make it your own personal space. Bucket seat covers from auto supply stores fit over wheelchair seats perfectly. Mine is leopard skin. If you have a large enough budget, a custom rim store will create spinning rims to fit your chair wheels. If not, you can always accent the wheels with rhinestones or other decorative objects. A friend of mine created a changeable “bumper sticker” for the back of my chair by using a plastic transparency sleeve attached with a ribbon. I changed the message on the back of my chair to fit my mood. My favorite is “If you patronize me, I will haunt you”.
Transition to Not Using Hands Eventually, you cannot bring your hands to your face or hair and for the first time since you were a kid, can no longer groom yourself. It’s hard to explain to someone how you like things done, so it’s a good idea to save pictures of yourself with your makeup and hair exactly the way you like it. Draw a map of your face (these are available at makeup stores such as Max or Benefit) and use colored pencils to shade areas of the face the way you like your makeup to be done. Be very specific about how thick and blended you like eyeliner,
etc. Write notes on the side of the map. If necessary, make a copy of the notes translated into your caregiver’s language. Have your eyebrows professionally dyed and waxed and dye your eyelashes. Consider permanent eyeliner as well. This minimizes the time you have to take to explain how you want your makeup done, since you’re halfway there already. It is exhausting to explain how you like things. You may be tempted to give up on good grooming because it’s so frustrating and tiring. The reason it’s not a good idea to give up on these things is that it affects how you feel about yourself and it definitely affects how people treat you. I don’t leave the house unless I look the best I possibly can on that day, and I try to keep a smile on my face at all times when in public. I find this minimizes the pitying looks from strangers and the sad looks from loved ones.
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When you have people taking care of your every need, you may feel guilty especially if you spent your life being very independent. It’s easy to forget to ask for the little things, which may not seem important, but will help not only your appearance, but your circulation as well. Make a list of things you like to do and when you like to do them and make them part of your daily routine. For example, include manicuring nails, exfoliating, and hand and foot massages as part of your caregiver’s daily duties. Before you lose the ability to do your own hair, talk to your hairstylist about a wash and wear idiot-proof haircut. Explain that you want something stylish, flattering, and while you’re at it, why not sexy too? If you have a cut that does not require blowdrying, curling, or straightening, then no matter who is caring for you, your hair will look its best. If you like to straighten your hair, there are great chemical straighteners nowadays. I have seen people look like they spent hours blowdrying their hair when, in fact, they just used a straightening perm. I have wavy hair so my hairdresser created a wash and wear style with lots of layers that accentuated the curl of my hair. Once I started hospice, I figured I wouldn’t need my hair for
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much longer, so I donated it to Locks of Love (www.locksoflove.org). My new haircut is short, but it’s still wash-and-wear, fashionable, and of course, sexy. Note: Since you have people brushing and combing your hair for you anyway, if you have long hair, why not add a luxurious brushing into your nighttime routine? Most women love the feeling of having another person brush and even braid their hair before bed. Find ways to make needing a caregiver work for you. Now, whether you are a vain girl or not, if you are a girl who has yet to complete menopause, you will have a period. Once you lose the use of your hands, this presents a bit of a problem. There may not seem to be that much of a difference between someone wiping your butt and inserting a tampon, but there is. Even ablebodied women can find themselves in awkward situations on a heavy flow day so I recommend taking birth control without the seven-day placebo pill. If you take the pill every single day, after a month or so you will cease to have a period. This may seem odd or against nature, but believe me there are worse things in life than giving up cramps, bloating, headaches and once a month crankiness. Isn’t ALS enough to contend with?
Transition to Not Using your Voice and/or Not Being Understood t a certain point, you will become difficult, if not A impossible, to understand. It will be very hard to point to the shirt or accessory you want to wear. It is frustrating to be at the mercy of someone else’s fashion choices. You can minimize this discomfort by taking photographs of every outfit you like to wear, including accessories and shoes. Create a system to organize all these outfit options in separate categories, like “over 70 degrees,” or “party clothes”, etc. (I believe there is a lot of money to be made in a line of clothing which
has labels on tops and bottoms that can be worn together, like the children’s fashion line “Garanimals”. Instead of animal labels, you can have a numbering system or, perhaps, names of different diseases and disabilities. It can be called, “Garandicapped” or something like that.) For displaying necklaces, I use a numbered dowel and I hang one necklace on each number. I just need to say one word and my caregiver knows exactly which necklace I want. Think about all the times throughout the day that you might adjust a waistband, bra strap, or sleeve. Then, make a numbered list of common fashion emergencies, so you can either point to or say the number of your complaint. For example, “Number 1” might mean “I have a wedgie”. If you have caregivers from other countries, you need to find pictures or other ways to explain your fashion predicament. Little did I know that “calzon chino” is Mexican slang for the American slang term, “wedgie.” I later found out that this is not El Salvadorian or Honduran slang. A lot of nicknames, shortcuts, and slang terms we use (camel toe, hat head, flood pants) do not have a direct translation into other languages. Buy Glamour magazine and look for the Do and Don’t page, search Google Image for pictures of “muffin top” and label illustrations of things like nail clippers, tweezers, and razors.
Pictures like these can save you the exhaustion of using your voice and also be a fun ice-breaker for you and your new caregiver… unless she has a pronounced muffin top or camel toe. It can be difficult to maintain skin integrity when you have ALS. Between lack of oxygen, poor circulation, and drug reactions, you may find yourself breaking out into dry, red patches. It’s good to put lotion all over your body after a shower and make sure you exfoliate thoroughly as well. This not only helps your skin’s appearance, it prevents itching, which is a huge problem when you can no longer scratch an itch. I use a gentle cleanser on my face and exfoliate regularly. I also use very affordable moisturizers such as Eucerin or Amlactin which are used in hospitals and cost a fraction of the more expensive brands. ALS can create a great deal of excess saliva. There are drugs that help tremendously. Unfortunately, those same drugs dry you out and you may find your lips not only chapped, but cracked as well. Clinique makes a lip conditioner called “All About Lips” which blends into your lips, so you can still wear lipstick on top of it. At night, I use a stronger lip balm, like Carmex and cake it on generously. In the morning, you may find a gluey substance cemented to your teeth, which not even an electric toothbrush can get off. A little hydrogen peroxide on a Q-tip will take it right off. As your mouth gets harder to control, you will find bits of food stuck in your teeth, the corners of your lip, or in the pockets between your gums. Increase the number of times you brush your teeth because a) you don’t want to aspirate plaque and give yourself pneumonia and b) if your mouth feels clean and fresh, you will be more inclined to smile at people and they will be more inclined to smile back. Before you know it, everyone is in a good mood. ALS eventually alters your appearance. In addition to skin problems, the absence of strong abdominal muscles gives you a pronounced belly (hence the draping peasant blouses). Deteriorating muscles also causes slouching shoulders and atrophied hands. Your fingers often curl into claws. You can add padding to your wheelchair to make your spine curve the way it would if you had musculature to
sit up straight. To avoid finger curling I use the device below once or twice a day to straighten out my fingers. All you need is something hard like a piece of plywood or a plastic clipboard, a drill to make holes and extra long shoelaces. This will prolong the length of time your hands will stay flexible. I distract people from the strange indentations in my hands caused by atrophy by wearing a combination of the following: t-shirts and sweaters with extra long sleeves that conceal half my hand, fingerless gloves, lots of rings and/or bracelets and bright colored nail polish to lead the eye away from my misshapen hands. My only caution is that if you wear a medical alert bracelet you don’t pair it with any other bracelets on that arm as you will want emergency teams to recognize it immediately. Note: You can order the medical alert medallion and attach it to a more attractive bracelet of your choosing or simply google “fashionable DNR bracelets” to find a wide array of stylish medical jewelry. When the muscles in your neck begin to weaken you may be given a cervical collar. This will ease the pain in your neck and stabilize you but lets be real: not even Angelina Jolie could pull off the cervical collar and still look hot. My PT recommended kinesio tape. You can buy it in beige or in bright festive colors and it works remarkably well at stabilizing your neck. http://www.goldplustech.com/img/fitness/ tex_neck.jpg Even if you’re feeling good about what you’re wearing and how you decked out your wheelchair, you may feel self-conscious about all the medical equipment hanging around your house. After all, this stuff can be kinky, but never actually sexy. I recommend finding discreet corners for medical equipment. If you have
to resort to a hospital bed, I recommend doing something creative to transform it. I wrapped ribbons around the ugly metal sidebars, put a beautiful quilt over the hideous beige footboard, and draped threedollar Ikea sheers at the head of the bed so I could feel glamorous. To the left of the bed, I have a cowboy hat hanging on a hook. It’s always good to keep people wondering about you and your most recent visitors. There’s a candle on my nightstand and sconces on the wall, as well as a stereo system with speakers on either side of the bed. Once I entered hospice, I threw out all my unmatched sweatpants and tees that passed for pajamas and replaced them with nightgowns that are worthy of Camille, Violetta from “La Traviata”, or Mimi from “La Boheme”. I figure if I’m going to spend more time in bed, I’m going to do it in a fetching nightgown with a built in bra. Many of my suggestions are costly. ALS is one of the most expensive diseases because as it progresses, there is always new equipment required, much of which is not covered by health insurance. I have been lucky enough to get a lot of my services pro bono. It doesn’t hurt to put out the word that you’re looking for someone who needs practice hours before being certified in massage or yoga. You may also find, as I have, that people really like to help. Why not give them the opportunity to help you? I also suggest that you look for used version of the suggested products. Failing that, be creative.
You might be thinking, “Well it’s easy for her to say all this I saw her legs on the cover of this manual and she is the most gorgeous crippled woman I have ever laid eyes on.” And maybe you would be right. But what if I showed you before and after? It takes a lot of work to be me. See? Exhibit A (before):
Exhibit B (after):
Carla clearly not living up to her T-shirt.
Carla almost putting the dead in ‘dead sexy’
A lot of these ideas may seem ridiculous to you. You thought you were reading a useful manual and it turns out you read something that sounds like it could have been written by a character played by Reese Witherspoon. Maybe so. All I can tell you is that it’s key for me to look my best. When you have ALS, loss, despair, and death are nipping at your heels. You need to use every tool in your arsenal to stay happy, and to remember to enjoy what you have. Thich Nat Han said that if you smile long enough, you will be happy. I like to think I look my best as a way of making my whole body smile. I would like to thank the following people for helping me discover many of the ideas above: Jodi Bales, Occupational Therapist, Michelle Mendoza, Physical Therapist, Robert Osborne, RN, Dallas Forshew, RN, Wendy Snyder, Kathy Sprague, Kris Cardall, Edith Morrow, Mayra Enriquez and many others. Assembled by Carla Zilbersmith, photo by Bryan Hendon, layout by Jennifer Brecheisen