Flying Solo the Safe Way:
Safety tips for living alone with a disability
by Kathy Wechsler
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| Therese Nadeau and her black Lab service dog, Sassy. |
Reason number three: You can decorate your place with an array of wheelchairs, walkers and standing frames.
Reason number two: Your roommate doesn’t leave her dishes for your caregiver to wash.
And, the number one reason people with disabilities want to live alone: You can roll around the house naked and nobody says a word.
Living alone can be the ultimate freedom — but it also can be a dangerous game of Russian Roulette. That’s why it’s a good idea to discuss living alone with your MDA clinic team. They can help you decide if it’s a safe option for you.
It’s important to plan ahead for a fall, medical emergency, fire or other disaster. Prepare for the worst with these safety tips from Therese A. Nadeau of Glastonbury, Conn.
Nadeau, who has spinal muscular atrophy (SMA), is a disability and emergency preparedness consultant who trains first responders and people with disabilities to prepare for emergencies.
’I’ve fallen, and I can’t get up’
- Always keep at least one telephone nearby, especially at bedtime. Some emergencies don’t require a 911 call, so keep a list of friends’ and neighbors’ phone numbers, or program them into your phone.
- Program the numbers for the local police station and fire department into the phone. In addition to handling other emergencies, they can help you get up after a fall. If you have a service dog, consider getting a special K-9 rescue phone that allows the dog to call 911 in an emergency by pushing a button with its paw ($249).
- Have trouble using a regular phone? It’s easy to find phones with large numbers, voice amplification or emergency response buttons ($30-$579).
- A medical alert system is a pendant worn around the neck or wrist or clipped to a belt. When the pendant button is pressed, a monitoring center is contacted. Through a console in your home, a dispatcher asks if it’s an actual emergency and if a friend or family member should be contacted ($30/month).
- If your speech is difficult to understand, have a friend record a message for 911, and keep the recorder near the phone or medic alert system. The message should include your name, address, type of disability and any other relevant information.
Making their jobs easier
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| An ICE sticker on your phone announces you have contacts designated in case of emergency. |
“ICE” your emergency contacts in your address book and program important phone numbers into the cell phone by putting ICE (In Case of Emergency) beside the names of people to contact in an emergency, so if first responders find you unconscious, they know who to call. If you have a service dog, include the veterinarian’s phone number as an ICE number.
- Put an ICE sticker on the phone to notify first responders that you use the feature. They’re trained to look for this sticker. To purchase the ICE sticker, visit www.icesticker.com or call (888) ICE-0911.
- Keep important info in or on the fridge. First responders are trained to look in or on the refrigerator for a Vial of Life, sometimes called a File of Life. Simply a labeled see-through container or plastic bag, a Vial of Life includes medical history, current medical information, emergency contact information, Do Not Resuscitate (DNR) documentation and a living will. For more information, call (888) 473-2800. To download free forms and decals, visit www.vialoflife.com.
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| Residential Access Junior keypad by Open Sesame allows for keyless entry. |
Include a completed Disability Specific Disaster Preparedness Inventory form in the Vial of Life. With more disability-related kinds of information than the Vial of Life, this form gives first responders information on your neuromuscular disease, service dog, medication, assistive technology and anything else of importance. Go to the Independent Resource Centre’s site and click on the link for "Disability Specific Disaster Preparedness Inventory."
Expanding your support system
- Contact the local police and fire departments and explain your situation. Describe functional needs, such as whether you use a wheelchair, need help transferring or have a service dog. Tell them you want this information to come up on the display when 911 is called from your house. That way, first responders know what to expect before they arrive.
- The more individuals looking out for you, the better. Get to know your neighbors, and ask nearby friends and family members to check on you occasionally.
- Get to know the first responders who might save your life one day. Bring them cookies and stay in contact.
Locking out the bad, letting in the good
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| Big button phones allow quick dialing. (Phone by Cortelco.) |
Give caregivers keys to your place so they can lock the door when they leave at night and can unlock it in the morning. (First make sure they’re trustworthy.)
- Give a key to a reliable neighbor.
- If you use a wheelchair, install a lowered peephole in the front door to see who’s at the front door.
- An intercom system is a great way to talk to whoever is at the front door in safety. Some intercom systems come with video. Others are available with door release, unlocking the door when the person inside pushes a button on the master device ($70-$2,190).
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| Video intercom systems such as this one by Aiphone allow you to see who’s at the door. |
Consider buying a security surveillance system. In most cases, you also have to buy a recorder and monitor and pay for installation ($90-$1,700).
- Buy a keypad that unlocks the door electronically. Usable with or without an automatic door opener, the keypad can be used in addition to a remote or key and is perfect for caregivers ($150-$1,000 plus installation).
- Lockboxes used by realtors are great for storing keys for those who know the code. Much safer than the obvious “key under the rock” trick ($20- $35).
- Although these suggestions won’t prevent disasters, they’re worth checking into and may offer some peace of mind while you’re rolling around the house naked.
See Quest Extra for more resources
Living alone: Needs change all the time
Staying flexible is the key to living independently whilst accommodating both the progression of your symptoms and Murphy’s law (“If anything can go wrong, it will”).
Sometimes you need a roommate
Chris Buhl of Sioux Falls, S.D., has lived in a three-bedroom townhouse for six years, the first two of which he lived alone.
Since then, Buhl, who has Becker muscular dystrophy (BMD) and uses a power wheelchair, has had roommates on and off.
Living alone isn’t for everyone. Or maybe it is at first. But as your neuromuscular disease progresses or there are other complications that make living alone risky, you may need to rethink your living situation.
“I feel a lot safer with other people around,” says Buhl, 28. “I took a bad fall out of my chair about two-and-a-half years ago, and since then have been trying to avoid a similar accident.”
You can’t be too careful
Don’t leap before you look. You’re bound to end up on the floor.
“I’m very conscious of what I can and can’t do,” says Buhl. “Knowing my limits and being smart about them is also a key to staying safe.”
Donna Sweany of Martinsville, Ind., lives alone but doesn’t take any chances. As her limb-girdle muscular dystrophy progressed to the point where she could no longer safely transfer by herself, she began using a SureHands ceiling lift to transfer to the bed, toilet and shower chair. Sweany, 53, is able to transfer independently without worrying about falling.
“I’m a lot more comfortable living alone now that I have the SureHands,” says Sweany.
Comfort in a wet nose
Therese Nadeau, 38, may be the only person living in her three-bedroom condo, but she’s not alone thanks to her service dog, Sassy. The black Labrador offers much more than assistance; she provides comfort.
Nadeau recalls a night when the smoke detector battery was low, and it started beeping.
“Sassy sleeps on the bed with me, and she got up out of bed, and I could see her sniffing the air,” she says. “She went around the house and came back, and she stood at the side of my bed and looked at me like, ‘We need to do something. What do you want me to do?’”
After Nadeau reassured her dog that everything was fine, Sassy jumped back on the bed and kept watch over Nadeau until morning. |
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